Blog Classic: Feb. 9, 2010
It's basic physiology -- when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with fibromyalgia and chronic fatigue syndrome would feel better if we got "more exercise," there's something to it, right?
Actually, no. In normal, healthy people, yes -- exercise creates energy. Problem is, we're not normal and healthy.
Exercise is a tough subject, whether you have fibromyalgia or chronic fatigue syndrome. However, it's not the same for both groups, so let's look at them separately.
Fibromyalgia & 'More Exercise'
This myth is compounded by numerous studies showing that exercise lowers our pain levels and does in fact give us more energy. Doctors glance at the titles of these studies and tell the next fibromite who walks through the door to go to the gym. What they're missing is that the amount and type of exercise we need is far from what most people would even consider exercise.
If we exert ourselves to the point of exhaustion, we're probably going to trigger a major flare that lands us on the couch for days or even weeks. We all have different fitness levels so the exact amount of exertion we can handle varies greatly, but generally speaking, we should exert moderate effort for just a few minutes on a regular basis. There's ample clinical and anecdotal evidence to support that regular exercise, done with extreme moderation, helps us. That means, for us, an exercise regimen might consist of 2 minutes of gentle yoga per day. If you're in better shape, maybe you can handle a 10-minute walk or 20 minutes of aquatic exercise to start with.
I consider myself in moderately good shape for someone with fibromyalgia -- I can go grocery shopping, clean the kitchen and do a couple loads of laundry in the same day (most of the time, anyway.) I can also get through a 30-minute yoga routine without wiping myself out or having nasty repercussions. I couldn't do that a year ago, though, and if I'd tried, I would have crashed afterward. Two years ago, I would have crashed 10 minutes in; and three years ago, just getting into the first pose would have done me in on bad days. While I'm not the most consistent about exercise, I have worked hard to slowly and steadily increase my activity level.
That slow, steady pace is what we need. If all you can do is 2 minutes, try to be consistent about your 2 minutes. Eventually, you'll be able to handle 4. The key is not pushing yourself too far too fast, and expecting setbacks along the way.
Chronic Fatigue Syndrome & 'More Exercise'
A key symptom of chronic fatigue syndrome is post-exertional malaise. It's a period of intense, often debilitating symptoms that follows any kind of exercise or exertion and lasts for a day or more (usually more.) Research actually shows abnormalities in the blood chemistry of people with chronic fatigue syndrome after they exercise, and those abnormalities could very well provide the long-awaited diagnostic test for this condition. Some preliminary research also shows abnormal heart rhythms during exercise, which could mean that exercise is actually damaging your health.
For years, some chronic fatigue syndrome doctors and researchers have touted a treatment called graded exercise therapy (GET). It's controversial to say the least, and while some studies have shown that it can help some people, the methods used to arrive at that conclusion are frequently called into question. Looking over the available research, it seems to me that GET is only recommended because it's more effective than most treatments that have been studied -- and that's not saying a lot. However, it does help some people, as evidenced by the comment below from Dr. Donnica Moore, a well-respected expert who just signed on to work with the Whittemore Peterson Institute.
So what does all this mean about exercise and chronic fatigue syndrome? It really depends. There's clearly a reduced exercise tolerance, but you're the only one who can determine exactly what your body can tolerate. It all depends on your current fitness level and severity of your illness. We all know that being sedentary increases muscle aches and pains, so at the very least you might want to learn some simple stretches you can do while laying in bed. Because of the evidence suggesting heart abnormalities, you should talk to your doctor about testing your heart to make sure exercise is OK -- here's a link to studies you can show your doctor, and they contain testing information: Cardiac Involvement in Chronic Fatigue Syndrome.
What If You Have Both?
If you're diagnosed with both fibromyalgia and chronic fatigue syndrome, you're in a particularly difficult situation -- the right kind of exercise may relieve some symptoms while exacerbating others. Again, you're the only one who can figure out the right level of exertion for yourself.
The Persistent Myth
The exercise myth is one that's not likely to go away -- it's pretty firmly entrenched in the medical establishment, and a consequence of an uninformed public. What we need to do is know our own bodies, try to educate those who are receptive, and ignore those who aren't. We're not doing any good for anyone by over exerting ourselves and winding up in bed for a week.
Sources:
Below, Kiley asked me to link to research on this that she can show her doctor. Here's what I have, and if anyone else knows of good ones, please post them!
- Clinical Rehabilitation. 2008 May;22(5):426-35. Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial.
- Physiological Behavior. 2007 Dec 5;92(5):963-8. Epub 2007 Jul 25. A real-time assessment of the effect of exercise in chronic fatigue syndrome.
- In Vivo. 2004 Jul-Aug;18(4):417-24. Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome. (More cardiac studies are here: Treatment Center for Chronic Fatigue Syndrome.)
- American Academy of Family Physicians. All rights reserved. Fibromyalgia and Exercise. Accessed: Feb. 2001.
How has the exercise myth impacted you? Are there people in your life who just won't let it go? How do you deal with them? Leave your comments below!
