How to Exercise With Fibromyalgia or Chronic Fatigue Syndrome

Most of us with FMS and/or ME/CFS have been unable to maintain a regular exercise program. The problem is that with Fibromyalgia, lack of exercise can increase our pain levels while too much exercise or exercise done incorrectly can also increase our pain and fatigue.

In the case of Chronic Fatigue Syndrome or ME, as the body becomes deconditioned, the CFS worsens and as the CFS gets worse, it becomes more difficult to exercise leading to further deconditioning. The autonomic nervous system that is already not functioning well in ME/CFS becomes even more problematic with lack of tone in the legs and lower body. This lack of tone allows blood to pool and upon standing the blood does not get pumped back up to the brain efficiently. This can cause dizziness and faintness immediately upon standing, but can also cause problems as long as 15-20 minutes later. Exercise strengthens the lower legs and abdomen and doesn’t allow as much “space” for blood to pool and therefore prevents some of the dizziness and weakness that we may experience.

For an exercise plan to work, it must be approached gently, slowly and with planning to ensure that you do not overdo. “Pushing through the pain” is a totally bad idea. This is a time that you want to treat your body with a great deal of care and respect.

Exercise labs have sophisticated ways of calculating just how much exercise you can tolerate. However, most of us don’t have access to these labs, so we have to begin with a bit of experimentation and a lot of caution.

Choose the aerobic activity that you wish to use for your exercise. If you choose an activity that doesn’t require too much planning, equipment or special dressing, you might be more likely to exercise consistently. It can be frustrating to have to get dressed, hire a sitter, drive to the gym, do five minutes of exercise and then turn around and go home. In the beginning you are most likely not going to be doing more than a few minutes of exercise at time.

For myself, I chose jogging in place. This required no special dressing, it doesn’t matter what the weather is outside and I can fit it into my day whenever it is most convenient. You could also march in place if your joints don’t allow for jogging. Or maybe you have an exercise bike you wish to ride or an elliptical machine.

The first thing you will want to do is to warm up. One of the best warm ups is in Chapter Nine of Dr. Ginevra Liptan’s book, “Figuring Out Fibromyalgia.” It involves some gentle range of motion and stretching exercises.

Once warmed up, I began my first “jog” with a stopwatch and I jogged in place until I really felt like I should stop. I was a bit winded, a little dizzy and had pushed myself a little too far. For the first “jog,” that was my intent. This first exercise round was 3 minutes and 300 steps. (I counted my steps because I didn’t want to be dependent on using a stopwatch each time I exercised). That was Step One. I should note that I have Fibromyalgia and Chronic Fatigue Syndrome and can tolerate very little exercise.

Step Two was to back off of that amount of exercise to a more tolerable amount. I chose to go down to 200 steps (which is about 1 1/2 minutes).

Step Three is to go flat. This means to lay down and do nothing or (only if you are able) do very gentle floor exercises such as leg lifts for a period of at least five minutes. In this time the autonomic nervous system resets itself and the body recovers from the exercise.

Step Four is to do another exercise round. This subsequent exercise round can be done immediately after your five minute rest or later in the day. It doesn’t matter how long you rest as long as it is at least five minutes.

Now, you need a way to make sure that you are not doing too much exercise. For this, you will be checking your morning resting heart rate (RHR). This is a trick I remember from my pre-illness days as a way to make sure I was not overtraining when I was running 10Ks. Each morning before you get out of bed, check your pulse for 60 seconds. Record this number. You will want to get a baseline by checking your pulse for a few mornings before you begin exercising. Then, once you are exercising, on any morning that your pulse is more than a few beats, say 5%, more than normal, you need to take a day or two of rest. This can also alert you to the fact that you are overdoing in general with your daily activities and maybe need to slow down a bit.

Begin your exercise program with two to three rounds of exercise a day, spacing your exercise days about three days apart. Stay at this level for 6-12 weeks before you increase. After this, you can increase to exercising more rounds a day and maybe increase the amount of time you exercise each round by a small amount. According to Dr. Liptan, it works best with Fibromyalgia to exercise every three days. I think this might be a good rule for ME/CFS also. Always stay at the new level for 6-12 weeks before increasing again.

In addition to aerobic exercise, it is important to keep core (abdominal) muscles toned and this can be done with yoga or pilates. You want to keep the same exercise philosophy of doing a small amount of exercise, maybe one or two poses, and then resting. A good way to do this is to get a gentle yoga or pilates exercise video (for mat) and take all day to complete the exercise session on the video by doing a bit resting and then doing a bit more.

On a separate day, you can work on strength building using light weight such as 1-pound dumbbells, tomato cans or resistance bands to do various arm exercises. The same can be done for your legs using light ankle weights to do leg lifts.  For both your arms and legs, do a few repetitions until you begin to feel your muscle burn and then rest for a few minutes. Then do another set.  Don’t do weight exercises any more often than every other day because your muscles need time to heal and repair in between.

According to Dr. Nancy Klimas, an expert in treating ME/CFS, you want to be eating at least 60 grams of protein a day.  The immune systems of chronic fatigue syndrome patients are requiring a great deal of protein. Fibromyalgia patients also do best on a higher protein diet.

If you have a relapse in your illness, do things that you can do from bed to stay flexible and come back to your exercise program when you are back on your feet. Dr. Klimas says that exercise is tremendously immune modifying and that you can get twenty percent of your immune function back from exercising. It also buffers you against stressful times.

So, to recap:

• Begin by checking your morning resting heart rate (RHR) for a few days to get a baseline.
• Step One – Exercise to your limit the first time.
• Step Two – Back off the amount of exercise you do in Step One to a tolerable amount.
• Step Three – Go flat for at least five minutes to recover from exercising.
• Step Four – Do another round of exercise when you are ready.
• Keep checking your morning RHR and if it increases more than about 5% then you are doing too much and need to take a day or two of rest.

Related videos by Dr. Nancy Klimas:

Part 1 - http://vimeo.com/26783830
Part 2 – http://vimeo.com/27073084
Part 3 – http://vimeo.com/27191660

http://www.cfsknowledgecenter.com/ea6.php

Update: Since I wrote this post I purchased a heart rate monitor.  Just a simple watch (no need for a chest strap) and realized that the jogging in place I was doing was exceeding the heart rate limit that Dr. Nancy Klimas believes ME/CFS patients need to stay below.

It is calculated like this:

220 – (your age) x 65% = maximum heart rate during exercise

For me this calculates to 111 beats per minute.  Since I was exceeding this by quite a bit with my “jogs,” I have changed to now marching in place for my exercise.  I swing my arms and raise my knees fairly high.  I am coming in right at the correct maximum heart rate for me.

This is the monitor that I purchased, but do your homework.  I am not saying it is the best one for you.  It does have the added benefit of having a pedometer also.