Exercise isn't easy when you have fibromyalgia and chronic fatigue syndrome. Some of us find we can't do as much as we used to, and some can't do any without triggering severe symptoms.
For those who are able to tolerate exercise and would like to do more, I wanted to share the approach I've been trying for the past couple of months: treating it like rehabilitation.
The biggest problem many of us face is thinking of the standard healthy person's workout as something we should be doing. We have to put that out of our minds and take a simple, scaled-down approach. Even then, it's easy to over do it and cause a crash.
When I decided recently that it was time for me to get serious about exercise, I put a lot of thought into what my goals were and how I should approach the whole process. I decided the most important things for me, based on the stability of my symptoms and overall fitness level, was increasing muscle tone and improving stamina. I thought about how long it's been since I had decent stamina and realized that what I needed was a rehab-type approach.
What I mean by that is:
- Starting from ground zero,
- Being alert to worsening symptoms,
- And following my body's cues.
This wasn't new information for me, but I found that viewing it as rehab rather than as just a scaled-down version of what I used to do, it was easier for me to stick to the rules.
I found a quick routine consisting of 3 exercises that I was able to do and just pushed me a little bit. I started out doing one set a day. As it got easier I added a second set. My goal is to add a third before long.
I've been able to do this routine consistently without trigger a flare. (However, keep in mind that my symptoms are well controlled and very stable. You need to know your own fitness level and listen to your body every day to learn when you're able to exercise and when you aren't.) My stamina is increasing bit by bit, and my muscle tone has really improved.
- Learn more about Exercising With Fibromyalgia & Chronic Fatigue Syndrome
Have you found a good approach to exercise? Have you gotten the results you hoped for? Leave your comments below!
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So many people think that they are not being physically active unless they are doing structured exercise (eg.I must do 100 push-ups everyday). Our evolutionary history didn’t feature planned activity sessions. Regimented movement, like in formal exercise is unnatural. We were meant to have sufficient exercise by going about our daily activities/lives; looking after our families, jobs/careers, housework, yard work, play etc. I personally, no longer believe in structured, physical exercise; I get my exercise from going about the daily activities of living my life.
People with ME/CFS do not respond to exercise the way normal people do and exercise does not and never will Increase stamina in people with MECFS.
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“Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can’t do in a day – and then do less.”
“We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it.”
“Rest is the single most important factor in allowing chronic fatigue syndrome sufferers (CFSs) to get better. An invariable feature of the history is that exercise (mental, physical or emotional) makes the symptoms worse.” Dr. Sarah Myhill
Rest, Pacing and Stress: What Every ME/CFS Patient Should Know
http://www.mecfsassist.org/1/post/2011/5/rest-pacing-and-stress-what-every-mecfs-patient-should-know.html
I walk/hike with my dog 5 days a week for about 2 hours. Some days it is quite easy and then others its like I’ve never done it before and can barely make it! Those days really make me mad! I don’t have any balance and I’m supposed to work on that, not sure how to? Can’t afford to go to a gym or join a yoga class, any helpful suggestions would be appreciated!
Adrienne…what 3 exercises do you do?
Diane,
I do 20 jumping jacks, 20 lunges & 20 push-ups. I got the routine from one of the trainers on The Biggest Loser.
~Adrienne
Um, Pam, it almost sounds like you are bragging about your physical capacity to a bunch of very sick people. Two HOURS of exercise? And it makes you mad that it’s sometimes hard to do? I am trying to put a bit of structured exercise into my days, but I literally have to limit myself to two MINUTES at a time, in order to avoid a major setback. And I don’t think I’m that unusual, at least among people with ME/CFS. Perhaps you were a professional athlete before getting sick, so two hours of hiking is a comedown for you?
I disagree with Rachael, though, that it is necessarily impossible to build stamina, even with the defect of ATP production. It is extremely tricky, no doubt, but I have heard that Nancy Klimas is working on an approach that combines rest and very brief bits of exercise, which, if done under close monitoring, is allowing people with ME to slowly increase their stamina. Overall, of course, rest and pacing are the most essential things to prevent worsening and to allow improvement, but it might be possible to add planned exercise to that regimen–very very carefully and slowly, of course. I would love it to be true, anyway!
I have FMS and I walk every day to work, then do gentle yoga at night. I HIGHLY recommend a DVD by Claire Diab called “Yoga for everyone. Sun salutations.” It shows three people simultaneously doing the routine, each one at a different level. It also has very good breathing exercises. I thought I was too overweight (255 pounds) and too inflexible and too exhausted to do yoga. I was wrong. There are days when walking feels as if I am walking through quicksand and other days I can bop along just fine. Some days it hurts like the devil to do the yoga so I cut back. If you start with just one little thing you gain a lot, not the least is a sense of accomplishment that you can do that one thing. It took me several years to go from one sun salutation and one moon salutation to the five of each I do now. It doesn’t matter what you do as long as you do something. Yes, I know it is exhausting, I know it doesn’t build stamina but the more you try to do the better things are.
