You've probably heard a lot about people with fibromyalgia and ME/CFS having problems when it comes to exercising. People with ME/CFS tend to suffer from something called postexertional malaise. Fibromites and people with ME/CFS suffer more pain after exercise and for a longer period of time than normal people. The pain can reach excruciating levels for even days after exercising, and after only exercising a little bit. We also have to work a lot harder to force our bodies to do the same exercises a person without fibromyalgia or ME/CFS has to do. This is especially true if you have dysautonomia, a condition commonly found along-side ME/CFS. Basically, even though exercise is good for us, it makes us feel really crappy.
What exactly is postexertional malaise? Postexertional malaise is a hallmark ME/CFS symptom characterized by intense exhaustion for a period longer than 24 hours. As you read all of this you are probably wondering why we are supposed to exercise when it is so hard on us. Besides the usual (and very valid) reasons of prevention and management of diabetes, high cholesterol, heart disease, and weight; over time exercise will help us achieve lower pain and fatigue levels. Weight loss can also decrease pain and fatigue levels. There are many reasons to exercise, you just have to find what is important to you.
Postexertional malaise in people with ME/CFS causes a detectable difference in your blood. Postexertional malaise in ME/CFS and the pain and fatigue, experienced by both fibro and ME/CFS sufferers, during and after exercising is not all in your head. They are real, and they are a big deterrent to many of us when it comes to exercising.
We still need to exercise, though. A good place to start is with a good physical therapist who understands fibro and ME/CFS. In reality, not everyone gets to see a physical therapist, though. Even if you do get to see one, he or she may not understand fibromyalgia and ME/CFS. So what do you do? My advice (remember it is only advice) is to start slowly, and be proud of what you can do. Maybe today you could do five minutes of a gentle yoga video. Awesome! Don't look at it as you only did five minutes, celebrate that you were able to. Sometimes a walk to the end of the block is a huge success. The idea is to get moving. It hurts to exercise and it seems counterproductive at first. I won't lie, a fibromite's body doesn't get "used to" exercising very quickly. Don't push yourself to do more than you can do. Celebrate what you can do. After exercising regularly for some time you will start to feel better during and after your work out.
What should you know if you haven't exercised in a long time? Keep it non-impact to not jar your joints, and don't exercise too strenuously, or to exhaustion. Yoga, ti-chi, pilates, swimming, and walking (that includes walking the dog) are all good ideas. If you lift weights keep the weights small, i.e. three pounds. You may not feel it while you are doing it, but you will later. Don't do the same exercises two days in a row. Let your muscles rest a day.
What do you do when you finish exercising? The most important thing you can do is to stretch and stay hydrated. Stretching your muscles will diffuse some of the pain that would be there the next day. Take a cool or warm (but not cold or steaming hot) shower. If you need to, rub in some Aspercreme or Biofreeze after you have cooled off. Do not put it on before your shower, not only will it get washed off, but Biofreeze can burn (as can some other topical pain OTC medicines) in hot water. Use a heating pad or ice pack, but do not use the heating pad where you used a topical pain OTC medicine i.e. Aspercreme, Biofreeze, Ben Gay, Icy Hot. Do not tightly bandage an area you used a topical pain OTC medicine on as well, or put under tight clothes.
When I was in physical therapy I worked my way up in 5 weeks from Level 1 for 2 minutes on the recumbent bike to Level 5 for 10 minutes. Three years ago I went jogging daily. I can't concentrate on that, instead I have to concentrate on celebrating my successes. My body isn't the same body it was three years ago. Three years ago I wasn't dislocating joints from my EDS, and I wasn't in near this much pain; but I was very unhappy and lonely. I'd rather be here in this point in my life than back when I wasn't so sick, but I was alone in the world. Okay, I'm starting to cry...time to change the subject!
I've gotten out of practice with my physical therapy. I've decided to start in doing it a little bit at a time. My goal is to do the first set of exercises my PT gave me three times this week. Next week I will add in the other set on alternate days. Eventually I'll be back on my stationary bike, which is jury-rigged into a recumbent bike.
So that is my goal of the week. I will start Monday with my exercises. Now, how do you or what will you do for exercise this week?
I want to point out that my advice is just that-advice. Please consult a doctor before exercising or changing your treatment routine. I am not a physician or physical therapist. I am a patient who hopes that by telling my story and educating the public on fibromyalgia and ME/CFS I can help someone.