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MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Symptoms

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TL;DR: I reduced my MCAS symptoms—itching, hives, flushing and more—by following a comprehensive “MCAS kitchen sink protocol” combining antihistamines, mast cell stabilizers, and supplements. This post breaks down what I used and how it helped me reclaim my life.

MCAS Kitchen Sink Protocol: Illustration of a kitchen sink filled with medication bottles, supplement containers, vials, and syringes labeled “MCAS Kitchen Sink Protocol,” representing a holistic treatment strategy for mast cell activation syndrome (MCAS) with antihistamines, anti-inflammatory supplements, and immune-modulating agents.
Illustration of the MCAS Kitchen Sink Protocol, a comprehensive approach to managing mast cell activation syndrome using a variety of treatments including antihistamines, supplements, injectables, and mast cell stabilizers.

Living with mast cell activation syndrome (MCAS) can feel like fighting an invisible enemy. If you’re like me, you know how unpredictable and exhausting MCAS can be—flushing, itching, hives, headaches, nausea, fatigue, brain fog. It’s a condition where mast cells release inflammatory chemicals in response to common triggers like food, stress, hormones, or even mild infections.

For years, I felt like I was just reacting to symptoms. MCAS treatment felt impossible to personalize, and no single intervention gave lasting relief. That’s when I came across the idea of a “kitchen sink protocol” for MCAS—a layered approach using different types of medications, supplements, and lifestyle tools that work together to calm the immune system.

After trial and error—and close work with my immunologist and LLMD—I created a customized protocol that transformed my life. This post shares everything I learned: what I took, how I felt, and tips for building your own version of the protocol in partnership with your doctor.

What Is MCAS (Mast Cell Activation Syndrome)?

Mast Cell Activation Syndrome (MCAS) is a complex and often misunderstood condition where the body’s mast cells release an overload of chemical mediators—like histamine, prostaglandins, and cytokines—causing widespread inflammation and unpredictable symptoms.

Unlike classic allergies, which usually have a clear trigger and reaction pattern, MCAS symptoms can vary daily and affect multiple systems, including:

  • Skin: itching, rashes, hives, flushing
  • Digestive tract: nausea, abdominal pain, diarrhea
  • Nervous system: brain fog, migraines, anxiety
  • Cardiovascular system: lightheadedness, rapid heart rate
  • Musculoskeletal system: fatigue, joint pain
Infographic from the MCAS Primer listing common symptoms of mast cell activation syndrome (MCAS), including flushing, itching, hives, brain fog, nausea, fatigue, shortness of breath, palpitations, and other multi-systemic effects triggered by mast cell mediator release.
Chart from the MCAS Primer outlining the wide range of symptoms associated with mast cell activation syndrome (MCAS), affecting multiple body systems including skin, gastrointestinal, respiratory, neurological, and cardiovascular.

Triggers can include:

  • Foods (especially high-histamine or fermented items)
  • Stress and strong emotions
  • Temperature changes
  • Infections or viruses (like COVID-19)
  • Hormonal shifts
  • Chemical exposures (like perfumes or cleaning agents)

MCAS is commonly seen in people with conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, POTS, Ehlers-Danlos Syndrome (EDS), and mold illness. Diagnosing it can be tricky, and many people go years without answers.

My Struggles with Chronic MCAS Symptoms

Before I found a way to manage my MCAS, my life was ruled by symptoms I didn’t fully understand. Some days, it felt like my body was in a constant state of emergency. I experienced chronic itching, flushing, palpitations, frequency, rashes, low grade fevers, sore throat, headaches, nausea, brain fog, swelling, reflux, diarrhea and fatigue, even when I avoided obvious triggers.

I tried all the usual treatments: rotating antihistamines, dietary changes, topical creams, and even prescription meds. But nothing seemed to bring lasting relief. I’d have short stretches of improvement, followed by major flares that left me completely wiped out.

The hardest part was the unpredictability. A food I tolerated yesterday would cause hives today. A light walk would trigger asthma and leave me bedbound for days. Managing MCAS felt like chasing a moving target, and I started to lose hope that I’d ever feel normal again.

Worse still, these symptoms didn’t exist in isolation. I live with ME/CFS, and my MCAS flare-ups often amplified the fatigue, post-exertional malaise (PEM), and brain fog I was already managing. Every day was a puzzle: What caused this flare? What can I even do about it?

That all began to shift in 2021, when I decided to take a more layered and aggressive approach. That’s when I started building what I now call my “MCAS Kitchen Sink Protocol.

What Is the MCAS Kitchen Sink Protocol?

When it comes to treating MCAS, there’s rarely a one-size-fits-all solution. For me, the turning point came when I stopped waiting for a single magic fix and began combining multiple tools to calm my overactive immune system.

This layered approach—what my doctors referred to as throwing the kitchen sink is the MCAS Kitchen Sink Protocol—targets different aspects of mast cell activation, histamine release, and systemic inflammation. It’s designed to block mediators, prevent flares, and support the body through MCAS-specific supplements, medications, and natural compounds.

I built this protocol with the help of my immunologist and Lyme-literate doctor (LLMD), tailoring it over time based on what worked and what didn’t. Here’s a breakdown of the four core “stacks” I used:

Stack 1: Antihistamines for MCAS Relief

Antihistamines are the frontline defense against histamine overload, a major cause of MCAS symptoms like rashes, itching, flushing, and digestive upset.

There are two primary types:

  • H1 blockers – Target symptoms like itching and skin irritation
    • Examples: cetirizine (Zyrtec), loratadine (Claritin), diphenhydramine (Benadryl)
  • H2 blockers – Help with GI-related symptoms like nausea, reflux, and stomach pain
    • Examples: famotidine (Pepcid), ranitidine (Zantac, discontinued in some areas)

Most people need both H1 and H2 blockers to get full coverage.

Stack 2: Mast Cell Stabilizers

These treatments calm mast cells and reduce their likelihood of releasing inflammatory mediators. They’re especially useful when you’re highly sensitive or experiencing daily flares.

  • Cromolyn sodium (Gastrocrom) – Oral mast cell stabilizer often taken before meals
  • Ketotifen – A prescription antihistamine with mast cell stabilizing properties

These agents work more proactively than reactively, helping stabilize your baseline over time.

Stack 3: Supplements for MCAS Support

This stack includes compounds with natural anti-inflammatory, antioxidant, or mast cell stabilizing effects. While supplements aren’t a replacement for medication, they’re often critical support tools.

Some that helped me:

  • Quercetin – A bioflavonoid that inhibits histamine release
  • Luteolin – Antioxidant with neuroprotective effects
  • Magnesium glycinate – Helps calm the nervous system and supports better sleep and muscle function.
  • PEA (Palmitoylethanolamide) – For neuroinflammation and pain regulation.
  • DAO Enzyme – Taken before meals to reduce food-triggered histamine responses.
  • Vitamin C – Histamine-lowering and immune-supporting
  • Vitamin D – Regulates immune function and inflammation
  • Resveratrol – Antioxidant with mast cell modulating potential

Always check for filler sensitivities and start slow—some MCAS patients react even to “hypoallergenic” formulas.

Stack 4: Other Helpful Agents

These are extra tools I layered in to manage symptoms and improve quality of life, depending on what I needed most.

Examples include:

  • Low-Dose Naltrexone (LDN) – Helps modulate immune activity
  • Chinese Skullcap (tea or extract) – Herbal support with anti-inflammatory effects
  • Aimovig – A CGRP inhibitor I used for related migraine symptoms
  • Xolair –  a monoclonal antibody that reduces the sensitivity of mast cells to allergens and other triggers

This category is flexible. It can also include antimicrobials (if MCAS is triggered by infections), mold binders, or gut health supports depending on your case.

Customizing the Protocol

There’s no exact formula. What helped me was introducing one stack at a time, monitoring symptoms, and slowly layering in the rest.

Your ideal stack might look different based on your triggers, comorbid conditions, and medication access. But the idea is the same: hit MCAS from multiple angles, not just one.

How I Used the Kitchen Sink Protocol to Calm My MCAS

I started using the Kitchen Sink Protocol in 2021, shortly after a COVID reinfection made my already-bad MCAS symptoms spiral out of control. Every day felt like survival mode—flaring skin, relentless itching, crushing fatigue, and intense brain fog. I needed a reset, fast.

That’s when I committed to a structured, multi-pronged MCAS program treatment plan. Here’s what I did:

My Personal MCAS Protocol

  • Stack 1 (Antihistamines):
    I took cetirizine (10 mg) and famotidine (20 mg) twice daily—morning and evening. This helped calm my histamine-driven symptoms like itching, flushing, reflux, and post-meal flares.
  • Stack 2 (Mast Cell Stabilizers):
    I used cromolyn sodium (200 mg) before every meal and snack, and added ketotifen (3 mg) three times daily. These gave me much-needed stability by reducing my daily flare frequency.
  • Stack 3 (Supplements):
    I took quercetin (500 mg)vitamin C (1000 mg), and luteolin twice daily. Over time, these helped lower background inflammation and supported a more stable baseline. I also took DAO Enzyme (Diamine Oxidase) before meals which helps break down dietary histamine.
  • Stack 4 (Other Agents):
    I added Aimovig every four weeks for migraines, low-dose naltrexone (4.5 mg) daily to help regulate immune overactivation, and drank herbal tea with Chinese skullcap for its calming, anti-inflammatory effects. For a time, I also used Xolair (omalizumab) injections, a biologic sometimes prescribed off-label for MCAS. It initially provided noticeable symptom relief. However, I had to pause my beta blocker—a medication I rely on to manage hyperadrenergic POTS (hyperPOTS)—in order to receive the injections. That interruption destabilized my autonomic nervous system, causing a resurgence of symptoms like tachycardia, dizziness, and blood pressure swings. As a result, I ultimately had to discontinue Xolair, despite its potential benefits for MCAS.

The Results: What Changed for Me

It didn’t happen overnight. But within a few weeks of consistency, I started to feel the shift:

  • 🔻 Itching and flushing decreased dramatically.
    I used to break out into hives or redness from the smallest triggers—heat, foods, stress, petting my dogs. Now, those episodes are rare, and much milder when they do happen.
  • ⚡ Energy levels improved.
    I stopped feeling like my body was in crisis 24/7. I began to have stretches of real stamina—enough to have a full conversation without crashing.
  • 🧠 Brain fog lifted.
    For the first time in years, I could think clearly. I was able to watch tv, converse with my partner, and even write this blog post with a mind that felt like mine again.
  • 💚 My mood stabilized.
    The hopelessness I used to feel every morning started to fade. With better symptom control came real hope—and that changed everything.

Why This Worked for Me

I believe this protocol worked because it didn’t rely on a single treatment. It addressed multiple MCAS pathways—histamine, mast cell stability, inflammation, immune modulation—all at once.

And just as importantly:
✅ I listened to my body
✅ I worked with medical professionals
✅ I adjusted dosages and combinations slowly
✅ I tracked my responses carefully

This approach isn’t a miracle cure. But for me, it was a major turning point. I finally started feeling like I was managing MCAS—not just reacting to it.

Tips for Getting Started with Your Own MCAS Protocol

If you’re ready to try a multi-layered approach to managing MCAS, here are some lessons I learned that might help you build your own version of the Kitchen Sink Protocol:

🔄 1. Start Low and Go Slow

Many people with MCAS are extremely sensitive—even to things meant to help. Start with small doses, especially with supplements, and introduce one intervention at a time. Give your body space to respond.

👨‍⚕️ 2. Work With a Doctor Who Understands MCAS

If possible, find a practitioner who has experience treating mast cell disorders or chronic complex illnesses like ME/CFS or Long COVID. They can help guide you through medication options, interactions, and lab monitoring.

📓 3. Track Your Symptoms and Triggers

Keeping a daily log of what you eat, take, and experience can help you uncover hidden triggers and track whether a new intervention is helping or causing issues. I used a spreadsheet at first, then moved to an app.

🧪 4. Prioritize Tolerance Over Trendiness

It’s easy to get caught up in what’s “supposed” to help—especially in online forums—but always listen to your body first. Just because something works for others doesn’t mean it’s right for you.

🛍️ 5. Watch for Fillers and Additives

People with MCAS often react to dyes, preservatives, or binders in meds and supplements. Look for clean, hypoallergenic formulas and work with a compounding pharmacy if needed.

Final Thoughts: Hope, Not Hype

Living with MCAS can feel isolating, confusing, and exhausting. I know the fear that comes with eating a new food, trying a new supplement, or simply waking up unsure of what your body will do.

This protocol didn’t cure my MCAS—but it gave me my life back. It helped me break the cycle of constant flares and unpredictability. It taught me how to manage my condition, advocate for myself, and reclaim some peace of mind.

🙌 If you’re just beginning this journey:

Know that you’re not alone—and that a personalized, layered treatment approach might offer you more relief than you imagined possible.

If you have questions, want to share your story, or just need someone to compare notes with, feel free to leave a comment or email me directly. I’d love to hear from you.


What is the kitchen sink protocol for MCAS?

The “kitchen sink protocol” is a comprehensive treatment approach for mast cell activation syndrome (MCAS) that uses multiple types of interventions—including antihistamines, mast cell stabilizers, supplements, and other agents—to calm mast cell activity and reduce symptoms. It’s highly customizable based on each person’s triggers, sensitivities, and comorbid conditions.

Can supplements really help with MCAS?

Yes, certain supplements have anti-inflammatory or mast cell-stabilizing properties that may help reduce symptoms. Commonly used supplements include quercetin, luteolin, vitamin C, resveratrol, and vitamin D. Always consult a doctor before starting any new supplement, especially if you have MCAS, due to potential sensitivities.

What are the best antihistamines for MCAS?

Most people with MCAS benefit from using both types of antihistamines:
H1 blockers like cetirizine or loratadine
H2 blockers like famotidine or ranitidine
Combining them provides broader symptom coverage for issues like skin reactions, GI problems, and flushing.

How long does it take for the protocol to work?

It varies. Some people notice improvements within a few days, while others take weeks or months to stabilize. In my case, I started seeing meaningful changes after a few weeks of consistent use—especially once I found the right combination and dosages.

Is the kitchen sink protocol a cure for MCAS?

No, it’s not a cure. MCAS is a chronic condition, and the goal of the protocol is symptom management, not elimination. However, many people—including myself—have found significant, lasting relief by using a layered approach to calm mast cell overactivity.


Sources:

Prescriptions

NameFrequencyWhy?
Cromolyn Sodiuma.c.MCAS: mast cell stabilizer
Cyproheptadineq.h.s.MCAS: h1 blocker and ability to block serotonin receptors
Famotidine 20mgb.i.d.MCAS: h2 blocker
Hydroxyzine* 25mg, 50-75mga.c., q.h.s.MCAS: h1 blocker
Ketotifen 3mgt.i.d.MCAS: mast cell stabilizer
Montelukast 10mgq.h.s.MCAS: allergic asthma
Naltrexone, low dose 4.5mgq.d.Reduce T cell dysfunction (T cell micro parts activate mast cells)
Zofranprn.MCAS: 5-HT3 blocker

OTCs

NameFrequencyWhy?
Benadryl 25mgprn.MCAS: anti-histamine
Claritin* / Xyzal*q.h.s.MCAS: 2nd gen h1 blocker
Zyrtec* 20mg / Allegra*q.d.MCAS: 2nd gen h1 blocker

*Every 60-90 days rotate Zyrtec or Allegra, Claritin or Hydroxyzine or Xyzal

Supplements

NameFrequencyWhy?
Liposomal Glutathioneq.d.MCAS: reduces oxidative stress, stabilizes immune responses, and protects tissues from inflammation
Liposomal Vitamin C 500mgq.d.MCAS: breakdown histamine, stabilize mast cells
Luteolin 100mgb.i.d.MCAS: prevents mast cell degranulation
NAC 600mgq.d.MCAS: antioxidant, anti-inflammatory, and immune-modulating properties
Palmitoylethanolamide (PEA)q.d.MCAS: PEA helps downregulate mast cell degranulation and the release of inflammatory mediators like histamine and cytokines
Quercetin 250-500mgb.i.d.MCAS: stabilize mast cells
Umbrellux DAOa.c.MCAS: break down food derived histamine
Vitamin C 500mg/75mg bioflavonoidsq.d.MCAS: breakdown histamine, stabilize mast cells
Vitamin D 5000 IUq.d.MCAS:

Intravenous

NameFrequencyWhy?
Benadryl IVprn.MCAS: anti-histamine

Injection

NameFrequencyWhy?
Aimovig 70mgq.4weekChronic Migraines: CGRP inhibitor, CGRP involved in mast cell degranulation
Epi-penprn.MCAS: Anaphylaxis
Xolair 300mg/mlq.4week/MCAS: a monoclonal antibody that reduces the sensitivity of mast cells to allergens and other triggers

Nasal Inhalation

NameFrequencyWhy?
Xhance Nasal Spray 93mcgb.i.d.MCAS: help w nasal swelling

Cromolyn Sodium: Cromolyn sodium is a mast cell stabilizer that can help prevent the release of histamine and other inflammatory mediators from mast cells. It can help reduce symptoms such as flushing, itching, abdominal pain, nausea, and diarrhea. Cromolyn sodium is usually taken orally before meals and at bedtime. It may take several weeks to see the full effect of this medication. [1]“Cromolyn Sodium – FDA Prescribing Information,” Drugs.com, https://www.drugs.com/pro/cromolyn-sodium.html.

