How I Escaped the Horror of Rolling PEM: Part 1

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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
• Part 2: How I got out of rolling PEM?
• Part 3: How did my quality of life improve?

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

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

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

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

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

It was a nightmare that I never wanted to repeat.  

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

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

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

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

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

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

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

Non-Stop Symptoms

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

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

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

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

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

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

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

I was so debilitated.

There was no relief of symptoms.  

Desperate for Help

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

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

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

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

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

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

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

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

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

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

 

Vicious PEM Cycle

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

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

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

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

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

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

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

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

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

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