A step-by-step lying down shower routine for when standing isn’t an option
The first thing I notice is the warmth. Warm water running over my feet, my legs, my shoulders — all while I’m lying flat on the shower floor. My partner adjusts the handheld shower head. The bathroom is already warm from the space heater we turned on an hour ago. For the next 45 minutes, I don’t have to be anywhere. I just get to be clean.
For most people, a shower is mindless. For me, it’s a project — one that takes a transport chair, my partner’s help, and a whole lot of planning. Living with severe ME/CFS and HyperPOTS means standing in hot water can trigger dizziness, shaking, and the kind of crash that takes days to recover from. So about once a month, I shower lying down on the bathroom floor.
It’s genuinely one of the best parts of my month.
This is what works for my body. If you’re living with a similar condition, I hope it gives you a starting point — but please adapt everything to your own needs and energy levels.
A note for those with MCAS: If your mast cell activation syndrome isn’t well managed, exfoliating scrubs and new products can potentially trigger a reaction. Please test any new product on a small area first and wait to see how your body responds before using it more broadly.
For a long time, shower day was something I dreaded. I’d put it off as long as I could — not because I didn’t want to be clean, but because every attempt left me wrecked. Sitting on a shower chair still triggered my POTS. The heat made my heart race. By the time I was done, I’d be shaking and would need days to recover. Sometimes the crash would be so bad I’d think, was it even worth it?
I started to accept that maybe showers just weren’t something my body could do anymore. But giving up on something that basic didn’t sit right with either of us — so my partner and I started experimenting. What if I didn’t have to sit up at all? What if we brought the shower to me, on the floor?
It took a few rounds of trial and error. The first time we tried it without a bath pillow and I lasted about ten minutes on the hard tile before we gave up. We learned that a standard shower hose is useless when you’re lying down — it barely reaches your hips. We learned that the bathroom needs to be pre-warmed or the whole thing falls apart. But slowly, we figured out a system. And now, once a month, it works.
My Lying-Down Shower Routine
My 6-step lying-down shower routine for severe ME/CFS and HyperPOTS — from prep and transport chair transfers to exfoliation, hair washing for seborrheic dermatitis, and energy-saving drying. The full routine takes about 45 minutes with a partner’s help, and it’s the one day a month I feel like myself again.
Before we start, my partner and I do a little prep: we turn off the A/C about an hour beforehand and sometimes bring a small space heater into the bathroom. Staying warm throughout the process is critical — chills can ruin the whole experience and waste precious energy. We also lay towels out on the bed for drying off afterward, so everything is ready before I use any energy.
When it’s time, my partner wheels me from the bed to the bathroom in a transport chair, then helps me get settled on the shower floor. Here’s how the shower itself works:
1. Set up a comfortable base. We lay a full-body bath pillow on the shower floor so I can lie flat with head, neck, and back support. This makes a huge difference — without it, the hard floor would make the whole thing miserable.
2. Use a handheld shower head with an extra-long hose. I hold the shower head myself and adjust the water as needed. An extra-long shower hose is a game-changer — anything standard length and I’d have to sit up to rinse my legs. We use a 198-inch hose, though in hindsight the 138-inch would have been plenty. Either way, the length means I can reach every part of my body without straining or changing position.
3. Hair wash. This is the most time-consuming step. I have seborrheic dermatitis, so I need to use medicated shampoos that have to sit on my scalp for about ten minutes to be effective. Between the application, the wait time, and rinsing, my hair routine alone accounts for a big chunk of the 45 minutes. But skipping it isn’t an option — when you only shower once a month, your scalp needs the extra care.
4. Deep exfoliation. Since I can only shower once a month, exfoliation is essential. We use a deep exfoliating mitt to gently remove the buildup of dead skin. Important: don’t use soap on the mitt — it actually makes it less effective. Just use it on wet skin. This step alone makes a noticeable difference in how clean I feel afterward.
5. Scrub and cleanse. After exfoliating, I apply a nourishing body scrub and follow up with a silicone body scrubber for gentle, thorough cleansing. The silicone scrubber is easy to grip and soft enough for sensitive skin, which matters when your body is already under stress.