Cyproheptadine: Cyproheptadine can be a helpful medication for managing mast cell activation syndrome (MCAS), especially when symptoms include both histamine and serotonin-related effects. As an H1 antihistamine, it helps block the effects of histamine released by mast cells, reducing symptoms like itching, hives, and flushing [2]Simons, “Advances in H1-Antihistamines,” New England Journal of Medicinehttps://doi.org/10.1056/NEJMra033121. It also blocks serotonin receptors, which may ease nausea, abdominal pain, and other gastrointestinal symptoms that often accompany MCAS [3]Kettelhut et al., “Cyproheptadine in the Treatment of Functional Gastrointestinal Disorders,” Pediatric Drugshttps://doi.org/10.1007/s40272-015-0132-6

Its sedating and appetite-stimulating properties can further support patients dealing with sleep disruption or appetite loss due to chronic inflammation [4]Afrin, Never Bet Against Occam, Sisters Media, 2016. Though not usually the first medication tried, cyproheptadine is a useful addition when standard antihistamines aren’t enough or when serotonin-driven symptoms are significant [5]Kaplan, Mast Cell Disorders, Humana Press, 2011.

Famotidine 20mg: Famotidine is an H2 antihistamine that can help block the action of histamine in the stomach and reduce gastric acid production. This can help with gastrointestinal symptoms such as heartburn, indigestion, and ulcers. Famotidine can also help with overall mast cell stability and reduce symptoms such as flushing, headache, and brain fog. Famotidine is usually taken once or twice daily, with or without food. [6]“Famotidine: 7 Things You Should Know,” Drugs.com, https://www.drugs.com/tips/famotidine-patient-tips.

Hydroxyzine 25mg, 50–75mg: Hydroxyzine is an H1 antihistamine that can help reduce the effects of histamine on the skin, eyes, nose, mouth, throat, and lungs. It can help with itching, hives, swelling, runny nose, sneezing, and wheezing. Hydroxyzine can also have a sedating effect and help with anxiety, insomnia, and nervousness. Hydroxyzine is usually taken three or four times a day, as needed.

[7]“What Is the Medicine Hydroxyzine Pam 25 mg Used For?,” Healthfully, https://healthfully.com/medicine-25-mg-used-for-5113874.html. [8]“Hydroxyzine Uses, Dosage & Side Effects,” Drugs.com, https://www.drugs.com/hydroxyzine.html. [9]“Hydroxyzine: View Uses, Side Effects and Medicines,” 1mg, https://www.1mg.com/generics/hydroxyzine-210013.

Ketotifen 3mg: Ketotifen is a dual-action medication that acts as both an H1 antihistamine and a mast cell stabilizer. It can help prevent and treat symptoms such as itching, flushing, hives, swelling, abdominal pain, nausea, diarrhea, and anaphylaxis. Ketotifen can also help with brain fog and cognitive function by crossing the blood-brain barrier. Ketotifen is usually taken twice a day, in the morning and evening.

[10]“Ketotifen for Mast Cell Activation Syndrome (MCAS),” Park Compounding Pharmacy, https://www.parkcompounding.com/ketotifen-mast-cell-activation-syndrome/. [11]“MCAS: Treatment,” Mast Attack, https://www.mastattack.org/2014/10/mcas-treatment/.

Montelukast 10mg: Montelukast is a leukotriene inhibitor that can help block the action of leukotrienes, which are inflammatory mediators released by mast cells and other cells. Leukotrienes can cause symptoms such as bronchoconstriction, mucus production, nasal congestion, and asthma attacks. Montelukast can help with respiratory symptoms and overall mast cell stability. Montelukast is usually taken once a day in the evening. [12]“Montelukast: View Uses, Side Effects and Medicines,” 1mg, https://www.1mg.com/generics/montelukast-210304.

Naltrexone, low dose 4.5mg: Naltrexone is an opioid antagonist that can help modulate the immune system and reduce inflammation by blocking the opioid receptors on mast cells and other cells. Naltrexone can help lower the release of histamine and other mediators from mast cells and improve symptoms such as pain, fatigue, mood swings, and brain fog. Naltrexone is usually taken at a low dose of 4.5mg once a day at night. [13]“What Is Low Dose Naltrexone (LDN)?,” Drugs.com, https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/.

Zofran: Zofran is an antiemetic medication that can help prevent and treat nausea and vomiting caused by various triggers, including mast cell activation. Zofran works by blocking the action of serotonin on the receptors in the brain and the gut that control nausea and vomiting. Zofran can also help with abdominal pain and diarrhea by reducing intestinal motility. Zofran can be taken orally or intravenously as needed or before exposure to a known trigger. [14]“Zofran: Package Insert / Prescribing Information,” Drugs.com, https://www.drugs.com/pro/zofran.html.

Benadryl 25mg: Benadryl is an H1 antihistamine that can help reduce the effects of histamine on the skin, eyes, nose, mouth, throat, and lungs[15]“Diphenhydramine (Benadryl): Antihistamine for Allergy Relief,” Drugs.com, https://www.drugs.com/benadryl.html. It can help with symptoms such as itching, hives, swelling, runny nose, sneezing, and wheezing[16]“Diphenhydramine: Uses, Side Effects, and Warnings,” Mayo Clinic, https://www.mayoclinic.org/drugs-supplements/diphenhydramine-oral-route/description/drg-20070561. Benadryl can also have a sedating effect and help with anxiety and insomnia[17]“Benadryl for Sleep: Can You Use It?,” Medical News Today, https://www.medicalnewstoday.com/articles/benadryl-for-sleep. Benadryl is usually taken every four to six hours as needed or before exposure to a known trigger[18]“Diphenhydramine (Oral Route),” Mayo Clinic, https://www.mayoclinic.org/drugs-supplements/diphenhydramine-oral-route/proper-use/drg-20070561.

Claritin / Xyzal: Claritin and Xyzal are second-generation H1 antihistamines that can help reduce the effects of histamine on the skin, eyes, nose, mouth, throat, and lungs[19]“Loratadine (Claritin),” Drugs.com, https://www.drugs.com/loratadine.html; “Levocetirizine (Xyzal),” Drugs.com, https://www.drugs.com/mtm/xyzal.html. They can help with symptoms such as itching, hives, swelling, runny nose, sneezing, and wheezing[20]“Second-Generation Antihistamines,” American Academy of Allergy, Asthma & Immunology, https://www.aaaai.org/tools-for-the-public/allergy-/drug-guide/antihistamines.

Claritin and Xyzal have less sedating effects than first-generation antihistamines and may also help with brain fog and cognitive function[21]Simons, F.E.R. “Advances in H1-antihistamines,” New England Journal of Medicine, 2004. https://www.nejm.org/doi/full/10.1056/NEJMra033121. Claritin and Xyzal are usually taken once a day, with or without food[22]“How to Take Xyzal and Claritin,” Healthline, https://www.healthline.com/health/allergies/xyzal-vs-claritin.

Zyrtec 20mg / Allegra: Zyrtec (cetirizine) and Allegra (fexofenadine) are second-generation H1 antihistamines that can help reduce the effects of histamine on the skin, eyes, nose, mouth, throat, and lungs. They can help with symptoms such as itching, hives, swelling, runny nose, sneezing, and wheezing [23]Cleveland Clinic. “Antihistamines.” Cleveland Clinic, last modified October 13, 2023. https://my.clevelandclinic.org/health/treatments/antihistamines. Zyrtec and Allegra may have more antihistamine potency than Claritin and Xyzal but may also cause more drowsiness and dry mouth [24]Drugs.com. “What’s the Difference Between Allegra and Zyrtec?” Drugs.com, last updated March 3, 2022. https://www.drugs.com/medical-answers/allegra-zyrtec-difference-3130012. Zyrtec is generally considered more sedating, while Allegra is less likely to cross the blood-brain barrier and is thus less likely to cause drowsiness [25]Drugs.com. “Allegra (Fexofenadine) – Side Effects, Dosage, and More.” Drugs.com, accessed May 28, 2025. https://www.drugs.com/allegra.html. Both medications are usually taken once a day, with or without food, but according to my specialist, the dosage can be increased to twice daily if needed [26]GoodRx. “Zyrtec Dosage: How Much Should I Take?” GoodRx, last modified March 14, 2023. https://www.goodrx.com/zyrtec/dosage.

Liposomal Glutathione: Glutathione, often referred to as the body’s “master antioxidant,” plays a critical role in supporting individuals with mast cell activation syndrome (MCAS) by reducing oxidative stress, stabilizing immune responses, and protecting tissues from inflammation. In MCAS, mast cells become overly reactive and release mediators like histamine, prostaglandins, and cytokines inappropriately. This process is often worsened by oxidative stress, which can trigger mast cell degranulation. Glutathione neutralizes reactive oxygen species (ROS), helping to prevent this chain reaction and reduce mast cell activation [27]Pizzino et al., “Oxidative Stress: Harms and Benefits for Human Health,” Oxidative Medicine and Cellular Longevityhttps://doi.org/10.1155/2017/8416763.

Furthermore, glutathione helps regulate immune function and inflammation by modulating redox-sensitive signaling pathways such as NF-κB, which is commonly activated in chronic inflammatory states like MCAS. By maintaining redox balance, glutathione can reduce inappropriate immune signaling and downstream mediator release [28]Forman et al., “Glutathione: Overview of Its Protective Roles, Measurement, and Biosynthesis,” Molecular Aspects of Medicinehttps://doi.org/10.1016/j.mam.2008.08.006. Many individuals with MCAS also struggle with detoxification issues due to genetic variations or chronic inflammation. Glutathione supports phase II liver detoxification and helps eliminate toxins that might otherwise provoke mast cell reactions [29]Ballatori et al., “Glutathione Dysregulation and the Etiology and Progression of Human Diseases,” Biological Chemistryhttps://doi.org/10.1515/BC.2009.033.

For some patients, direct glutathione supplementation or the use of precursors like N-acetylcysteine (NAC) can help restore deficient levels and improve symptoms. Overall, maintaining adequate glutathione levels is a foundational strategy in MCAS protocols aimed at lowering reactivity and promoting immune resilience.

Liposomal Vitamin C 500mg: Liposomal vitamin C is a form of vitamin C that is encapsulated in liposomes, which are tiny spheres of fat that protect the vitamin C from degradation and enhance its absorption in the gut [30]Amy Myers MD. “Liposomal Vitamin C – Bioavailable Liquid.” Amy Myers MD. Accessed May 28, 2025. https://store.amymyersmd.com/products/liposomal-vitamin-c. Vitamin C is an antioxidant that can help prevent oxidative damage to cells and tissues caused by free radicals and inflammation [31]Hemilä, Harri. “Vitamin C and Infections.” Nutrients 9, no. 4 (2017): 339. https://doi.org/10.3390/nu9040339. Vitamin C can also help lower histamine levels by supporting the production of the histamine-degrading enzyme DAO [32]Maintz, Laura, and Natalija Novak. “Histamine and Histamine Intolerance.” The American Journal of Clinical Nutrition 85, no. 5 (2007): 1185–1196. https://doi.org/10.1093/ajcn/85.5.1185. Liposomal vitamin C is usually taken once or twice a day, preferably on an empty stomach [33]Amy Myers MD. “Liposomal Vitamin C – Bioavailable Liquid.” Amy Myers MD. Accessed May 28, 2025. https://store.amymyersmd.com/products/liposomal-vitamin-c.

Luteolin 100mg: Luteolin is a flavonoid that can help modulate the immune system and reduce inflammation by inhibiting the activation and release of mast cells and other inflammatory cells [34]Theoharides, Theoharis C., Julia Alysandratos, Dimitrios Angelidou, Bodi Zhang, Magda Asadi, Magdalini Francis, and R. E. Kalogeromitros. 2015. “Luteolin as a Therapeutic Option for Mast … Continue reading. Luteolin can also help lower histamine levels by blocking the action of histamine on the H1 receptors [35]Healing Histamine. “Luteolin for Mast Cells, Histamine and Brain Fog?” Healing Histamine. Accessed May 28, 2025. … Continue reading. Luteolin can help with symptoms such as flushing, itching, hives, swelling, abdominal pain, nausea, diarrhea, and brain fog [36]Theoharides, Theoharis C., Julia Alysandratos, Dimitrios Angelidou, Bodi Zhang, Magda Asadi, Magdalini Francis, and R. E. Kalogeromitros. 2015. “Luteolin as a Therapeutic Option for Mast … Continue reading. Luteolin is usually taken once or twice a day, with or without food [37]Healing Histamine. “Luteolin for Mast Cells, Histamine and Brain Fog?” Healing Histamine. Accessed May 28, 2025. … Continue reading.

N-Acetylcysteine (NAC): N-Acetylcysteine (NAC) may be a valuable adjunct in managing mast cell activation syndrome (MCAS) due to its antioxidant, anti-inflammatory, and immune-modulating properties. One of its key functions is serving as a precursor to glutathione, the body’s master antioxidant, which helps neutralize oxidative stress—a known trigger for mast cell degranulation. By increasing intracellular glutathione, NAC helps stabilize mast cells and potentially reduces the release of histamine and other inflammatory mediators [38]Atkuri et al., “N-Acetylcysteine—A Safe Antioxidant for Clinical Use,” Current Opinion in Pharmacologyhttps://doi.org/10.1016/j.coph.2007.08.005.

NAC also plays a role in modulating inflammation by inhibiting nuclear factor kappa B (NF-κB), a critical transcription factor involved in pro-inflammatory signaling pathways. This is particularly important for MCAS patients, whose immune systems often overreact to benign stimuli [39]Rushworth and Megson, “Existing and Potential Therapeutic Uses for N-Acetylcysteine,” Pharmacology & Therapeuticshttps://doi.org/10.1016/j.pharmthera.2013.03.006. In addition, NAC supports liver detoxification and can aid patients with chemical sensitivities or impaired biotransformation pathways. Its mucolytic properties may also benefit those with MCAS-related respiratory symptoms. Overall, NAC’s broad-spectrum actions make it a supportive option for many living with MCAS [40]Samuni et al., “The Chemistry and Biological Activities of N-Acetylcysteine,” Biochimica et Biophysica Actahttps://doi.org/10.1016/j.bbagen.2012.10.005.

Palmitoylethanolamide (PEA): Palmitoylethanolamide (PEA) is a naturally occurring fatty acid amide that shown promise in the management of mast cell activation syndrome (MCAS) due to its anti-inflammatory, analgesic, and mast cell-modulating properties. PEA works by interacting with several cellular receptors and mechanisms, notably the peroxisome proliferator-activated receptor alpha (PPAR-α), which plays a key role in reducing inflammation and immune dysregulation. Through this pathway, PEA helps downregulate mast cell degranulation and the release of inflammatory mediators like histamine and cytokines, which are central to MCAS symptoms [41]Petrosino and Di Marzo, “The Pharmacology of Palmitoylethanolamide and First Data on the Therapeutic Efficacy of Some of Its New Formulations,” British Journal of … Continue reading.

Additionally, PEA has demonstrated a strong safety profile and is well tolerated even in sensitive populations, which makes it a suitable adjunct to more conventional MCAS therapies like antihistamines or mast cell stabilizers. Some clinical and preclinical studies have observed benefits in reducing neuroinflammation, pain, and allergic responses, which may be particularly relevant for MCAS patients dealing with systemic symptoms [42]Facci et al., “Mast Cells Express a Peripheral Cannabinoid Receptor with Differential Sensitivity to Anandamide and Palmitoylethanolamide,” Proceedings of the National Academy of … Continue reading.

In summary, PEA may offer a multifaceted approach to managing MCAS by supporting immune balance, reducing mast cell reactivity, and alleviating chronic inflammation and pain.

Quercetin 250–500mg: Quercetin is a flavonoid that can help modulate the immune system and reduce inflammation by inhibiting the activation and release of mast cells and other inflammatory cells.

[43]Andrea Czompa et al., “Quercetin: A Powerful Antioxidant and Anti-inflammatory Agent,” Current Opinion in Food Science 24 (2018): 58–66, https://doi.org/10.1016/j.cofs.2018.11.00.

Quercetin can also help lower histamine levels by supporting the production of the histamine-degrading enzyme DAO and blocking the action of histamine on the H1 receptors. Quercetin can help with symptoms such as flushing, itching, hives, swelling, abdominal pain, nausea, diarrhea, and brain fog. Quercetin is usually taken once or twice a day, preferably on an empty stomach.

[44]Jiří Mlček et al., “Quercetin and Its Anti-Allergic Immune Response,” Molecules 21, no. 5 (2016): 623, https://doi.org/10.3390/molecules21050623.

[45]“Quercetin for MCAS,” Through the Fibro Fog, accessed May 28, 2025, https://www.throughthefibrofog.com/quercetin-supplement/.

[46]“Umbrellux DAO – What You Need to Know,” Healthy Habits Living, accessed May 28, 2025, https://www.healthyhabitsliving.com/blogs/be-healthy/umbrellux-dao-what-you-need-to-know.

