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Adrienne Dellwo

Another Fibromyalgia & Exercise Study. Sigh.

By June 11, 2013

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I think most people with fibromyalgia get sick of seeing these studies on how exercise makes us better. The latest one has me shaking my head a bit.

Researchers gave 170 women with fibromyalgia customized exercise prescriptions and then checked with them at 12, 24 and 36 weeks to gauge its effect.

Only 27 people adopted the moderate-to-vigorous activity levels prescribed to them and stuck with it. That's only about 16%. Meanwhile, 68 (40%) started out with the exercise program and then decreased their activity levels, and 75 people (44%) never achieved the benchmark for activity increase.

So what happened? The conclusion we've heard before: increased activity led to better physical function and overall well-being. However, the ones who stuck with the activity increase didn't fare any better than those who tried in and then backed off.

On top of that, researchers said their findings suggest that increased volume is not associated with worsening pain. In a press release, one researcher said:

"For many people with fibromyalgia, they will exercise for a week or two and then start hurting and think that exercise is aggravating their pain, so they stop exercising. We hope that our findings will help reduce patients' fear and reassure them that sustained exercise will improve their overall health and reduce their symptoms without worsening their pain." ~Dennis C. Ang, MD.

What I would like to say to Dr. Ang and other researchers is that those of us with fibromyalgia get really good at reading our bodies. We know that we need to exercise. We also know what exertion does to us - and it most definitely can cause pain flares.

I'm not sure where the disconnect is between us and researchers. Look at how many people were able to sustain the prescribed activity levels of the study - just under 16 percent. That means 84% of participants either didn't or couldn't.

I know I've made concerted efforts to be more active on a daily basis. The problem is, like most of us, my capacity for activity changes from day to day. And you know what? If I don't respect that, I pay.

Say I decide to do 45 minutes of vigorous activity per day, based on careful experimentation that tells me I can handle 45 minutes. After several days, I wake up one morning with very little energy. If I push myself to do that 45 minutes, I'm going to crash. It'll probably happen within a couple of hours of exercising, but might take until the next day. I'd most likely be on the couch for about 48 hours afterward.

Thing is, I've learned to tell when my body can and can't handle activity. So, Dr. Ang, when I stop exercising it's because I'm not able to exercise at that particular time. It's not that a routine flare comes along and I mistakenly blame exercise. It's that I have ups and downs and have to adapt to that.

How can I put faith in the idea that most of us would be more active, in a sustained way, if we could? Because I hear from people every day who say, "I just wish I could do what I used to." They want to go back to their full-time jobs. They want to go back to the sports they used to enjoy. They want to go back to a normal life. And what happens when they over do it? They crash. We all know the routine.

I wish researchers would take a more realistic approach to exercise and fibromyalgia. I do believe that regular activity - tailored to our individual abilities - can improve our symptoms. But they don't seem to understand that our activity level will always fluctuate due to our symptoms.

What do you think? Are researchers too fixated on exercise? How could their approach be more realistic? What's your experience with exercise? Leave your comments below!

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Comments
June 11, 2013 at 2:55 am
(1) Gert says:

I think you’ve more or less nailed it. You’re right about knowing on what days to take it easy, and when overdoing it can lead to a crash.

I think there’s also a longer effect of that, too. I can go for weeks or months doing a fair amount of regular exercise, only taking the odd day out. But then, and without much warning, I can have a relapse which makes even walking down tot he local park very difficult. And it’s like I have to start again from square one.

So, taken overall, I’m exercising any more – or am any fitter – than 3 or 4 years ago.

June 11, 2013 at 3:19 am
(2) Gert says:

^ *not* exercising more, or am any fitter!

June 11, 2013 at 5:34 am
(3) Greetings from FInland says:

Last time when I mentioned my fibromyalgia diagnosis to a doctor, he smirked and said “not all doctors agree that it even exists, although many now do — and the treatment is exercise.”
The reason to that last statement seems to be “Richards S C M, Scott D L. British Medical Journal 2002; 325: 185–189″. So I read the study but it just didn’t apply to my case. I have had fibromyalgia symptoms now for 15 years. Most of the time I have gotten exercise through my job many times more than the subjects in the study. Just my walks to the work place took more time than the exercises in the study. The recommendation to increase weekly exercise from 0h to 2h makes sense. The recommendation to increasing exercice from 20h to 22h just didn’t make sense for the treatment of fibromyalgia.
That said, the recommendation for exercise is good when it is kept in its place: It’s not a cure but exercise can be beneficial to the body even when it tells otherwise. Be moderate and intelligent with it.

June 11, 2013 at 9:04 am
(4) Mrs. R says:

I have struggled to stay fit. I was very active.
I became depressed, the sedentary.

I had a change of ‘heart’ truly.
I am using LDN from a compound pharmacy per Standford Study information.
At this time in my life, I don’t fight to get out of bed.
When I exert my body with chores, extended walks, etc. I follow up with L-Glutamine. Somehow, for me, pain is reduced, energy returns.
I just do more if I am motivated.

Result of MD ignorance: low vitamin D levels, poor absorption lead to osteoporosis, fall lead to broken hip bone, Dam!
So, now I deal with extra pain. I fight to walk each day ( 30 to 90 minutes).

That’s my exercise status. It’s my story! Each of us needs to follow how our body talks to us.
My biggest problem has been continually fighting depression from the pain in doing ‘anything’!

Good Luck all!

June 11, 2013 at 9:15 am
(5) Rachael says:

This exercise thing and why it doesn’t work for many fibromyalgia sufferers all goes back to the “spoon theory” for autoimmune illnesses (eg lupus). Most people start the day with unlimited amount of possibilities and energy to do whatever they desire, but this is not the case for people with fibromyalgia, or autoimmune illnesses. You are already starting your day off at the almost empty mark.

Exercise will benefit those who are suffering from depression, or down in the dumps because depressed people have large dopamine stores (they are sluggish, in need of a boost; stimulation). When they exercise their adequate dopamine stores produce pain-killing, feel-good endorphins.

However, many sufferers of fibromyalgia are starting each day with less than average dopamine stores. When you have used up your day’s supply your pain and other symptoms of fibromyalgia will intensify. Low dopamine stores; no ability to make pain-killing, feel-good endorphins.

June 11, 2013 at 10:11 am
(6) Tom Kindlon says:

Important typo:
“However, the ones who stuck with the activity increase did fare any better than those who tried in and then backed off.”

Judging from the abstract, this should say:
“However, the ones who stuck with the activity increase did *not* fare any better than those who tried in and then backed off.”

June 11, 2013 at 10:56 am
(7) Verla says:

I get really frustrated with these studies. I was diagnosed in 1997 but have had fibro since a small child. My doc pushed and pushed the exercise thing so I did it and I pushed myself to continue with it for a year. At the end of the year, I could hardly walk any longer. The pain and fatigue left me unable to work, and severely depressed. At this point, I have gained back some of my ability to “move” and I am working part time. I do not have a regular exercise program. On good days I move and get done the things I need to around the house like cleaning and mowing the lawn. I’ve learned that I have to pace myself and on a bad day I have to limit myself as to movement, because I have to work, I need to save my energy for that. I have a new doctor now and I just cringe when he brings up exercise. We tried water therapy but had to stop because of the fatigue, I was missing work. Can’t support myself if I miss work. I just don’t think these studies are very helpful. Those who succeeded according to them, why did they? Did they have better pain control, less stress, how bad were their symptoms before starting? Just because you are diagnosed with fibro , doesn’t mean you have it the same as someone else, some people have it more mildly than other, or other conditions along with it , not just fibro.

June 11, 2013 at 12:23 pm
(8) Alex says:

I have been diagnosed with FM, but I think that I have CFS. Exercise (lifting weights) does not seen cure it – but makes me feel like I was poisoned. Afterwards, I have to take a 30+ minute nap to recover. I guess I am lucky in the sense that I do get a serious pump and “high” while exercising… But that is about it… I get physically miserable in the short term, and have nothing to show in the longer term… :(

Any comments?

