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Adrienne Dellwo

Re-Thinking "Exercise" for Fibromyalgia & Chronic Fatigue Syndrome

By November 18, 2008

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Do you get sick of your doctor and well-meaning people telling you that you'd feel better if you got more exercise?

For those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), exercise is a big problem. Not only are we hurting and/or fatigued when we start out, it can make our symptoms a whole lot worse for several days afterward. Studies show exercise can alleviate our symptoms, but anyone with FMS or ME/CFS who's ever over done it (most of us) knows how debilitating that post-exercise crash can be. So doctors and healthy people tell us, "Exercise more!" and we respond, "I can't!"

I think part of the problem here is in how we define "exercise." That word generally conjures up images of aerobics classes, doing a weight circuit at the gym, or spending half the day on a treadmill or exercise bike. I can't handle that kind of exertion - can you? I'm giving 3-1 odds that you said, "No way!"

What we need is a new definition of exercise. I believe, for us, it should be:

Intentional movement designed to have a specific effect on the body.

No special shoes, no equipment, just intentional movement. For example, if I've done a few simple yoga stretches and a couple of core-strengthening exercises, I consider it exercising. I have to do those things regularly to keep my back functional, because of a joint problem, and when I slack off, my FMS symptoms actually get worse before my back does. The entire routine (if it can even be called that) takes about 3-4 minutes.

We all have vastly different ability levels, so you're the only one who can determine how much exercise you can handle, and what form of exercise is best for you. Especially if you have ME/CFS, you have to be extremely careful and take it slowly. Here's more on how to get started the right way:

What kind of exercise do you do? What bad experiences have you had, and what have you learned from them? Let's all learn from each other - share your stories here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum.

Suggested Reading:

Photo © Reggie Casagrande/Getty Images

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Comments
November 18, 2008 at 3:11 am
(1) Babs says:

My favorite and soothing exercise is rocking in a rocking chair. Yes, it’s exercise by the above definition. For upper-body I do light weight training.

November 18, 2008 at 4:08 am
(2) Adrienne - Your Guide to FMS/CFS says:

You’re absolutely right – in fact, I’ve read that JFK actually used a rocking chair to ease his chronic back pain. Thanks for bringing this up!

November 18, 2008 at 8:33 am
(3) john says:

Again, I think it’s important to note that ME/CFS and Fibromyalgia are NOT the same.

Saying that ‘studies’ show that exercise can alleviate ‘our’ symptoms is a complete non-starter for several reasons.

1. Any studies that have been done that show exercise helps with CFS symptoms are generally not accepted by the majority of CFS patients, researchers, and patient advocates for the simple yet profoundly important reason- They all use the ‘Oxford’ criteria for CFS, which are only used by a relatively small group of psychiatrist researchers in the UK and the Netherlands, and are not used by ANY biomedical research groups anywhere else in the world.

The Oxford criteria and researchers who use them are not taken seriously by the greater CFS world because of the numerous major methodolical flaws associated with them, including allowing patients with primary psychological illness into the patient group, not counting patients made worse by ‘treatment’ in the final conclusions of their studies, instead casually referring to ‘high drop out rates’, among numerous others.

2. Again, ME/CFS and Fibro are not the same. Some would argue that they’re really not even very similar, seeing as how one is a widespread pain condition, and the other is a multi-system illness characterized by, among other things, increased lactate levels in the muscle of CFS patients, decreased blood flow to the brain and increased immunological disturbances, etc. following exercise. So no matter how you slice it ‘exercise’ is not good for ME/CFS patients.

If you want to write articles about the need to stretch occasionaly, that’s fine. But trying to justify and/or rearrange the commonly held meanings/definitions of the words you use in order to come up with a catchy title to your articles is not acceptable.

Another way to do it would be to tell your doctor and others to stick it up their nose when they tell you to exercise, not to use incorrect terminology simply because it makes things easier, because if everyone has their own definitions, how can good communication happen? We’ve all seen the destructive influence of those same ‘Oxford’ criteria researchers saying in public that they believe CFS and/or Fibro to be ‘real’ when what they actually mean is that they believe it to be a ‘real’ mental illness!

Say what you mean, and mean what you say!

November 18, 2008 at 1:14 pm
(4) VaBreeze says:

Fibro. isn’t just all about wide-spread body pain. Many of the symptoms (FMS and CFS/ME) are the same and there are some who are dx’d with both illnesses. FMS has also shown a possible decrease of oxygen to the brain. Low impact exercise is good for both condidions. Just because one has CFS/ME it doesn’t mean one has to sit like a veggie. An individual who is as active as their physical conditions will allow, is going to be a happier person (both with their life and themselves).

I don’t believe that being angry at the world and those who are trying to assist others is going to achieve anything. What may work for some might not work for others.

It’s wonderful to have a place to come and ‘let off some steam’ isn’t it? I’ll be back later…time for my exercises!!!

November 18, 2008 at 3:12 pm
(5) fibrohaven says:

I just recently wrote a post on practicing Qigong to help alleviate FM pain. Here is the link: http://fibrohaven.wordpress.com/2008/11/10/fibromyalgia-pain-breakthrough-qigong/

Qigong is an ancient Chinese art combining yoga and meditation. There have been studies which claim Qigong improved Fibromyalgia pain and symptoms.

November 19, 2008 at 4:48 am
(6) chronicfatigue says:

John,

If you actually read the full article on exercise, you’ll see that what I describe there is the extremely gentle exercise that I wrote about in this blog post. In a case where the entire world – including studies, and not just those based on Oxford criteria – is saying, “You need to exercise,” I simply pointed out that not all exercise involves the intense kind of work that initially comes to mind. When we talk about exercise among ourselves, we need to keep in mind that we’re not talking about running marathons, we’re talking about a simple stretching routine, or a walk around the block. That IS exercise – it’s just not how everyone PERCEIVES exercise.