Umbrellux DAO: Umbrellux DAO is a supplement that contains DAO, the enzyme that breaks down histamine in the gut. Umbrellux DAO can help lower histamine levels by enhancing the metabolism of dietary histamine and preventing its absorption into the bloodstream. Umbrellux DAO can help with symptoms such as flushing, itching, hives, swelling, abdominal pain, nausea, diarrhea, and headache. Umbrellux DAO is usually taken 15 to 20 minutes before a meal that contains histamine-rich foods.

Vitamin C 500mg/75mg bioflavonoids: Vitamin C with bioflavonoids is a combination of vitamin C and plant compounds that have antioxidant and anti-inflammatory properties. Vitamin C can help lower histamine levels by supporting the production of the histamine-degrading enzyme DAO. [47]C. A. B. Clemetson, “Histamine and Ascorbic Acid in Human Blood,” Free Radical Biology and Medicine 8, no. 1 (1980): 19–25, https://doi.org/10.1016/0891-5849(80)90153. Bioflavonoids can help stabilize mast cells and prevent the release of histamine and other mediators. Vitamin C with bioflavonoids can help with symptoms such as flushing, itching, hives, swelling, abdominal pain, nausea, diarrhea, and brain fog. Vitamin C with bioflavonoids is usually taken once or twice a day, with or without food.

Vitamin D 5000 IU: According to some sources, vitamin D may help MCAS by stabilizing mast cells, regulating the immune system, and functioning as an anti-inflammatory.

[48]“Will Vitamin D Help or Hurt You if You Have Mast Cell Activation Syndrome or Histamine Intolerance?,” Mast Cell 360, accessed May 28, 2025, … Continue reading

[49]Tania Dempsey, “The Metabolic Syndrome Puzzle: The Vitamin D and MCAS Connection,” Dr. Tania Dempsey, accessed May 28, 2025, … Continue reading

Vitamin D interacts with mast cells to make them less reactive and less likely to activate inappropriately.

[50]Tania Dempsey, “The Metabolic Syndrome Puzzle: The Vitamin D and MCAS Connection,” Dr. Tania Dempsey, accessed May 28, 2025, … Continue reading

In the absence of the necessary vitamin D, mast cells may lack this calming influence and become more prone to confusion and overreaction.

[51]Tania Dempsey, “The Metabolic Syndrome Puzzle: The Vitamin D and MCAS Connection,” Dr. Tania Dempsey, accessed May 28, 2025, … Continue reading

However, vitamin D levels should be checked and supplemented appropriately, as too much or too little vitamin D may have adverse effects on health.

[52]“Will Vitamin D Help or Hurt You if You Have Mast Cell Activation Syndrome or Histamine Intolerance?,” Mast Cell 360, accessed May 28, 2025, … Continue reading

Aimovig 70mg: Aimovig is a monoclonal antibody that blocks the action of calcitonin gene-related peptide (CGRP), a molecule that is involved in migraine pathophysiology. Aimovig can help prevent migraine attacks by reducing the activation of trigeminal nerve fibers and mast cells that trigger pain and inflammation in the brain. Aimovig can also help reduce migraine frequency, severity, and duration. Aimovig is usually injected subcutaneously once a month. [53]Aimovig: 7 things you should know – Drugs.com. https://www.drugs.com/tips/aimovig-patient-tips.

Epi-pen: Epi-pen is an auto-injector that delivers epinephrine (adrenaline), a hormone that counteracts the effects of severe allergic reactions (anaphylaxis). Epi-pen can help reverse symptoms such as low blood pressure, rapid heart rate, difficulty breathing, swelling in the throat, and loss of consciousness. Epi-pen is used as an emergency treatment for anaphylaxis and should be followed by immediate medical attention. Epi-pen is injected into the outer thigh muscle as soon as possible after exposure to a known or suspected trigger.

[54]“How to Use Your EpiPen,” American Academy of Allergy, Asthma & Immunology, accessed May 28, 2025, … Continue reading

Xolair 150mg/ml: Xolair (omalizumab) is a monoclonal antibody that specifically binds to immunoglobulin E (IgE), a key antibody involved in triggering allergic reactions. By binding to IgE, Xolair prevents it from attaching to mast cells and basophils, which are immune cells responsible for releasing histamine and other inflammatory mediators during allergic responses. This action helps reduce the frequency and severity of allergic symptoms, including those seen in mast cell activation syndrome (MCAS) and chronic spontaneous urticaria. Xolair is administered by subcutaneous injection, usually once every 2 to 4 weeks, under the supervision of a healthcare provider. It is typically reserved for patients with moderate to severe allergic conditions who do not respond adequately to standard treatments. Common side effects may include injection site reactions, headaches, and an increased risk of infections. Because Xolair affects the immune system, it requires careful monitoring by a specialist. [55]“Xolair (Omalizumab) Injection,” U.S. National Library of Medicine, last updated March 9, 2023, https://medlineplus.gov/druginfo/meds/a604035.html.

IV Benadryl: IV Benadryl is a brand name for diphenhydramine, a first-generation H1 antihistamine that helps reduce the effects of histamine on the skin, eyes, nose, mouth, throat, and lungs. It is effective in relieving symptoms such as itching, hives, swelling, runny nose, sneezing, and wheezing. Additionally, IV Benadryl has sedative properties that can aid with anxiety and insomnia. It is typically administered every four to six hours as needed or prior to exposure to a known allergen or trigger. [56]“Diphenhydramine Injection,” U.S. National Library of Medicine, last updated August 24, 2023, https://medlineplus.gov/druginfo/meds/a682539.html.

IV Benadryl is also utilized in severe cases of mast cell activation syndrome (MCAS) due to its ability to block histamine release and other inflammatory mediators from mast cells. By rapidly suppressing mast cell activation, it can reverse critical symptoms such as hypotension (low blood pressure), respiratory distress, and anaphylaxis. Furthermore, IV Benadryl helps stabilize mast cells, reducing the risk of rebound symptoms as the medication wears off. In life-threatening MCAS, it may be administered as a continuous infusion under close medical supervision to maintain symptom control. [57]Castells M., “Mast Cell Activation Syndrome and Treatment,” Immunology and Allergy Clinics of North America 38, no. 3 (2018): 417–431, https://doi.org/10.1016/j.iac.2018.03.003.

References

References
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33 Amy Myers MD. “Liposomal Vitamin C – Bioavailable Liquid.” Amy Myers MD. Accessed May 28, 2025. https://store.amymyersmd.com/products/liposomal-vitamin-c
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37 Healing Histamine. “Luteolin for Mast Cells, Histamine and Brain Fog?” Healing Histamine. Accessed May 28, 2025. https://www.healinghistamine.com/blog/luteolin-for-mast-cells-histamine-and-brain-fog/
38 Atkuri et al., “N-Acetylcysteine—A Safe Antioxidant for Clinical Use,” Current Opinion in Pharmacologyhttps://doi.org/10.1016/j.coph.2007.08.005
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43 Andrea Czompa et al., “Quercetin: A Powerful Antioxidant and Anti-inflammatory Agent,” Current Opinion in Food Science 24 (2018): 58–66, https://doi.org/10.1016/j.cofs.2018.11.00.
44 Jiří Mlček et al., “Quercetin and Its Anti-Allergic Immune Response,” Molecules 21, no. 5 (2016): 623, https://doi.org/10.3390/molecules21050623.
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47 C. A. B. Clemetson, “Histamine and Ascorbic Acid in Human Blood,” Free Radical Biology and Medicine 8, no. 1 (1980): 19–25, https://doi.org/10.1016/0891-5849(80)90153.
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How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles

Reading Time: 8 minutes
Split-screen illustration showing a journey of recovery from rolling PEM. On the left, a woman lies in bed under the label “Rolling PEM,” representing illness and exhaustion. On the right, the same woman sits upright in a wheelchair, smiling, under the label “Life After,” symbolizing improved quality of life. Below, bold text reads: “How I Recovered from Rolling PEM – Life After Crash Cycles. Read the Blog Post.”
Visual representation of recovery from rolling PEM: from bedridden days to regaining stability and joy. Read Part 3 of the journey on the blog.

If you’re deep in post-exertional malaise, I need you to know this: recovery is real. I’ve recovered from rolling PEM, and while it wasn’t linear or perfect, it changed everything. In this post, I’ll walk you through what life looks like after surviving the crash cycles that defined my existence for months.

Life Beyond Rolling PEM: How Recovery Felt Day by Day

For a long time, my world revolved around surviving the next crash. Each day brought its own landmine. I couldn’t plan, couldn’t hope, couldn’t even exhale — because rolling PEM was always looming. But once that cycle loosened its grip, something surprising happened: I started to come back to life.

In Part 1, I shared how I spiraled into rolling PEM. In Part 2, I walked through the pacing, heart rate monitoring, and recovery tools that helped me crawl out. This post — Part 3 — is about what came after. The healing. The unexpected joys. The fear of relapse. The hard-won stability that slowly (and I mean slowly) returned.

Reclaiming Basic Function After Rolling PEM

It started small. But after what I’d been through with severe ME/CFS symptoms, these small things felt monumental.

One of the first breakthroughs was tolerating my caregiver being in the room without it triggering post-exertional crashes. I could lie in bed and have her gently brush my hair — something I once had to postpone for days because it would set off a PEM flare. I could manage a bed bath without needing to recover for a week.

One of the clearest signs that something was changing came in September — the month rolling PEM finally ended. For the first time in three months, I had even a single stable day.

Line chart titled “PEM Days vs Stable Days (MoM)” showing the monthly count of days with PEM symptoms versus stable days from June to December 2021. The PEM days (pink line) are consistently high — 30 or 31 per month — from June through August. After a vertical dashed line marking the “End of Rolling PEM” in mid-September, PEM days decrease to 23 in September and fluctuate downward to 23 again by December. In contrast, stable days (red line) remain at 0 until September, then rise to 7, and gradually increase to 8 by December. The chart highlights the inverse relationship between PEM days and stable days after recovery begins.
Stability returned when rolling PEM ended — this chart shows how my crash days finally began to decrease.

These weren’t glamorous milestones. They weren’t social media-worthy. But they were everything. They were proof that my nervous system wasn’t stuck in emergency mode anymore. That maybe — just maybe — I was stabilizing.

I didn’t realize how much I’d lost until I got some of it back.

Regaining Energy and Joy After Breaking the Rolling PEM Crash Cycle

After months of fearing every movement, I started noticing moments where I didn’t feel trapped by ME/CFS or Long COVID fatigue and PEM.

I remember the first time I laid down to shower for 20 minutes and didn’t crash. The water felt different — not metaphorically, but viscerally. My body no longer interpreted it as a threat.

I began listening to meditations again. Not to manage symptoms — just because I liked them. One night, my partner and I watched a short TV episode together. And afterward, I didn’t crash. That had become so rare, it felt like a miracle.

These moments weren’t dramatic. But they were undeniable signs that my body was no longer caught in a constant crash cycle. 

Around this time, my fatigue scores started shifting — not dramatically, but consistently. I wasn’t crashing from small efforts anymore. Here’s what that looked like:

Line chart titled “Overall Fatigue Scores” showing daily fatigue ratings on a scale of 1 to 10 from July to December 2021. A vertical dashed line marks the “End of Rolling PEM” around mid-September. Before this point, scores fluctuate between 4 and 8, often erratically. After, there are fewer spikes and more consistent mid-to-low scores. A trend line shows a gradual overall decline in fatigue following the end of rolling PEM, indicating stabilization over time.
This chart tracks my daily fatigue scores from July to December 2021. During rolling PEM, my fatigue was volatile and relentless — with spikes above 7 and few signs of recovery. But in mid-September, the crashes stopped stacking. After that, the line slowly started to settle. There were still ups and downs, but the baseline was clearly shifting. This was one of the first objective signs that my quality of life was beginning to change for the better.

Another quiet but meaningful change was in my cognitive clarity. Brain fog didn’t vanish — but it stopped dominating every day.

Line chart titled “Overall Brain Fog Scores” tracking daily cognitive symptoms on a scale of 1 to 10 from July to December 2021. A vertical dashed line marks the “End of Rolling PEM” around mid-September. Before this point, scores fluctuate frequently between 5 and 8, showing significant cognitive instability. After the transition, scores begin to decline slightly with fewer extreme spikes, and a trend line shows a gradual overall improvement. The chart reflects a slow but noticeable reduction in brain fog symptoms over time.
This chart shows my daily brain fog scores from July through December 2021. During the height of rolling PEM, my cognitive clarity was unpredictable at best — often hovering above 6, with frequent spikes and crashes. After mid-September, the chaos started to ease. There were still tough days, but the sharp drops became less common and my thinking slowly became more consistent. This slow, steady improvement was one of the most meaningful changes — it allowed me to engage with the world again in a way I hadn’t been able to for years.

These shifts weren’t just emotional — they were physiological. My heart rate data told the same story: my body was spending more time in rest and recovery heart rate zones, and less in survival mode.

Bar chart titled "Average Daily Time in Heart Rate Zones (Q3–Q4 2021)" displaying monthly average daily duration in five heart rate zones: red (over exertion), orange (very hard exertion), yellow (exertion), green (recovery), and blue (rest). The chart covers July through December 2021, with noticeable increases in blue zone time during October to December.
This heart rate chart shows how my time in recovery zones increased significantly after September 2021.

In Q3, I was stuck in yellow, orange, and red zones — signs of overexertion in ME/CFS. But by Q4, I was spending far more time in blue and green zones. It didn’t mean I was “cured.” But it meant my system was no longer spiraling from every effort.

Finding My Identity and Purpose Post-Rolling PEM

Rolling PEM had stripped away so much of who I thought I was. My routines, my productivity, my confidence. But slowly, I began piecing myself back together.

Once survival wasn’t my full-time job, I started wondering who I was beyond the illness.

ME/CFS pacing and crash recovery gave me just enough bandwidth to rediscover small joys. Writing this blog became part of that — not just documenting post-exertional malaise recovery, but reconnecting with my own voice.

Pain no longer overwhelmed me daily. The highs weren’t as high. My baseline was shifting.

Line chart titled “Overall Pain Scores” showing daily pain levels from July to December 2021. The Y-axis ranges from 0 to 8, and the X-axis shows dates. A dashed vertical line marks the "End of Rolling PEM" in mid-September. Prior to this point, pain scores fluctuate widely, often spiking between 4 and 7. After the transition, scores show a downward trend with fewer extreme spikes and more days at lower pain levels. A trend line indicates a gradual overall decrease in pain following the end of rolling PEM.
Pain intensity and spikes dropped as I moved out of rolling PEM.

GI symptoms also began to calm — another reflection of autonomic nervous system stabilization.

Line chart titled “Overall Nausea & GI Scores” tracking daily symptoms from July to December 2021. The Y-axis ranges from 0 to 9, and the X-axis shows dates. A dashed vertical line marks the "End of Rolling PEM" in mid-September. Before this point, the graph shows high initial spikes (above 7) and some missing data. Symptoms become more variable but generally low after mid-August. Following the end of rolling PEM, scores remain low with only mild fluctuations, and the trend line shows a gradual decline. Overall, symptoms appear more stable and manageable post-September after I recovered from rolling PEM.
Nausea and GI distress became less frequent and less intense as my system stabilized.

Writing this blog became part of that healing. Tracking my symptoms, charting trends — it wasn’t just data. It was storytelling. It reminded me that I still had a voice, even when my body felt quiet.

I started laughing again. Not in the polite way you do when you’re masking pain, but real, spontaneous laughter — the kind that catches you off guard. I started talking with my partner about something other than symptoms. We made plans. Small ones. Safe ones. But still — plans.

Joy didn’t flood back in. It crept in. But it stayed.

Coping with the Fear of Relapse After Rolling PEM Recovery

I wish I could say I felt fearless once things improved. But that wouldn’t be honest.

It wasn’t just the healing that caught me off guard — it was the fear of losing it.

My heart rate patterns backed up what I was feeling — my nervous system was finally calming down. But even that stability made me anxious.

Line chart titled “Max HR & Avg 24 Hour HR (BPM)” showing daily heart rate trends from July to December 2021. The purple line represents maximum daily heart rate, with frequent spikes over 140 bpm before mid-September. The red line represents average 24-hour heart rate, mostly ranging from 65 to 85 bpm. A dashed vertical line marks the "End of Rolling PEM" around mid-September. After this point, both lines show reduced volatility and a downward trend, especially in maximum heart rate, suggesting improved autonomic stability.
This chart shows my daily maximum heart rate (purple) and 24-hour average heart rate (red) from July to December 2021. Before the end of rolling PEM, my nervous system was in a near-constant state of overdrive — with max heart rate spikes above 160 bpm and average rates well above baseline. After mid-September, those spikes began to ease. While my heart rate didn’t return to textbook-normal overnight, the overall volatility dropped. My system was calming down — another marker that internal stability was returning.

