ME/CFS or long COVID and managing PEM with cancer treatment

I have ME/CFS with Post Exertional Malaise, and I need to get radiation treatments every weekday for 7 weeks.

Does anyone here have experience with radiation treatment while having ME/CFS or Long COVID?

@dfspfs, I can imagine you are concerned about managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or long Covid while undergoing radiation treatment.

To help you connect with members who may have experience, I moved your question to the Cancer: Managing Symptoms Support Group https://connect.mayoclinic.org/group/cancer-managing-symptoms/ and the Post-COVID Recovery & COVID-19 support group https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/

Did you tell your radiation team that you have ME/CFS? When do you start radiation?

@colleenyoung Thanks.

My cancer team theoretically has known about my condition since my intake, but I don't think it really sank in until 5 months later during my surgery recovery last week.

I need to start in 2 weeks, but I'm not actually sure I can handle the exertion of daily trips out of the house

I went through this when I was 34. I was always so fatigued I realize now, it was like I was in an alternate universe trying to keep up in this world. The American Cancer Society had volunteers to drive me every day I needed to go. I had friends stay with me to help me out because I pretty much had my treatment and went to rest. I slept up until I had to go, and as I said, once I returned home.

The strangest thing happened though no doctors could believe it. Getting radiation, having my immune system suppressed seemed to bring me a little energy!? I am telling you this just to say, we never know how our bodies will react in situations like this.

Good wishes for your cancer treatment. Please don't worry about the near future. You can take care of yourself and hopefully find help to make it easier on yourself. Let us know how you are doing.

@jw9

Thanks for this reply. Did you have severe environmental sensitivities, and what was your PEM like?

Did you have any vestibular ocular motor dysfunction e.g. like extreme car sickness?

How is your ME CFS now?

I am debating if it is worth pursuing closer accommodations to the treatment center. There is a trade off; doing so will cost exertion and may crash me to the point where I cannot seek treatment.

@jw9

Did you have severe environmental sensitivities (noise, light, fragrance, flicker, motion, high contrast patterns, pollution, foods, inactive ingredients in meds, etc)?

@dfspfs
I don't know what the acronym PEM stands for.
No car sickness. I was dizzy often but always attributed it to low blood pressure or ever-present fatigue.
I had several years in my early 50's when I didn't feel fatigue. I was in yoga classes 3-4 times a week. I thought maybe chronic illness was behind me. Then I was diagnosed with RA and the fatigue reset, but not as severe.
For me it seems that there's a combination of Sjogrens Disease and RA, Hashimoto's and hematology issues that cause my fatigue. I wonder if I ever had ME CFS or if it morphed into all of these chronic autoimmune illnesses.
I am alright not-knowing now. I feel like I'm doing the best I can living with all of it. In my 60's I definitely feel more at peace with being ill. Priorities change in our lives.

@dfspfs
I have had and continue to have extreme sensitivities to noise, light, flickering screens, flashing.
Perfumes/fragrances always have caused headaches, and illness.
Everything was too much.
I tried no sugar for 3 years, no gluten for 10 years. Only to find that giving my system a break made it stronger.
Currently no food allergies.
I was fortunate to live on the Monterey Bay and air quality was excellent. It didn't cure me! but it didn't hurt my health either.
I have another strange radiation story:
We lived in a low rent duplex because I was out of work. I was going through radiation treatments when we discovered black mold in our bedroom closet. It didn't stop me from healing from radiation. We left that week. But I will say I survived radiation treatments with black mold in my bedroom and there were no ill effects.
The survival stories and difficulties of my chronic illness are a mystery. I couldn't put it all together and make clear sense . The most important thing is how rich my inner life has grown, my own version of faith.

@jw9 Thanks for this information. PEM is short for Post Exertional Malaise. It's a delayed onset of symptoms across different systems of the body. It makes it hard to detect more mild or moderate cases of ME CFS because people may be able to appear normal in public, and then crash and remain bedbound for a few hours or a day later on. More severe cases of ME CFS usually mean that crashes can last for days to weeks even after minor exertion, like sitting up in bed.

In my case, there was a period of time where I was crashing from stuff like going to the bathroom, started reacting to previously safe foods, and I stopped being able to digest solid food for a few months. That was kind of scary. I still have trouble with solid food.

It's good to learn there are new ways of measuring fatigue and crashing. Before there was PEM I basically crashed for all of my 30's. I would agree with you when you say crashing from going to the bathroom. Because I did not have the energy to leave home most of that decade. There was no "exertion" happening/just fatigue.

I hope things generally look up for you, and as I said, it might be years. Since I was young and isolated (no computers, nothing like now) I guess I just held out hope. I didn't give up psychologically. The worst of it became a memory. However what developed was a diagnosis of bipolar disorder, Sjogrens Disease, Hashimoto's Thyroiditis, RA, Sleep Apnea and finding out as an adult that I had Ehlers Danlos Hypermobile Syndrome.

Before I had ME CFS I had a serious illness of Epstein Barr virus. This was 10 years before the disabling life-changing fatigue. I have my suspicions that EBV and poor genetics led me down the road to disability.

The onset of ME CFS came 1 month after I was inside my home that was destroyed in an earthquake. I had a Near Death Experience and physically injured. Within a month I was too fatigued to work.