June 11, 2013 at 12:30 pm
(9) Donna says:

I agree a little bit with everyone. I find mine is a little like “feast or famine”.
I can either go to the gym for an hour or two 3-4 days a week or can barely get out of bed. I like exercising, because at least the pain I get from working out, is something I earned and chose!!!

June 11, 2013 at 1:03 pm
(10) Deanna says:

I think each of us have a different experience of fibromyalgia. What you say is true, Adrienne, that we know our bodies and that every day for us is different.

I am a proponent of exercise, but I had to find the right one for me. When I was first diagnosed with FM, I was given resistance exercises and told to walk 5000 steps a day with a goal to reach 10,000 steps a day. I do not have enough spoons to walk 10,000 steps a day and still be expected to clothe & feed myself! As we all know, going beyond our limits causes us to crash for days. I would push for the goals then wipe out. Not helpful to me or anyone else.

A neighbor (87 years young!) told me about a local Tai Chi for Arthritis class and I signed up on a whim. It is very gentle exertion. For the first six weeks I had no spoons and was in much pain after the class. Now after several months, I do the class twice per week and find it gives me energy and strength rather than takes it away. I am very tired the day of class, but feel benefits over the following 48 hours. When I skip class or have several sedentary days in a row, I notice I become more stiff and my pain overall increases. I know being sedentary is detrimental to me. The less I move, the less I am able to move.

That is my experience. I know your mileage may vary.

June 11, 2013 at 1:55 pm
(11) CC says:

People who are paralyzed or severely injured learn to move again by undergoing painful therapy involving movement and exercise.

MS patients exercise.

Parkinson’s patients exercise.

ALS patients exercise though they know they have a limited amount of time before death.

June 11, 2013 at 2:29 pm
(12) sillywinks says:

We all must learn to listen to our bodies to know when enough is enough and when it is okay to continue on with exercise. I tried to get into more exercise back in March. During the swimming I felt great only to feel drained later. After regularly swimming, and not for long periods of time either, I finally had to stop because I crashed… badly. I think since my crash and having to seriously reduce all my activity to recover, my brother no longer comments on how exercise will make me feel better. I ended up, unintentionally, showing him what happens when I do too much. I think he has now moved onto nutrition, which is much more constructive for me. lol. Now that I have gotten back on track I bike to and from work one day a week (two if I actually have the energy) and go to the gym once a week. I walk at least an hour a day regardless as it is my main mode of transportation to work. I read about these silly articles and, as a medical librarian, I can tell you they would not pass scrunity to be called “evidence based” due to many flaws in the follow-ups and many other aspects of them. I appreciate that research is indeed being done, however, they need to keep in mind the realities of a person with fibro. They only followed people for 36 weeks and I wonder how those people would fair if they stopped and if it would catch up with them, knowing how activity over time can seriously catch up with you one random day and throw you into a flare.

June 11, 2013 at 2:40 pm
(13) ninthRing says:

G’Day,

I’ve been sick with FMS since 1988 & the one consistency, through all this time, has been doctors telling me that exercise will make things better.

After spending gruelling, excruciatingly painful years exercising till I dropped, then crashing in a heap for days, I decided that they didn’t know what they were talking about.

I’ve since spent a lot of time learning about FMS & what was happening in my body when I was exercising.

2 things I’ve be come across:

• Exercise stimulates the immune system (partially by muscle damage releasing cytokines)

• There is a strong connection between FMS & abnormal levels of (some) cytokines.

Is it possible that heavy exercise could be making things worse?

I’ve been sticking with a limited exercise regime of several short walks a day & swimming twice a week at the local pool. I’ve had a few bad days when I’ve had to reduce or skip my exercises, but overall I’m doíng ok.

ninthRing

June 11, 2013 at 4:23 pm
(14) Eva says:

I’m glad to be able to do a light stretch exercise routine on my gymnastic ball daily that truly reduces my pain. Sometimes I need it for 90 minutes but it fortunately feels good. Past that though I just do walks as often as I can get out – brisk on good days. It’s very hard to schedule an exercise routine past that.

June 11, 2013 at 6:09 pm
(15) Rachael says:

Again, going back to “spoon theory”, I no longer believe in structured physical exercise. Why waste my spoons on regimented exercise? I get my exercise by going about the daily activities of living my life. So many people think that they are not being physically active unless they are doing structured exercise (eg.I must do 100 push-ups, or swim 20 laps 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 and living our lives; looking after our families, cooking, housework, yard work, play, even a leisurely walk in the park etc, but at our own pace; not someone else’s.. Doing otherwise, or pushing yourself beyond your limit, especially when you don’t feel up to it is just another stress. All stressors eventually lead to flares.

June 11, 2013 at 6:17 pm
(16) Alex says:

Re: evolutionary history and exercise.

Prehistoric people did not have supermarkets were they could buy food. They didn’t have chairs, cars, elevators, etc. They had to hunt Mammoths, etc, for food, and the guns were not invented back then. Also people had to avoid getting eaten by wolves, saber toothed lions, etc

Also, not everyone could simply buy bread. They had to make it…
Nothing to say about physical exertion on the farm, without any electricity, running water, etc, of course.

So it seems that strenuous exercise (for the modern office worker) is just to have natural amount of physical exercise.

Rachel: “Our evolutionary history didn’t feature planned activity sessions.”

Correct. Entire day may have been spent doing what some would consider heavy labor. And not everyone slept on soft bed or bed at all!

June 11, 2013 at 7:57 pm
(17) Rachael says:

Alex: Regimented, structured exercise is different than going about our day to day activities, whether years ago, or in the modern age (eg.I must do 100 push-ups, or swim 20 laps everyday). And to say that people today aren’t active enough because they work in offices is utter nonsense. What makes people today think that we are living such sedentary lives? It’s more like life on a treadmill from my perspective.

I know many people including myself who were up at the crack of dawn before getting ill, getting children fed and dressed and off to school before going to work. I worked in an office in the city which required me to take a train. When I got to the station, I walked for 30 minutes before I reached my destination. I was on my feet much of the day as my job required me to do so.. I left for work at six am and got home at six. pm When I got home I had cooking, cleaning, yardwork, homework etc to do. So, if you think I still required structured gym time after work (someone telling me to do one more jumping jack, or one more lap around the track) you are completely wrong.. That would be just another stressor added to an already.very stressful day.

June 11, 2013 at 8:10 pm
(18) Rachael says:

PS Alex: I got sick from doing the very thing that you are advocating I require, regimented exercise (aerobics classes). Why in the world would I now think that structured exercise must be the cure for my illness?

June 11, 2013 at 8:33 pm
(19) Alex says:

Rachael,

I don’t believe that exercise is a cure for FM/CFS. I wish it were.

As for exercise today vs distant past. People in ancient times did heavy labor, “exercised” much more than most people today, and lived very austere lives. They didn’t have all the conveniences that we have today.

Those today who work as hard laborers/moving people – don’t need extra exercise. Office workers (who are not sick with FM/CFS, etc) would benefit.

June 11, 2013 at 9:30 pm
(20) MissyD says:

You are SO right on this one, I used to be a marathon runner, so I really do know the value of exercise, but PLEASE don’t presume to “prescribe” to me as to how much and when I should work out! Pushing it when you are sore and tired is a recipe for disaster. IMHO

June 11, 2013 at 9:49 pm
(21) Dianne says:

I have learned that if I work/play hard I have to rest hard. I must consider with everything I do there is a cost and it is high sometimes higher than others. I can do most of the things I want too if I am willing to pay the price. I can mow my yard if I am willing to spend a day or two on the couch recovering. Nothing changes this not diet, exercise, physical therapy, or medication. I have been working full time and doing everything “right” and the only change is negative. I will soon have to quit I can’t keep up. Focusing on “obviously your not doing enough” has only lead to depression. Perhaps we need a new approach I know my body. I would love for medical professionals to recognize and acknowledge my expertise in that area.