HRV data became another anchor for understanding my healing. Each time I stabilized, it was reflected in the numbers. Here’s how HRV changed alongside my recovery:

Line graph showing average overnight HRV from February to December 2021. The pink line represents daily average HRV, with a dotted pink linear trendline. Key dates are marked: starting POTS meds on May 21, pauses on June 9 and August 9, restarts on June 15 and August 13, and the end of rolling PEM on September 13. Notable fluctuations in HRV correspond to these events.
This graph tracks average overnight heart rate variability (HRV) from February to December 2021, overlaid with major changes in POTS (Postural Orthostatic Tachycardia Syndrome) medication use. Key events—including medication starts, pauses, and restarts—are annotated, helping illustrate their potential impact on HRV. A noticeable increase in HRV appears after medication adjustments in mid-June, with a trend shift around September during the onset of a boom-and-bust PEM cycle.

And my lowest sleeping heart rate dropped as my HyperPOTS was manageable and my body learned how to rest again.

Line chart tracking the lowest sleeping heart rate (in bpm) from February to December 2021. Key dates are marked with vertical lines and labels: starting POTS meds on 5/21, pausing on 6/9, restarting on 6/15, pausing again on 8/9, restarting on 8/13, and a clinical transition on 9/13. Heart rate drops significantly after starting meds and fluctuates with each change in regimen. The chart suggests a strong correlation between medication management and sleep-related cardiac activity.
This chart displays the lowest recorded sleeping heart rate from February to December 2021, annotated with key changes in POTS (Postural Orthostatic Tachycardia Syndrome) medication. Sharp drops in heart rate closely follow the initiation and resumption of medication, while interruptions correspond with noticeable rebounds. A significant clinical shift—the end of rolling post-exertional malaise (PEM) and onset of boom-and-bust cycles—is also noted in September, offering further context to heart rate variability.

The better I felt, the more afraid I became of losing it all again. I was scared of doing too much. Scared of getting hopeful. Scared of breaking the delicate rhythm my body had started to trust.

That fear makes sense. It’s part of healing. Recovery isn’t linear — and it isn’t guaranteed. But it is possible.

What helps me stay grounded:

  • Pacing, even on good days.
  • Heart rate monitoring, as a reality check.
  • Journaling, so I can remember what works.
  • Body trust, built slowly through consistency.
  • Community, because I’m not the only one walking this road.

The fear is still there sometimes. But it doesn’t run the show anymore.

Recovered from Rolling PEM: My New Quality of Life

Recovering from rolling PEM was the hardest thing I’ve ever done. It took discipline, patience, and support. But it was possible — and for me, that possibility became reality.

Even now, I still have more bad days than good. But the bad days don’t crush me the same way. And the good days — they matter. I’m living again.

It took time. It took setbacks. But I’m here now — and that means you can get here too.

Even if progress feels microscopic, even if you still have more bad days than good — you are healing. You are learning. And that matters.

If I ever doubt how far I’ve come, I look at this. It’s not just a chart — it’s proof that my body is learning to hold peace. 

Line chart titled “PEM Days vs Stable Days (MoM)” showing the monthly count of days with PEM symptoms versus stable days from June to December 2021. The PEM days (pink line) are consistently high — 30 or 31 per month — from June through August. After a vertical dashed line marking the “End of Rolling PEM” in mid-September, PEM days decrease to 23 in September and fluctuate downward to 23 again by December. In contrast, stable days (red line) remain at 0 until September, then rise to 7, and gradually increase to 8 by December. The chart highlights the inverse relationship between PEM days and stable days after recovery begins.
Returning to this chart reminds me how far I’ve come. The data tells a story of healing.

This is Part 3 of the story. Not the end — just the first chapter of what comes after surviving.


Frequently Asked Questions About Recovering from Rolling PEM

What does “recovered from rolling PEM” really mean?

For me, it meant no longer experiencing daily compounded PEM crash cycles — the kind where one flare stacked onto the next with no break in between. I had regained some basic function and started seeing consistent physiological improvements. I wasn’t cured, but I had stabilized and reclaimed parts of my life. I had entered a boom-and-bust pattern instead — still experiencing PEM, but with at least a day or two of stability between crashes. That space made all the difference.

How long did it take to recover from rolling PEM?

My recovery began after months of pacing, HR monitoring, and medication adjustments. September 2021 was the turning point, but it took consistent effort starting long before that.

Can someone with ME/CFS or Long Covid really recover from rolling PEM?

Everyone’s path is different, but I believe recovery is possible. This blog series is my story of how I recovered from rolling PEM — and it’s a story still unfolding.


Have you experienced rolling PEM? I’d love to hear how your journey’s unfolding — what worked, what didn’t, and what gave you hope. Drop a comment or share this with someone who might need it.

Recovery from rolling PEM didn’t happen by chance. It was the result of consistent pacing, careful symptom tracking, and tools I leaned on every day. If you’re currently in the thick of rolling PEM, review the PEM Avoidance Toolkit – a free resource with strategies that helped me survive the worst of it.

How I Got Out of Rolling PEM: Part 2

Reading Time: 27 minutes

In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I got out of rolling PEM with the help of pacing, heart rate monitoring, and other strategies (part 2). I will also share with you how my quality of life improved after breaking the cycle of rolling PEM and what I learned from this journey (part 3).

You can find the other parts of this series at these links:

Part 2: How I got out of rolling PEM?

A two-panel digital illustration titled “How I Got Out of Rolling PEM.” On the left, a woman lies in bed with an eye mask, holding a notebook—symbolizing deep rest. On the right, she sits calmly in a chair wearing a heart rate monitor, with a device on the table showing health data. Icons above her head represent energy, clarity, and recovery. The image uses soft tones and minimalist design to convey healing through rest and pacing.
How I Got Out of Rolling PEM
This side-by-side illustration visually captures the before-and-after experience of escaping rolling post-exertional malaise (PEM) with ME/CFS, using strategies like aggressive rest therapy, heart rate tracking, and energy conservation.

Getting out of rolling PEM with very severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) was not easy. It took me a lot of time, patience, and trial and error to find the best way to manage my condition and avoid triggering more crashes. I had to learn to listen to my body and respect its limits, even when I wanted to do more or felt pressured by others. I had to balance rest and activity without overdoing it or underdoing it. I had to monitor my heart rate, symptoms, and energy levels and adjust my pace accordingly. I had to accept that I couldn’t do everything I used to do and focus on what I could do instead. I had to deal with the frustration, guilt, and grief of losing my abilities and independence. I had to cope with the isolation, loneliness, and stigma of having a misunderstood and invisible illness. I had to find support and understanding from people who cared about me and knew what I was going through. And I had to hope that one day, things would get better.

I needed to do a combination of things to get out of rolling PEM. What helped me was the following:

  • Asking for help and delegating tasks: This approach allowed me to conserve energy better, reduce my stress, prioritize self-care, and find a sense of community.
  • Setting boundaries: This was essential as it helped protect my limited energy and prevent overexertion, stress, and symptom flare-ups.
  • Pacing with a heart rate monitor (HRM): This type of pacing aims to decrease time spent above AT (anaerobic threshold) to avoid using the broken energy system in ME/CFS.
  • Getting co-morbidities under control: This was important to me to reduce the amount of stress my body was experiencing from flares. 
  • Calming down the Autonomic Nervous System (ANS): Being hyperadrenergic impeded me from getting good rest during the day and night. I found that activities that promote parasympathetic activity were helping my Hyper POTS medications work more effectively.
  • Using heart rate variability (HRV) to inform pacing: Tracking overnight and morning HRV allowed me to analyze the state of my ANS and pace accordingly. 
  • Using mobility and accessibility aids: Mobility aids helped me reduce physical overexertion, dizziness, and syncope (fainting). Accessibility aids made it easier to do specific tasks like showering or other activities of daily living.
  • Introducing low-dose Abilify (LDA) per ME specialist’s guidance: My ME specialist recommended I return to low-dose Abilify to see if it would help reduce PEM.
  • Breaking down and modifying tasks to do them supine: Breaking down tasks into multiple steps with rest in between steps helped me incorporate pacing into my daily life.
  • Monitoring symptoms during activity and noting signs of PEM: Monitoring symptoms during activity and noting signs of PEM allowed me to pace myself according to my energy limits and avoid overexertion. I could stop doing an action before the signs of overexertion kicked in. 
  • Practicing Aggressive Rest Therapy (ART): Aggressive Rest Therapy taught me to listen to my body, respect my limits, and prioritize my well-being.

It took me several months of doing these things consistently to get out of rolling PEM. 

💡 Pacing Reminder:
This blog post is over 25 minutes long—because getting out from rolling PEM deserves depth and detail. If you live with ME/CFS or another energy-limiting illness, I encourage you to pace your reading just like you pace your energy.
Feel free to bookmark the page, break it into smaller sections, or use a read-aloud tool while lying down. Take breaks, rest your eyes, and come back when you’re ready.
This blog isn’t meant to be read in one sitting—it’s here to support you however and whenever you need it.

Acknowledgments

Before anything else, I want to acknowledge the privilege I’ve had in being able to pace for ME/CFS. Pacing—balancing rest and activity to avoid symptom crashes—isn’t a cure, but it’s a vital strategy for managing this chronic, often devastating illness.

But the reality is: not everyone with ME/CFS has the option to pace.

Many people face serious barriers that make pacing difficult or even impossible. I want to name some of those barriers here—not to offer solutions, but to affirm that these structural inequities are real and must be addressed.

  • Lack of support: Some people don’t have partners, family, friends, or providers who believe them, understand their limits, or offer help. Instead, they’re pressured to push through or are met with judgment and disbelief.
  • Lack of income: Many can’t afford to stop working, even when working makes them sicker. Navigating disability systems is a job in itself, and financial instability often leads to gaps in medical care, nutrition, housing, and basic survival.
  • Lack of accessibility: From stairs and bright lights to noise and social stigma, many environments are hostile to people with ME/CFS. The world is often designed without us in mind—physically, emotionally, and socially.

I share my story not because I have all the answers, but because I believe lived experience matters. Writing this blog is my way of contributing to a growing movement of people with ME/CFS who are demanding recognition, respect, and rights.

If you’re someone who can pace, I hope this blog helps you refine your strategy. If you’re someone who can’t, I see you—and I’m writing this in solidarity with you, too. No one should have to fight this hard just to be believed, supported, or safe.

Together, our stories shape the future. And I hope mine helps push that future in the right direction.

Privilege

First and foremost, I want to acknowledge the privilege I have in navigating this illness with the support of a loving and understanding partner. Their care, encouragement, and belief in my healing have made a profound difference. Not everyone with ME/CFS has someone who respects their boundaries, understands their condition, or offers daily support without guilt or judgment. I recognize how rare and meaningful that is.

I am also privileged in ways that many others are not. I don’t face the same financial pressures that force so many people with ME/CFS to work beyond their limits. I live in an accessible, quiet home tailored to my needs. These circumstances allow me to focus on recovery strategies that would be far more difficult—or impossible—without them.

I do not take these privileges for granted. They are not a reflection of merit, willpower, or “doing recovery right”—they are the result of structural and circumstantial advantages. I recognize that the systems we live in are unequal, and that many people with ME/CFS are denied the support, care, and resources they deserve. This blog is written with deep awareness of those disparities and in solidarity with those facing them.

Your Mileage May Vary (YMMV)

This blog shares what helped me manage and get out of rolling PEM. My journey involved a lot of trial and error, and the strategies that worked—like pacing, resting around activities, tracking symptoms, or trying specific medications—may not be helpful or accessible to everyone.

ME/CFS is not one-size-fits-all. Symptoms vary, root causes are still debated, and what helps one person might harm another. Please treat this post as a story, not a prescription. I encourage you to work with a medical provider or ME-informed practitioner before making changes to your care plan.

I offer this blog in the spirit of mutual aid and awareness, hoping it sparks curiosity or comfort—but never pressure or comparison.

Disclaimer

The content of this blog is based on my personal experience and self-directed research as someone living with ME/CFS. I am not a medical professional, and nothing on this site should be interpreted as medical advice, diagnosis, or treatment.

This blog is intended for informational and educational purposes only. Always consult with your doctor or a qualified healthcare provider before starting or stopping any treatments, supplements, or interventions related to ME/CFS or any other health condition.

I do not endorse or recommend specific products, services, or therapies. Use of the information provided here is at your own risk. I cannot be held liable for any outcomes that result from actions taken based on this content.

Asking for help and delegating tasks

Asking for help and delegating tasks was one of the most essential coping strategies I used to improve my pacing and quality of life.

At one point, I felt like I was mentally drowning. The list of things I couldn’t keep up with—filing medical claims, paying bills, and completing SSDI disability paperwork—kept looping in my mind. Even though I physically couldn’t handle them, they weighed heavily on me. The stress alone was draining.

Eventually, I reached out. I asked my partner for help, and I posted in online ME/CFS support groups for suggestions. The difference was immediate and transformative.

For example, when I had to fill out disability forms, my partner stepped in to make the process manageable. He read one question at a time and typed up my answers. We took breaks in between to avoid overwhelming my system. This wasn’t just assistance—it was pacing in action.

He also helped me review the PEM Avoidance Toolkit, and together we began tracking my symptoms using its tables. This gave me a clearer picture of what triggered my crashes and helped me identify patterns in my rolling PEM. The toolkit became more than a document; it became a framework we could both follow to prevent setbacks.

Monitoring my symptoms and noting PEM signs didn’t just help me avoid setbacks—it helped me finally exit the constant crash cycle. I still live with ME/CFS, but I’m no longer trapped in rolling PEM. Now, with more awareness, better pacing, and early intervention, I have a more stable baseline and more predictability in my day-to-day life.

As I let go of the need to do everything myself, it felt like a giant weight had been lifted. But the benefits didn’t stop at emotional relief. Delegating and asking for help impacted nearly every aspect of my health:

How Asking for Help Supported My Recovery

  • Energy Conservation: Delegating tasks allowed me to preserve my limited energy for critical things like eating, hygiene, and gentle movement. This significantly reduced my risk of overexertion and PEM.
  • Stress Reduction: Offloading responsibilities helped dial down the mental strain that can trigger symptom flares. With less stress, my nervous system felt calmer, and I could focus on healing.
  • Prioritizing Self-Care: Once I stopped spending all my spoons on paperwork and logistics, I had more capacity to rest, listen to music, practice gentle breathing, or simply exist without pressure.
  • Fostering Connection: Reaching out to ME/CFS support groups gave me validation and solidarity. I was reminded I wasn’t alone—and that connection became medicine in its own right.
  • Improving Well-Being: Letting others support me created space for physical, emotional, and mental recovery. I could breathe again. Over time, this balance laid the groundwork for lasting improvements.

 

A beige infographic titled “Benefits of Asking for Help with ME/CFS” displays five icons and labels: a half-filled heart for energy conservation, a rainy cloud with sun for stress reduction, a meditating figure for prioritizing self-care, two figures with a heart for fostering connection, and a smiling face for improving well-being. The handle @TickedOffCodess appears at the bottom.
Infographic: Benefits of Asking for Help with ME/CFS
Asking for help can be a powerful strategy for managing ME/CFS. This visual highlights five key benefits: conserving energy, reducing stress, prioritizing self-care, fostering connection, and improving overall well-being.

Letting go of control wasn’t easy. But by asking for help and allowing others to step in, I built a more sustainable life. Delegation wasn’t a sign of weakness—it was a powerful act of survival.

Setting boundaries

Boundaries are the limits and rules we set in relationships. People with healthy boundaries can say “no” when they need to [1]Therapist Aid. “Setting Boundaries: Info and Practice.” https://www.therapistaid.com/therapy-worksheet/setting-boundaries. Accessed April 8, 2023.. But for many of us with ME/CFS, setting boundaries can be incredibly difficult. Guilt, shame, fear of being misunderstood, or losing vital connections often hold us back. Despite these challenges, setting boundaries became a non-negotiable part of managing my illness. It helped me avoid overexertion, reduced stress, and prevented flares [2]Reddit. “Setting boundaries : cfs.” https://www.reddit.com/r/cfs/comments/nfsh3h/setting_boundaries/. Accessed April 8, 2023. [3]Inspiring Change London. “ME/CFS: 12 Steps For Setting Boundaries – Inspiring Change London.” https://inspiringchange.co.uk/mecfs-12-steps-for-setting-boundaries/. Accessed April 8, 2023..

Growing up, my family routinely crossed my boundaries. I became the fixer—the one everyone leaned on. When my grandmother became ventilator-dependent after West Nile Virus, I took on the massive responsibility of handling her care and finances, even though I lived thousands of miles away. I coordinated Medicaid coverage, hired a lawyer, and even oversaw the renovation of her home through an accessibility advocate so she could return from long-term care. I did all this while my body was collapsing under the weight of ME/CFS.

I didn’t want to disappoint my grandmother, who I love deeply, but trying to hold everything together nearly destroyed me. The stress was immense—and it made me sicker.

Eventually, I had to plead with my family to respect my limits. I sent them a message explaining how ill I was and how much help I needed from my partner. I even asked my partner to call them to reinforce the severity of my condition. It was one of the hardest things I’ve done—but one of the most important.

