Exercise is a sore topic amongst many people with CFS - and understandably so, I'm sure that all of us have been told at least once that all we needed was to, "Get up out of bed and go for a good walk" and then we'd feel better! That exercise can be detrimental to people with CFS seems to be the hardest thing for others to understand. It's an understandable problem, after all exercise is generally helpful for people with other diseases with similar symptoms of fatigue, lethargy and muscle pain. There's a lot of long complicated chemical reasons why exercise is often bad for people with CFS, but even I don't understand it really. I just know that if I walked around the block today I'd be unable to stand up tomorrow.
Another common fault is for people advocating exercise to say that we just have to "start really slowly and then slowly increase the amount of exercise as we improve". Did you spot the logic fault in that sentence? Starting slow does not guarantee we'll improve and there are biochemical reasons for this. My physiotherapist doesn't understand this part at all, it's an article of faith for him that if I do a consistent small amount of exercise I'll improve. The fact that I'm not improving is something he constantly manages to forget, people are good at forgetting things that don't fit their world-view!
However, the fault is not all with the well people. People with CFS often react to this inappropriate prescription of exercise by rejecting the idea altogether and this is also a problem. The physiotherapists out there have a good point, exercise does have some positive effects, and us CFS'ers need all the positive we can get.
So what's the answer? I'd suggest finding something that you can do easily that's not aerobic and very low impact, work out how much of it you can regularly (4 to 7 times a week) do without causing yourself to crash, and without using up so much energy you don't have any left over for normal stuff. Suggested activities are:
- Swimming
- Yoga
- Gentle stretching
- Walking
A common problem is for people to over-estimate how much they can do, and then crash. My stretching routine is about five minutes a day and it's all done either sitting or lying down! Please please please don't aim too high, or you'll crash and give up on it. Much better to do less than you could, and then increase it later on.
Once you've figured out an activity, and how long you can do it for, make a habit of doing it every day. Do NOT aim to increase. If you happen to start getting better, then increase, but if you're getting worse (for whatever reason) then decrease what you're doing. It's the nature of CFS that you can NOT push through it ... if you push yourself to do more, you'll be in trouble. Much better to do less for a week or a month, then bring it back up later if you can.
What do I do? I'm close to bedridden at the moment, so I can't do much. I chose stretching for my exercise because I could figure out how much and what I wanted to do, and it was something I can do sitting and lying down - on the bad days I just do the lying down part of it, without even getting out of bed. On the good days I add 'walk to the letterbox' or one minute on the exercise bike. What do I get out of it? It helps with the stiffness that naturally comes from being forced to spend so much time lying in bed, and also helps relax the muscles in my shoulders and neck. Plus I get to feel like I'm Doing Something that'll make a difference, which I find important - I hate being helpless!
I also do hydrotherapy once a week - about 15 minutes of gentle movements floating in a specially warm pool. Personally, I don't think it has much effect but it gives me easy access to a physiotherapist (he helped me develop the stretching program) and it's a chance to get out of the house so I just treat it as a social occasion.
I recently found a book on amazon.com about yoga for people who had arthritis or other illnesses, and when I finally get hold of it, I'll probably add some of the yoga postures to my exercise list.
I'd put links to other articles about CFS and exercise here if I could find any! If you have any links that might fit on this page, please email me so I can add them. Thank you.