I recently found a Zumba class geared for folks in their 50′s, 60′s, and 70′s. It is taught by a 66 year old instructor. It is a toned down version of the fast paced dancng we see on TV. I find it enjoyable and quite tolerable for my fibro. It’s once a week for an hour, so that gives me time to recuperate, if needed. In between time I do yoga stretches at home on a daily basis. Movement is the secret to lessening my symptoms.
‘The biggest problem many of us face is thinking of the standard healthy person’s workout as something we should be doing’.
This really spoke volumes to me as I have been expecting too much of myself lately. I would like to try yoga, mummylady that DVD sounds good as i dont want to have to treck to a yoga class – will be knackered by the time i get there!
A friend at work and I have been trying to walk at our breaks–15 minutes in the morning and again in the afternoon. My fibro pain actually seems to have reduced since I started this, so I’m really trying to keep it up.
A friend at work and I have been trying to walk at our breaks–15 minutes in the morning and again in the afternoon. My fibro pain actually seems to have reduced since I started this, so I’m really trying to keep it up.
I started very slowly about two years ago. It has taken that long to finally get to the point were I can work out. I took it very slowly. Now I take my pain medication in the morning, do stretches and light weights. Then I walk for 45 minutes a day. I couldn’t do it without pain medication. I have both FMS and CFS. The interesting thing is is I have to do it every day. If I stop, I have to start all over again. It’s very important for me to keep it up. I never really thought I could build up my stamina but I have, very slowly.
I agree with Rachael that structured exercise is unnatural. I haven’t done structured exercise for more than 20 years (I’m 60) and don’t intend ever doing it again. It was that exercising (aerobics) that first tipped me over into continual pain and weakness. However, I am much stronger now thanks to hormones and a super nutritious diet and I have just come in from a half hour of hoeing weeds. It’s a matter of knowing your limitations and not exceeding them. Also avoiding repetitive exercise as much as possible, alternating different muscle groups.
I tried for many years to exercise away my chronic neck and shoulder pain, and found that the only significant improvement was when I had to stop exercising for a few months after surgery. Since then I listen to my body and choose forms of exercise that does not exacerbate my symptoms. I attend a weekly belly dancing class for mature-age women, and don’t do all the arm movements. It is no impact, rhythmic and lots of fun. I also walk (not during the hottest months) up to 45 minutes at a medium pace that is fast enough to raise my heart rate but not fast enough to make me hot and dizzy. I have a Thai Chi dvd, and found that the 25 minute warm-up routine suits me perfectly. The full exercise routines are too demanding on my shoulders.
I think the thing to remember is that all of us who suffer from FM and/or CF have to look at what WE OURSELVES are able to do. You cannot compare yourself to another person. I know from personal experience that fibro ebbs and flows; there are times I am able to do a lot and then I shift into a period of time that makes it hard to accomplish basic tasks. Let’s not criticize each other for what we can and cannot do. Let’s support and encourage each other to move toward healthier living and management of these conditions.
That being said, this article changed my thinking about exercise. It never occurred to me to think of it as rehab. Thank you for writing this article. I will certainly work to shift my focus.
And, Pam, you might want to look into getting a balance board.
Blessings for a less-pain-filled day,
Jeanette
I find I can exercise in stages. Back in February I was able to start my crunches, and worked my way from 30 a day to over 100– really strengthened my back. But near the end of May I had to stop all exercise and cancel my therapy.
Right now I am teetering on the edge of a crash and flare, and daren’t do any exercise. I am one of those CFS people who is wheelchair bound and I want to stay away from becoming bedbound again. So exercise isn’t part of my life. If I get stronger again (more rest) I will reinstate the crunches and try a few arm curls–such a big word, if.
Modified yoga positions, water aerobics, and walks are just a few ways I stay active.
I also like to do some light weights and pilates.
This is what works for me.
Great article Adrienne,
I recently discovered a page that talks about exercising within your energy envelope by monitoring your heart rate. This has been an eye opener for me – in some things I can do a LOT LESS than I thought I could without raising my heart rate too high, and in other things I can do MORE. Very surprising.