Steps That Helped Me Set and Maintain Boundaries

  1. Know your boundaries. I had to get clear on what I needed—from myself and others. That meant more rest, fewer stimuli, and more help with logistical tasks. For instance, I needed my parents in Florida to take over paperwork and manage my grandmother’s home renovation.
  2. Communicate clearly. Using direct, assertive language helped. Instead of softening my message with apologies, I said things like, “I need some quiet time right now. Can you lower your voice or step into another room?” or “I appreciate the invite, but I’m not well enough to join. Can we reschedule?”
  3. Enforce the limits. When someone pushed past my boundaries, I reminded them. For example: “We agreed you’d call before coming over—please don’t show up unannounced,” or “I can’t talk about my brother right now. Let’s change the subject.”
  4. Adjust as needed. My needs changed, and so did my boundaries. Sometimes I had more bandwidth, sometimes less. I might say, “My health has improved—I’d love to go out quarterly,” or “Lately, I’ve been crashing more, and I need help with meals and errands.”
A minimalist beige infographic titled “Setting Boundaries” displays four steps, each with an icon and description: a head with a checkmark for “Know your boundaries,” a speech bubble for “Communicate clearly,” a raised hand for “Enforce the limits,” and a circular arrow for “Adjust as needed.” The handle @TickedOffCodess appears at the bottom.
Infographic: Four Steps to Setting Boundaries
This visual breaks down the process of setting healthy boundaries into four key steps: knowing your limits, communicating them clearly, enforcing them consistently, and adjusting them as your needs evolve.

Eventually, I reached a point where I couldn’t even answer my phone. That forced my family to finally respect my limits. Setting boundaries protected my energy, reduced stress, and shielded me from worsening symptoms. It also reclaimed space for my well-being—and reminded me that self-respect and self-preservation are not selfish. They’re survival.

Pacing with a heart rate monitor (HRM)

Pacing with a heart rate monitor is a strategy that some people with ME/CFS use to help manage symptoms and avoid post-exertional malaise (PEM). The goal is to stay within one’s energy envelope—the limit of activity that does not trigger PEM. A common way to define this limit is by identifying the anaerobic threshold (AT), the heart rate beyond which the body starts consuming more energy than it can sustainably produce [4]American ME and CFS Society. “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023..

I decided to try pacing with a heart rate monitor because of the potential benefits it could offer. By tracking my heart rate, I could avoid going above my AT—which can fluctuate depending on factors like illness severity, stress, noise, or even social interactions [5]American ME and CFS Society “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023.. Pacing with a monitor helped define a safer activity level, made me aware of previously hidden limits, reduced overexertion and flares, and ultimately improved my quality of life [6]CFSSelfHelp. “Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy … Continue reading.

I first bought a MioPod armband, which connected to an app on my phone where I could set my target heart rate zone and monitor my heart rate in real time. It worked well at first and helped me avoid going above my anaerobic threshold.

But after some time, the company behind MioPod shut down and stopped updating the app. It eventually became incompatible with my phone, and I lost access to my data and settings. I also noticed accuracy issues—especially when I moved my arms or sweated.

After some research, I learned that chest straps are generally more accurate than wrist or arm-based monitors. I switched to a Polar H10 chest strap and paired it with the HeartGraph app, which many in ME/CFS pacing groups recommend. Because the standard Workwell Foundation guidance of staying below resting heart rate plus 15 bpm (RHR+15) didn’t work for me due to Hyper POTS, I instead used 50% of my max heart rate as a cap.

A heart rate graph with colored background zones shows heart rate rising from around 55 bpm to over 110 bpm. Labels on the graph read “Sitting,” “Feeling awful,” and “Presyncope” as the heart rate steadily climbs. The red zone indicates severe symptoms at higher heart rates. The duration is over 13 hours, with a max of 111 bpm and a mean of 54 bpm. The handle @TickedOffCodess appears at the bottom.
Heart Rate Graph: Hyperadrenergic POTS Response During Upright Activity
This heart rate graph captures a prolonged episode of autonomic dysfunction. The red line shows a rapid increase in heart rate from a resting state to presyncope while sitting, highlighting the body’s exaggerated cardiovascular response due to Hyper POTS. Annotated zones show symptom escalation: “Sitting,” “Feeling awful,” and “Presyncope.”

This approach showed me just how hard my heart was working, even at rest. It also gave me objective confirmation that my POTS wasn’t under control, which aligned with how terrible I was feeling.  Pacing with an HRM not only helped me stay within safer limits, but also made it clear that I needed help managing this comorbidity. That realization pushed me to seek professional treatment—something I’ll discuss in the next section.

Managing co-morbidities

Comorbidities are medical conditions that occur alongside another illness. For people with ME/CFS, comorbidities are common—and they often make symptoms more severe and life even harder to manage. [7]MEpedia. “Comorbidities of Myalgic Encephalomyelitis.” https://me-pedia.org/wiki/Comorbidities_of_Myalgic_Encephalomyelitis. Accessed April 8, 2023. Common ones include fibromyalgia, irritable bowel syndrome (IBS), orthostatic intolerance (OI), mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), sleep disorders, migraines, anxiety, depression, autoimmune diseases, and chemical sensitivities. [8]U.S. ME/CFS Clinician Coalition. “Clinical Management.” https://mecfscliniciancoalition.org/clinical-management/. Accessed April 8, 2023.

A circular infographic with “ME/CFS Comorbidities” in the center connects to nine outer circles, each labeled with a common comorbid condition: Fibromyalgia, Postural Orthostatic Tachycardia, Ehlers-Danlos Syndrome, Irritable Bowel Syndrome, Depression & Anxiety, Sleep Disorders, Temporomandibular Joint Disorder, Mast Cell Activation Syndrome, and Autoimmune Diseases. The handle @TickedOffCodess appears at the bottom.
Common Comorbidities Associated with ME/CFS
This visual diagram highlights several chronic conditions frequently co-occurring with ME/CFS, including Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Fibromyalgia, and more. Understanding these overlapping conditions is key to managing the complex symptom landscape of ME/CFS.

At first, I felt like I was chasing symptoms in a game I couldn’t win. Every new flare brought confusion and frustration—until I began to realize that not all of my symptoms were coming from ME/CFS or Lyme+. Conditions like POTS, MCAS, IBS, migraines, insomnia, and anxiety were all layering extra stress onto my system. Once I started actively managing these comorbidities, I noticed a shift: my baseline stabilized, and my body became just a little more manageable.

How Managing Comorbidities Helped Me

  • Symptom Relief: Comorbidities often mimic or worsen ME/CFS symptoms. For example, anxiety intensified my pain and stress, OI made me dizzy and faint when upright, and allergies triggered widespread inflammation. Treating each one provided small but meaningful relief—making it easier to cope with ME/CFS itself.
  • Improved Energy Levels: Sleep disorders drained my energy. IBS compromised hydration and nutrient absorption. Hyperadrenergic POTS left me constantly depleted, especially with my resting heart rate spiking 60+ bpm just from standing. Treating these helped reduce my daily exhaustion and gave me a little more capacity to function.
  • Enhanced Sleep Quality: I dealt with multiple sleep disorders—including insomnia, narcolepsy, and REM-related adrenaline surges from dysautonomia. Poor sleep worsened everything: pain, cognition, fatigue, and mood. Over time, addressing these issues helped reduce night-time awakenings and morning crashes.
  • Reduced Pain and Discomfort: Conditions like fibromyalgia and hEDS created persistent muscle and joint pain. Migraine flares were especially brutal. Managing hEDS and migraines led to a noticeable reduction in daily discomfort, making my ME/CFS symptoms more tolerable.
  • Better Mental Health: Anxiety and depression are common with ME/CFS, but they’re not “just” emotional. They affect pain tolerance, motivation, treatment compliance, and even inflammation. Therapy, nervous system regulation, and medication helped reduce emotional spirals and boosted my resilience.
  • Optimized Overall Health: Targeting comorbidities across body systems—immune, endocrine, cardiovascular, and neurological—helped me avoid downstream complications. For example, treating thyroid issues, small fiber neuropathy, or immune dysfunction with tailored protocols improved how my body handled stress and recovery.
  • Personalized Treatment Plan: With help from my care team, I’ve developed a comprehensive plan tailored to my comorbidities. That includes medications (e.g., beta-blockers, antihistamines), supplements (e.g., magnesium, quercetin, mitochondrial support), lifestyle tools (e.g., abdominal binders, compression), and therapies like somatic work and pacing adjustments.

Examples from My Journey

Managing my comorbidities meant treating conditions like:

PCOS – I started hormonal therapy to regulate symptoms.

Primary Immunodeficiencies – I began IVIG, which helped stabilize my immune system.

Migraines – I added preventive meds and magnesium, which reduced attack frequency.

IBS – Dietary changes and gut-focused support improved digestion and nutrient absorption.

Hyper POTS – Med adjustments, an abdominal binder, and compression wear (as prescribed by my electrophysiologist) helped reduce blood pooling and improve circulation.

MCAS – I adjusted my supplement protocol, avoided histamine-rich foods, and optimized my antihistamines with my doctor’s guidance.

Caution and Perspective

Managing comorbidities is not a cure for ME/CFS. It doesn’t fix the underlying disease process. But it can lower the total symptom burden and reduce the frequency or severity of PEM crashes. That said, some treatments can trigger side effects or worsen ME/CFS if not carefully tailored. It’s essential to work with clinicians who understand both the primary illness and its overlapping conditions. [9]U.S. ME/CFS Clinician Coalition. “Clinical Management.” https://mecfscliniciancoalition.org/clinical-management/. Accessed April 8, 2023.

For me, managing comorbidities gave my body breathing room. It helped create a more stable foundation—one where healing felt possible.

Calming down the Autonomic Nervous System (ANS)

One of the biggest obstacles to my recovery was how constantly activated my nervous system felt. I lived in a state of “fight or flight,” even when I was trying to rest. This hyperadrenergic state—common in people with ME/CFS and POTS—kept me wired, tense, and unable to fully relax, let alone heal. My body was flooded with stress hormones, making sleep shallow, rest ineffective, and symptoms worse. I realized that unless I actively supported my parasympathetic nervous system—the “rest and digest” mode—my other treatments wouldn’t be as effective. I needed to calm my autonomic nervous system (ANS).

The ANS regulates involuntary functions like heart rate, digestion, and blood pressure, and it often becomes dysregulated in people with ME/CFS [10]The ME Association, 2018. https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf. Calming it can improve overall stability and reduce the intensity of symptoms.

For me, Hyperadrenergic POTS was the main driver behind this constant sense of physiological alarm. This form of POTS involves excessive adrenaline production, which led to a rapid heart rate, high blood pressure, anxiety, tremors, and sweating. I knew I needed a two-pronged approach: medications and meditation.

My doctor prescribed medications to reduce heart rate, blood pressure, and adrenaline levels. I take beta-blockers like propranolol, as well as Corlanor and clonidine.

To complement my medications, I turned to meditation—but it wasn’t easy at first. My sensory overload was so intense that listening to guided audio meditations was overwhelming. The sound, even when gentle, felt like too much for my overstimulated system. So instead, I drew on a practice I had learned long ago: body scans.

 

A beige infographic titled “Calming the ANS Through Meditation—My Progression” depicts a personal meditation journey using illustrated dogs and icons. It begins with sensory overload (audio meditations too overwhelming), progresses to silent body scans, then to nervous system stabilization, and finally to two advanced practices: Yoga Nidra and Metta meditation. Yoga Nidra involves 90-minute guided meditations; Metta meditation focuses on loving-kindness. The visual ends with a statement: “Together, these practices helped shift me from survival mode into healing mode.” The handle @TickedOffCodess appears at the bottom.
Calming the Autonomic Nervous System (ANS) Through Meditation: My Progression
This visual illustrates a step-by-step personal journey from sensory overload to emotional stabilization using meditation. It outlines how practices like body scans, Yoga Nidra, and Metta meditation gradually helped shift the nervous system from survival mode into healing.

I began calming my ANS by lying still and directing my attention to individual parts of my body, one at a time. I would focus on a single area—like my toes, my hands, or my jaw—bringing awareness and relaxation to each spot before moving on. This simple but powerful practice grounded me in the present and helped release tension without additional sensory input. It became my entry point into regulating my nervous system.

As my nervous system gradually stabilized, I was able to tolerate more. That’s when I introduced two forms of guided meditation that became daily tools for healing: Yoga Nidra and Metta.

Yoga Nidra is a guided, deeply restful meditation typically practiced lying down. It leads you through body awareness, breath, and visualization exercises to induce a state of profound relaxation. It helped slow my breathing, ease muscle tension, and settle my heart rate. I practiced it every morning for about 90 minutes, giving my day a calm and centered start.

Metta meditation, also known as loving-kindness meditation, involves silently repeating compassionate phrases like “May I be at peace” or “May all beings be safe.” This practice helped me cultivate emotional balance, reduce anxiety, and build resilience against the emotional toll of chronic illness [11]NC State University Yoga, n.d. https://yoga.dasa.ncsu.edu/meditation/metta-meditation/.

Together, these practices helped shift my system from survival mode into healing mode.

Using mobility and accessibility aids to get out of rolling PEM

One of the clearest turning points in my illness came when walking—even short distances—began to trigger presyncope and syncope. At first, my partner used a transport chair to help me get to the bathroom. Eventually, even that became too taxing, and we switched to a bedside commode. These changes felt significant, but they were necessary acts of adaptation, not defeat.

Mobility and accessibility devices became essential to preserving my quality of life. With severe ME/CFS, every bit of energy counts, and these tools allowed me to use mine more wisely. They weren’t just aids—they were strategies that supported my safety, dignity, and autonomy.

Here’s how they helped:

  • Conserving energy: With virtually no energy reserves, even basic tasks left me depleted. Devices like transport chairs, rollators, and wheelchairs reduced the physical strain of moving around. For example, using a transport chair allowed me to get to the bathroom without risking collapse or triggering PEM.
  • Preventing overexertion: ME/CFS punishes exertion with post-exertional malaise—a worsening of symptoms that can last days or weeks. These tools helped me stay within my energy envelope by minimizing unnecessary movement and strain.
  • Improving accessibility and safety: Devices like grab bars, shower chairs, and anti-slip bath mats allowed me to complete essential tasks like bathing or hygiene with less risk. One of the most helpful additions was a cushioned bath mat that allowed me to lie down in the shower—a safer and more energy-efficient way to clean up.
  • Using manual assistance and modified tools: Small shifts made a big difference. Instead of using a manual toothbrush, we switched to an electric one. I brushed my teeth lying in bed while my partner brought over the toothbrush prepped with toothpaste and a cup of water. A friend sent me a lap desk that we repurposed as a food tray. Meals were brought to my room, and I ate lying down or propped on my side. These adaptations helped me preserve energy and maintain hygiene and nutrition in a way that fit within my physical limits.

 

A beige infographic titled “How I Conserved Energy and Improved Accessibility” shows four main sections:Conserving Energy – using transport chairs and wheelchairs to reduce fatigue.Preventing Overexertion – reducing strain to lower PEM risk.Improving Accessibility and Safety – lying on a bath mat in the shower.Using Manual Assistance and Modified Tools – using an electric toothbrush and lap tray for meals.Each section is paired with a simple icon (wheelchair, person reclining, showerhead, and tray). The handle @TickedOffCodess appears at the bottom.
How I Conserved Energy and Improved Accessibility with ME/CFS
This infographic outlines practical strategies used to conserve energy, prevent post-exertional malaise (PEM), and increase safety and accessibility—ranging from mobility aids and adaptive tools to bath mats and electric toothbrushes.

Ultimately, using mobility devices and hands-on assistance wasn’t about giving in—it was about honoring the reality of my condition and adapting in ways that allowed me to live with more comfort, dignity, and control. I’m deeply grateful for the ways these tools helped me reclaim parts of my daily life that might have otherwise been lost to illness.

Using HRV to inform pacing

Heart Rate Variability (HRV) became one of my most valuable tools for managing energy and preventing crashes with ME/CFS. HRV measures the variation in time between heartbeats and serves as a window into the autonomic nervous system (ANS)—particularly its balance between the sympathetic (“fight or flight”) and parasympathetic (“rest and digest”) branches.

For someone like me, living with Hyperadrenergic POTS on top of ME/CFS, my nervous system often defaulted to high alert. HRV gave me objective feedback on how strained or recovered my system was, helping me adjust my pacing before a post-exertional malaise (PEM) crash hit.

How I Tracked HRV

  • Overnight HRV: I used both the Oura Ring and SweetBeatHRV to track HRV while sleeping. These tools helped me assess how well my body recovered overnight and whether I was trending toward balance or burnout.
  • Morning HRV: Each morning, while lying supine and still, I used Elite HRV and HRV4Training with a Polar H10 chest strap. This setup minimized movement-related artifacts and gave me consistent baseline data.

How I Interpreted the Data

  • low HRV reading (compared to my personal baseline), especially when paired with an elevated resting heart rate, indicated that my system was under stress. On those days, I paused all nonessential activities and leaned into aggressive rest, hydration, and grounding strategies.
  • stable or slightly elevated HRV, when aligned with normal resting HR and no crash symptoms, suggested I could cautiously proceed with light activities like journaling, listening to a meditation, or replying to a message.

Caution: High HRV Can Be Misleading

One of the most important things I learned was that a sudden spike in HRV didn’t always mean my body was well-recovered. Sometimes, when my system was under significant strain, it would swing into parasympathetic dominanceas a form of overcompensation—a pattern common in some people with ME/CFS.

