The Vicious Cycle of Exercise with ME/CFS & Fibromyalgia

I joined a local gym back in December because I felt that maybe, just maybe, THIS time I could figure out how to exercise properly without it causing a CFS flare.  All we ever hear is that CFS and Fibromyalgia patients need exercise in order to keep from deconditioning but I find that no matter what I do, I always end up having many mini-flares with it.  I have noticed some improvements, however, but not enough to justify all of the flares I’ve had since I started working out again.  I do notice that my body does not get as stiff, my back and neck hurt less, and I am toning up areas that have been in desperate need of toning. 

I find that exercise with CFS and FM is a vicious cycle.  I have tried to do everything right.  I started out slow, and have slowly increased my minutes and weights on the machines.  Then when I am getting to where I feel like I can actually burn off enough calories to do some good, I have a flare and I have to start all over again.  It is very frustrating and I can understand why many CFS and FM patients don’t stick with exercise programs.  I know there are many patients who can’t exercise at all, and I think the rest just give up because we can never get anywhere with it.  For those CFS patients who are completely bedridden, exercise definitely is not an option. 

I haven’t given up, however, and I am determined to find a way to incorporate some form of exercise into a CFS life – somehow, someway.    Even if that means only being able to walk a few minutes or do some light stretching.  Exercise does have a lot of benefits and I am a full believer in it – if you are physically able to do it without the major consequences us CFS patients face.  It’s just super hard with an illness that has post-exertional malaise as a major cause of CFSer’s being down after exercise.  It’s    A lot of CFS and FM patients do find that some light walking is something they can participate in without causing flares. 

Karen Lee Richards of Health Central talks about exercising with CFS on her blog and the effects it can have: 

Although aerobic exercise is not recommended, neither is strict bed rest and a complete avoidance of any kind of activity. Dr. Charles Lapp, well-known ME/CFS researcher and clinician, recommends a balance of light activity with frequent bed rest breaks. He suggests that ME/CFS patients think of exercise as movement. It’s important to move as much as you’re able to avoid deconditioning. If you can’t get out of bed most of the time, gentle stretches or walking to the kitchen for a glass of water may be all you can handle.

Unfortunately, many people including many doctors don’t really understand the enormous negative  impact too much exertion can have on someone with ME/CFS so they continue to encourage them to exercise without giving them appropriate guidelines.  This tends to lead to a “push-crash” cycle.  Patients do too much then crash.  After resting for several days/weeks, they begin to feel a little better, do too much then crash again, and so on.  It’s a vicious, never-ending cycle.  If you find yourself caught up in the push-crash cycle, it’s best to limit yourself to doing only what is absolutely necessary.

If you are able to exercise, what can you do?  Please leave a note in the comments detailing what type of exercise you participate in and how often.

Edited on 3/22/10 to add: 

I do find that walking slowly on the treadmill  or walking around the neighborhood is the least likely to cause me to flare.  I would have to say that for my own personal situation with CFS, walking is the best way to go.  I have been experimenting at the gym and have found that if I do just the resistance training machines (the ones that don’t require my heartbeat to go up high), I am okay and don’t flare from those.  It’s when I try to throw in the more aggressive exercise machinery where I run into trouble.  You would think that after 20 years I would know better by now.  Sometimes I just want to be normal so bad and I see other people doing things and I hate that I can’t do those things.  I have to face facts that I will never be normal.

I’ll repeat once more for all of those who don’t get what this site is about:  I AM WRITING ABOUT MY OWN PERSONAL EXPERIENCE WITH CFS, FIBROMYALGIA AND IC DISEASE.  I AM NOT A DOCTOR, I AM NOT RECOMMENDING THAT YOU ALL GO OUT THERE AND JOIN YOUR LOCAL GYM OR ANYTHING OF THAT SORT.  WHAT I WROTE ABOUT IN THIS ARTICLE IS MY OPINION AND WHAT I HAVE PERSONALLY SEEN, WENT THROUGH, OR AM CURRENTLY GOING THROUGH.

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Comments

  1. Like you I have been struggling to find a way to exercise, and I think I’ve finally figured out how to do it without too many post-exertional crashes (or as you call them: flares). BY the way – where you say most people just give up, that’s not what I see around me, I only see people who keep trying, then do too much and crash, and then have to start over again..but they hardly ever completely give up on exercise?

    I’ve always played a lot of sports and really miss working out (and indeed the athletic body that goes with it 😉 ).

    First you have to figure out a daily schedule that you can follow everyday – on bad days as well. This means that on very good days you will have some energy left (er, hah!) . It’s very important to get enough *true* rest in between activities – for me that means resting 3 times a day for 1 hour. Especially rest for 1 full hour after ‘exercise’.
    I get at least 10 hours of sleep so am awake between 8:30 and 9:30. My CFS was pretty severe when I got sick (bedridden for the first 1.5 years), but I’ve recovered (9 years total) up to the point where I am up all day with the 3x rest.