And I have to say, once again, that the symptoms and many of the mechanisms believed to be behind fibromyalgia and ME/CFS are quite similar. Not the same, certainly, but similar. They both have abnormal oxygen and blood flow to the brain; they both have dysregulation of serotonin, norepinephrine and dopamine; they both have dysfunction in the HPA axis (although primarily in different areas of it); and they both involve pain (to different degrees), fatigue (to different degrees) and cognitive dysfunction. Subsets of each may be caused by viruses, while other subsets of each may be caused by environmental chemicals or toxins. The conditions share many overlapping conditions and have an extremely high rate of comorbidity with each other.

I talk to people with both FMS and ME/CFS every day who feel better when they’re physically active within their limits. When they have a drop in activity, their symptoms are worse.

November 20, 2008 at 10:59 am
(7) Mimi-Ann says:

I live on a farm, raise Texas Longhorns, and my exercise program consists of keeping fences mended, feeding and caring for cows and calves (this breed requires the minimum), and clearing brush and deadwood. All of this is something I totally ENJOY, which has to be the main ingredient of exercise for one with Fibromyalgia, Chronic Fatigue, and worn out hip/knee joints. Being outside in nice weather, and sometimes in not-so-nice, are the drawing cards for me. After a hard half-day outside, I have to rest (lay down because sitting hurts hip joints). On days I can’t work outside, inside exercise consists of walking barefoot up and down a very long tiled hallway – I just recently learned that walking barefoot on safe, inside surfaces is better for hip joints. Also have a Gazelle I can get on during TV news programs, etc. I learned the hard way 20 years ago at the onset NOT to just lay down and quit. It took 3 mos. of PT get to where I could even pull the sheet up on me at night. I’m not embarrassed anymore to take a whole day off and read or sew, but when you have cows or other outside animals it is mandatory that some effort be put into them which moves me to stay involved in the countryside which I love. I also do the rocking chair/outside swing leg exercises which strengthens those muscles. The point is, do what you love. It is never easy but it is necessary.

November 21, 2008 at 6:41 pm
(8) UPSman says:

It would be nice to “exercise” by feeding the cows – but would insurance company’s think you’re disabled and send you a check? The point I’m making is that it takes money to live and with a very active CFS disease for 5 years just the stress in paperwork and all is all consuming.

Whenever I do yardwork I simply love it – being outdoors and pulling weeds and planting flowers and such can’t be beat. However, I can’t do so in direct sunlight and if I come indoors and I noticed I “worked” enough to create a sweat – there’s a 99% chance trouble with the disease will follow. It’s like waking a sleeping giant!

The same for me is try if I try to “teach” myself new skills like in tutorials on DVD’s or the internet. I do them in my attempts to compliment my passion in photography with Photoshop if I do so for just a couple of hours say 2 days in a row – my body is physically beat up as if I ran a marathon. On top of that everything I learned – and oh did I love learning and what I created – I forgot everything! I have many photo creations I’ve made over the many years I’ve had the disease and not one of them could I go back and duplicate from memory. I look at them as I have them on my screen saver going by and I’m amazed at some of the things I’ve done but couldn’t tell anyone how I did it. It’s like it wasn’t even me. And after these attempts to “learn” I’d typically have to go through weeks where I couldn’t even get near my computer! It’s an amazing disease which I wouldn’t believe if I didn’t have it! I look relatively healthy but I simply don’t wonder out on bad days and I’ve never had 2 good days in a row and it’s going on a decade now! As you can see I gave up trying to put this in paragraph form and just began writing – I hope it makes sense.

Graded exercise therapy is something I was forced into as I had major surgery on my shoulder. However the therepy was halted when I had to sit down and rest after I did a few curls with “rubberbands”. Those that say to exercise are out of their minds – simple stretching is about all I’m able. I also agree with someone above about the dropouts from the exercise program aren’t counted – I would have been one of those and I was in need of getting some range of motion in my shoulder! Well enough rambling!

November 22, 2008 at 4:08 pm
(9) Satria says:

It is happy to see your posting. Yes really informative article. I will tell this information again to my friend, oh yes I suggest you to check my blog on http://www.101exercisebike.blogspot.com , I hope the article on my blog will be usefull for you… and we can share each other. thank you… ;-)

November 22, 2008 at 6:40 pm
(10) VaBreeze says:

chronicfatigue – Thank you for your comments. You expressed exactly what I was feeling at the time regarding fibro vs. cfs. While they may not be the exact same thing, no one knows what causes either one. When flaring…one person hurts no less than another. Both can be disabling.

November 23, 2008 at 11:57 pm
(11) Dena says:

I agree with the article. You have to do what is best for yourself. Everyone is different. I go easy on myself, I get out the Tai Chi tape & if I only get half way thru the warm up, then so be it! At least I tried. I figure if I at least try when I am able, I am doing what I can. Sometimes, I only get thru the warm up. If I’m lucky, I get started on the actual program. If I push too hard, I regret it & make things worse.

I’ve always wanted to try Qigong because it sounds theraputic as well. Perhaps I’ll pick up a DVD on it.

I’ve also tried some T-Tapp. I can sometimes make it thru the whole 15 min workout. Has anyone else tried it & had success?

November 24, 2008 at 8:03 pm
(12) Karen Twardowski says:

I have found aerobic breathing exercises in several names like lifelift, bodyflex, and oxycise. They are deep breathing and stretches. You can even do some of these while sitting down. They make me feel better and don’t stress out my muscles out. The workouts only take 15 to 20 minutes. By the time I get to the point of is this almost over, it usually is. I love them.

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May 2, 2013 at 7:57 pm
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