In these cases, HRV looked “excellent” on paper, but I felt heavy, foggy, and wired-but-tired. I had to learn not to treat a high HRV reading as a green light without contextual clues like:

  • Symptom tracking
  • Resting heart rate
  • Sleep quality
  • Recent physical or cognitive exertion

 

A beige infographic titled “Using HRV to Inform Pacing” shows two HRV tracking methods: overnight (using Oura and SweetBeatHRV) and morning (using Elite HRV and HRV4Training). It presents two decision pathways: Adjust activity if HRV is stable or slightly elevated without crash symptoms. Rest aggressively if HRV is low or shows a sudden spike paired with symptoms or parasympathetic swing. A caution icon at the bottom warns that high HRV can sometimes be misleading due to parasympathetic overcompensation. The handle @TickedOffCodess appears at the bottom.
Using HRV to Inform Pacing with ME/CFS
This infographic illustrates how overnight and morning heart rate variability (HRV) data—tracked using tools like Oura, SweetBeatHRV, Elite HRV, and HRV4Training—can guide daily pacing decisions. It highlights when to adjust activity or rest aggressively and includes a warning about parasympathetic overcompensation.

How HRV-Informed Pacing Helped Me

  • Caught stress early – I could intervene before PEM set in.
  • Validated rest – Data helped me pace smarter, even when I felt “fine.”
  • Reduced boom-bust cycles – By proactively adjusting plans, I avoided major crashes.
  • Increased confidence – HRV gave me a system for adjusting effort without relying on guesswork.
  • Improved recovery windows – Over time, my crashes became shorter and less destabilizing.

Introducing Low-Dose Abilify

 There is currently no cure or FDA-approved treatment for ME/CFS, but some patients have found symptom relief through the off-label use of certain medications. One such medication is Abilify (aripiprazole)—commonly prescribed for psychiatric conditions like schizophrenia and bipolar disorder. However, when taken at very low doses, Abilify appears to work differently and may provide significant benefits for people with ME/CFS, particularly in reducing fatigue, cognitive dysfunction, and post-exertional malaise (PEM).

Abilify functions as a dopamine system stabilizer, meaning it can either increase or decrease dopamine activity depending on the brain’s needs and the dosage. Dopamine plays a critical role in motivation, mood, energy, and motor function. Research suggests that ME/CFS is associated with reduced dopamine activity, particularly in areas of the brain like the basal ganglia, which regulate motivation and movement. Low dopamine levels may also contribute to neuroinflammation, an immune response in the brain that can lead to fatigue, pain, and cognitive impairment.

At low doses—typically between 0.25 and 2.5 mg daily—Abilify may enhance dopamine signaling and reduce neuroinflammation. These effects can potentially lead to improved energy, mood, focus, and a reduction in PEM. A retrospective study from the Stanford University ME/CFS clinic found that 52% of 101 patients experienced moderate to significant improvement with low-dose Abilify, and 12% reported full remission of symptoms. [12]Abilify Shows Promise in Retrospective Chronic Fatigue Syndrome (ME/CFS) Study – Health Rising. https://www.healthrising.org/blog/2021/03/09/abilify-chronic-fatigue-syndrome-promise/

An infographic titled “Introducing Low-Dose Abilify” explains the use of aripiprazole to manage ME/CFS symptoms. It includes a description of the user's experience taking 1.75 mg daily (later reduced to 1.5 mg), under the care of Dr. Bonilla. Benefits listed include reduced fatigue, improved cognitive function, and decreased post-exertional malaise (PEM). The image includes icons for each benefit and a bar chart showing that 52% of patients reported improvement. A cartoon figure sits thinking, and the handle @TickedOffCodess appears at the bottom.
Introducing Low-Dose Abilify for ME/CFS Symptom Management
This infographic shares a personal account of using low-dose Abilify (aripiprazole) to treat ME/CFS, highlighting its potential benefits in reducing fatigue, improving cognitive function, and decreasing PEM. It includes the guidance of Dr. Bonilla and references data showing that 52% of patients in a retrospective study reported improvement.

Based on this research and my previous experience, my ME/CFS specialist recommended I try low-dose Abilify again. I had previously noticed a boost in energy and mood while on the medication, but discontinued it due to cost and concerns about the stigma surrounding antipsychotic drugs. However, after gaining a better understanding of its unique effects at low doses and its potential to reduce PEM, I decided to give it another chance. I’m hopeful that it will help me manage my symptoms more effectively and improve my overall quality of life.

Breaking down tasks and doing them supine

One of the most effective strategies I used to avoid post-exertional malaise (PEM) and manage my energy levels with ME/CFS was breaking down tasks and performing them in a supine (lying down) position.

Breaking down tasks meant dividing even the simplest activities into smaller, manageable steps that I could complete in short bursts with rest in between. For example, instead of brushing my teeth, washing my face, and brushing my hair all at once, I did each step separately with long rest breaks—sometimes spreading them out over the entire day.

Doing tasks supine meant performing activities while lying down, which helped reduce orthostatic stress and conserve energy. This position allowed me to avoid symptoms like dizziness, shortness of breath, or fatigue that often occurred when I stayed upright too long. I brushed my teeth while lying down in bed, using an electric toothbrush that my partner brought to me along with a cup of water. I also read, wrote, or meditated while lying on my side with proper support.

This combined strategy of pacing, task simplification, and positional modification significantly improved my ability to participate in daily life without triggering PEM. Here’s how it helped me:

  • Energy conservation: By breaking tasks into steps and resting between them, I prevented overexertion and stayed within my energy limits.
  • Reduced orthostatic intolerance: Lying down helped me avoid dizziness, lightheadedness, and other symptoms triggered by upright activity.
  • Less muscle strain and pain: Supine positioning reduced the physical stress on my muscles, which were often weak or sore.
  • Improved focus and mental clarity: Focusing on one small step at a time helped reduce cognitive overload and brain fog.
  • Enhanced recovery and rest: Doing activities in a restful position supported better recovery and overall well-being.
  • Boosted morale: Completing small tasks gave me a sense of achievement, motivation, and control.
  • Adaptability: This approach allowed me to stay engaged with daily life, even when my symptoms fluctuated.
A flat-design infographic titled “Breaking Down Tasks and Doing Them Supine” shows a person lying in bed while reading and using an electric toothbrush. Text explains that breaking activities into small steps and doing them while lying down helps manage ME/CFS. Icon-labeled benefits include energy conservation, reduced orthostatic intolerance, enhanced recovery, improved focus, boosted morale, and adaptability. The design features clean lines and a soft beige, navy, and white color palette.
Breaking Down Tasks and Doing Them Supine
This infographic illustrates how dividing tasks into small steps and performing them while lying down helped manage ME/CFS by conserving energy, reducing orthostatic stress, and maintaining functionality without triggering PEM.

In summary, breaking down tasks and doing them supine was a vital part of how I managed PEM and got out of rolling PEM. It allowed me to work within my body’s limitations, protect my energy, and maintain a sense of participation and dignity while living with severe ME/CFS.

Monitoring symptoms and noting signs of PEM

When I was in the thick of rolling PEM, even the smallest effort—brushing my teeth, having a short conversation, or walking across the room—could lead to a debilitating crash. I knew I had to get smarter about how I spent my energy. That’s when I started actively monitoring my symptoms during and after activity.

I tracked how I felt in real-time—not just what I was doing, but how longhow often, and how intense it was. Whether I was texting a friend, walking to the bathroom, or sitting upright for a few minutes, I paid attention to what it cost me. This helped me start identifying my true limits.

Just as importantly, I learned to spot early warning signs of PEM—like rising heart rate, brain fog, sore throat, dizziness, or that flu-like heaviness that often signaled I was about to crash. When I caught these signs early, I immediately stopped what I was doing, returned to bed, and prioritized recovery. Doing this consistently helped me reduce the severity and duration of PEM episodes.

Over time, this kind of symptom tracking became central to my pacing strategy, and it gave me real wins in my recovery:

  • I planned my day around my real-time energy limits, using tools like task rotation, pre-emptive rest, and breaking tasks into micro-steps.
  • I identified my PEM triggers, including certain movements, overstimulation, and cumulative effort—even things like too much conversation or thinking too hard.
  • I intervened early at the first hint of trouble, which often prevented a full crash.
  • I logged patterns and shared them with my medical team to fine-tune my treatment and accommodations.
  • I learned how to listen to my body, not just when it was screaming, but when it whispered.
  • I built pacing skills that gave me a sense of control and momentum, even while severely limited.
  • I reduced the intensity of crashes, which helped me regain small pockets of stability—and from that stability, I began to build.
An infographic titled “How I Monitored Symptoms to Overcome Rolling PEM” features a person in bed using a tablet to track symptoms. Icons represent early warning signs including rising heart rate, brain fog, dizziness, and intense fatigue. A step-by-step flow on the right shows: monitoring symptoms in real time, recognizing triggers, intervening early with rest, and reducing crash severity. Key benefits listed at the bottom include reduced crash severity, improved self-awareness, and more predictable daily life.
How I Monitored Symptoms to Overcome Rolling PEM
This infographic illustrates the practical steps I took to track early signs of post-exertional malaise (PEM) and intervene before a crash. By monitoring symptoms like rising heart rate, brain fog, dizziness, and intense fatigue in real time, I was able to reduce the severity of crashes and create a more stable daily routine

PEM Avoidance Toolkit

One of the most helpful resources I’ve found for managing ME/CFS is the PEM Avoidance Toolkit by the Open Medicine Foundation. This guide was developed with input from both patients and experts, and it offers practical tools for preventing and managing post-exertional malaise (PEM)—the hallmark crash that often follows even minor physical, mental, or emotional exertion. [13]PEM Avoidance Toolkit – Open Medicine Foundation. https://www.omf.ngo/pem-avoidance-toolkit/ Accessed 4/12/2023.

The toolkit helped me in several powerful ways:

  • Understanding my limits and patterns: It helped me recognize my personal warning signs for PEM, track my symptoms and triggers, and better understand my baseline—the amount of activity I can safely handle.
  • Pacing and planning with purpose: I learned to schedule my days based on energy availability, break tasks into manageable parts, and build in rest before I crash. This proactive approach helped me stay more stable and reduced my symptom flares.
  • Managing everyday life with ME/CFS: From hydration and nutrition to sleep hygiene and medication tracking, the toolkit provided tips I could implement right away. These small changes added up to big differences in how I felt day to day.
  • Creating an emotional support system: The toolkit encouraged me to lean on others—my partner, online support groups, and medical providers—and offered guidance on how to navigate the emotional rollercoaster of chronic illness, including isolation, grief, and guilt.
  • Recovering more quickly when I do crash: I created a personalized crash recovery plan, so when PEM hit, I had a step-by-step protocol to help me rest, hydrate, medicate, and communicate what I needed—without having to make decisions in the fog of a flare.
A vertical infographic titled “Using the PEM Avoidance Toolkit to Reduce Flare-Ups” outlines six strategies: understanding limits and patterns, pacing and planning with purpose, managing daily life with ME/CFS, creating an emotional support system, and recovering more quickly after crashes. Each step includes a matching icon and brief description. The design uses a soft beige background with navy blue text. The focus keyword “reduce rolling PEM” is implied through strategies like pacing, tracking, and recovery planning.
Using the PEM Avoidance Toolkit to Reduce Rolling PEM and Flare-Ups
This infographic highlights how the PEM Avoidance Toolkit helped me reduce post-exertional malaise (PEM) by tracking patterns, pacing with purpose, and building support systems—key steps in how I got out of rolling PEM with ME/CFS.


The PEM Avoidance Toolkit didn’t cure my ME/CFS, but it gave me structure, language, and tools I didn’t have before. Most importantly, it empowered me to take action within the limitations of this illness—and that sense of agency made a world of difference.

Practicing Aggressive Rest Therapy (ART)

When I was at my sickest—bedbound, crashing from minimal exertion, and living in a state of constant post-exertional malaise (PEM)—I realized that traditional pacing wasn’t enough. I needed a more radical intervention: Aggressive Rest Therapy (ART).

ART isn’t just about “resting more.” It’s a structured, intentional practice of prioritizing complete physical, cognitive, and sensory rest as a central therapeutic intervention—especially critical for those with severe or very severe ME/CFS [14]Bateman Horne Center. “Activity Management and Pacing.” https://batemanhornecenter.org/activity-pacing/ [15]Me & More. “Aggressive Rest Therapy (ART) and Aggressive Resting.” https://www.meandmore.net/blog/aggressive-rest-therapy-art-and-aggressive-resting. Accessed April 30, 2025.. It meant removing all non-essential activity. No multitasking. No “powering through.” No “just this one thing.”

Every bit of energy was protected like gold.

What ART Looked Like for Me

  • Strict horizontal rest in a dark, quiet room for most of the day, especially during flares.
  • No screens, conversations, or sensory input unless I had surplus capacity.
  • Intentional rest blocks, even if I felt slightly better—using timers to stay accountable.
  • Minimalism in everything: minimal talking, minimal upright activity, minimal decisions.
  • Pre-emptive rest before and after any activity, no matter how small (e.g., brushing teeth, texting, sitting up).
  • Symptom journaling and HR tracking to avoid crossing my energy envelope.

This level of discipline felt extreme at first—but it was the only thing that started to turn the tide.

How It Helped

  • It broke the PEM cycle. At my most severe, I was in a near-constant state of rolling PEM. By halting all non-essential exertion, ART gave my body the quiet conditions it needed to begin recovering, even slightly.
  • It stabilized my baseline. Instead of constantly bouncing between minor upticks and deep crashes, I started to find a new “floor” where my symptoms were still intense but more predictable.
  • It built energy reserves. Through sustained, high-quality rest, I began experiencing moments of clarity and capacity—moments I hadn’t felt in months.
  • It taught me my true limits. ART forced me to confront how much even small tasks drained me. That awareness was painful, but essential—it helped me redefine what “pacing” meant based on lived data, not guesswork or guilt.
  • It shifted my mindset. I stopped viewing rest as something passive or shameful and started treating it like a prescription. ART reframed rest as a skill—something I had to practice, refine, and honor.
An infographic titled “Aggressive Rest Therapy for Very Severe ME/CFS” shows how I got out of rolling PEM by prioritizing complete rest. The left side lists ART practices: strict rest in a dark room, limiting screens and conversations, scheduled rest, minimal decisions, and pre-emptive rest before/after activities. The right side displays benefits including breaking the PEM cycle, stabilizing baseline energy, building energy reserves, and shifting mindset. A peaceful figure is shown resting in bed. The graphic uses a calm beige and blue color palette.
Aggressive Rest Therapy Helped Me Get Out of Rolling PEM
This infographic explains how I used aggressive rest therapy (ART) to get out of rolling PEM with very severe ME/CFS. It outlines key practices—like strict rest and minimizing stimulation—and highlights benefits such as breaking the PEM cycle, stabilizing energy, and building reserves.

While ART didn’t “cure” me, it gave me the breathing room I needed to begin healing from a state of collapse. It allowed my nervous system to quiet, my body to conserve energy, and my symptoms to become less volatile. It gave me the chance to stabilize—and from there, to slowly rebuild using other strategies.

For anyone with very severe ME/CFS, I believe ART is not just useful. It’s foundational.

Conclusion: Rebuilding From Rock Bottom

Overcoming rolling PEM wasn’t about finding a miracle cure—it was about learning how to live differently. It meant respecting my limits, tuning into my body, and accepting help when I desperately wanted to do it all myself. Every strategy I shared—pacing with a heart rate monitor, setting boundaries, delegating tasks, managing comorbidities, and more—was a piece of the puzzle.

Was it hard? Absolutely. But it gave me something I didn’t think I’d get back: a sense of stability. And from that stability, I could start rebuilding.

If you’re in the middle of a crash that feels endless, please know this: you’re not weak for needing rest. You’re not lazy for needing help. And you are not alone in this.

This illness asks a lot from us—but with the right tools, the right people, and the right mindset, it is possible to carve out space for healing.

Start where you are. Take one step. And give yourself credit for surviving what most people could never understand.

And once I found stability, something unexpected happened: I began to recover small pieces of my life.

In Part 3, I’ll share how my quality of life started to improve—what changed, what continued to challenge me, and what healing actually looked like day to day. It’s not a story of total recovery, but it is one of progress, perspective, and hard-won hope.

👉 Click here to read Part 3: How Did My Quality of Life Improve?

If you’ve made it this far, thank you for walking with me. You’re not alone—and your story doesn’t end here either.