    I can walk/bike for about 10 minutes every day without crashing, (I’m very tired after, but I rest, and can get on with the rest of the day, and repeat it all the day after). This current 10 minute limit means that joining a gym is still pointless – before I’m at a gym I’m well over the 10 minutes in travel alone..
    The trick also is to start SLOW. I started at 30 seconds and VERY slowly build it up. (at least 1 week on the same level, increase with 30 seconds. As soon as you notice the crash after gets considerably worse, take it 1 step back and stick with that for a week, then try to add 30 seconds the week after, etc.

    It’s slow, but there is progress!

    I also bought some light weights – I have found that anything that requires a lot of stamina/endurance is not always a good idea – too ‘risky’ crash wise because it’s easier to overdo, and much harder to build up – but strength/muscle training WILL work (and after the initial sore muscles, is also easier to build up). Start with 2 repetitions and slowly increase (figure out by how much to increase weekly on your own, depends on the kind of exercise you do..).

    Same with situps and pushups on my knees – start with 2, add 1 every day – as soon as it gets too much take a few steps back and stay on the same level for a week or so and then build it up.

    We had a rowing machine that sat unused in the attic, I started at 1 minute and that seems to be working OK too. I have it at the lowest setting so for now there is very little resistance, and I’m currently at 5 minutes daily. I figured since biking/hiking has a 10 minute limit I could build the rowing up a little faster, I was starting to get ‘crashy’ after at around 6/7 minutes, so I’m back at 5 for a week and that’s going well. It’s quite fun to do, and you train quite a lot of muscles while it doesn’t seem to be taking more energy than walking/hiking. 6 pack and nice legs, here I come *you can stop laughing now..*

    Since I get bored when I have to do the same thing day in day out, I alternate between biking/hiking/weights/sit-up/push-up/rowing and do whatever I feel like doing – but try to do something every day (I do give myself at 1 days off a week, healthy people don’t sport every day either..).

    I occasionally toss in 15 minutes of yoga (there’s a really good free video podcast), but although it’s relaxing and fun, I always get quite sore (and I think yoga still is a bit much, you have to hold a pose for quite a while and my muscles always start to tremble so I fall over)

    Last summer I decided to try inlineskating again. It takes surprisingly little energy if you go slow. Less than walking! Does take more muscle strength in your legs but for me short ‘bursts’ are easier than endurance. Just push off, and roll – the rolling part is a matter of staying upright. I did overdo it a little since it was fun, but I think I’m going to try again this summer and start at 5 minutes and build that up.

    Oh, and I occasionally (on very good days) play tennis on a Wii – fun, but definitely more intense than all of the above! (so if you want to actually burn calories, you should try this).

    So, plenty of options – you only have to figure out at what amount of time to start, and how to slowly increase it so you don’t flare up too badly after.

  2. cheryl lipinski says:

    OM…OM…OM…
    Yoga is a lifesaver! I will not lie and tell you that I am not completely exhausted after a yoga practice/class. It is only when I must miss a few classes when I am fully aware of the huge benefit yoga brings to my life. My pain and extreme spasms are much worse when I miss my time on my mat. Yoga offers a wonderful workout, both lengthening and stretching muscles, but never pounding of joints. I have FM/IC/MS and have the “pleasure” of just about every symptom that goes along with each diagnosis. Not every body-part wants to do what I “tell” it to do (during yoga),but I push on knowing that whatever I can accomplish will be better for me than doing nothing. Good Luck, everyone!

  3. I used to love running but I sadly can’t do it any more. But I’ve found other, less vigourous things to do – I now walk at least 30 minutes everyday and also swim for 30 minutes every week. I still get the satisfaction of having done excercise but without the relapses, it’s great! The key to CFS/ME is being flexible.

    Jane B

  4. I have had fibro since the early ’80’s before it was called fibromyalgia. I have started and stopped so many workout, dance and fitness regimes that I have lost count. I used to run, used to swim too. What do I always go back to? yoga and walking. It has to be gentle yoga. I walk over my lunch break (I work fulltime)and on my treadmill when weather is too cold.
    Don’t forget, if possible, in conjunction with your exercise, to access caregivers, such as accupuncture, chiropractic and massage. These things help you to stick with it and not crash and burn.

    • Thanks, Noni! I actually do get massages every 4 weeks. WhenI first started getting massages, I would get 30 min., then I moved up to 50 min., and now I am up to 70 min. I love massages – especially the hot rocks on my back!

  5. I’ve been treating fibromyalgia for a while now, and a large part of the rehabilitation process is determining exercise that is appropriate for FM. We use an upper body ergometer with very little resistance for only a few minutes to begin, then increase as appropriate. It’s very easy to do to much, so you have to start very slowly. For more information on how we help people with FM get better, visit my blog aw http://www.drbradshook.com. Hope this is helpful.

  6. I find walking in combination with restorative yoga works really well for me. It’s like a moving meditation, too, when you do it thoughtfully and with purpose.

  7. Maija Haavisto says:

    When it comes to exercise, you simply can’t group CFS/ME and FM. People with FM usually benefit from exercise, even though it can temporarily worsen symptoms (and some people with FM can’t tolerate exercise. But unless you’re very mildly ill, exercise is the worst thing you can do if you have CFS/ME.