6. Dry off without getting up. Getting up and toweling off would undo all the energy savings, so instead, my partner helps me slip into a cozy bathrobe while I’m still on the shower floor. Then I get back into the transport chair and my partner wheels me to the bed, where we’ve already laid out towels. I lie down and air dry. No standing, no rubbing, no extra exertion.
It’s definitely a process, and it took us a few tries to get the setup right. But it leaves me feeling refreshed, clean, and cared for — without triggering a full-on crash.
A Note About My Partner
I want to pause and say something about the person who makes all of this possible. Shower day isn’t just a big deal for me — it’s a commitment from my partner too. They prep the bathroom, help me transfer, manage the water temperature, assist with the steps I can’t do alone, and then get me settled back in bed afterward. It’s 45 minutes of focused, hands-on care.
I know not everyone has a partner or caregiver who can help with this, and I don’t take it for granted. If you do have someone willing, I’d encourage you to talk through the routine together before attempting it. Having a plan makes it less stressful for both of you. And to the caregivers reading this — what you do matters more than you know.
Products That Make This Possible
Here are the tools I rely on, matched to each step of the routine. I’ve tried to include what I actually think of each one, not just what it does.
For lying down comfortably:
VOXOR Full Body Bath Pillow (60” x 16”) — This is the foundation of the whole routine. It cushions my entire body on the shower floor with a built-in headrest for neck and back support. We tried a regular bath mat first — it was not even close. The VOXOR is thick enough to actually be comfortable for 45 minutes, which is the real test. Worth every penny.
For reaching everything from the floor:
OFFO Ultra-Flex Shower Hose, 198 in (Matte Black) — An extra-long hose is non-negotiable. We started with the standard hose that came with our shower head, and it was immediately obvious it wouldn’t work — I couldn’t rinse anything below my waist without sitting up. We bought the 198-inch version, and while it definitely reaches everywhere, in retrospect it’s longer than we actually need — the excess hose can be a bit much to manage on the floor. If I were buying again, I’d go with the 138-inch version from the same brand. Either way, anything over 100 inches will transform this routine.
SR SUN RISE 9-Settings High-Pressure Handheld Shower Head (Matte Black) — Nine spray settings, detachable with a wall mount bracket, and lighter than a lot of other shower heads I’ve looked at. The gentle rain setting is what I use most — strong enough to rinse shampoo but not so intense that it’s overwhelming when you’re lying right under it.
For exfoliating and cleansing:
Dermasuri Deep Exfoliating Glove — This is the product that makes the biggest visible difference. After a month between showers, the dead skin buildup is real, and this mitt gets rid of all of it. Be gentle though — a little pressure goes a long way, and you might be surprised at the results. And remember: no soap on this mitt, just wet skin. Soap actually reduces its effectiveness, which I learned the hard way.
Olay Indulgent Mineral Scrub, Guava & Coconut (11 oz) — This one is purely a treat. It’s nourishing, has exfoliating pearls and a BHA formula for gentle chemical exfoliation, and it smells incredible. After using the Dermasuri, applying this scrub feels like an actual spa experience. It’s the part of the routine that makes shower day feel special instead of just functional.
Sud Scrub Antimicrobial Silicone Body Scrubber (Pink) — I use this with the Olay scrub for the final cleansing pass. It’s soft, antimicrobial (so it doesn’t get gross between monthly uses), and the built-in handle makes it easy to grip even when my hands are wet and I have zero energy for squeezing. Gentle enough for sensitive skin, which is a must for me.
What I Wish I’d Known
If you’re thinking about trying a lying down shower routine, here are a few things I learned the hard way:
You need a much longer hose than you think — but not too long. A standard shower hose is maybe 60 inches. When you’re lying on the floor, that barely reaches your midsection. We bought the 198-inch version, which works but is honestly more hose than we need — there’s a lot of extra length to manage on the floor. In retrospect, the 138-inch hose would have been the sweet spot.
Pre-warm the bathroom. I cannot stress this enough. Even if the water is warm, lying wet on the floor in a cold room will make you miserable and can waste energy you don’t have. Turn off the A/C and turn on the heater or bring in a small space heater at least an hour before.