 

References

References
1 Therapist Aid. “Setting Boundaries: Info and Practice.” https://www.therapistaid.com/therapy-worksheet/setting-boundaries. Accessed April 8, 2023.
2 Reddit. “Setting boundaries : cfs.” https://www.reddit.com/r/cfs/comments/nfsh3h/setting_boundaries/. Accessed April 8, 2023.
3 Inspiring Change London. “ME/CFS: 12 Steps For Setting Boundaries – Inspiring Change London.” https://inspiringchange.co.uk/mecfs-12-steps-for-setting-boundaries/. Accessed April 8, 2023.
4 American ME and CFS Society. “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023.
5 American ME and CFS Society “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023.
6 CFSSelfHelp. “Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope.” http://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope. Accessed April 8, 2023.
7 MEpedia. “Comorbidities of Myalgic Encephalomyelitis.” https://me-pedia.org/wiki/Comorbidities_of_Myalgic_Encephalomyelitis. Accessed April 8, 2023.
8, 9 U.S. ME/CFS Clinician Coalition. “Clinical Management.” https://mecfscliniciancoalition.org/clinical-management/. Accessed April 8, 2023.
10 The ME Association, 2018. https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf
11 NC State University Yoga, n.d. https://yoga.dasa.ncsu.edu/meditation/metta-meditation/
12 Abilify Shows Promise in Retrospective Chronic Fatigue Syndrome (ME/CFS) Study – Health Rising. https://www.healthrising.org/blog/2021/03/09/abilify-chronic-fatigue-syndrome-promise/
13 PEM Avoidance Toolkit – Open Medicine Foundation. https://www.omf.ngo/pem-avoidance-toolkit/ Accessed 4/12/2023.
14 Bateman Horne Center. “Activity Management and Pacing.” https://batemanhornecenter.org/activity-pacing/
15 Me & More. “Aggressive Rest Therapy (ART) and Aggressive Resting.” https://www.meandmore.net/blog/aggressive-rest-therapy-art-and-aggressive-resting. Accessed April 30, 2025.

How I Escaped the Horror of Rolling PEM: Part 1

Reading Time: 9 minutes

In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I managed to get out of rolling PEM with the help of pacing, heart rate monitoring, and other strategies (part 2). I will also share with you how my quality of life improved after breaking the cycle of rolling PEM and what I learned from this journey (part 3).   You can find the other parts of this series at these links:

Part 1: My Nightmare Summer of Long COVID-Induced Rolling PEM

I was one of the unlucky ones who developed Long Covid after contracting COVID-19 in March 2020. Long Covid is a term used to describe the persistent and debilitating symptoms that some people experience after recovering from acute-covid. Some of the common symptoms are fatigue, brain fog, shortness of breath, chest pain, and muscle aches. For me, the worst symptom was the breathing difficulty. I felt like I was constantly suffocating, and my oxygen saturation dropped with any physical activity.

I thought I had seen the worst, but I was wrong. In February 2021, my home-care nurse re-infected me with covid. She had been exposed to the virus at work and did not know it. She came to my house wearing a cloth mask, which was not enough to protect me. The re-infection triggered a severe flare-up of my Long Covid symptoms and comorbidities. My breathing issues were the worst they had ever been, and I was on five different inhalers. I also had a gnawing headache and loss of taste and smell.

The re-infection was a nightmare that lasted for months. I still haven’t recovered from the re-infection and returned to my previous level of functioning. The re-infection also left me with more damage to my lungs and heart. I struggled with breathing and chest pain every day for over a year after it.

By the summer of 2021, thanks to the re-infection, I was deep in rolling PEM and deteriorating quickly. It was one of the most challenging times of my life.

It was a nightmare that I never wanted to repeat.  

Struggle to Keep Up With Activities of Daily Living (ADLs)

Image of the 6 Activities of Daily Living: Washing, Toileting, Dressing, Feeding, Mobility, and Transferring

I struggled to survive, barely able to do the most basic tasks. Severe ME/CFS made it impossible for me to do what I used to do. I couldn’t and still can’t keep up with my activities of daily living (ADLs), which are the basic skills I need in daily life. [1]What Are Activities of Daily Living (ADLs)? – WebMD. https://www.webmd.com/a-to-z-guides/what-are-activities-of-daily-living. Accessed 08/20/2023. These include:  

  • Mobility: I couldn’t walk, sit, stand, lie down, or get up without assistance. I needed and still need a wheelchair to move around. Sometimes, I couldn’t even leave my bed.
  • Grooming/Washing: I couldn’t and still can’t manage my hygiene. I need help brushing my teeth, bathing, shaving, and hair and nail care.
  • Toileting: I need help with using the toilet. For example, I need someone to lift the toilet seat, flush the toilet, and hand me toilet paper or pre-cut toilet paper.
  • Dressing: I can’t dress myself properly. I need help with buttons, zippers, and shoes. I often wear loose, comfortable clothes that are easy to put on and take off.
  • Feeding: I couldn’t feed myself. I need help cutting food, using utensils, and sometimes bringing food to my mouth.

I also couldn’t do the instrumental activities of daily living (IADLs), the more complex activities essential to living independently. [2]Activities of daily living – Wikipedia. https://en.wikipedia.org/wiki/Activities_of_daily_living. Accessed 08/20/2023. [3]What are the 12 Activities of Daily Living? – Devoted Guardians. https://devotedguardians.com/activities-of-daily-living-the-adls/. Accessed 08/20/2023. These include:  

  • Managing finances: I couldn’t pay my bills, use bank facilities, or plan my expenses. I rely on my partner or a caregiver to handle my money matters.
  • Taking care of my health: I couldn’t visit doctors or follow medical prescriptions. I needed my partner to speak with my doctors over tele-health. I still need someone to arrange my appointments, drive me to the clinic, and remind me to take my medications that aren’t part of my daily routine.
  • Doing shopping: I can’t buy groceries, toiletries, clothing, or other necessities. I depend on online delivery services or someone else to shop for me.
  • Prepping and cooking meals: I can’t prepare or cook my food. I need ready-made meals or someone else to cook for me.
  • Managing transport: I can’t drive, take cabs, or use public transport. I need someone to drive me or accompany me wherever I go.
  • Using communication devices: I couldn’t use the telephone, post, email, or other devices. I had trouble hearing, speaking, reading, or writing. I felt isolated from the world.
  • Doing household chores: I can’t clean, garden, or do laundry. I need someone to do these tasks for me.

ME/CFS has taken away my independence and dignity. It has also affected my mental and emotional health.

I became bedridden and unable to do anything without causing severe symptoms. I needed constant care and assistance from my partner. I was in excruciating pain and tired all the time. I felt hopeless and helpless. I wondered if I would ever get better or if this was what life would be like. I was in agony. I felt like everything in my body was on fire. I cried every day and wished for a miracle. I hated my life. I felt angry and frustrated at the lack of understanding and support from the medical system and society. I felt isolated and lonely. I felt like a burden to my partner.   

Non-Stop Symptoms

I felt awful. I had nonstop symptoms. It was the worst I had felt in my entire life. I was in the flare of flares because everything was flaring: Hyper POTS, Long Covid, SFN, MCAS, ME/CFS, insomnia, Raynaud’s, brain fog, and asthma.

I had extreme sensory overload. I even struggled to have our dogs on the bed as their moving vibrations would send me into fight/flight. Sunglasses, noise-canceling headphones, strong smells, instant nausea, all of these were part of my daily reality. I felt like I was living in constant panic and stress, unable to relax or enjoy anything. Every stimulus was too much for me, and I often had to retreat to a dark and quiet room to escape the overwhelming sensations. My nervous system was on fire, and nothing could soothe it.

I had been suffering from various symptoms that had made my life miserable. Every night, I woke up gasping for air, feeling suffocating or like my body had forgotten how to breathe. My heart raced and pounded in my chest, and I broke out in cold sweats. I couldn’t get any rest or relief. During the day, I had severe headaches that worsened with any movement. They made me nauseous and sensitive to light and sound. My neck and the base of my skull were sore and stiff.

Sometimes, I heard a ringing or buzzing that wouldn’t go away. My hands shook, and I felt weak and dizzy. I had to check my blood sugar often because it dropped too low or spiked too high. I also had digestive problems that made me uncomfortable and embarrassed. I either had diarrhea or constipation, and I often felt a burning sensation in my throat and chest. I sometimes smelled things that weren’t there, like smoke. I didn’t know how to treat these symptoms, ruining my quality of life.

At various points, it felt like my brain and body were shutting down – I had slurred speech, and I’d lose the ability to move parts of my body. Tossing in bed would spike my heart rate, and I’d get heart palpitations accompanied by shortness of breath.

To make matters worse, that summer, I had to go off my POTS meds twice for a tilt table test, which made me even more dizzy and faint and significantly decreased my overall physical baseline.

There was no clear beginning or end to the PEM. This was rolling PEM. It was clear that I wasn’t recovering from the PEM, and before I knew it, I was compounding my PEM.

I was so debilitated.

There was no relief of symptoms.  

Desperate for Help

I knew there just had to be a way out of this nightmare. Why wasn’t there a PEM or rolling PEM handbook? (It turns out there now is a guidebook on PEM. Check out the ME/CFS Crash Survival Guide https://batemanhornecenter.org/education/mecfs-guidebook/ Accessed 05/15/2023.))

I had taken a self-help ME/CFS course around the time of the COVID reinfection. Still, my post-COVID brain couldn’t remember if there was something I could be doing differently. I thought I was adequately pacing. In hindsight, I was pacing activities as if the reinfection had not impacted my baseline. No matter how much I paced, I continued to get worse. I clearly didn’t understand my condition and was shocked to find myself verging on the edge of severe/very severe ME/CFS.

I frantically searched online, knowing any time spent researching would be met with PEM. However, I pushed myself as I needed additional help and information on managing my severe ME/CFS.

Google searches returned conflicting information about pacing and graded exercise therapy (GET). If only I could speak with someone who has been in my shoes. I DM’d the one person I knew who had MECFS on Instagram, hoping she could guide me. Weeks went by, and I am still waiting for a response.

I reviewed the self-help course material and remembered about pacing with a heart rate monitor. Ten months prior, I quickly abandoned using a heart rate monitor to pace as I was always in the red zone, exceeding my anaerobic threshold when sitting or upright. After extensive searching, I stumbled upon informational videos from the Workwell Foundation. The most illuminating video was of Dr. Mark Van Ness and other researchers explaining that ME/CFS patients have a “broken” aerobic energy system, resulting in energy deficits that exercise (i.e., GET) cannot fix. [4]MEFM Society of BC, “Dr. Mark Van Ness, “Expanding Physical Capability in ME/CFS” Part 1 (of 2),” video, YouTube, May 15, 2016, https://youtu.be/FXN6f53ba6k.

[5]MEFM Society of BC, “Dr. Mark Van Ness, “Expanding Physical Capability in ME/CFS” Part 1 (of 2),” video, YouTube, May 15, 2016, https://youtu.be/FXN6f53ba6k.

The Workwell Foundation is an organization that focuses on research and testing for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID-19, and other fatigue-related illnesses. One of their main goals is to facilitate an understanding of the biological basis for fatigue and post-exertional malaise (PEM), which is a hallmark symptom of ME/CFS. [6]Chronic Fatigue & Covid Symptoms | Workwell Foundation. https://workwellfoundation.org/. Accessed 08/23/2023.

The Workwell Foundation offers a unique testing service called the 2-day cardiopulmonary exercise test (CPET) with electroencephalography (EEG). This test measures the functional capacity and cognitive impairment of people with ME/CFS and long-term COVID-19 and can also confirm a diagnosis by demonstrating PEM. The test involves performing two identical maximal exercise tests on consecutive days while measuring oxygen consumption, heart rate, blood pressure, and brain activity. The results show how the body responds to exertion and recovers from it. [7]Educational Videos About PEM, ME & CFS | Workwell Foundation. https://workwellfoundation.org/educational-videos/. Accessed 08/23/2023. [8]The Workwell Foundation Resource Page for Chronic Fatigue Syndrome …. … Continue reading [9]Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic … https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/. Accessed 08/23/2023.

According to the Workwell Foundation, the energy deficit means that ME/CFS patients have a reduced ability to produce energy from oxygen consumption during exercise, resulting in abnormal physiological responses and increased symptom severity. [10]The Disability Defenders: The Workwell Foundation, Chronic Fatigue …. … Continue reading

Additionally, the Workwell team had a worksheet on the time course of PEM. The worksheet further explained how “Immediate, short-term and long-term PEM symptoms following physical activity can be explained in terms of the damaged energy systems found in ME/CFS.” [11]Workwell Foundation. (2020). Post-exertional malaise: Time course and severity. https://workwellfoundation.org/wp-content/uploads/2023/01/WW-PEM-Timecourse.pdf Accessed 3/23/2023. This was eye-opening!

 

Vicious PEM Cycle

Nearly 19 years into ME/CFS symptoms and 11 months post ME/CFS diagnosis, I finally began to understand PEM!

The PEM was worsening flares; the continuous PEM was making me worse! 🤯🤯🤯

A person pushing a massive boulder up a hill. - The person symbolizes the ME/CFS patient who is trying to cope with their condition and live their life as best as they can. - The boulder symbolizes the burden of symptoms, such as fatigue, pain, brain fog, and others, that the patient must carry daily. - The hill symbolizes the challenge of exertion, which can be physical or mental, that the patient has to face every day. - The endlessness of the hill symbolizes the chronicity of ME/CFS and the lack of recovery from PEM. The patient never reaches the top of the mountain or gets a break from their struggle. - The pushing symbolizes the effort and willpower that the patient has to exert to keep going despite their limitations and difficulties. It also represents the risk of overdoing it and triggering more PEM. This metaphor can convey the sense of frustration, exhaustion, hopelessness, and helplessness that many ME/CFS patients experience when they have rolling PEM. It can also show the need for more awareness, understanding, and support for people with ME/CFS and PEM.
A person pushing a massive boulder up an endless hill is a metaphor that can represent rolling PEM in ME/CFS.

Normally, PEM had a clear onset and offset. I could tell when I had overdone it and triggered a crash, and I could also tell when I recovered from it and returned to my baseline. However, I was experiencing rolling PEM when I didn’t recover from one crash before another hit me. This made me feel like I was constantly worsening symptoms without relief or improvement. [12]What Is Post-Exertional Malaise in CFS? – Verywell Health. https://www.verywellhealth.com/what-is-post-exertional-malaise-716023. Accessed 08/20/2023.

Everything was triggering PEM. From allergic reactions to sitting in bed to walking the 30 steps to the bathroom with Hyper POTS were activating PEM. The more I had to walk in a day, the weaker I started to get. I got to the point where my partner had to carry my body weight for me to go to the bathroom. Eventually, I was so debilitated that I could no longer reach the bathroom and had to rely on a bedside commode.

Rolling PEM can happen for various reasons. Sometimes, I had no choice but to keep pushing myself beyond my limits. Sometimes, it’s because I misjudge my energy levels and think I can do more than I actually can. Sometimes, I encounter unexpected stressors or triggers that drain my resources. Sometimes, it’s because I have an infection or inflammation that adds to my burden. And sometimes, it’s because I have no idea what caused it or how to stop it. [13]Post-exertional malaise – Wikipedia. https://en.wikipedia.org/wiki/Post-exertional_malaise. Accessed 08/20/2023.

I felt trapped in a vicious cycle of suffering. Every day was a struggle to cope with pain, fatigue, cognitive impairment, and emotional distress. I could barely function or care for myself, let alone do anything enjoyable or meaningful. I felt hopeless and helpless, wondering if I would ever get better or if this was my new normal.

Rolling PEM was one of the most challenging and debilitating aspects of ME/CFS. It robbed me of my quality of life and made me feel like a prisoner in my own body.

I was desperate—but not done. This terrifying low point marked a turning point. I realized I needed a completely different approach to pacing, one grounded in physiology, not just guesswork. That’s when I began pacing with a heart rate monitor, and everything started to shift.

In Part 2, I’ll walk you through the exact strategies I used to stabilize and start climbing out of rolling PEM. It wasn’t easy, and it didn’t happen overnight—but it was possible. And if you’re where I was, I want you to know: there is a way forward.

👉 Click here to read Part 2: How I Got Out of Rolling PEM

References

References
1 What Are Activities of Daily Living (ADLs)? – WebMD. https://www.webmd.com/a-to-z-guides/what-are-activities-of-daily-living. Accessed 08/20/2023.
2 Activities of daily living – Wikipedia. https://en.wikipedia.org/wiki/Activities_of_daily_living. Accessed 08/20/2023.
3 What are the 12 Activities of Daily Living? – Devoted Guardians. https://devotedguardians.com/activities-of-daily-living-the-adls/. Accessed 08/20/2023.
4, 5 MEFM Society of BC, “Dr. Mark Van Ness, “Expanding Physical Capability in ME/CFS” Part 1 (of 2),” video, YouTube, May 15, 2016, https://youtu.be/FXN6f53ba6k.
6 Chronic Fatigue & Covid Symptoms | Workwell Foundation. https://workwellfoundation.org/. Accessed 08/23/2023.
7 Educational Videos About PEM, ME & CFS | Workwell Foundation. https://workwellfoundation.org/educational-videos/. Accessed 08/23/2023.
8 The Workwell Foundation Resource Page for Chronic Fatigue Syndrome …. https://www.healthrising.org/exercise-resource-center-chronic-fatigue-syndrome-mecfs/the-workwell-foundation-resource-page-for-chronic-fatigue-syndrome/. Accessed 08/23/2023.
9 Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic … https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/. Accessed 08/23/2023.
10 The Disability Defenders: The Workwell Foundation, Chronic Fatigue …. https://www.healthrising.org/blog/2018/08/02/the-disability-defender-the-workwell-foundation-chronic-fatigue-syndrome-me-cfs-and-fibromyalgia/ Accessed 3/23/2023.
11 Workwell Foundation. (2020). Post-exertional malaise: Time course and severity. https://workwellfoundation.org/wp-content/uploads/2023/01/WW-PEM-Timecourse.pdf Accessed 3/23/2023.
12 What Is Post-Exertional Malaise in CFS? – Verywell Health. https://www.verywellhealth.com/what-is-post-exertional-malaise-716023. Accessed 08/20/2023.
13 Post-exertional malaise – Wikipedia. https://en.wikipedia.org/wiki/Post-exertional_malaise. Accessed 08/20/2023.

