Discussion in 'Fibromyalgia Main Forum' started by SoDanca, Jun 3, 2008.

  1. SoDanca

    SoDanca New Member

    Hi all,
    Having been recently diagnosed with CFS, I've been reading up alot about the condition and trying to educate myself as much as I can about it. I've found that the information regarding CFS and exercise is extremely conflicting. Some of the sources that are considered generally reliable (e.g., Centers for Disease Control, National Institute of Health, Mayo Clinic) all say that graded, moderate exercise is best for CFS, and that being totally sedentary can do more harm than good in the long run. The conventional wisdom seems to be that CFS patients should aim for 30 minutes of exercise 3-4 times a week.
    On the other hand, some other health websites and anecdotal evidence seem to suggest that CFS patients should avoid any type of exercise or exertion altogether. They give the impression that even the most minor physical activity can lead to a relapse and worsening of symptoms.
    I'M SO CONFUSED!!! About a year into my CFS symptoms, I ruptured my Achilles tendon, and couldn't walk on my left leg at all for 6 months. Because of all the inactivity, I gained about 40 pounds. About 6 months ago, after months of physical therapy, my tendon finally healed and I got enough strength back in my injured leg to engage in normal physical activities. So I started working out again. I was quite physically fit before getting injured. I was also well on my way back to regaining that fitness level before I was diagnosed with CFS. I was working out 60-90 minutes, 5 times a week (running, step aerobics, weight training), and lost about 25 pounds.
    I'm having alot of trouble wrapping my head around the fact that having a CFS diagnosis means that I may have to be totally inactive! I have already reduced my workout time to 30 minutes, 4 times a week. No more running or step aerobics (my favorite exercise!), but I walk on the treadmill, do low-impact aerobics or water aerobics, get on the elliptical trainer, and use light weights, for no more than half an hour per day. I also plan on incorporating yoga and Pilates into my workouts, but no more than 5 times a week (total for all types of exercise) for no more than 30 minutes a pop.
    But I'm scared that I might be doing myself more harm than good even with this little exercise. So far, my symptoms haven't gotten any worse with these 30-minute bouts of exercise. I have to admit, I would feel pretty crummy for days after running for 45 minutes or taking a 60 minute step aerobics class. But not since I've shortened and lightened-up on the workouts.
    I'm curious as to what fellow CFS-patients' experiences with exercise have been. I'm especially interested in knowing what kind of shape you were in before starting to experience CFS symptoms and/or getting a diagnosis. It makes sense that if someone was out of shape before being struck with CFS, they might only be able to manage 1-5 minutes of physical activity per day, but what about people who were at peak physical fitness before becoming ill? Then again, nothing about this illness seems to make sense. Also, what about the different types of exercise? Are yoga and Pilates better for people with CFS? If so, for how long per session? What about water aerobics? Maybe I'll have to resign myself to a totally sedentary lifestyle in which I must give up the things I love (even in small doses). But I hope not. Sorry for all the questions ... I guess I'm still trying to come to terms with my diagnosis and what it means.

    (P.S.: I've read that exercise can be of great help to people with FM, and that some FM patients can get back to pretty much normal levels of exercise. But it seems to be different for CFS patients. So I'm particularly interested in the exercise experiences of CFS patients WITHOUT fibro.)
    [This Message was Edited on 06/03/2008]
    [This Message was Edited on 06/04/2008]
  2. Gnomie

    Gnomie New Member

    I'm not an expert but in my opinion, the best way of knowing the right amount is by the degree of post exertional malaise (PEM) you have. How do you feel immediately after exercise, twenty-four hours later and in the week following? The general idea is that you do an amount of exercise that would be repeatable the next day. In other words, if a 30 minute walk does not make your symtpoms worse immediately after or the following days, then that is ok for you.

    People with more severe CFS/ME would physically struggle to stand upright, or to complete the exercise at all and FORCING oneself past the point of exhaustion is what is most dangerous.
  3. Lichu3

    Lichu3 New Member

    Exercise levels vary among people with CFS and there are some on this board who were very athletic previously (a few triathletes even) who have been floored by CFS. There isn't a direct link between how healthy you were prior and after CFS although if you have other prior medical problems, you might be worse off just from having more illness in general.

    Keep a journal for a few weeks and see how you feel physically or mentally days after. There's a delayed effect often in CFS that makes it hard for people to link their level of activity to symptoms.