Don’t skip the bath pillow. We tried cushioned bath mats, folded towels, even a yoga mat. None of them were comfortable for more than a few minutes. A proper full-body bath pillow is the difference between a routine you dread and one you look forward to.
The Dermasuri mitt works best without soap. I used it with soap for the first few months and thought it was fine. Then I tried it on just wet skin and the difference was dramatic. Save the soap and scrub for after exfoliating.
It’s okay if the first time is rough. Our first attempt was awkward, uncomfortable, and we didn’t finish. It took three or four tries before we had a system that actually worked. Don’t give up after one go.
Why This Works for Me
Showering lying down won’t work for everyone, and it took us a few tries to figure out the right setup. But for me, it minimizes dizziness, prevents overheating, and makes real hygiene possible even at my lowest.
I don’t do it daily — once a month is what my body allows. But on that day, I feel like myself again. There’s something about being truly clean that goes beyond physical comfort. It’s dignity. It’s a small thing that feels enormous when your world has gotten very small.
If you’re living with severe ME, POTS, or any condition that makes standing showers unsafe, I hope this gives you a starting point. You deserve to feel clean and cared for, even on your hardest days.
I’d love to hear from you. If you’ve found ways to make showering work with limited energy — lying down, seated, or something else entirely — share your tips in the comments. The more ideas we put out there, the more people we help.
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.
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.
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:
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
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.
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 luteolintwice 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
Name
Frequency
Why?
Cromolyn Sodium
a.c.
MCAS: mast cell stabilizer
Cyproheptadine
q.h.s.
MCAS: h1 blocker and ability to block serotonin receptors
Famotidine 20mg
b.i.d.
MCAS: h2 blocker
Hydroxyzine* 25mg, 50-75mg
a.c., q.h.s.
MCAS: h1 blocker
Ketotifen 3mg
t.i.d.
MCAS: mast cell stabilizer
Montelukast 10mg
q.h.s.
MCAS: allergic asthma
Naltrexone, low dose 4.5mg
q.d.
Reduce T cell dysfunction (T cell micro parts activate mast cells)
Zofran
prn.
MCAS: 5-HT3 blocker
OTCs
Name
Frequency
Why?
Benadryl 25mg
prn.
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
Name
Frequency
Why?
Liposomal Glutathione
q.d.
MCAS: reduces oxidative stress, stabilizes immune responses, and protects tissues from inflammation
Liposomal Vitamin C 500mg
q.d.
MCAS: breakdown histamine, stabilize mast cells
Luteolin 100mg
b.i.d.
MCAS: prevents mast cell degranulation
NAC 600mg
q.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 250-500mg
b.i.d.
MCAS: stabilize mast cells
Umbrellux DAO
a.c.
MCAS: break down food derived histamine
Vitamin C 500mg/75mg bioflavonoids
q.d.
MCAS: breakdown histamine, stabilize mast cells
Vitamin D 5000 IU
q.d.
MCAS:
Intravenous
Name
Frequency
Why?
Benadryl IV
prn.
MCAS: anti-histamine
Injection
Name
Frequency
Why?
Aimovig 70mg
q.4week
Chronic Migraines: CGRP inhibitor, CGRP involved in mast cell degranulation
Epi-pen
prn.
MCAS: Anaphylaxis
Xolair 300mg/ml
q.4week/
MCAS: a monoclonal antibody that reduces the sensitivity of mast cells to allergens and other triggers
Nasal Inhalation
Name
Frequency
Why?
Xhance Nasal Spray 93mcg
b.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 Medicine, https://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 Drugs, https://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.
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.
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.
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 Longevity, https://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 Medicine, https://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 Chemistry, https://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 Pharmacology, https://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 & Therapeutics, https://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 Acta, https://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.
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.
Pizzino et al., “Oxidative Stress: Harms and Benefits for Human Health,” Oxidative Medicine and Cellular Longevity, https://doi.org/10.1155/2017/8416763
Forman et al., “Glutathione: Overview of Its Protective Roles, Measurement, and Biosynthesis,” Molecular Aspects of Medicine, https://doi.org/10.1016/j.mam.2008.08.006
Ballatori et al., “Glutathione Dysregulation and the Etiology and Progression of Human Diseases,” Biological Chemistry, https://doi.org/10.1515/BC.2009.033
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
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 Cell–Dependent Diseases.” Journal of Neuroinflammation 12 (1): 19. https://doi.org/10.1186/s12974-014-0236-5.