How I Escaped the Horror of Rolling PEM

Reading Time: 2 minutes

Hello, and welcome to my blog. In this series, I want to share my experience with rolling PEM, how I overcame it, and how my quality of life improved.

If you are unfamiliar with the term, PEM stands for post-exertional malaise, a core symptom of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It is a severe worsening of symptoms after physical or mental activity exceeding one’s energy limits. Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover entirely from each incidence of overactivity. [1]How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/23/2023.

A woman pushing a huge boulder up a hill is a metaphor that can illustrate the challenges and struggles of living with rolling PEM. The woman represents someone with ME/CFS who has to deal with constant fatigue and pain. The boulder represents the burden of PEM that weighs them down and makes every movement difficult. The hill represents the unpredictability and variability of PEM that makes it hard to plan ahead and cope with changing symptoms. The image can also convey the sense of frustration and hopelessness that some people with ME/CFS may feel when they face rolling PEM.
A woman pushing a huge boulder up a hill is a metaphor that can illustrate the challenges and struggles of living with rolling PEM. The woman represents someone with ME/CFS who has to deal with constant fatigue and pain. The boulder represents the burden of PEM that weighs them down and makes every movement difficult. The hill represents the unpredictability and variability of PEM that makes it hard to plan ahead and cope with changing symptoms. The image can also convey the sense of frustration and hopelessness that some people with ME/CFS may feel when they face rolling PEM.

I know how devastating rolling PEM can be because I experienced it myself. In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I managed to get out of rolling PEM with the help of pacing, heart rate monitoring, and other strategies (part 2). I will also share with you how my quality of life improved after breaking the cycle of rolling PEM and what I learned from this journey (part 3).

I want to inspire and encourage others struggling with rolling PEM or ME/CFS by sharing my story. Raising awareness about this condition can hopefully contribute to more research, support, and recognition for people with ME/CFS.

So, let’s get started!

You can find the other parts of this series at these links:

References

References
1 How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/23/2023.

Rolling PEM: What It Is and How to Avoid It

Reading Time: 4 minutes

If you have ME/CFS or Long COVID, you may be familiar with the term post-exertional malaise (PEM), which refers to the worsening of symptoms after physical or mental activity that would not have caused a problem before illness. [1]Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023. PEM can last for days, weeks, or longer and can affect any aspect of your health, such as fatigue, pain, sleep, cognition, mood, and more. [2]ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. … Continue reading

What is Rolling PEM?

But did you know that there is another type of PEM that can be even more harmful? It’s called rolling PEM and it occurs when you don’t recover fully after each day or crash and the PEM accumulates gradually over time. [3]How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/19/2023. This means that you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity.

Rolling PEM can be hard to recognize because it may not cause an immediate or noticeable crash. Instead, it may manifest as a gradual decline in your functional capacity, quality of life, and overall health. Rolling PEM can also make it harder for you to find your energy envelope – the range of activity that you can do without triggering PEM.

Compounded PEM is another term for rolling PEM, as it implies that the PEM is compounded or added up by each episode of exertion. Both terms describe the same phenomenon of delayed and prolonged PEM that can be hard to identify and manage.

Some factors that can contribute to rolling PEM are:

  • Not knowing your energy limits or how much activity you can tolerate without triggering PEM
  • Feeling pressured by yourself or others to do more than you can handle
  • Having unpredictable symptoms that vary from day to day or hour to hour
  • Having other medical conditions that require treatment or attention
  • Experiencing stress, emotional distress, infections, allergies, weather changes, or other triggers that worsen your symptoms

Person rolling immense boulder uphill. The text PEM appears in the middle of the boulder.
Rolling PEM is as hard as rolling an immense boulder uphill: it requires constant effort, a lot of strength and perseverance.

So how can you avoid rolling PEM?

The key is to pace yourself and manage your energy wisely. Pacing is an approach that helps you keep all energy expenditures – physical, cognitive, and emotional – within limits that can be tolerated by your body. Pacing can help you minimize or prevent PEM by helping you recognize your energy limits and adjust your activities accordingly.

Here are some tips on how to pace yourself and break free from rolling PEM:

  • Keep a daily diary of your symptoms and activities. [4]Managing Post-Exertional Malaise (PEM) in ME/CFS – Centers for Disease …. https://www.cdc.gov/me-cfs/pdfs/interagency/Managing-PEM_508.pdf Accessed 3/19/2023. This can help you identify your personal triggers and limits for physical and mental exertion. You may notice patterns such as how long it takes for PEM to start after an activity, how long it lasts, and what helps you recover.
  • Plan ahead and prioritize your tasks. Break down larger tasks into smaller steps and spread them out over time. Schedule rest breaks before, during, and after activities. Avoid doing too much on good days or too little on bad days.
  • Use tools such as heart rate monitors or activity trackers to monitor your exertion level. Some people with ME/CFS have a lowered anaerobic threshold, which means they enter into an energy deficit when their heart rate goes above a certain point. [5]Centers for Disease Control and Prevention (CDC). Managing Post‑Exertional Malaise (PEM) in ME/CFS. U.S. Department of Health and Human Services, 2021. … Continue reading Keeping your heart rate below this point can help you avoid overexertion and PEM.
  • Listen to your body and respect its signals. If you feel tired, sore, dizzy, foggy, or any other symptom of PEM coming on, stop what you are doing and rest until you feel better. [6]Pacing | ME/CFS SA. https://mecfssa.org.au/resources/pacing Accessed 3/19/2023. Do not push yourself beyond your capacity or ignore warning signs.
  • Familiarize yourself with the Workwell Foundation’s PEM Timecourse. The document summarizes the immediate, short-term and long- term PEM symptoms that may appear after physical activity.
  • Seek professional guidance if possible. A rehabilitation specialist who understands ME/CFS may be able to help you design an individualized activity plan that suits your needs and goals.

Pacing may not be easy at first but it can become a habit with practice. By avoiding rolling PEM through pacing, you may be able to stabilize your symptoms, improve your well-being, and increase your function in the long term.

I’d love to hear from you. Please leave a comment below and tell me what you think about rolling PEM and how it affects your life.

For more insights on my own experience with rolling PEM and how I overcame it check out my other blog post.

References

References
1 Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023.
2 ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/ .
3 How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/19/2023.
4 Managing Post-Exertional Malaise (PEM) in ME/CFS – Centers for Disease …. https://www.cdc.gov/me-cfs/pdfs/interagency/Managing-PEM_508.pdf Accessed 3/19/2023.
5
Centers for Disease Control and Prevention (CDC). Managing Post‑Exertional Malaise (PEM) in ME/CFS. U.S. Department of Health and Human Services, 2021. https://www.cdc.gov/me-cfs/pdfs/toolkit/Managing‑PEM_508.pdf
6 Pacing | ME/CFS SA. https://mecfssa.org.au/resources/pacing Accessed 3/19/2023.

Sensory Overload

Reading Time: 2 minutes

Carol laying on pillow and wearing dark sunglasses and noise canceling headphones.
I spent half of June and half of July living in sensory overload.

This is an excerpt from an IG post I wanted to share in June 2021 that I never got around to posting.


⚠️ ⚠️ This is sensory overload!!!!!

Out of the 8 senses, 2 of them are acting up, and 3 of them are overloaded.

It has been 43 days since my sense of smell and taste began acting up. Smells and tastes come and go. They can be working fine & two hours later they go off grid. Or sometimes yummy things taste like fish.

My sense of sight, sound, & touch are through the roof! I’ve experienced sensory overload for a large chunk of my life, but this is sensory overload on STEROIDS.

I’m spending all day in a quiet, dark room with eyemask/sunglasses and noise canceling headphones. Any little touch or vibration of my bed sends my body into fight or flight.

I went downstairs to work on my pills, but the sound of the TV was too overwhelming. Despite wearing noise canceling headphones it felt like my head was inside a pinball machine. With every little 🛎 ding blasting in my ears.

This is Dysautonomia. My nervous system is unbalanced and right now the sympathetic system is dominating.

The autonomic nervous system is in charge of processing stimuli, and Dysautonomia has messed up the body’s ability to process the world around me from noises, temperatures, lights, smells, tastes, and touches.

The last time my sensory overload was this horrible was during/after Super Bowl Sunday when my body was battling a Covid re-infection.

I’m feeling trapped, and doing what I can to stay away from triggers until my sympathetic nervous system is more stable.


With aggressive rest and pacing with a heart rate monitor, I was able to stabilize the sensory overload. In hindsight, the extreme sensory overload was due to rolling crashes. I had been in a perpetual crash since August 2020.

Long Covid: Frightening Nightmares IRL

Reading Time: 4 minutes

Thanks to Long Covid, I’m reliving parts of my worst living nightmares: the nightmares of living with untreated Lyme disease and co-infections and the agony of my concussions all over again.

Obscure and low visibility image of person. The text on the image reads: “Long Covid presents NIGHTMARES IN REAL LIFE.. neurological symptoms similar to post concussion syndrome and neurological Lyme”

The similarities between Long Covid, late-stage neurological Lyme, and post-concussion syndrome are uncanny. Add breathing difficulties on top of neurological symptoms, and everything seems compounded.

I keep telling myself, these symptoms should feel more manageable this time around because I’ve had them before. But they feel much more challenging – I don’t have school or work to distract me from these terrifying symptoms. There’s no escaping them.

Last year, I powered thru these symptoms because I was focused on surviving my 40+ hours of work. I wasn’t living. I was surviving.

I was too exhausted to process symptoms. Too exhausted to acknowledge how they were negatively affecting my health. I was pushing, pushing, pushing. 

This year, I’m too sick to work, some days needing help just getting to the bathroom without falling.

The many neurological symptoms I had for years and had gone away with Lyme disease treatment have made a comeback thanks in part to Long Covid.

They wax and wane. The symptoms play tricks on my mind. Give me the hope that they’re gone. Bam! They strike with full force!

  • 🔔 Swoosh! Buzz! Ding! That’s the ringing (tinnitus) in my ears.
  • 💓⚡🔨🧊⛏💨 Throbbing, zaps, pounding, pressure, and ice picks thru my skull. 🤕 5 different types of headaches, just like in 2015. 
  • 🤚 Worsening tremors that make my hands and fingers shaky and unsteady.
  • 💬 Interrupted speech and stuttering. By the end of a long day, my talking becomes slurred.
  • 🧠🌫Worsening brain fog, along with lapses of short-term memory.
  • 👄👃 Tingling above my upper lip and sometimes below it, and on my nose.
  • 🦵🙋‍♀️ Pins and needles randomly throughout my legs or arms.
  • 🦶✋👂 There’s burning and swelling of my feet, hands, and ears not related to mast cell activation.
  • 🦵🦶✋ Tiny muscle twitches felt on my face, hands, legs, feet, and toes. 
  • 👁 Eye blurriness and strain. Pressure pain behind both eyes. 👀
  • 💤 Sleep that is now interrupted by adrenaline surges or gasping for air.
  • 😴The terrifying visual disturbances and hallucinations at the onset of sleep, just like after my concussion in 2019. (❂‿❂)( ゚∀゚)

Most of these symptoms are symptoms I experienced after concussions or when I had untreated Lyme disease and other tick-borne infections.

With both concussions and Lyme disease, I experienced severe dizziness and balance problems. With Lyme, I had dizziness for 3 years before I was able to see a neurologist. They didn’t provide any help, just referred me for tests. It wasn’t until I started IV antibiotics in April 2018 that my dizziness began to get better a few months after. After my concussion in 2019, I had balance problems for 3-4 months after it. I couldn’t drive for a full month after my concussion.

Unlike Lyme, I’m not experiencing vertigo or temporary paralysis, and I’m grateful for that. With Lyme, I would have bouts of temporary paralysis every couple of months. Lasting several minutes, these episodes would temporarily make my muscles stiff, and I would be unable to move. I’d be locked and trapped in place. My face would get stuck, everything from my cheeks below would get pulled down, and I’d struggle to communicate.

My last temporary paralysis episode was in April 2020, about a month into my 1st Covid infection. I don’t think it was Lyme related because my last Lyme-related temporary paralysis was in mid 2019 right before going back on IV antibiotics.

I had concussions in 2011, and 2019. There might have been one in between those 2 but I’m having trouble with memory. After those concussions, I had severe neurological symptoms and gastrointestinal symptoms. My last concussion caused intense vertigo, and an escalation in my POTS symptoms. For now, I pray the vertigo stays away and my POTS doesn’t get worse.

It’s taken me over a week to compose this. It’s the same struggle I had with writing from 2008-2018.

My brain has previously recovered from these symptoms. I’m doing all that I can to help my brain recover again. I remind myself that this, too, shall pass. But I’m fearful. I’m afraid I need additional help. 

My own neurologist has recommended I get my Covid vaccine as soon as possible as it may help with symptoms. But I’m stuck. I need to wait 90 to 180 days since my re-infection to get the vaccine.

I’m hoping my doctor can prescribe hyperbaric oxygen therapy again. After my concussion in 2019, I did 20 sessions of HBOT, and they improved my symptoms by about 80%. I’m hoping and praying for similar results.

This is my living nightmare and it continues. I hope you don’t ever have to live your nightmares IRL. It’s terrifying to say the least.

I’m too exhausted to keep writing, but eventually when things look up, I would like to create an info graphic that lists all of the neurological symptoms of Neurological Lyme Disease, post concussion syndrome, and Long Covid. I think it’s important in seeing and showing the connections of post infectious illness with brain injury. Lyme did not just damage my joints, it also infiltrated my brain and wreaked havoc for years.

I could force myself to work on that content or I could force myself to rest. For now, I need to choose me and my rest.

Nondisabled Privilege

Reading Time: 3 minutes

I knew I was privileged when I got accepted into college and received a full 4-year scholarship. It takes plenty of privilege to succeed in high school, and it takes even more, to graduate from college.

I’ve lived a privileged life, no doubt about it. But you see, some of that privilege came tumbling down as my health issues interfered with my daily life and higher education pursuits.

I was denied the privilege granted to those who are nondisabled or without a chronic illness.

alt=There is privilege in pursuing higher education, but there is greater privilege in pursuing it without a disability or chronic illness.

Within the matter of first 2 months of school, I developed a sinus infection, then the flu, which led to bronchitis on top of my ongoing medical conditions.

I was drowning in health issues and sickness, and begging my professors for a life vest. Most professors were understanding and accommodating.

There was one professor who consistently questioned and invalidated my experiences.

Her ableist views influenced how little leeway she was willing to give me.

Her ableist views based on knowing someone with Celiac disease and her own personal experience with an incurable illness dictated how she treated me.

I felt ashamed for being unable to push through my health problems as she had done; I felt inferior, begging for accommodations from her.

I needed accommodations. And I naively thought I could be open to my professor about my health struggles.

Interactions with this #AbleistEducator either after class or during office hours centered on her saying dismissive things about my symptoms. I couldn’t possibly be experiencing the symptoms I described from Celiac disease. I couldn’t possibly be as sick as I described; I didn’t look sick after all. 

I requested flexibility in her attendance policy.

I had documented chronic health problems: chronic and episodic symptoms, which caused difficulties with regular class attendance and completing work.

I was still completing all my coursework even though I was having trouble attending class and meeting deadlines.

This professor made me feel that my chronic illness detrimentally threatened the integrity of her course. I don’t think she ever considered how my chronic conditions threatened my dignity and wellbeing.

Swipe to see some of the correspondence between this #AbleistEducator and me.

Swipe to see how I poured it all out for my professor in the last email and never heard back from her.

I wasn’t begging for a grade I didn’t deserve; I was simply begging for accommodation.

Even while I experienced the privilege of pursuing higher education, I was denied the privilege granted to those who are nondisabled. 

As Allan G Johnson points out in Privilege, Power, and Difference: 

  • “Nondisabled people don’t have to worry about their disability status being used against them when trying to fit in at work or whether teammates will feel comfortable working with them”
  • “Nondisabled people can assume that they will fit in at work and in other settings without having to worry about being evaluated and judged according to preconceived notions and stereotypes about people with disabilities”
  • “Nondisabled people are more likely [..] to be given a second chance when they fail, and to be allowed to treat failure as a learning experience rather than as an indication of who they are”

Nondisabled students and students without a chronic illness don’t have to worry about proving a disability or their chronic illness to their professors. 

Nondisabled students and students without a chronic illness don’t have to deal with the exhaustion of disability or chronic illness. 

So you see, there is a far greater privilege to pursuing higher education without a disability or chronic illness. 

Why Ticked Off Codess?

Reading Time: 4 minutes

Hello, I’m Carol, and I’m a ‘Ticked Off Codess.’ In this post, I’ll delve into what it means to be a ‘Codess’ and why I’ve got every reason to be ticked off.

As someone who has struggled with chronic illness most of her life, I’ve had to fight for my health in more ways than most can understand. I was raised to believe in equality and perfection. Yet, I was always treated differently because of my gender. Any disappointment was not acceptable and often met with anger from my parents.