    Also, keep in mind that for some people, increased physical activity leads to increased cognitive problems and vice-versa. Both physical and mental activity require energy.

    And, all activity should be counted as "exercise", i.e. if you don't work-out but go shopping for a few hours and feel bad afterwards, that level of activity may be too much for you.

    The "conventional" exercise advice may be harmful. Check out this recent link from the CDC, which has changed some of its old advice:

    (Mayo info is outdated)

    [This Message was Edited on 06/04/2008]
    [This Message was Edited on 06/04/2008]
  4. PVLady

    PVLady New Member

    I pretty much feel your body will tell you your exercise tolerance. Everyone is different. Some are extremely sick for days after the mildest exertion - others can go to the gym and work out.

    In my worst times, if I tried to go to a gym I would feel like I had the flu for a week or more. I also could not even carry in grocery bags without being in terrible pain the next day, along with nausea.

    Also, I could never swim, I also had a terrible flare after trying just moving around in a jacuzzi.

    Many of us have extreme exercise intolerance. Doctors who arbitrarily tell fibro patients to exercise are wrong. Yes, they cannot lay around and be sedentary but it must be as the CDC advises - graded, moderate exercise - even walking as tolerated.

  5. gapsych

    gapsych New Member

    Before I had this DD, I was very fit and active.

    If I am in a flare, there is no way I can exercise. Even if not in a flare which includes the exhaustion, it can sometimes be difficult and that is very frustrating.

    I was doing a warm water class for a couple of months and then I could not even do that for about three months.

    Your body will let you know. Sometimes this DD cycles and you have to keep that in mind and not beat yourself up if there are times you can not exercise.

    I am impressed with what you are able to do.

    Kind of exhausted me, LOL!!


    Edit. I should mention that I have both FM/CFs/ME.[This Message was Edited on 06/04/2008]
  6. harmony21

    harmony21 New Member

    but my doc explained that there is much interlinking between CFS and FM

    I wasnt fit before and even less so now and gained many pounds, annot do any exercise and yet they say exercise is supposed to be beneficial for those with FM

    Whatever your body says to you as you are already aware that exercise needs to be done, that is a start, let your body do the talking i say

    good luck darlin

  7. mezombie

    mezombie Member

    *Graded* exercise is controversial. It presumes that increasing exercise is a helpful part of treatment. Most people find that they cannot increase beyond a certain level without "post-exertional malaise" or PEM, and possibly worse (major relapse or permanent exacerbation of symptoms).

    According to Dr. Cheney and others very familiar with ME and CFS, we tend to fare better with anaerobic than aerobic exercise. That means stretching, resistance exercises, and light weight lifting are less likely to cause the hallmark PEM. So yes, Yoga and Pilates would be good choices.

    The 1:3 exercise to rest formular is a good to remember.

    Also keep in mind that ME and CFS tend to have relapsing/remitting features. Thus, your ability to exercise may not always be the same. Skipping days or even weeks is OK!

    No matter what you choose to do, please do not over-extend! You may not recover from the effects of the exercise. Go slowly, do less than you think you can handle, and increase from that point until you hit the mark that is right for you.

    I was in excellent physical condition before I came down with M.E. The exercise intolerance showed up immediately (I had a sudden onset of all symptoms). It was very odd; I found myself trying to run to catch a bus, but my body wouldn't cooperate and I felt like I was moving in slow motion. I was a wreck once I sat down. It's an indescribable feeling, and goes way beyond exhaustion or deconditioning or anything else I'd experienced previously.

    [This Message was Edited on 06/04/2008]
  8. marti_zavala

    marti_zavala Member

    In our population, exercise can be harmful. The GET and CBT theories are fueled by the psychologists.

    I read somewhere and I am trying to find the study that found that cortisol DROPS in our population rather than increases which is a protective thing our bodies do during exercise. So, it is actually harmful to do exercise.

    But that does not mean we have to be sedentary. We should move our bodies in order to get the lymph system moving.

    Not trying to be ugly, but are you sure you have the right diagnosis as Post exertional malaise is a diagnostic feature of CFIDS. I would love it if you did not have it and I am amazed at the level of exercise you can tolerate. You do not mention PEM but the fact that you can do this 5 days in a row is amazing and does not sound like CFIDS. There are many other REVERSIBLE conditions that are similar in some ways to CFIDS. If I were you, I would see if you can get a confirmation of the diagnosis.