Petrosino and Di Marzo, “The Pharmacology of Palmitoylethanolamide and First Data on the Therapeutic Efficacy of Some of Its New Formulations,” British Journal of Pharmacology, https://doi.org/10.1111/bph.12220
Facci et al., “Mast Cells Express a Peripheral Cannabinoid Receptor with Differential Sensitivity to Anandamide and Palmitoylethanolamide,” Proceedings of the National Academy of Sciences, https://doi.org/10.1073/pnas.98.14.8025
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.
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.
Reading Time: 8minutesVisual 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.
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:
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.
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.
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.
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.
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.
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:
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.
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.
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.
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:
I know what it’s like to be in the thick of it—too sick to think straight, too crashed to plan, too exhausted to read a 34-minute blog post. If that’s you right now, you don’t need to read this whole thing. Start here:
Getting out of rolling PEM wasn’t one thing—it was a combination of strategies layered on top of each other over several months. If I had to name what made the biggest difference, it would be three shifts: committing to Aggressive Rest Therapy as a non-negotiable foundation, using a heart rate monitor to pace by data instead of guesswork, and finally getting my comorbidities (especially Hyper POTS and MCAS) under enough control that my body could actually benefit from rest. Everything else I share here—setting boundaries, tracking HRV, breaking down tasks, using mobility aids—built on top of those three pillars. You don’t have to read this post start to finish. Use the Table of Contents below to jump to whatever feels most relevant to where you are right now.
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.
A Note Before We Begin
Before I share what helped me, I want to be honest about something: I had advantages that not everyone has. I have a loving, understanding partner who stepped up in ways that made pacing possible. I don’t face the financial pressure of needing to work through crashes. I live in a quiet, accessible home. These aren’t things I earned—they’re circumstances I’m deeply grateful for, and I know they made strategies like aggressive rest and delegation realistic for me in ways they aren’t for everyone.
I also want to name the barriers that make pacing difficult or impossible for many people with ME/CFS: lack of support from people who believe you, lack of income or financial stability, and lack of accessible environments. These are structural problems, not personal failures, and they deserve far more attention than they get.
Your Mileage May Vary. ME/CFS is not one-size-fits-all. What helped me may not help you, and what worked for my body may not be safe or accessible for yours. Please treat this post as a story, not a prescription, and work with a medical provider before making changes to your care plan.
Disclaimer: I am not a medical professional. The content of this blog is based on my personal experience and self-directed research. Nothing here should be interpreted as medical advice, diagnosis, or treatment. Use of this information is at your own risk. Full disclaimer at the bottom of this post.
I share my story because I believe lived experience matters. If you can pace, I hope this helps you refine your strategy. If you can’t, I see you—and I’m writing this in solidarity with you, too. 💛
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.
If you have a caregiver or partner who wants to help but isn’t sure how, I created a two-page guide you can share with them: [Download the Caregiver Guide (PDF)].
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.
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
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.
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?”
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.”
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.”
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.
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
For months, I had one explanation for everything wrong with my body: ME/CFS. The dizziness, the gut problems, the pain that migrated without warning, the sleep that never restored me—all filed under the same diagnosis. One enemy. One explanation. It was simpler that way.
Then I saw my heart rate data and realized my resting heart rate was spiking 60-plus beats per minute just from sitting up—and I understood that I wasn’t fighting one condition. I was fighting a dozen, stacked on top of each other, each making the others worse.
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.
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.
There was a period when I genuinely believed ME/CFS was responsible for everything happening in my body. Every new symptom—the dizziness, the gut problems, the pain that moved around like it had its own agenda—I filed under “ME/CFS is getting worse.” And in a way, that made things simpler. One enemy. One explanation.
But then something happened that cracked that story open. I’d been tracking my heart rate with the Polar H10, and I noticed my resting heart rate was spiking 60-plus beats per minute just from sitting up. Not walking. Not standing. Sitting. I showed the data to my electrophysiologist, and she confirmed what the numbers were screaming: my Hyperadrenergic POTS was nowhere near controlled.