    Our bodies simply don’t react to it like normal people’s bodies. It causes inflammation (the bad kind of inflammation) and depletes our brains of oxygen for a long time (while in healthy people exercise improves cerebral circulation). It can have severe consequences, even death. Many have ended up in wheelchair or bedbound because of exercise. For example renowned scientist Naomi Weissner who has CFS/ME ended up bedbound in the early 1980s because of exercising more than her body could take. She is still bedbound, over 25 years later! It’s simply not worth that risk.

    Also, many of us are deficient in growth hormone etc, so even if we can exercise a little bit, it won’t do things like build muscle.

    If you read something that recommends exercise from CFS/ME, stay out of it! No CFS/ME expert would ever recommend something that dangerous. I wouldn’t be surprised if someone begins to sue sources recommending exercise for manslaughter when someone dies as a result of following that advice

    • Hi Maija, I hear where you’re coming from. Those of us with CFS have tried to tell doctors that exercise just makes us worse but they still continue to say that we need to do it. A lot of the FM patients I have talked to seem to have just as much trouble with exercise as CFS patients. Some people can do more with CFS than others can, however. I am not telling people to exercise or not to exercise with CFS. I am simply writing about my own experience with CFS on this site and what I have tried and what has and hasn’t worked. Talking about my own experience is not telling someone else to go out and do it. Those who read my site on a regular basis know that I have repeatedly said that I am not a doctor, I do not offer treatment advice, I simply share my own journey with CFS, Fibromyalgia and IC Disease.

  8. Exercises that I have worked at doing and have been able to continue with Fibromyalgia are Rebounding following by Pilates, I find they help with my stiffness and general muscle strength to endure the day a bit better.
    I am able to exercise only first thing in the morning,I am unable to bear it at any time later in the day; too much pain and other symptoms have risen to prevent exercise.

  9. I can actually run on a treadmill and do weights…but my secret is stretching like crazy afterwards and a hot shower usually keep my symptoms to a minimum but if I exert too much like doing yard work than I have a bad flare up…it’s wierd. ANd when I have the time after my work out I sit in a steam shower at the gym.

  10. I’ve come to the conclusion that for me, any exercise at all is counter-productive. By exercise, I mean any deliberate activity whose primary purpose is to increase my fitness. I’ll also include dancing, which was my primary form of cardio exercise pre-CFS. For me, exercise just doesn’t work… I end up feeling much worse for days afterwards.

    I figure that the normal run-of-the-mill activities like going out, shopping, cooking, cleaning etc etc are enough to keep my body reasonably active. Anything that gives me an aerobic response, I avoid. I look at the way I feel physically as the sum of 80% health and 20% fitness. My fitness has definitely taken a dive since I got CFS and stopped exercising, but sacrificing my health to build my fitness doesn’t make sense in this equation. So I rest as much as possible, and meditate to deal with the stress of the symptoms. Once my health has recovered, I have the rest of my life to regain my fitness.

    Having said all that, when I spoke to a woman last weekend who had recovered from Chronic Fatigue, she said that exercise was really important to her recovery!

  11. Hi Graham! 🙂 Thanks for commenting. I have read and heard from several doctors different advice on exercising. I think it has to be up to each individual to see what works for them and what doesn’t. I have had days where I will feel better after exercising and then I have days where I feel worse and am down for a couple of days after. I have found in my own case that if I just use the stationary bike and walk on the treadmill, or outside, that I tend to do better than if I try the more aggressive machines. We are all different and I would never tell someone to exercise or not to exercise. That is their doctor’s job but I try to do what works for me. Take care of yourself!

  12. I think you can actually exercise without negative impact if you practice Yoga, this is a soothing and relaxing therapy that works great for patients with CFS because combines slow movements with controlled and relaxed breathing.

  13. Melissa says:

    Hi i have had fibromyalgia for over a year now. And when I exercise or go out after that I’m done! I’m on my back most of the day. Every hour I get up and walk to the kitchen, go to the bathroom, try to do something. My Dr says I should exercise but don’t overdo it. But I got this way because I was exercising. Why don’t people understand that?

  14. hi, yes you have to pace yourself in everything. Only you know how much you can take . Maybe start with 5 minutes exercise. I found I needed to rest 20 minutes between all activities, then slowly build it up and only do anything until you are tired and don’t push beyond that.
    Hope all goes well!

  15. I have chronic fibromyalgia , acute cervical spondylitis,with myelopathy, anxiety as Hub has cancer and now osteoporosis. 2015 and I am told that I must try to do Physiotherapy exercises……….Hello! I cannot even get down our stairs , unless I am on my backside and then it is all a joke? What is M.E. and how do they G P’s diagnose this disease. I have not been able to even open the door for my border collie who,is rescue dog. Life is not fair. anybody else know any miracle drug do his pain right through my legs to my shoulders, through the whole of my SPINAL Cord and neck. I am now awaiting a Full Trapezeiectomy on MY HAND! I am just turned 60 , look 50′ feel 99 plus some. I cannot walk without a walking stick and a Three wheeled trike for punching to the Garden gate. Alive is fab, NOT!

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