June 11, 2013 at 10:30 pm
(22) Rachael says:

Alex: Some people are more at risk than others to develop FM/CFS. I was an office worker who became sick after adding aerobic exercise to my already extensive list of daily activities. Alex, you can’t generalize like that and say, “Office workers (who are not sick with FM/CFS, etc) would benefit.” I truly believe if I had not added aerobic exercise to my daily routine, I would not have become ill. Who’s to say that someone now, without this illness, wouldn’t suffer the same consequences as I did, by pushing themselves beyond their limit and also become ill with FM/CFS? I know many people with FM/CFS who will testify that their illness was triggered by pushing themselves beyond their bounds via structured, regimented exercise.

June 12, 2013 at 7:01 am
(23) Alex says:

Rachael: If a person gets CFS/FM after doing lots of exercise, then it doesn’t mean that exercise itself caused it. It is a logical fallacy of:
Post hoc ergo propter hoc.

Many people exercise and don’t get sick, some even feel better.

There are other factors (which I hope get discovered and treated) that are responsible. If stress of exercise wasn’t one of the triggers for those predisposed to CFS/FM, then stress in life might be.

June 12, 2013 at 8:16 am
(24) Rachael says:

“If stress of exercise wasn’t one of the triggers for those predisposed to CFS/FM, then stress in life might be.”
*****************************
Alex: That’s what I was trying to suggest in my previous comments. Stress comes in many forms including structured exercise. If you feel you are pushing yourself beyond your own limit, if you feel you must do that extra lap even though you are exhausted, then that structured exercise class has become a stressor, If you are going for a walk in the park because you desire to, you feel you have the energy to do so, then that walk in the park is a pleasure, not a stressor.

One person’s pleasure is another person’s stress. Stress is caused by lack of control over one’s own life. If am not in control of my life, or listening to what my body is saying, if I feel I must do those extra laps because I am pushing myself to do so, then I will be doing those things, while running-on-empty (out of spoons). That’s why I no longer participate in regimented exercise. I listen to what my body is telling me. I don’t push myself beyond “my” limit..

“Many people exercise and don’t get sick, some even feel better.”
****************************
See comment # 5

June 12, 2013 at 9:43 am
(25) Alex says:

Rachael: About listening to the body.

I noticed an interesting thing. Before exercise I can feel bad, my head feels hot and moist, like I have a flu or something. First few minutes of lifting weights feels like “I can’t do it”. But then, the pump occurs as well as endorphins/anandamides/whatever are released and for 60-120 minutes they help me. Too bad that after, I get a serious crash and rest in bed with closed eyes trying to nap for 30+ minutes.

So I wonder, how much can I trust my body and what is says?

June 12, 2013 at 10:21 am
(26) Rachael says:

“So I wonder, how much can I trust my body and what is says?”
*******************************
Alex: Yes, I know this feeling of already feeling unwell before participating in structured exercise. That’s a “sign” that you probably shouldn’t be doing this. You are probably already becoming dopamine depleted/dysregulated, but at this point of your illness you still have the ability to produce some feel-good endorphins.

I used to do the same thing, feeling unwell, but still pushing myself for that endorphin high. Eventually though there was no endorphin high, just pain, nausea, and general malaise. Any activity that dysregulates/depletes dopmaine stores (drugs, alcohol, stress, exercise etc) can cause prolactin levels to rise which has a stimulatory effect on the immune system. Be very careful, you could go from an already bad situation to one that is much worse.

June 12, 2013 at 1:38 pm
(27) ixchelkali says:

Tell it, sister!

“…and then start hurting and think that exercise is aggravating their pain”

How about, KNOW that exercise is aggravating their pain? How condescending he is to think that he knows more about these patients’ pain and disease than the people who live in those bodies, who experience the pain and the effects of the disease day in, day out. It seems as though they give less credence to human subjects than they do to lab rats. Somehow they think that if patients don’t succeed in carrying through the exercise levels they’ve prescribed, it’s because they are letting fear stop them, like it’s a character defect.

The salient finding being that “the ones who stuck with the activity increase didn’t fare any better than those who tried it and then backed off.” That should tell them something.

June 12, 2013 at 2:08 pm
(28) Cindy C says:

I have had fibromyalgia since 1997. 2 1/2 years ago I was extremely active, walking, chopping wood and our campsite, etc. then I was taking off all pain medication, and put it on a different medication. My life crashed! No one told me that the side effects of this medication were extreme weight gain and back problems! I’ve now been bedridden for almost 2 years! I can’t stand up from more than about 2 minutes at a time without my entire body collapsing. I have now gone off of all medications, and and starting to slowly get my life back! I am slowly beginning to exercise again, very gently! please FMS sufferers, double check the side effects of all your medications! Don’t just blindly listen to the doctors as I did! listen to your body! Do what you can, when you can! For those of us with FMS, there are no right answers! your body knows better! Do what it tells you to do!

June 12, 2013 at 3:17 pm
(29) Alex says:

Hello Rachael,

I wonder: Can exercise deplete dopamine over long term? While I do experience terrible short term crash, I do not know the long term effects,
if any, of exercise. Also, I figure that if I am stronger, then I would need less physical effort in day to day life, thus more energy left. I am also concerned about sedentary/lying on bed so much each day. It seems that heavy but short bursts of activity can somehow mitigate de-conditioning of me lying on bed most of the day.

I am addicted to exercise. I am in a lot of constant malaise and weight lifting provides short term boost in endorphins, and some more motivation to go on (see how much more I can lift next week or month). Of course, my experience so far is that exercise doesn’t seem to cure CFS/FM.

Any comments?

Thanks,

Alex

June 12, 2013 at 4:19 pm
(30) Sherrie says:

I agree with Alex. I am also a regular exerciser, always have been. I was diagnosed with fibromyalgia and chronic fatigue syndrome in 1990. The 1st year, I could barely move, I was in so much pain, and so exhausted, that I gave up my exercise routine. Eventually I decided I had to do something about this. I started exercising again, at a much lower level, and worked up. Yes, it hurts, sometimes more than other times. I just do the best I can each day. To successfully exercise, I have to break it up into smaller sessions throughout the day. My CFS includes post-exertion malaise, so this is an adjustment I had to make. My point is, exercising can still be done, but probably not the same way as before the illness. I feel much worse, and am in more pain, when I don’t exercise.

June 12, 2013 at 5:36 pm
(31) Rachael says:

“I wonder: Can exercise deplete dopamine over long term? While I do experience terrible short term crash, I do not know the long term effects, if any, of exercise.”
*********************************
Alex: I believe it all comes down to individual neuroanatomy and neurochemistry, which lends some of us more vulnerable than others to develop these types of conditions/illnesses in the first place. My personal research regarding my own case of ME/CFS has led me to believe this. And, that just like using drugs, drinking alcohol, smoking cigarettes or too much stress., exercise will deplete/dysregulate dopamine in predisposed individuals (those with lower dopamine storage capacity to begin with) over time. I think of the crash that sufferers have after exercise is much the same as what people experience when withdrawing from drugs or alcohol. How many people with this condition have described it like a terrible hangover, or the flu for life. So, while I don’t know how regimented exercise will effect you over time, I am quite convinced for myself, that it is very harmful and I will no longer partake.

June 13, 2013 at 12:16 am
(32) Rebecca says:

“For many people with fibromyalgia, they will exercise for a week or two and then start hurting and think that exercise is aggravating their pain…”

What? Does anybody else get this? Why would we think that exercise caused us pain if it really did not cause us pain? And why is a guy without FMS giving us his opinion like it is fact.

Dennis Ang, when I get done with a normal day at work I hurt, but I can deal with it. When I exercise (like a normal person) that night and days after I feel like I got hit by a truck and I am recuperating. If I exercised, and the pain was as it was always, I would keep on exercising. Before I got FMS, I was a person who went to the gym at least 4 times a week. I used to be very athletic and through sports and other activities I have had two concussions, one broken leg, and a cut on my face that required over 700 stitches. I have given birth to two children. One was a natural birth that lasted more than 24 hours. I am no wimp. I know what pain is and I know that exercise increases my pain and fatigue greatly and significantly incapacitates me for days. I am a grown woman who has managed to work a full time job, raise two children, and attend classes while having FMS. Please quit treating me as if I am a child and quit speaking for me.

