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18 Years Without a Name: My ME/CFS Story

Reading Time: 19 minutes

This is my ME/CFS diagnosis story. It took 18 years, countless doctors, and a trail of misdiagnoses before my symptoms finally had a name.

Fall of 2007. I was back at Scripps College after a summer of pulling espresso shots just to survive — and drinking most of them myself. I’d transferred Starbucks stores so I could keep working while studying, and the free coffee was less a perk and more a lifeline. I can still smell the arabica beans, that warm roasted sweetness hanging in the air of every shift, clinging to my clothes when I got back to my dorm.

(more…) “18 Years Without a Name: My ME/CFS Story”

Lyme Disease Misdiagnosis: The Bullseye Rash My Doctor Called a Spider Bite

Reading Time: 6 minutes

May is Lyme Disease Awareness Month. This is the story I don’t usually tell in full.

“It’s a spider bite.”

That’s what my pediatrician said when my mom brought me in with a bullseye rash after one of my camping trips. I was in 8th grade. I remember looking at the ring on my skin and thinking it didn’t look like any spider bite I’d ever seen. But he was the doctor, and I was a kid, so we went home.

That rash was textbook Lyme disease. Nobody tested. Nobody even considered it. It was the start of a Lyme disease misdiagnosis that would take years to unravel.

(more…) “Lyme Disease Misdiagnosis: The Bullseye Rash My Doctor Called a Spider Bite”

Lying Down Shower Routine for Severe ME/CFS & HyperPOTS

Reading Time: 11 minutes

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.

(more…) “Lying Down Shower Routine for Severe ME/CFS & HyperPOTS”

The MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Syndrome With a Layered Treatment Approach

Reading Time: 22 minutes

If your body seems to overreact to everything—foods, stress, heat, even your own hormones—you might be dealing with mast cell activation syndrome (MCAS). It’s what happens when your mast cells dump histamine and other inflammatory chemicals at the wrong time, in the wrong amounts, for reasons nobody can fully explain. The symptoms can hit your skin, your gut, your brain, your heart—sometimes all at once, sometimes in rotation, sometimes for no clear reason at all.

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

MCAS kitchen sink protocol illustration showing medications, supplements, and treatments for mast cell activation syndrome
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.

(more…) “The MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Syndrome With a Layered Treatment Approach”

How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles

Reading Time: 12 minutes
Split-screen illustration showing a journey of recovery from rolling PEM. On the left, a woman lies in bed under the label “Rolling PEM,” representing illness and exhaustion. On the right, the same woman sits upright in a wheelchair, smiling, under the label “Life After,” symbolizing improved quality of life. Below, bold text reads: “How I Recovered from Rolling PEM – Life After Crash Cycles. Read the Blog Post.”
Visual representation of recovery from rolling PEM: from bedridden days to regaining stability and joy. Read Part 3 of the journey on the blog.

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

Life Beyond Rolling PEM: How Recovery Felt Day by Day

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

In Part 1, I shared how I spiraled into rolling PEM. In Part 2, I walked through the pacing, heart rate monitoring, and recovery tools that helped me crawl out. Now — Part 3 — the part I wish someone had written for me when I was at my worst: what life actually looks like on the other side. The healing. The unexpected joys. The fear of relapse. The hard-won stability that slowly (and I mean slowly) returned.

(more…) “How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles”

How I Got Out of Rolling PEM: Part 2

Reading Time: 34 minutes

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

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

🚨 If You’re in Rolling PEM Right Now

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:

  1. Practicing Aggressive Rest Therapy (ART) — The single most important thing I did. Stop everything nonessential and rest like it’s your job.
  2. Asking for Help and Delegating Tasks — You cannot pace your way out of rolling PEM alone. Let someone else carry what you can’t.
  3. Breaking Down Tasks and Doing Them Supine — When you do need to do something, this is how to do it without crashing harder.
  4. Pacing with a Heart Rate Monitor — Your body can’t tell you the truth right now. A monitor can.
  5. Monitoring Symptoms and Noting Signs of PEM — Learn to catch a crash before it catches you.

Bookmark this page and come back to the rest when you’re ready. It’ll be here. 💛

Have a caregiver or partner? Share this guide with them: [Caregiver Guide (PDF)].

(more…) “How I Got Out of Rolling PEM: Part 2”

How I Escaped the Horror of Rolling PEM: Part 1

Reading Time: 9 minutes

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

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

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

(more…) “How I Escaped the Horror of Rolling PEM: Part 1”

How I Escaped the Horror of Rolling PEM

Reading Time: 2 minutes

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

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

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

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

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

So, let’s get started!

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

References

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

Rolling PEM: What It Is & How to Avoid It | ME/CFS Guide

Reading Time: 8 minutes
Rolling PEM infographic showing a red wave pattern with overlapping cycles, illustrating how post-exertional malaise can be triggered frequently, causing new PEM cycles to begin before prior cycles have ended. By @TickedOffCodess.

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

If you developed PEM after COVID-19, rolling PEM can be especially tricky to recognize because you may still be learning what your new limits are. The declining baseline might be mistaken for “still recovering from COVID” rather than a pattern of cumulative overexertion.

What is Rolling PEM?

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

(more…) “Rolling PEM: What It Is & How to Avoid It | ME/CFS Guide”

References

References
↑1 Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023.
↑2 ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/ .
↑3 How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/19/2023.

Sensory Overload

Reading Time: 2 minutes
Carol laying on pillow and wearing dark sunglasses and noise canceling headphones.
I spent half of June and half of July living in sensory overload.

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

⚠️ ⚠️ This is sensory overload!!!!!

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

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

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

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

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

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

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

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

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

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