That was the moment I realized I wasn’t fighting one thing—I was fighting a dozen things stacked on top of each other, and they were all making each other worse. The POTS was spiking my heart rate, which was burning through energy, which was triggering PEM, which was worsening my MCAS, which was driving inflammation, which was disrupting my sleep, which was making everything harder to tolerate. It was a cascade, and ME/CFS was at the center of it—but it wasn’t the only player.
Once I started treating the comorbidities as separate conditions that deserved their own attention—not just as “more ME/CFS symptoms”—things began to shift. Not overnight. Not dramatically. But the constant noise in my body got a little quieter, and for the first time in months, I could hear what my body actually needed underneath all that chaos.
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. My MCAS Kitchen Sink Protocol is one example of how this layered approach works in practice.
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. For a full breakdown of the layered approach I use, see my post on the MCAS Kitchen Sink Protocol.
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.
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 mobility and accessibility aids specifically helped me:
Reducing orthostatic strain: Unlike other pacing strategies that manage how much I do, mobility aids changed how my body was positioned while doing it. A transport chair meant I could get to the bathroom without my heart rate spiking from standing and walking. A cushioned bath mat let me shower lying down. These weren’t just energy-savers—they removed the orthostatic trigger entirely.
Preventing falls and injury: With presyncope and syncope happening regularly, safety became as important as energy conservation. Grab bars, anti-slip mats, and the transport chair meant I wasn’t risking a fall every time I moved.
Preserving dignity and autonomy: This is the part that doesn’t show up on a heart rate graph. Being able to brush my teeth, eat a meal, or get clean—even in adapted ways—meant I was still participating in my own life. A lap desk repurposed as a food tray, an electric toothbrush used lying in bed—these small modifications kept me from losing myself entirely to the illness.
Making caregiving sustainable for my partner: Aids didn’t just help me—they made it easier for my partner to help me safely. A transport chair is easier to push than supporting someone’s full weight. These tools protected both of us.
💡 Like every strategy in this post, mobility aids helped me conserve energy and reduce my risk of PEM. What made them distinct was how they addressed the physical and safety barriers that other pacing strategies couldn’t.
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
I almost pushed through on a day that would have cost me a week — because my data told me I was fine.
That morning, my Oura Ring showed an HRV reading well above my recent baseline. On paper, it looked like my best recovery night in weeks. But my body told a different story: heavy, foggy, wired-but-tired. I chose to trust my body over the number, and by evening it was clear I’d narrowly avoided a serious crash.
That experience changed how I use Heart Rate Variability — and it’s why I want to share both the power and the pitfalls of HRV-informed pacing.
For anyone unfamiliar, HRV measures the variation in time between heartbeats. It’s essentially a window into your autonomic nervous system — how balanced your “fight or flight” and “rest and digest” responses are at any given moment. For someone like me, living with Hyperadrenergic POTS layered on top of ME/CFS, my nervous system almost always defaulted to high alert. HRV gave me objective feedback on how strained or recovered my system was, which meant I could adjust my pacing before a crash hit — not after.
How I Tracked It
I used different tools for different windows of data. Overnight, I wore an Oura Ring and used SweetBeatHRV to see how my body recovered (or didn’t) while I slept. In the morning, before I moved or did anything, I’d take a reading with Elite HRV or HRV4Training paired with my Polar H10 chest strap. Lying completely still with the chest strap gave me the cleanest, most consistent numbers — and consistency mattered more than any single reading.
What the Numbers Told Me
Over time, I learned to read my HRV the way you learn to read weather patterns — not as a single forecast, but as a trend.
When my HRV was low compared to my personal baseline and my resting heart rate was creeping up, I knew my system was under stress. Those days were non-negotiable rest days. I paused everything, leaned into aggressive rest, hydrated, and did grounding exercises. No exceptions — because I’d learned what happened when I ignored those signals.
When my HRV was stable or slightly higher than usual, and my resting heart rate looked normal, and I wasn’t feeling crash symptoms — then I could cautiously do something small. Maybe journal for a few minutes. Maybe listen to a short meditation. Maybe reply to one message. Nothing ambitious. Just one small thing, and then I’d check in with myself again.