June 13, 2013 at 8:20 am
(33) sillywinks says:

“For many people with fibromyalgia, they will exercise for a week or two and then start hurting and think that exercise is aggravating their pain…”

I for one find there is a difference between exercise pain and fibro pain. I don’t mind exercise pain as I know it is self inflicted. As for fibro pain…

June 13, 2013 at 2:18 pm
(34) Benia Zouras says:

It’s funny that I recently wrote a blog post on the topic of exercise and Fibromyalgia. I shared my own goals and progress in this post:

http://xsarenkax.blogspot.com/2013/06/move-around-and-feel-better.html

Getting back to this particular study: I’m disheartened to read that the attitude of this Dr. Ang, though I think his heart’s in the right place, is missing such an important point, one which I’m absolutely sure that at least some of these fibromite participants must have reminded him of: every day is different for a fibromite and exercise regimens cannot exist in a vacuum for any of us. The amount of exercise we can tolerate on any given day (or moment, really) depends greatly on so many other factors:

- are we flaring in any way, and how badly
- are we going through a stressful situation
- are we getting the nutrition and medication our bodies need
- are we saving our “spoons” for an upcoming chore, project, or event
- how long ago have we been able to tolerate exercise (and how weak are our muscles at the moment)
- etc.

DOCTORS:
I’m sorry that it’s not as simple as you’d like it to be. Definitely keep preaching to your patients that they need to strive to stay active and fit, but do not apply a strict regimen of exercise that does not take into account ANYTHING else about the patient you are treating. I’m not a fruit fly. I’m a person. I led an interesting and varied life before Fibromyalgia, and I will continue to lead an interesting and varied life to the best of my ability. I will strive to do the exercise my body needs to stay healthy, as well as other things like eating right and reducing and handling stress. Do not call me a failure for respecting my body and adjusting appropriately.

Re-do this study with the added allowance for self-adjustment by the participants and see what a difference you might make on the attitude of the medical community and Fibromyalgia patients everywhere.

June 13, 2013 at 2:25 pm
(35) mom4jb says:

I must disagree with your post! I have fm and have slowly over the course of many months (9 months so far) have been able to work up to a very vigorous exercise program and am able to experience very active adventure travel. You can’t start with 45 minutes everyday; you start very slow. I started with biking a few minutes or running a few minutes whatever I could handle. Then I’d rest the next day. I would do yoga a day and then either rest the next day or do my aerobic run/bike. I didn’t go very far in the beginning…maybe 10 minutes. That was 9 months ago. Now, I can run 3+ miles or ride 10+ miles on my aerobic day, even 45 minutes of vigorous swimming training with a swim coach. On those days, I also have added weight training on my bowflex, again starting with very minimal weight. The next day is yoga, and then a rest day. Now it is not perfect, there are some days when I need another day of rest but then I’m right back out there. I listen to my body too, but I don’t use my fm as the excuse. I work full time at a large corporation in a stressful job, have a family and home to care for as well. You can do it if you are dedicated to it and treat it as part of your medication program. I’ve lost 12 pounds and am on vacation camping and hiking, climbing rocks, and living the life I want. If I can do it, others can too, just start slow and buy very good supportive equipment…whether that’s running shoes, modifying a bike to be more gentle on your bum and hands, or professional support/class. Don’t use fm as the excuse…it is a challenge to manage just like anything else in life. You decide if it will win or not.

June 13, 2013 at 4:04 pm
(36) Abot Bensussen says:

Before I could get good sleep, slow wave, stage 3 & 4 deep, restorative sleep, I was bedridden and on high doses of pain relief. Constant migraines, terrible body stiffness and i.b.s, all the quirks of fibro.

Once I could sleep with Xyrem, twice a night, I began to exercise. I like Pilates because I can do it at my own speed, my teacher knows what my problems are and is a great trainer. Most of my back pains have gone since learning to stretch and align my body better.

Without sleep there was no life for me. Now, I have to fight depression and grief, after losing my oldest son, so being out and with other people is a big help emotionally. I do try to do something every day and when too tired, I rest. Thanks to my good family, when I need to rest I mean I do nothing in the home. It’s a blessing to have support at home.

June 14, 2013 at 3:35 pm
(37) Tica says:

Yeah oook. Not likely. Sorry but I used to exercise in my former (pre-fibro) life and I enjoyed it, felt good (a good tired), kept my weight in check and never had anything other than a little muscle pain. Now? after 3+ years of having these fibro and chronic fatigue symptoms, my body is not letting me exercise. Everytime I do anything more than I can handle in a day – which is not much, I get extremly tired and my joints hurt so bad – why would I keep doing it? So my doctors tell me all about how I should exercise. I have gained 20 lbs don’t you think I would like to?!! I can’t do it. My life has changed and the more I try to live like I did before it makes things worse so stop telling me to do what makes things worse. You don’t know what you’re talking about. These pysical symptoms have actually caused me to feel depressed because of what I have lost. I am really starting to think that maybe it’s better if I just accept my fate and try to live an enjoy what little things I can. I figure others have terrible health problems and they have to deal with it so I will too. I just don’t like to be told that I could be doing something more to help with this situation when I have tried and I’m not going to keep setting up to fail.

June 14, 2013 at 3:42 pm
(38) Kristina S. says:

As I look back over my illness(es), every step downward was preceded by doing activities that went far beyond my capabilities. I was injured at work so I was at the mercy of my claim. I was in so much fear of – losing my job, losing my benefits, etc. Every time they said jump, I said “how high?” I kept pushing and pushing myself beyond all my limits. The more I did, the worse I got. But I kept pushing. When my system finally shut down completely and I could barely get out of bed, both my psychologist and the psychiatrist from my LTD provider said that I had basically disrespected all my health boundaries. By trying to follow their regimented programs and do all that was expected of me, I made my self so sick that I was no longer able to do anything! I will NOT do that again!

June 14, 2013 at 4:01 pm
(39) Tica says:

Oh yeah and @mom4jb says, I would not be so quick to judge people by saying they are “using their FM as an excuse” You don’t know every detail and exactly how other people feel so stop comparing them to you. You can exercise and do all those things? Great. Good for you. Not everybody can do that though. I would never use my fibro as an excuse. I would give anything to go back to my free wheeling days that I had before I got sick. I’m actually embarrased to see people I used to know because I look much older and fatter in just 3 years. I am trying to find some everyday peace so I can get up in the morning and actually want to live another day knowing I might never feel good again. I have tried exercising and other than light house work, it’s just not happening. If you can “live the life you want” then maybe your symptoms are much milder than some others because as you can read on these posts, many say what I’ve said. We had been exercising just fine and then something went wrong. Jeesh. Would you tell someone with the flu that they are “using it as an excuse”?

June 14, 2013 at 4:02 pm
(40) Kara says:

Exactly! I have days when I feel like I could hike the Grand Canyon, and days when I can’t get out of bed. Until there are researchers who are themselves Fibromites, we won’t get the understanding we need from them. We just have to continue to be strong advocates for ourselves and ignore what the researchers are telling us.

June 14, 2013 at 4:05 pm
(41) Diana says:

You’re so right Adrienne, I’ve had fibro since I was 30 & am now 56 & feel I know my body & how to pace myself (otherwise I wouldn’t have made it this far). My energy is so precious that I try to get the highest & best use out of it, meaning my exercise is in the form of my chores – walking the stores shopping, laundry, vacuuming, mopping floors etc. If I just did straight exercise I’d be too wiped out to tackle the things I really need to do for survival. I live alone (except for my cat) so if I can’t do the chores they just wouldn’t get done. I’m 5’6″ tall & only 100 lbs so my lack of formal exercise hasn’t led me to become overweight, we each need to do what works for us based on our unique circumstances & trust the feedback from our bodies.

June 14, 2013 at 4:11 pm
(42) Diane says:

In a world full of “eat these foods”, “take these meds” and “excercise like this” for fibromyalgia, I’ve come to the conclusion that each persons symptoms are as individual as that persons DNA. We are not a bunch of paper cut out dolls. With that in mind I take the meds and supplements that work for me. I do as much or as little excercise as I can handle. I eat the foods that I like and keep a journal of it all. On most nights sleep evades me so I rest whenever I can and smile thru as much as I can.
I wish everyone luck in your quest for what works for you.

