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Obstacles to Exercise With ME/CFS: Normal Rules Do Not Apply

By HERWriter
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Obstacles to Exercise: With ME/CFS Normal Rules Do Not Apply Kar Tr/Fotolia

Exercise is a good thing for people living with some chronic conditions but not for others. ME/CFS can respond very negatively to even mild exercise. Some sufferers can even run the risk of experiencing what is known as a crash — a relapse — which can cause the individual to lose considerable ground, sometimes permanently.

A relapse often occurs within the first 48 hours after the exertion due to ]]>post-exertional malaise]]>. This symptom is a hallmark of ME/CFS. ME is myalgic encephalomyelitis, and CFS is chronic fatigue syndrome.

While the illness has been poorly studied, and it's difficult to say just who has it, or just what symptoms are identified in every case, I would venture to say after two decades of having ME/CFS myself, that we've all got this one.

It's hard for me to walk the tightrope between enough exercise and too much. But for many with ME/CFS, this is one tightrope they never have to deal with though they might wish they did. They are much too ill to do more than lift their head off the pillow. Some can't do that, they need someone to lift their heads for them.

I have been living with ME/CFS for 24 years. And I have started over more times than I can count. I start so small it seems ridiculous.

I'll do perhaps two minutes — no more than that — of some gentle stretching. Then nothing for a couple of days afterward. If there are no ill effects, I will do two minutes again, and take a couple of days off again. By tiny increments, as if to fool my body into thinking nothing was happening to it, I gradually increase my activities.

At one time, I had no relapses for an entire summer and was eventually going for two half-hour walks and spending half an hour doing simple exercises — leg lifts, curls, some yoga — and 20 minutes of lifting 3-pound weights, in a day. I would take a day off in between activity days.

This is NOT the typical experience of someone with ME/CFS. I was very lucky that it was mine. It's only happened on this scale for me once, a decade ago. It was glorious. And then something happened.

I don't remember what it was that made everything come crashing down that time. Maybe a strained shoulder or a sore knee. A change of seasons from summer to autumn. I don't know. Some small thing that wouldn't even be noticeable for a "normal" person.

Pain and inflammation set in, my ability to think plummeted, my body felt like I was vibrating on a restless ocean. My personal type of hell moved in for months. All progress seemed to have been lost, and when it seemed the coast was clear once again, I would dust off my determination and my hope against hope, and get back on the bunny slope yet again.

I've gone through a similar routine, in terms of being physically derailed, three times in the last year. This is fairly standard since I got sick a quarter of a century ago. These days, the main offender for me is just pain and inflammation. Cognitively, things have stayed fairly steady and I am able to continue to think, to work, to live.

As I said, people like me are the lucky ones. We are able to stretch our muscles and expend the energy without being rendered helpless afterward.

There is a learning curve to handling this illness that is downright ludicrous. It takes time to come to terms with the inexorable link between so-called healthy exercise levels and our collapse.

While mainstream medicine believes that exercise programs are helpful to us, in my and many other's experience, that has not been the case. Talk to anyone who lives with this condition and you will hear the same thing over and over again — that exercise "programs" are doomed to failure for us. They are bad medicine.

Any activity, or the absence of it, must be determined by the person and nothing else. Being in effect forced to exercise is like being forced to drink the Kool-Aid. Nobody should be able to force someone else to do something that could cause long-term collapse.

As we protect our diminishing health and energy stores, we are often told that we are malingerers, and that if we'd just get up and get going we would feel much better.

But this is so far from the truth. If you have ME/CFS you will have discovered that whatever you used to think was a reasonable amount of activity is way too much for you now. You can lost your ability to stand, to walk, to sit ... to comprehend words spoken to you ...

Sometimes the healthiest activity level is as close to none as possible. Lay in that bed. Close those eyes to reduce sensory stimulation. Breathe.

Yep, that's it. Just breathe. For a day, for a week, a month ... until relief finally comes ... if it comes. You never know, each time, whether there will be relief on the other side, or whether this is the Big One which will keep you bedridden as a vegetable for the rest of your life.

If we are lucky, the balancing act continues. We try to add small extensions to our lives and hope for expansion — slow but hopefully steady — and try to avoid crashes and having to start from zero again.

We take it slow and small, so that we have a chance of being able to hang on to our tiny victories. Every increase, every reclaimed territory is a major victory. Nothing is too small to celebrate and protect with everything we've got — however little that might be.

Visit Jody's website at http://www.ncubator.ca

Post-Exertional Malaise: When The Other Shoe Drops. Phoenixrising.me. Retrieved June 28,2016.

Postexertional malaise in women with chronic fatigue syndrome. Ncbi.nlm.nih.gov. Retrieved June 28,2016.

Add a Comment4 Comments

EmpowHER Guest

One important point you raised is the reaction happens within 48 hours. This is very difficult in that over a period of 2 days we've done so many "little things" that may have caused the setback so it becomes impossible to pinpoint exactly what it was that caused the bad reaction.
You've described the disease pretty much like I would've and I'm a long time sufferer as well with 17 years now. Always looking for that small window of opportunity to do more though most of what I receive in return is more loss. Once you lose all that's been important to you it's difficult to move forward but we must or you'd just wither and die.

June 29, 2016 - 12:52pm
HERWriter (reply to Anonymous)

Hi Anonymous

Thanks for adding emphasis to the delayed reaction we all have, it's a very important symptom and little understood ... not to mention hard to work around for those of us who are mobile at all.

You are so right. It is very hard to keep on moving forward with such odds against us.

And so often movement forward has to be so tiny -- as if our body needs to be fooled, that we aren't really trying to do anything -- and over such a very long time period to make any kind of progress at all.

And then, it can all be swept away yet again with a crash. And so we start over one more time ...

We should all get medals. But the ceremony would need to be in most of our bedrooms ... or with us absent in a darkened, soundproof room.

Thank you for writing.:)


July 10, 2016 - 2:01pm
EmpowHER Guest

Thanks for this Jody. I really appreciate how you emphasize the level of disability many patients have, and that you are one of the more fortunate patients in how much you are able to function. Also, that even so, you have to start with about 2 minutes of gentle anaerobic twice a week. And that you can't reach "normal" functioning. ANd that relapses, reductions in functioning, happen easily and frequently.

One thing I would add is that not all mainstream thinks that exercise programs are good for PWME. The Institute of Medicine in reviewing the literature saw that the research indicates that exertion can cause great physical harm to most body systems. The work of Stevens/Snell, Keller, Newton and more. So much so that they proposed renaming the disease Systemic Exertion Intolerance Disease.


June 29, 2016 - 12:26pm
HERWriter (reply to Anonymous)

Hi leelaplay,

I'm glad to know you think the article was helpful. And thank you for mentioning those involved in research who are starting to see and document our reality, re: exercise and exertion. 

Thanks for writing.:)


July 10, 2016 - 1:56pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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