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 dominance as a form of overcompensation—a pattern common in some people with ME/CFS.
I remember the morning it clicked. I checked my Oura Ring data and saw an HRV reading that was significantly higher than my recent average. On paper, it looked like my best recovery night in weeks. I felt a surge of hope—maybe today I could sit up a little longer, maybe reply to a few messages, maybe even listen to a podcast.
But something felt off. My body was heavy in a way that didn’t match the numbers. My thinking was slow and thick, like wading through fog. I was wired but exhausted—that specific combination that I’d learned to dread.
I almost ignored it. The data said I was recovering. My body said otherwise.
That day, I chose to trust my body. I stayed horizontal, kept the room dark, and did nothing. By evening, the heaviness had deepened into what would have been the start of a crash—except I’d caught it. If I’d trusted the number and pushed through, I would have lost days.
That experience taught me something I now consider essential: HRV is a tool, not a verdict. A high reading can mean genuine recovery—or it can mean your nervous system is overcompensating, swinging into parasympathetic dominance under stress. I learned to never read HRV in isolation. I always cross-reference it with my resting heart rate, my sleep quality, my symptom load, and honestly, how I feel when I first open my eyes. The number is one voice in the conversation. My body gets the final word.
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
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
I want to be upfront about this one: when my ME specialist first suggested I try low-dose Abilify, I hesitated. Abilify is an antipsychotic medication, and the stigma around that label was hard to get past. I’d actually been on it before and noticed improvements in my energy and mood, but I’d stopped — partly because of cost, and partly because I didn’t want to be on “that kind” of medication.
But my specialist explained something that changed how I thought about it. At the doses typically prescribed for psychiatric conditions, Abilify works one way. At very low doses — between 0.25 and 2.5 mg daily — it appears to do something quite different. It acts as a dopamine system stabilizer, meaning it can nudge dopamine activity up or down depending on what the brain needs. And dopamine matters a lot in ME/CFS: it drives motivation, energy, mood, and motor function, and research suggests that people with ME/CFS may have reduced dopamine activity, particularly in brain regions that regulate motivation and movement. Low dopamine levels may also contribute to neuroinflammation — the kind of immune response in the brain that fuels fatigue, pain, and cognitive impairment.
That clicked for me. It wasn’t about treating a psychiatric condition. It was about addressing a neurological one.
The research backed this up. A retrospective study from Stanford’s 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/
So I went back on it. My specialist started me at 0.25 mg daily, which we later adjusted to 1.5 mg. I’m hopeful it will help reduce my PEM and improve my overall quality of life — and this time, I’m not letting stigma make that decision for me.
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.
Breaking down tasks and doing them supine helped me in ways that overlapped with other strategies in this post—conserving energy, reducing orthostatic stress, and supporting recovery. But what made this approach uniquely powerful was how it changed my relationship with daily life:
It made the impossible feel possible again. When I couldn’t brush my teeth, wash my face, and brush my hair in one go, breaking them into separate steps with rest in between meant I could still do all three—just not at once. That shift in thinking was everything.
It reduced cognitive overload. Focusing on one micro-step at a time instead of an entire task cut through the brain fog. I wasn’t trying to plan a sequence—I was just doing the next small thing.
It gave me back a sense of accomplishment. Completing even one step—brushing my teeth while lying in bed—was a small win. Those small wins accumulated into something that looked like a life, even at my most severe.
It was endlessly adaptable. On worse days, I broke tasks into even tinier steps or skipped some entirely. On slightly better days, I could combine two steps. The framework flexed with me instead of setting me up to fail.
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 long, how 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.
Symptom monitoring shared a foundation with every other strategy in this post—it helped me pace better and crash less. But what it added that nothing else could was pattern recognition:
I found my hidden triggers. Some were obvious (walking to the bathroom). Others surprised me—too much conversation, thinking too hard about a problem, even certain sounds. Without tracking, I never would have connected those dots.
I learned my body’s early warning language. A rising heart rate, a sore throat, that specific flu-like heaviness—these became signals I could act on before a full crash developed. Over time, I got faster at reading them.