    To answer your other questions, I was very athletic, very fit, very normal weight, very active. I was sudden onset and bedridden from one day to the next. I did work myself up through very slow exercise to walking a mile a day but the combination of extreme stress and OVER exercising caused a relapse that was worse than my sudden onset. Please use caution whether it is exercise or over activity especially if you are ill, are near someone who is ill or going through extreme stress.

    All the best,
  9. marti_zavala

    marti_zavala Member

    "Some of the sources that are considered generally reliable (e.g., Centers for Disease Control, National Institute of Health, Mayo Clinic) all say that graded, moderate exercise is best for CFS"

    These sources are NOT reliable, although they should be. These are the folks that spent CFS money on other illnesses and got caught.

    They are focused on psychological causes and have wasted our money and our time.

    Here are some reliable sources

    also, this great site

    and also the library section of this board has lots of great information that is real and truthful.

    All the best,
  10. Marta608

    Marta608 Member

    It's a reoccurring question that I'm not sure has ever been answered to anyone's complete satisfaction. That's because "every body is different".

    I must begin by saying that most recoveries that I've heard about happen in the first year or so. So if I had it to do over again, I would find a way to do as little in the way of exercise or work for as long as it took to feel well again. I'd even sleep the majority of the time. This is what I would do given how I felt and the results I found by continuing to work.

    If you want to try exercise, it's up to you. It's said to help with FM but overdoing can cause a relapse in CFS patients. Everyone who posted is saying the same thing: find what works for you. Start with gentle stretches - ONE repetition of whatever you can do and see how you feel the next day. Increase by ONE each time. You'll probably find that what you can do won't be the same every time and this is good. It means you're listening to your body.

    After 14 years I now use my Pilates bench a bit, do some stretches and a few yoga poses that work for me, every other day. The entire routine takes me about 12 - 15 minutes on a very good day, so you can see that I don't do a lot.

    When I moved, because it was so physically demanding, I didn't do these things and I paid a price for neglecting them. Now, unless I think I won't be able to get back up the stairs, I do some exercises and find that I don't feel worse for them. There have been many days that I've had to skip them entirely (lately) and I don't feel guilty. I'll just do them again when I can as I have for years.

    [This Message was Edited on 06/05/2008]
  11. efly

    efly New Member

    All the above seems good advice.... all I can add is be Very careful... Dr Myhill states When you feel like exercising ..just before you go out... LIE DOWN... and rest for 5 minutes.. if YOU have ANY symptoms... Dont do it...The aim is AT rest have NO symptoms, at consistent rest have no symptoms..... then move.... and only then.. If you get pem...pull back again...... A lot of us become bedbound for months and months......... Good luck...... believe the people with the disease..... THEY HAVE MORE EXPERIENCE THAN THE DRS.... they are NOT in our body!
  12. greatgran

    greatgran Member

    Exercise for me is doing my daily chores, if I am able to do that. I have CFIDS and can't tolerate exercise if I do I pay.

    Is housework, grocery shopping, cooking and caring for little ones is this not considered exercise?

    I feel lucky if I can manage the above at least its activity.

    God Bless,
  13. ellikers

    ellikers New Member

    I agree with lots of the folks you have posted.

    Every body IS different- the tricky part of figuring out how much to move depends on how you body responds, how much you flare or have "post-exertional malaise".

    I prefer the term "move" to exercise because what we usually are able to do in the midst of full-blown intense fibro/CFS/CFIDS/what-have-you is not what the so-called experts call "exercise" ... I say f---- that and go with what you CAN do, what doesn't make you flare too much, and then do it the next day if you can ... and then slowly see if you can increase.

    That's what I did (I used swimming). And I got to the point where I can swim laps for 20 minutes or longer (I do tend to get bored) and ride my bike and do all the things I could before. So it is possible (in combo with a good protocol that works with you of course).

    Edited to add:

    To be more clear, I started "swimming" (when I was REALLY bad) by getting into the pool and treading water or somehow moving- seriously, walking and SLOW swimming .... at first I could only do that for like 5 or 10 minutes. Every time I did that, I just said "Good JOB YOU!! You rock, you did the best you can. That's enough" And the next day I'd do the same ... until slowly I felt slightly better and would go for 15 minutes, and then I got to the point I could swim laps for over 20 minutes and not get sick afterwards. I'd also use the hot tub and steam room (before and after) to loosen up my muscles and relax them- I had WAY less muscle pain and spasms and fatigue afterwards if I did that.[This Message was Edited on 06/09/2008]