I’m wearing a heart rate monitor watch with an alarm that goes off when I go over the anaerobic threshold – its been an eye opener for my husband as well. I’ve managed to swim a little (yay for the soak in the spa afterwards!) and have started doing a small routine at the gym with the help of an understanding personal trainer. Here is the link to the article I found for anyone who is interested:
http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
As someone who developed ME/CFS while doing aerobic exercise, the apparent focus, by the medical establishment on structured exercise as a cure for ME/CFS mystifies me. When you are “running-on-empty” and have very little energy or stamina, why would they think the cure is to use up the small amount of energy you do have by doing structured exercise?
When you are having a good day wouldn’t it be a better idea instead of doing traditional exercise to be active by doing what you can’t normally do, perhaps a little gardening? Structured exercise seems like a waste of a very precious resource when one is usually unable to do the activities of daily living.
Like Tricia, I am much stronger now too, but it is because of the things that I take to restore my energy that has enabled me to be this way; I am certainly not going to try and purposely deplete my body ever again by using up valuable energy doing structured exercise.
Excuse me but someone who can walk 5 dogs for 2 hours 5 times a week does not have CFS! Are you kidding me? I walk for 10 minutes and I can barely get out of bed the next day. Even going about my daily activities,which I am only able to do once or twice a week, I suffer from
extreme leg muscle weakness and fatigue. I have never ever been able to do much of anything for over 20 yrs. I used to love running and aerobics. I yearn to be active, but with time I just get worse. i have tried every protocol
(natural) for the most part all to no avail. I have been taking multiple supplements under the care if a holistic doctor. There was alot of emphasis on upping my adrenals and detoxing. At first I was nearly manic with energy,then it all went south. Has anyone done parasite testing or any other type of testing done in an independent lab?
I have been back in PT for my shoulder since having shoulder surgery nine days ago. I had about 6 months of PT last year for the shoulder, and finally just pushed for an ortho referral this spring. The good and surprising news is that the shoulder impingement / AC joint arthrosis surgery has also (so far) eliminated my chronic neck pain, for which I have had numerous unsuccessful treatments: a year of PT, 2 steroid injections, routine massage and have also been told that many of the FMS tender points are in the neck and I should learn to live with it.. And yes – the shoulder stretching actually feels good. I only needed to take the narcotic pain killer for a couple of days after the surgery, but remain on both Lyrica and Savella.
I guess the moral of this lesson for me is about how important it is to take my other conditions seriously and not just attribute everything to the fibro. I was mad at my doctors for doing that, and I started to do it, too!
Now, other areas of pain are clamoring for attention, with the worst being the burning thigh pain of meralgia paresthetica. I now have that in both legs. It probably comes from the severe spinal degeneration in my low back. But maybe not. Maybe it’s my big belly. I know what the doctor thinks! What a crazy mix of symptoms and diagnoses we have all been subjected to.
I think your exercise strategy is smart, Adrienne, and I appreciate you sharing it with us. I know that we each come to this forum with a different variety and degree of medical issues, but you never know when someone’s suggestion or experience will make the pain / fatigue / whatever a little more bearable, so I thank the other contributors, as well, for sharing what has worked for them. Can we please remember to do so kindly?
Rachael,
My feelings exactly. I was walking 2 miles a day when diagnosed and it did nothing for my fibro and osteoarthritis, it just got worse.
When I was diagnosed, I had to stop playing all of my sports at school (Diagnosed at 16) and after being so active it was very hard to just sit back and say, “Well, its just too painful!” I tried and tested different exercises and those that didn’t work simply got tossed! I’ve recently found that, for me, resistance training is helping me so much! I only do half an hour a day, 5 days a week in fear of overdoing it, but that’s what I can handle – i know everyone is different. Even my physiotherapist is surprised at the difference in my muscles, and have even been able to start playing very light tennis again. I quite like the resistance training as it is non-impact and you can work through and build up at your own pace which I feel is key to fibro exercise! I hope someone else can benefit from this too! Here’s to all of us finding what works best for us and living a pain-reduced life! Cheers to you all!
Hi Everyone,
I have written before and we all are so different. exercise..little cardio and some resistance helps us stay strong and continue to fight this disease I have had since early 20′s. I am to be 50 in November. Just take it slow. It took one year under something for sleep to ride bike 5 min and lift 10 lb to do curls 8 reps without burning. I worked full time and would lay down at lunch. No pain pills worked.
Find a dr. that will listen to you! I have 3 kids at home and yes, I have to pace myself to this day! My house is a mess!
In long run, it helps with pain and mobility!Have a great one!:)
Autumn
I know it is important for me to add exercise to my life, whether it be housework, shopping, walking, playing, etc. The more I sit, the more muscle and stamina I lose. It has been hard gaining back stamina, and I know it won’t be the same as when I was well; however, it will be better than not being able to do the basic things in life.
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