I created a shared language with my care team. Logged patterns gave my doctors something concrete to work with. Instead of “I feel awful all the time,” I could say “cognitive activity over 15 minutes consistently triggers a crash 2–4 hours later.” That specificity changed how they treated me.
I learned the difference between “feeling okay” and “being okay.” Some of my worst crashes came after periods where I felt deceptively fine. Tracking showed me that feeling okay in the moment didn’t mean I had capacity to spare—it sometimes meant I was in the eye of the storm.
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.
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)
I need to be upfront about something: Aggressive Rest Therapy was the hardest thing I did in my entire recovery—harder than any medication adjustment, harder than setting boundaries with my family, harder than accepting a bedside commode. Not because it was physically demanding. Because it asked me to do nothing, completely and deliberately, for months. And for someone who spent her life fixing, managing, and pushing through, nothing was the most radical act imaginable.
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.
I want to paint an honest picture of what ART looked like in practice, because “strict horizontal rest in a dark, quiet room” can sound almost peaceful from the outside. It wasn’t. It was some of the hardest, most boring, most emotionally grueling work I’ve ever done. A typical day during my most aggressive ART phase looked something like this:
I’d wake up—or rather, I’d become aware that I was awake, because I kept the room dark enough that there was no real difference between night and morning. I wouldn’t reach for my phone. I wouldn’t sit up. I’d lie still and do a body scan, slowly checking in with each part of my body to see where I was that day.
After maybe 30 minutes of stillness, my partner would bring me water and my morning medications. I’d take them lying down. Then I’d begin my Yoga Nidra practice—about 90 minutes of guided meditation, eyes closed, completely still. This was my anchor. It gave the first hours of my day a structure that wasn’t about doing, but about being.
Meals were brought to me. I ate lying on my side or slightly propped. No conversation during eating—just fuel.
The afternoons were the hardest. Not because of pain, though there was plenty. The hardest part was the nothingness. No scrolling, no texting, no audiobooks on bad days. Just me, the dark, and my thoughts. I’d do another body scan. Sometimes I’d practice Metta meditation. Sometimes I just lay there and let time pass.
On a “good” ART day, I might send one or two short text messages, or my partner might read me a few lines from something. On a bad day, even that was too much.
Evening was medications, maybe a very gentle conversation with my partner—five minutes, no more—and then the long stretch toward sleep, which was its own battle with insomnia, adrenaline surges, and restless legs.
That was it. That was the whole day. And I did some version of that for months.
It sounds miserable, and some days it was. But here’s what I want you to understand: inside that stillness, something was happening. My nervous system was quieting. My crash cycles were lengthening. The floor beneath me was slowly, imperceptibly, becoming more solid. ART didn’t feel like healing while I was in it. It felt like survival. But looking back, it was the foundation everything else was built on.
ART shared core benefits with every other strategy I’ve described: it conserved energy, reduced crashes, and supported recovery. But ART did something the other strategies couldn’t do on their own—it created the conditions for everything else to work:
It broke the PEM cycle when nothing else could. At my most severe, I was crashing from crashing. Pacing adjustments, mobility aids, and delegation all helped—but I was still in rolling PEM until I committed to the radical stillness of ART. It was the circuit breaker.
It revealed my actual baseline. When I stripped away all nonessential activity, I could finally see how little capacity I truly had. That was painful to confront, but it was the truth I needed. Every other pacing decision I made afterward was built on that honest foundation.
It reframed rest as a skill, not a failure. This was the mindset shift that changed everything. I stopped viewing rest as what I did when I couldn’t do anything else, and started treating it as the most important thing I could do. ART taught me that rest isn’t passive—it’s a practice that requires discipline, intention, and self-respect.
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
There wasn’t a single dramatic moment when I realized I was no longer in rolling PEM. It wasn’t like waking up one morning and feeling better. It was more like realizing, sometime in the middle of an ordinary afternoon, that I couldn’t remember the last time I’d crashed for days straight. That the floor beneath me had stopped shifting. That I’d had three weeks — maybe four — of something I hadn’t felt in months: stability.