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I have both Fibro and CFS. The exercise does help with the fibro, but if i overdo, I get post exertion malaise and can be exhausted for 2 or more days. I have to balance it by doing small exercise periods throughout my day and week. And I do NOT exercise when I have a busy day scheduled…that will be my exercise or I will never be able to make it through.
I’ve had both CFS and fibromyalgia for about 25 years.
I just wish the medical establishment would stop wasting their time telling us to get more active. I’d really like to see them “exercise” their brains a little more so they can finally find a cure for our severely disabling illness.
Omg…u are soooo hitting the nail onbthe head w that one. Docs need to step up their “medical exercise” and stop over medicating us w the same stuff and then complaining when they make us so drowsy from meds and ask “why do sleep so much? or say you need to be more active.”
I have had fibro since 1991. I have taken every medicine that you can imagine. I have had steroid shots put in my head to stop the pain. I have been through aqua therapy and acupuncture and massage therapy and chiropractic treatments. Along the way I have found wonderful doctors and therapist and some not so good ones. I believe the basic key is finding that great doctor and therapist but even more so, taking charge of one’s own health care. As the years have passed exercise was mentioned and I could not believe the various health care providers would dare even think I could exercise. Too much pain every day. I could not even clean my house. Who in the world would ever suggest exercising? But I wanted to lose weight. I tried Curves starting 1 day a week. I hurt but I worked through it. Surprisingly I began to feel better. Now I work out at a gym and attend classes my chiropractor teaches. I still have bad days, sometimes bad weeks, but now I have more good days than bad. I have learned that there will always be pain but I have taken control of me. I know the pain will subside. The pain does not control me any longer and that is the greatest feeling of all.
THANK YOU! This is a sore subject for all FMS and CFS patients and it makes it that much more difficult to work with the medical community to find solutions to reduce pain, flairs, and overall day-by-day management with these conditions.
Our bodies react entirely differently to movement than what a normal person experiences. I used to be able to do medium level Pilates (and I am out of shape) and would be sore but able to push through. Now with Fibro? FORGET ABOUT IT. The intense pain and aching I feel (for days!) from doing even minimal movement is astounding! My body is no longer the same it used to be, so why can’t doctors just recognize how these syndromes impact our physiology and work with us to be as healthy as we can *manage* to be in this condition?!
It’s their attitude that perpetuates the stigma that we’re just “lazy over-sensitive hypochondriacs” who would be just fine if we “moved” more. I’d like to see them survive a day with the pain that many victims struggle through daily.
Also, I would love for the writer to post links to the research that supports this article so that we can bring this evidence in to doctors when we meet with them. It’s so frustrating to go to doctor after doctor for help and have no one stand up for the cause.
Thank you for your article, finally someone has printed what I have said for years about my own condition, and while trying to help clients who have this as well (I am a mental health therapist). I know that if I exercise, I won’t be able to keep up with a 40+ hour week. That is my exercise, and I am grateful to be functioning at all. So leave me alone with the go out and do aerobic exercise stuff, because you aren’t the one supporting my family!
Thanks so much for this. I used to walk/run 4 miles a day, lift weights, swim laps and do yoga. And that was just my morning routine! AF (after fibro), I’m lucky if I can make it through the grocery store without having to rest the remainder of the day. I dream about the day I may be able to return to work, even part-time.
I’ve gained a lot of weight since being on meds for Fibro, and since being so sedentary. That makes it even more humiliating when someone says I “just” need to exercise more. Would a person who used to be Type A Supermom Multi-tasking hiking enthusiast *choose* to become “lazy”, sedentary, hypochondria cal, and unfit? Why don’t people realize that makes no sense?
Now that I’ve vented
I do want to share that in the 3-4 yrs since my dx, I’ve gone from barely being able to get out of bed and unable to open the door to the physical therapy center, to being able to “do stuff” (laundry, shopping, nothing exciting) for an hour or two at a time, and if I rest, I can sometimes take the dog for a walk of a 1/2 mi. Your description of adding 2 mins of activity a day is spot-on, and is just what my physical therapist drilled into me: “Do for two minutes, rest two minutes.” Not that any of us are able to live that way, but it helps to give us perspective.
Now for the embarrassing: Does anyone else experience post-sexual malaise? lol, I’d like to hear the “It’s all in your head”-type doctors blame that one on “laziness”! I’m sure adding “2 minutes” of sex a day might get an enthusiastic vote with my guy, though! I just try to remember that even though my whole body hurts in new ways for days afterwards, at least it was because of something fun (instead of grocery shopping). It still sucks, though, and I feel for those who are not able to even enjoy the most basic pleasures at all.
