The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 02 December 2015 02 December 2015
by Diane Gallagher, Certified Fitness Instructor
Any doctor who's expert in the Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis (CFS/CFIDS/ME) will confirm what you already know: if you exercise one day, you're likely to feel sicker than usual the next day.
But then the doctor may well go on to tell you that inactivity—lack of exercise—can lead to cardiovascular disease, brittle bones, increased susceptibility to injury, and increased fatigue, weakness, stiffness, aches, and pains. It's quite a conflicting message. As both a person with CFIDS and a fitness instructor—which sounds like an oxymoron, I know—I hope I can shed some light on the issue of sensible, graduated exercise for patients.
About six years ago I was, among other things, teaching 12 aerobics classes as well as taking 2-3 dance classes each week. Then, one day, I was suddenly knocked off my formerly active feet by CFIDS/ME. After coming through the initial devastation of the illness (a process that took about two years of mourning my old life and the future I thought I'd have), I gradually improved to the point where I could do a bit more than shuttle back and forth between the bed and the couch.
I therefore decided to devise some kind of exercise program for myself. I was well aware of the dangers inherent in physical inertia, and I thought that someday I might recover from CFIDS/ME, only to be inflicted with other health problems resulting from my inactivity. I know it's hard to think ahead when the present is so dire, but hoping for a healthier future is what keeps most of us going, after all.
I quickly learned that many of the principles of exercise physiology no longer applied to my body. I had to approach things in a painstakingly and slow and cautious way. Eventually, it paid off; I actually began to feel the benefits of exercising.
I still have CFIDS/ME, which for me means being able to function (at times sluggishly) for a maximum of six hours each day at this point. (The remaining hours are spent on the old bed-couch shuttle.)
But I have more energy during those functional hours than I would if I didn't exercise. I'm strong and limber; my back and neck hurt less; I'm staving off osteoporosis, injuries, high cholesterol, and high blood pressure; and I don't feel like a worthless lump (not completely, anyway!)
Ultimately, I decided to take up teaching again, but this time, due to my limitations, I offered a therapeutic program geared to people with chronic illnesses. About half of my clients have CFIDS/ME, Fibromyalgia (FM), or other illnesses; the other half are healthy and, for various reasons, want or need a gentle exercise program. It's a good mix. We "walking wounded" have been able to educate our healthier classmates about chronic illness, and the presence of healthy types keeps the classes from degenerating into "poor-me" sessions.
Through my teaching I've learned that there are as many varieties of CFIDS/ME as there are people who suffer from it. There are times in class when everyone is doing a different variation of an exercise—or simply opting to rest—to accommodate their own specific limitations.
I've also noticed an interesting difference in those with FM and CFIDS/ME. Because of their stiffness and joint pain, those with FM move slowly and painfully from one position to another. Those with CFIDS/ME generally move more fluidly, but due to their brain fog, have difficulty following directions.
So if a class that's sitting is asked to stand up, there's a clear demarcation between the two groups. The patients with Fibromyalgia grunt and struggle slowly to their feet; the patients with CFIDS/ME, with relative ease of movement, lie down!
If you decide to try exercising, it's essential to remember that your response will be much slower than in a healthy person. You'll probably feel worse for the first couple of weeks, so give it a month's try. In a couple of months you will probably notice that you're not as stiff or achy, and that you have more energy. In fact, I have one FM client who even says she has a spring in her step after class. Of course, it took many months for her to arrive at that point, and not everyone responds so markedly, but many do.
Here are some other tips for exercising with CFIDS/ME:
Do things correctly. If you don't know how to move your muscles properly, maintain the correct posture, etc.—and most people don't—find a professional to help, or you may worsen your plight.
Start off VERY slowly. I've talked to many people who say they walked for ten minutes one day and felt okay, so they walked for 30 minutes the next day, and felt like they'd die the following day. No wonder. Try exercising slowly and gently for five minutes every other day for a month, even if it feels too easy. Then you can increase it to 10 minutes and pick up the intensity a bit. You can continue to increase the intensity and duration, but only infrequently and in small increments. You have to give your body a very long time to get used to each small increase in activity. You do reap benefits from even a small amount of exercise.
Once you have established a regular workout program, try to be consistent. There will be days when you re too sick to stand up, but don't let anything other than your illness derail your exercise routine. If you miss more than a couple of weeks, go back to your starting point, and don't increase the intensity or duration until you feel very comfortable with it.
Following these guidelines can help you maintain optimum functioning (and future health) without exacerbating your CFIDS/ME symptoms. Forget about no pain, no gain and go for the burn—go for the return of greater suppleness and strength.
Diane Gallagher can be reached at Artisan Exercise in Wayland, Mass. 01778.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.