It crept in so gradually that I almost missed it. One week, I noticed I could brush my teeth two nights in a row without paying for it the next day. Another week, I managed a short conversation with my partner that didn’t leave me flattened. Small things. Ordinary things. The kind of things that used to be invisible because they cost me nothing — and had become extraordinary because they once cost me everything.
Getting here wasn’t about finding a miracle. It was about doing a dozen unglamorous things, consistently, for months. Committing to aggressive rest even when it felt like nothing was happening. Wearing the chest strap. Setting the boundary. Asking for the help. Tracking the symptom. Taking the medication. Lying in the dark when every part of me wanted to be somewhere else, doing something — anything — that felt like living.
None of it was easy. All of it mattered.
If you’re in the middle of a crash that feels like it will never end, I want you to hear this: you are not weak for needing rest. You are not lazy for needing help. You are not broken for needing a strategy just to brush your teeth. You are surviving something that most people will never understand — and the fact that you’re reading this, however slowly, however many breaks it took, means you haven’t given up.
Start where you are. Do one thing. Give yourself credit for still being here.
And when you’re ready, I’ll be in Part 3 — where I’ll share what happened next. How small pockets of stability turned into something that started to look like a life again. It’s not a story of total recovery. But it is a story of progress, perspective, and hard-won hope.
Q: How do you transport someone who is in rolling PEM? They need to get home but keep crashing.
This is such a hard situation, and I’m sorry if you’re dealing with it. If at all possible, medical transport is ideal because the person can be moved while lying completely flat with minimal stimulation. If that’s not an option, a car where the front passenger seat reclines fully is the next best thing—the goal is keeping them as horizontal as possible for the entire trip.
A transport chair can help get them from bed to car with as little physical exertion as possible. Once they’re in the vehicle, noise-canceling headphones and an eye mask can make a real difference in reducing the sensory overload that drives further crashes. Keep the environment quiet, dim, and steady throughout the ride.
The key principle is the same one behind everything in this post: minimize exertion, minimize stimulation, and protect every ounce of energy they have left.
Q: How do I help my partner or spouse understand why I’m so vigilant about heart rate monitoring?
This is one of the most common struggles I hear about, and it came up in the comments here too. Heart rate monitoring can look excessive or obsessive from the outside—especially to someone who’s never experienced PEM. It helps to frame it in terms they can relate to: this isn’t anxiety or hypochondria, it’s like a diabetic checking their blood sugar. Going above my anaerobic threshold doesn’t just make me tired—it can trigger a crash that lasts days or weeks and sets back months of progress.
What made the biggest difference for us was my partner actually helping me track symptoms and review my PEM Avoidance Toolkit data together. When he could see the patterns—that specific heart rate spikes consistently preceded multi-day crashes—it clicked. He went from tolerating the monitoring to actively supporting it.
Sharing this blog post (or Part 1, which covers what rolling PEM actually did to me) can also help bridge that gap. Sometimes a partner needs to see the “why” laid out in detail before the daily vigilance makes sense.
Q: What if I can’t afford a heart rate monitor or the apps you mentioned?
I completely understand—these tools aren’t cheap, and not everyone has access to them. If a chest strap and app setup isn’t in your budget right now, here are some alternatives that can still support pacing:
Manual pulse checks: You can learn to take your own pulse at your wrist or neck and time it for 15 seconds, then multiply by four. It’s not as precise, but it builds awareness of when your heart rate is climbing.
Symptom-based pacing: Before I had a monitor, I tracked how I felt during and after activities using a simple notebook. Noting things like “felt okay during but crashed two hours later” helped me start identifying my limits.
Free or low-cost apps: Some HRV apps have free tiers. Check ME/CFS community forums and support groups—people frequently share recommendations and sometimes even donate used devices.
The PEM Avoidance Toolkit: The Open Medicine Foundation’s toolkit is free and doesn’t require any devices. It’s a great foundation for pacing even without technology.
The heart rate monitor was helpful for me, but it’s one tool among many. Pacing is about awareness and consistency, and you can build both with or without expensive gadgets.
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/
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.
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.
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.
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 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!
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 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.
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.
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.
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:
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.
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
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
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.
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.
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.
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.
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.
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.
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