June 14, 2013 at 4:42 pm
(43) Lucy says:

Well, I think I have at least a partial answer to why there is a dissconnect. The researcher is a male and most fibro people are female. Once again, they would have us believe that we are just wussy women who cannot stick to a vigorous exercise regimen.

I don’t bother reading this kind of crap anymore,

June 14, 2013 at 4:44 pm
(44) Dianne says:

I have arthritis in almost every joint as well as fibro. I go to physiotherapy once a week for my knees and back. I am told to do at least 10 mins. on a stationary bike and then I have 10 exersices to do after that. They take about 45 mins. to do. I am trying to 15 mins on the bike and most of my exercises are up to 40 reps. That is plenty of exersice for me and there are days when I know even that will be too much so I either cut down on the amount or skip it altogther. But. there are days when I still pay for it and end up not being able to do anything for a day or two. I think everyone is different and has to learn their limits. I am finding it difficult to figure out just how hard I can I go without doing myself in. I still have to pain injections in my back and neck every 2 weeks for my fibro and am on all sorts of other meds but unfortunately nothing seems to help the arthritis.

June 14, 2013 at 4:58 pm
(45) Lynn says:

After reading your response, Adrienne, and the comments left by others, I have to say they all mirror what I’ve found to be true through trial and error.

I’ve had fibro for 19 years and at one point, I couldn’t even stand for more than 5 minutes and had to be pushed in a wheelchair. I’m happy to say that today I’m more active than I have been for 19 years. But that is due to a combination of things: better medical care, better, more focused medications, being more attuned with my body and actually doing what I need to do without guilt.

I found that, when I am able, there are certain exercises that do make me feel better. However, if I have low energy levels, exercise will only exacerbate my pain.

I believe that fibro is so confusing because it’s a very individual disease, manifesting itself in different ways at different times in each one of us.

June 14, 2013 at 6:31 pm
(46) Suella says:

Just trying to get my head around this. People with fibro seem to be able to do quite a bit more than those with CFS but no fibro.

And all activity is exercise of some sort. Some days self-care will be all the exercise we can manage.

Would careful pacing of exercise be possible? Using a pulse monitor and 60-65% of our formulaic maximum pulse according to our age? And stopping well before we think we might overdo it time-wise?

This anaerobic threshold might allow for careful activity. Is the repetitiveness of exercise the problem as well? Multiples of the same exercise may cause pain?

The example of alternating days and types of activity/exercise sounds to be a very safe and sensible way to approach increased activity with care.

June 14, 2013 at 6:53 pm
(47) Katy says:

I believe in the saying do the best you can and this is different for all and different at various times ,also we are all different , I am a farmer and live by myself with two kids , a certain amount of work has to be done each day and I do it as I can with rests everything hurts but I have had this for over 25yrs plus hashimotos CFS& widespread arthritis and erythmia but I will not let this set of illnesses ruin my life,pacing & sheer will get me through .I’ve just learnt to accept that there are things that I cant get done and that small projects may take longer,but being busy takes my mind off chronic pain & achieving small goals is mentally rewarding and gives you a boost, do what you can don’t feel guilty about what you cant.

June 14, 2013 at 7:56 pm
(48) madalyn says:

Listening to my body, and limiting my physical output remains my biggest challenge after 18+ years diagnosed with CFS/Fibro. I still (I’m not proud of this) adapt a ‘plow thru the pain’ attitude to the detriment of quality of life and to the great frustration of my loved ones. NONE of us want to be limited to what we can do, and I believe ALL of us still have a very clear before and after picture of our capabilities.
I often find these research findings to be exemplary of the whole ‘bootstrap’ mentality that our society imposes on anyone with disadvantages of any sort.

June 14, 2013 at 7:57 pm
(49) Shakota says:

Docs want to give you a magic pill or prescription but fibro is very complicated. My case: moderate to severe pain with any repetition of muscle contraction. I’ve tried everything and all I can say is that even a 20 minute walk every day can get me into a pain zone where ice packs, pain pills, etc don’t really help.

Some people don’t have as severe a case of fibro and are able to carry on. But pain, if severe enough, will put you down for the count. And it is smart to learn how to prevent it because why suffer needlessly. I’ve been active and a dancer and it’s really hard to back off but what can you do?

In research, the scientist has a theory and she gathers literature on the subject and designs an experiment. Whoever did this study is pretty dumb IMHO.

June 14, 2013 at 8:03 pm
(50) Vee says:

I’ve had fibro for over 20 yrs, diagnosed 10+. I exercise daily, half a mile to a mile. I also work a full time job,very stressful job at times also. This week I have walked, did laundry, ran errands and today I am crashing. Did too much I suppose:(. Still can’t lose weight, thats another subject! Need to pace myself better. Headed to lay down for awhile

June 14, 2013 at 9:23 pm
(51) Kim-A-Kazi says:

Beautifully Stated!!! I try to explain this time and time again to all of the people who seem to know what is better for me than I do – who read a few articles and fancy themselves experts on my illness.. For a LONG time that was all I heard from my husband “If you walk or exercise you will feel better” so now it has become a private joke. Whenever there is something wrong for instance I have a toothache, my husband jokes “you know if you only walk it would be all gone”. I Know exercise is A MUST!!! However, many of us can not do what “exercise” everyone else is doing. Walk, swim, or do a few lite exercises in the water if possible or even just stretching…there are exercises done from a chair for the elderly & the disabled whatever you are comfortable with. As time goes by hopefully as we continue to strengthen those muscles we will be able to do more and even feel a little bit better. The key is DO Not Over Do It,,, it may take a little time to find out what is perfect for you but until then, Do Less than more and save yourself 48hrs in bed in pain… good luck friends :)

June 14, 2013 at 9:57 pm
(52) Kat says:

I’m so glad to see this in writing. I get so tired of the judgemental looks from people who ask me “do I exercise and when I say no they frown or proceed to lecture me on what an improvement it would make in my life. There are many days I struggle just to get out of bed and make it to the bathroom.
I stopped shopping and cooking because the shopping was so devastating for me, (even using the scooters) that I would be confined to bed for days and end up ordering in food anyway. By the time I recovered enough to cook a lot of the food would have to be thrown away.
I enrolled in a gym program at a local hospital. I assumed the trainers would understand my program and treat me accordingly. Instead I ended up with a trainer who allowed me to use weight far beyond my capacity. I ended up having to drop out and enter therapy.
I was diagnosed with fibro over 20 yrs ago (I also have most of the chronic fatigue symptoms) and by now I know my body. Like Andrienne
says if you push your body beyond your known threshold you crash.

June 14, 2013 at 11:15 pm
(53) Rebecca says:

Yes, people are different. For example, I don’t exercise for a few weeks and then quit because it is painful. There are some days when I am so completely exhausted, I can’t even begin. But, on the days I am able and attempt to exercise, within one to two hours afterwards, the pain comes. It is ABSOLUTELY not the same as a flare up or my daily pain. When I wake up the next morning, the pain is so much worse, it is excruciating. I can barely move. Some of the so called experts say that FMS is not progressive. I am 43 and have had FMS since my 20′s. For the first years, I was able to exercise moderately. However, the fatigue and pain have gotten much worse during the years and my bodies tolerance for exercise is almost non existent. We are all different and for some of us it has very little to do with willpower and giving up. Please don’t assume that you are the same.

June 15, 2013 at 6:04 am
(54) Maria says:

I have CFIDS and not FM, as far as I know, although I am developing arthritis in various joints that may feel like FM (?)
I just have to say that I thought the comments of an earlier contributor about how you can learn to climb mountains in 9 months with these illnesses probably means that she never had FM at all, and was misdiagnosed. Hers are the kind of comments that make the rest of us feel like we are just lazy or causing our illnesses to continue through “lack of willpower.”

I hate “willpower.” I think it may have contributed to making me ill and making the illness worse because I sometimes still push to much.
When I can, I walk or do Qi Gong (a very gentle set of ancient Chinese exercises). My Qi teacher said, “Figure out what 100% or your energy output would be doing this, and then do 70%. That way you will not get hurt or overdo it.”

By the way, in Weight Watchers, cooking a meal or gardening or housework have “activity points.” They are considered types of exercise. Going to a gym and sweating and groaning and doing all sorts of excess body-breaking activity is not the only kind of “exercise.”

June 15, 2013 at 8:42 am
(55) Juliesue says:

I have CFS – orthostatic intolerance type I believe – and I have been exercising pretty regularly for the last 8 months. I started at 45 mins 5 days per week no impact stretching and strengthening. More tired. Last month or so I have reduced to 20 minutes and then last week only exercised one day due to other commitments that required energy. Today I feel better with more energy. So what do I do? The benefits of exercise are wonderful – stronger muscles, ability to walk longer distances more easily – but it exhausts me! I will go back to my regimen next week but once again this shows the dilemma we face. Sigh.

June 15, 2013 at 12:45 pm
(56) Nitalynn says:

The best exercise advice I have ever read for fibro is not to. Well, if you get into a situation where you’re in really good shape with energy to burn and nothing else to do you might start but for most of us the best advise was just to begin increasing your activity level, starting with the things you want to do or need to do and to do it very gently. The simple fact is that most of us do not have the physical ability and energy to be able to lead a normal life. “Exercise” is a man made replacement for the normal chores of living that modern equipment have taken the place of. For doctors to suggest that we “exercise” while we are not able to get the dishes washed, the floors sweep or vacuumed and the shelves dusted is nonsense not only because we are not going to get the benefit of accomplishment with all that is waiting for us but because that is what hangs on our mind that needs doing. After you have exhausted yourself with “exercise” all that is not done is still sitting there glaring you in the face. It just goes to show how little the “experts” really understand what is happening to us in the actual world as well as the molecular one.

June 15, 2013 at 3:39 pm
(57) Audrey says:

I have started doing beginning YOGA which is really a lot of stretching and if I have a swiffer duster in my hand I use the activity to stretch and rotate my joints. I really can’t do anything heavy but do my best to get up and do something. I may just do some light food shopping or clothes shopping. But I stay as active as I can. Sometimes I just grab clothes, buy them and try on at home. Then if they don’t look or fit well take them back. Otherwise I’m ready to drop over if I try them on in the store. That is a lot of work.
After a week of getting in my car and going to luncheons with friends, fellowship with church members in the evenings, doctor visits etc. I was very shaky at church services Sunday evening. Felt like I was going to crumple over like a rag doll. It was all I could do to sit up straight. I need to fold my arms around my torso to keep it upright. Which always makes me look like I am mad but I’m waiting for someone to critique my body language so I can inform them of my condition.
I look at the people in electronic wheelchairs and envy them. But don’t have the gumption to get one. Medicare will only pay for them for so long. Should I get one?

June 15, 2013 at 6:13 pm
(58) Anthony says:

Can someone please tell me if they had tried natural remedies for the pain of FM,. Or idk my mom has been going to the doctors for years and I don’t like she has to take pills. I’m gonna go with her to the doctors soon too damn idk get her off the big pharma pills.. So everyone lives thru an unknown pain everyday?? Was there a rise in FM cases due to GMOs??

June 15, 2013 at 9:11 pm
(59) Bobbi says:

The problem with exercising is it eats up all my spoons. I might be able to walk a mile one day, but I guarantee that I’ll be home in bed the next. Even a slow stroll to the mailbox 3 blocks away and back will leave me so tired I must nap and then I find it hard to cook a healthy meal and end up eating whatever can be microwaved, which is also bad for the fibro. If I could find a class for Tai Chi for the elderly (which I am NOT) that didn’t cost too much I’d take it. My cousin (who also has fibro) does Tai Chi and not only has it given her back some energy and CONTROL of her body, but it has also restored the inch she lost due to deteriorating disks in her back. Win, win, win. But until I find that class I can afford, I work, I hurt, I sleep. It’s hard to have a life when your body requires 9-12 hours a day of sleep!!

June 16, 2013 at 7:27 am
(60) Edana says:

If there is anything I have enough energy left to get riled up about it is exercise.
When I was 55 my body just quit. I had no energy, could get myself to work but after a couple of hours was too sick to be driving a company car as I had begun to faint rather regularly. Within a year, I fainted, hit my head on a concrete wall and ended up in the hospital via ambulance.Through testing I finally had an answer as to why I fainted so often, was put on medication and waited to get better. Get better never happened. I was sent to a Rheumatologist who diagnosed Fibromyalgia and suggested that I apply for Social Security Disability Insurance, as he was sure I would never work again. He eventually referred me to the Rhode Island Hospital of Rehabilitation, and it’s world wide reputation for treating Fibromyalgia. We tried all kinds of meds, nothing worked. Finally at my request I was enrolled in their Physical Therapy program. I did floor and aquatic exercises for two years. I did not get better, I got worse and was finally diagnosed with Exercise Intolerance. Now I was suddenly lazy. I am now dependent upon a power chair, a cane in the house, and no walking on uneven surfaces. . When I get up in the morning, I totter like an old woman. My feet feel as if I am walking on glass, and sometimes I think my back is broken. Fortunately this only last an hour or so after I take pain medication, and walk around for a while. Now that I see doctors in the power chair, they have finally stopped hounding me about exercise. I have no doubt that exercise is good for some patients, for some of us it is poison. Please stop judging what works for you as being good for all Fibro/CFS patients. We were not all cut from the same mold.

June 16, 2013 at 5:46 pm
(61) Wendy says:

I am shaking my head too.

June 16, 2013 at 10:46 pm
(62) kaytee says:

Soon after my diagnosis, on the advice of my primary dr, I started a low-impact exercise program (Curves); I stuck with it for 3 months, going 3 times/week, and doing the recommended circuit, etc. Probably ate a bit less than usual during that time, but also made sure it was a “healthy” diet.

As I expected, the first few times were horrid– fatigue, increased pain, etc. after the class and the next day or so. But, it never got better, really. It was a good thing the place was only about a 5 min drive from home– I might not have been able to make it, if it were much longer. During that 3 months, neither endurance nor strength improved, and certainly neither did pain, fatigue nor sleeping problems. I didn’t even lose any weight.

June 17, 2013 at 2:23 am
(63) Debra An says:

I have never had to deal with such narrow minded childlike doctors in all of my life! When it comes to my Fibromyalgia doctors forget about all of the other illnesses or diagnosis that I have, which include my ankle injuries I sustained on active duty! Due to the ankle injuries I was misdiagnosed on active duty US ARMY and due to that idiot I suffer for the rest of my life as my prognosis is poor for my ankle as I was told they will only get worst. Where is the optimism? But they give me no hope for those injuries and yet with Fibromyalgia, Hoshimoto’s Thyroiditis, CFS, Patella Femoral syndrome, car pool tunnel syndrome, Severe Chronic Pain, Sleep apnea, ADHD and the serious lack of energy, the doctors focus on the fibromyalgia and forget everything else I suffer from. I wish I had the over energy I had previously to the illnesses. I used to be able to run circles around my children, yes I had that much energy. For fun I would run, rock climb, golf, body surf, bogie board, do cartwheels, round offs, etc. All that is gone as these other illnesses over ride my ADHD. I find doctor a little stupid when they tell me to exercise, not paying any attention to the other illnesses/ injuries that I have. I forgot to mention that I was also in over 6 auto accidents where I was rear ended. Soft tissue injuries are so much worst then broken bones, as they linger on for life! What can I say I live in California and no, none of the accident were due to a cell phone. One was a car radio, two were drivers getting distracted by passengers (female passengers), others they just were not paying attention and braked to slow or followed to close! Sometimes I just wish a doctor could feel the chronic fatigue and pain I live with on a daily basis just for one week. Let us see how they exercise with what I deal with on a daily basis! Where are all the good doctors to help?

June 17, 2013 at 2:24 am
(64) Debra An says:

? I have not found them and I am still looking for a good doctor in SO CAL if anyone knows of one please let me know! If a doctor would look at the whole person and not just a part of a piece then I could actually get better. I have seen more help from GOD then these lousy doctors I have had! They all tell me oh you will feel better if you exercise, I explain to them “NO” I have tried that and it just makes me bedridden for a few days if I do that. That is a dumb idea! I have tried to exercise as I used to, it is just impossible. I lack the energy and the pain saps my body of energy, which it is like a viscous cycle! I just want my life back! They see me how I am now and give assumptions to how I have been my whole life! They are clueless and they just keep aggravating me, worst then any child I have ever had to deal with! Sometimes I just would like to ask them, where did you get your medical license a Cracker Jack Box? I don’t say that, but I have been tempted many times! Again, I have to remind them about the other illnesses and they look at me dumbfounded stating that is what they state I should do for Fibromyalgia. I remind them but that is not what they say to do for CFS!

June 17, 2013 at 12:57 pm
(65) barb says:

re: exercise. before i became ill with CFS/Fibromyalgia, i was up at 530, fed 3 horses, hauled two 40 lb water buckets, fed the dogs, went to work, came home and repeated the routine, not to mention mowing 2 acres of grass, cleaning stalls for 3 horses, etc, then played softball two nights a week. then, when i started to get sick, i had to go to bed at 7 pm so i could get up the next day at 530 and do it all over again.
i got to the point that i couldn’t even vacuum the carpets, and there was no help available because even my best friend couldn’t understand why i could no longer do the things i did prior to being called to active duty in the Persian Gulf War.
long story short, i have learned to reduce my stress to the bare minimum. i force myself to at least get up each day, shower and drive to town, just to at least wake up. then if i need to i rest on the couch all day, other than that i have 4-6 “good” hours when i can mow the lawn and do other chores. unfortunately, i had to sell the farm and move to a small community where i have neighbors i can depend on for help, when i need it. i hired a house cleaner. God has been good to me. but reducing my stress lever was KEY. would i like to walk the dog every night? of course. do i do it? no. but the dogs somehow seem to understand more than humans.

June 17, 2013 at 1:28 pm
(66) Sita says:

I have found that exercise helps me feel better. *HOWEVER*, I realize that this varies from person to person. It’s also taken me 5 years of moving more (starting from walks around my condo complex) to get to the point I am at now. It was a LOT of work and required a lot of patience from me to not go overboard.

Also, I “just” hike. I don’t lift weights, I don’t run, I don’t go to gyms. I always use my trekking poles no matter how easy the hike is rated. The trekking poles help immensely with my hypermobile joints. I don’t think I’d be able to hike without them.

I’ve done some very difficult hikes but I also plan those on longer weekends because I know that my recovery time is going way longer than my husband (he has no chronic health problems).

June 18, 2013 at 1:27 pm
(67) Catherine says:

I was part of a study that looked at exercise. They started us off very low and increased our exercise slowly over time. It was mainly yoga-like stretches and some aerobic, for me the treadmill. They did a baseline of what I could do the first day, which for me was 4.5 minutes, then dropped back 25% so I started walking 3 minutes and added a minute a day to 20 minutes. The stretches started at about 5 seconds and increased 5 seconds a day to 60 seconds. By the end of the study we were where I would consider a starting point for “normal” people.

The first 3 weeks, I cussed out the study people every time I worked out. But at the end of 3 weeks I suddenly found that I could do my stretches and walking and not die trying. In fact, I went to the mall and walked from one end to the other before sitting down. I hadn’t been to the mall in years.

Basically, the 6 weeks of the study gave me a 2 year remission of all fibro pain (CFS not so much, unfortunately). I eventually had a major flare and stopped doing my stretches and went back to feeling worse than ever. I try to keep up with the stretches but I don’t seem to have the stamina or will power I did the first time. But I keep trying.

The exercise folks are talking about, and are discussed in the original article, are too strenuous IMO. I’ve found I definitely can’t do anything that might be call vigorous only very gentle. But the stretching does make a world of difference for me even at the reduced levels I practice now.

Perhaps those who have had so much trouble with exercise could try something a lot more gentle and have my experience.

BTW, I almost didn’t get into the study because I was so badly off but at the end of the study they said I was the most improved of all their participants. It may not work for everyone but it certainly helped me.

June 18, 2013 at 6:01 pm
(68) summer says:

nailed it!

June 19, 2013 at 5:50 pm
(69) C says:

*SIGH* *EYE ROLL* My experience with exercise is as you’ve described. I have to pace very carefully and prepare ahead of time for a big day. I have to plan a lighter day / day of rest after a day of being out…if in fact it’s possible at all. Pacing is key for me. I get better and over do it and I end up terrible nauseated and down right ill for months. This past winter was a perfect example of it. Increased activity in summer to beginning of fall and fall came with the flu in August and 4 flues and 4 falls later… I basically had to resign myself to sleep all of January. *SIGH* I wish people would start listening to us and trusting us. I’m not unaware, uneducated, unmotivated, faking or lazy. I’m ill!!!!!!!!! *EYE ROLL*

June 19, 2013 at 6:02 pm
(70) C says:

To be honest, I’ve read a lot of the comments and I cannot do what many of you all do. I’m diagnosed with extensive Chronic Myofasical Pain, Fibromyalgia and Chronic Fatigue Syndrome. I’m lucky if I can get my weekly chores done (house cleaning & errands regular errands). I feel better being productive and moving to some degree every day but I cannot exercise for 1-2 hours. If I can in fact start exercise beyond house cleaning etc, I have to start with 3-5 minutes and when I work up, I can never do more than 8 minutes or I end up resting the whole next day. Maybe my case is more severe but… yeah… frustrating.

June 21, 2013 at 3:57 pm
(71) Suella says:

Activity is a better word for us to consider than “exercise” which to me means repetitive identical movements. If we use a pulse monitor and use the 60& of our maximum heart rate we should be able to safely and carefully improve our range over time. Dr. Klimas’ work has shown this is possible to get a real improvement in symptoms and physical ability over time.

Look at the videos and discussions here to see what I am referring to.
http://cfsknowledgecenter.ning.com/group/theexercisegroup

June 21, 2013 at 4:06 pm
(72) annie says:

I was misdiagnosed with a heart attack a couple years ago – was put through all kinds of tests including a stress test and heart cath. I tried to tell them it wasn’t a heart attack and that I would never pass the stress test because of fibro associated inactivity for so many years. Regardless, they pushed me so hard to stay on the cycle, that I actually developed chest pain and left arm pain and was light headed. The heart doctor immediately diagnosed heart problems and did a heart cath against my wishes. At the end of the cath, he announced in a loud voice, that I had a beautiful heart – the nurse by my bed, said I wish I had a heart as good as yours. So, before leaving the hospital, I asked repeatedly “what was my problem”? After some low mumbling around, one of the docs said well we don’t really know, maybe another manifestation of fibro, but your heart is fine! Beware of so many things that are pushed on us that may do more harm than good – healthy does not always mean active and active does not always mean healthy in my opinion. We know our limits – others don’t. Now, I have a torn meniscus and the surgeon says I have no option but surgery – I have canceled the surgery twice…..still thinking of all the things that might come about from that along with the fibro – infection, blood clots, worsening pain and no relief. Who knows which way to turn with a double whammy of fibro riding around with you all the time?

June 21, 2013 at 4:58 pm
(73) Matthew says:

In 25 years with Fibro, I’ve tried all kinds of medication. In the end, the best treatment for me, is exercise. Yes, there are times when overdoing it creates a flare up and really sets me back. I feel good when I exercise, so I keep going until it’s too much and then pay for it big time later. I have noticed over the years that in pacing myself properly, I can do what “normal” people might consider a lot of exercise. I’ve tried many sports that are fairly high impact (tennis, paddling, mountain biking, running), and those are not very good for me. I have found that I excel at low impact sports (road biking, swimming). Road biking is currently my main activity. After years of pacing and building my endurance, I can do rides over 50 miles in length and can sometimes top 200 miles in a week’s time. But sometimes I push myself too hard in this and it sets me back. It’s a balancing act for sure. I have also experimented with laying off the exercise for a period of time (6 months at one point) and I have never felt so sick in my life.
I definitely want to encourage more people with Fibromyalgia to get more exercise. It’s really hard at first (and sometimes really hard later too), but it’s so worth it. Seriously, take the time to build up the ability. For instance, don’t go from doing no exercise to trying to keep up with me on my bike. It won’t work, and you’ll be in a lot of pain because of it. You have to move into it gradually to build up your endurance and ability. I’ve spent many years building a “base” fitness and endurance level. Even 45 minutes a day is too much if you haven’t already built that base. Start with 10 a day and do it for weeks before moving up to something more.
The exercise HAS to entail getting your heart rate up. There have been recent studies on the effects of laser treatment for Fibromyalgia patients in that the laser increases blood flow to a certain area and helps the pain. I think this is similar to what exercise can do.

June 21, 2013 at 9:15 pm
(74) Nitalynn says:

Another question that needs to be asked is who are these people volunteering for these studies anyway? I can’t see very many people who can barely get out of bed every day going out and volunteering for an exercise study as a treatment for fibro. If the study doesn’t sample an across the board sample of the physical activity states of fibro and CFS patients then all it is a sample of is those individuals in the study, not patients of the conditions in general.

June 21, 2013 at 11:06 pm
(75) Howard says:

Hi Adrienne,
I just had to respond to this one. Exercise! I am sure we would all do it to the best of our abilities if we could, as you so rightly point out most of us would like the activity levels we had before we became ill.
I have had CFS & FM for over 10 years and as you say you learn to read your bodies and take on things when you can.
I currently have a leg/back injury which has stopped me walking, which was one of my ways to stay active & in touch with the world, so it is a major set back for me how has been house bound from CFS for years.
Most health Professional think exercise will help. I know it will probably help too but at what cost? I have learn’t from experience that I know my body the best and slow and easy is the way to go. I am slowly improving but it takes careful management, just like the CFS.
It just comes down to most people have not experienced the symptoms of CFS and will never truly understand this debilitating condition. The truth is, you have to be one, to know one. The only people who understand my condition have been other suffers.
Listen to your own bodies they are your best guides, we each have our own journeys.

June 22, 2013 at 1:51 am
(76) Howard says:

Now after reading all the comments I am even more enthused to contribute and explain my story. Exercise is something we all can relate too.

I have had CFS & FM since 1993. I have not been able to work since then because of this condition. I used to be a Town Planner/ Urban Designer, my old life as so many of you describe. It took over a year to get diagnosed and a further 5 years before being diagnosed with FM, which was done by an Natural Therapist.

After five year with the illness and after exhausting my finances I was able to go onto a Government Disability Pension.

I have tried most therapies and spent up to $100 thousand dollars seeking help from all possible sources.

It is not been until the last 18months that I have had the capacity to concentrate,(because of Brain Fog), enough to do any research into this condition and now with the internet this is easier.

I am also convinced that because of many overlapping symptoms, miss diagnosis occurs or there are subsets of the condition as well as stages. I think this helps explain why some people can do things while others can not.

I am in recovery, although my progress is slow it is forward. There has not been any single event which helped, however, time and good management, (that is self awareness and pacing), have been vital to my success
.
I once read, think of how you were when you first got sick and compare that to how you are now. That will help you understand where you are today.

I have done these exercise programes with success and without, depending upon where I am at in the cycle of my illness.

What I have learn’t, is that it is essential to listen to your body and forgive yourself and enjoy the small success life brings.

We are never the person we once were, so accept that and follow your own path by taking nothing for granted, test it and find what works for you.

We are the best advocates for our own health.

June 22, 2013 at 12:48 pm
(77) deborah says:

One thing I did not see mentioned in the studies or article is the fact that many of us with FMS also have autoimmune diseases such as Lupus, RA, etc. I have both of these and exercise is difficult at best for me to try and do on a regular basis.

These studies are trying to prove that it’s basically all in our heads and we are a bunch of fat, lazy, people. For shame!!!

June 22, 2013 at 5:34 pm
(78) Rain says:

Individual differences , different strokes, and strategies to best handle our fibro.
I agree with the comments that exercise does tire you out and we do have good days and bad days so no matter how we plan or have the best of intentions we must listen to our bodies and go from there.

June 23, 2013 at 3:44 am
(79) Mary Jo says:

Have had FMS (diagnosed) for over 10 years. I try to walk every day one 15-minute mile twice each day. Some days I can’t do that much. I do gentle range of motion/stretching exercises. Within a couple of weeks I found I have more good days than rough ones; more energy; less flares; pain levels are lower. Any study that prescribes moderate/vigorous exercises for FMS is badly designed. Fitness recommendations for healthy people call for MODERATE aerobic exercise for 150 minutes per week (30 minutes per day five days per week – which can be broken into 2-15 minutes or 3-10 minutes periods). It is unrealistic to try to get unsupervised maintained adherence of unfit FMS patients to any prescribed exercise program that even most healthy people do not currently adhere to. Any FMS patient who starts off trying to walk for 45 minutes (when the farthest they have walked is from the recliner to the bathroom) is looking to collapse into a long flare or a heart attack. One must be sensible and ease into any program of self-improvement. Moderate pacing of oneself. Not pushing oneself foolishly. Listening to one’s body for legitimate concerns. MODERATE aerobic excercise for no more than 30 minutes/day and stretching exercises at least once a day are key for improving one’s health. Bed/recliner/couch/bathroom/kitchen walks lead to muscular atrophy. Muscles (the heart is a muscle), tendons, ligaments and bones must be used. If they are not used they become weak. And eventually become useless. AND THAT IS SCIENTIFIC FACT!!! Not found in any flawed study – but basic biological reality. If you don’t use it, you lose it. The musculoskeletal system is designed for use. If you don’t exercise now because you have some pain now, you will hurt a lot more in the future because you don’t exercise now.

June 23, 2013 at 10:12 am
(80) Stellapa says:

Agree with Mary Jo and many of the comments; each individual is different. I have CFIDS & FM ( am totally permanently disabled), never knowing how each day will be. I push as I still haven’t wrapped my mind around the diseases as they are devastating to me having been active and career oriented.
I am surprised eat fruits and vegetables wasn’t thrown in as well as that seems to be the cure all for lack of knowledge. I wonder if the 16% were acurately diagnosed or were the flavor of the month?
To CC who notated other diseases DON’T do that, CFIDS & FM are not the same nor should they be compared, that is insulting.

June 23, 2013 at 3:23 pm
(81) LMG says:

Exercising is essential for anyone to feel better. However, the daily struggle with pain and fatigue, likens exercising to doing so while having a bad case of the flu. How many people without fibromyalgia would go do 45-60 mins of exercise when they have the flu?

June 25, 2013 at 9:51 am
(82) Gena says:

About 2 tears ago, in a time when I actually had enough energy to try exercise, I started slow and gradually was able to build up to 3 miles a day. To accomplish this I had to take a muscle relaxer, a pain pill,, and an anti inflammatory pill. Once the pills kicked in I took said walk whichtook me about an hour and a half. Once I made it back home from the walk i crashed. I was so tired and exhausted that all I could do was lay down for the rest of the day.
So obviously I able to only do the walk. That was my whole day until I ended up with a hurt back and double pnuemonia. Since then now I can barely make it to the mailbox and back. I now have COPD in addition to fibromyalgia,lupus,gout etc. etc.so for me exercise was definitely not the answer.

July 14, 2013 at 10:46 pm
(83) steph says:

You perfectly described my experience with this. I’ve tried to convince myself that I don’t have fm, push myself with “diet and exercise” only to end up unable to function for 2-3 days at a time.

November 19, 2013 at 11:02 am
(84) Liz says:

Dr Ang is rated below the national average for Rheumtologists on more than one website. BIG SURPRISE, right? He’s published so he must be right.

Yes, exercise helps, duh. Someone who’s had fibro for 1-2 years may tolerate it better than someone like me, dx’d 20 years ago. To say that we “think” our pain is worse after exercise implies that we are too stupid to know if too much exercise hurts us.

I wish he and other Drs like him could live in my body for just 1 month. Or better yet a year. They are just a bunch of unsympathetic, one size fits all, know-it-alls.

November 19, 2013 at 11:09 am
(85) Liz says:

Edit: I meant to add I was referring to his patient’s rating above. His peers probably love him.

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