GET has worked for both my husband & my son who have mild to moderate & severe CFS respectively. The KEY is WHEN to exercise & how to define exercise. When they are in a “crash”, we minimize ALL activity. When we see that the corner has been turned, they literally start with 1 minute on the treadmill. My son has a relapsing/remitting pattern of CFS where he’s ok for a few months of the year (usually late spring though Oct. when the big crash occurs). During the summer, he can actually get to a gym, run a mile & do supervised weight training. But then he has to rest for 2 days. After being virtually house-bound for the past 2.5 months, my son was able to walk across the street & back today. We call that exercise.
donnica i was wondering why you do not mention’get’ working for yourself with the illness…anyone with a history of the illness knows there are times when we can exercise but to agree at all with the get/cbt phyco-babblers plays right into the hands of these phycopaths… i myself have had the illness since june 1990 and i am a former boxer and because this illness waxes and wanes i myself know when not to exercise…i have had periods of going back into the gym and train hard for months at a time only to severely crash and pay the price for it…there are now only a few things that helped me over the years and they are steroids, water and celtic sea salt daily…the rest of medicines are pure useless garbage…i think the big mistake now is we are all playing into the phyco-babble camps and showing them there is nothing wrong with us…in 2013 they will attempt to change the w.h.o. code on the illness to phyco-somatic and this get/cbt is all part of their plot…if this happens we are all left with a life of suffering…please do not play into these idiots because that is all part of their agenda…sincerely, aidan walsh southampton, u.k. http://www.watercure.com http://www.watercure2.org
Having had fibromyalgia for the last 10 yrs, then being dx with rheumatoid arthritis in mostly hands, knees, and just dx with osteoarthritis in cervical (stenosis) & lumbar spine, I pretty much hurt, ache & tingle all over. And a lot of times fatigue just causes me to crash. Am seeing a Rheum. & Internist & Psychopharm. MD for med. mgmt, etc. but agree that one day of high activity can put me in bed for mostly the following week. But I have to do certain things in spite of it. I have lost friends over this who think it is all in my mind & I am lazy & I should exercise & I am antisocial & I want attention & who don’t want to understand any of it. All they do is give me their cures & then it’s something new to blame me for because I’m not doing it. I try to be “nice” & tell them my treatments are in 3 doctors’ hands, but they interpret this as sarcasism & never call back. Thank God my hubby is more patient & understanding than my so-called “former” friends. Thanks for the venting source.
i couldn’t exercise untill i started sleep well at night. xyrem has allowed me to do that for these past 3.5 years. now i can do yoga, twice a week, pilates, twice a week, and some weight training. i go to a senior’s aerobic class when i can. i still don’t do everything others do, have to sit down and take a break sometimes, but i am feeling much better.
before i started exercising i did physical therapy so that i wouldn’t injure myself. i feel much better after socializing with the other seniors at the center. it’s good for depression too.
Exercise for me before the Fibromyalgia was running/jogging/walking and going to the gym several times a week working out with weights and floor exercises. I never considered myself a huge fitness buff by any means but was trying to stay active. I’ve recently started doing aqua physical exercises in 85-90 degree pool and it has helped me tremendously. At first I would come home beat and have to take a nap. Now I have adjusted and go M,W,F first thing in the morning to stimulate my body to circulate bloodflow in a gentle manner. I am usually there 45 min to an hour. I do gentle movements and then bicycle ride for about 20 minutes. I have to say, I’m rather tired when I leave but know I’m working towards gaining stamina. If I am too tired to tackle a project, I stick to the basics and keep things simple on that day. I haven’t exactly found the balance – isn’t THAT the truth for all of us? I do the best I can.
When I had to leave my job because of illness, I continued to try to ride my stationary bike every day, believing that exercise would help me get better. After two years of almost daily bike rides, I realized that I had not progressed at all in how long or how strenously I could ride. My leg muscles would quiver all day after my morning ride. At that point, I stopped “exercising.” I truly believe that I would have gotten better sooner if I had not pushed myself to do many of the things I thought were helpful. I also had a craving for salt and realized many years later that I could use sea salt to help my orthostatic intolerance problems. I have learned to listen to my body and urge others to do so despite what “other voices” say. I have returned to functionality after 10 years of struggle with CFIDS. I rested all day every day after I decided to stop all exercise and work except for fixing my daughter two simple meals a day and taking her to and from school.
It took a year or two after diagnosis with Fibro to start mild excericse, helped by a diagnosis of sleep apnea and use of CPAP, which means I now actually get some sleep.
I started with slow walks of 15 to 30 minutes and added warm water workouts for an hour two times a week. I’ve now added an hour or two of Tai Chi and that has helped immensely.
The challenge, as a certified Type A, is that I always feel I should be doing more, doing something to help myself get better.
My bottom line is that I know there is no medical cure and the only way I will ever feel better is to continue my exercises and try to improve my fitness. The slow rate frustrates me but at least I know I’m fighting back and not allowing Fibro to control me completely. I always feel better after Tai Chi, even if I barely crawl into the class at the beginning.
If I don’t exercise in some way for a period of days, I feel the pain and tightness increasing and that’s a sign to get moving, as slow and gentle as it might be.
For me, easing the pain of Fibromyalgia was the right exercise. A physical therapist taught me how to stretch and strengthen the muscles in my hip and thigh areas, where the pain was. For me, walking, using the machines in my health club, water walking, did not ease the pain, but the right stretching and strengthening did. I still have to take gabapentin to get into the deep levels of sleep, but I don’t take anything for muscle pain anymore.
I have “postponed” seeing my Pain & Rehabilitation physician as he advocated increased exercise at a pace I’m uncomfortable with. I do ‘use’ him as prodding voice in my head to continue exercising…but at my pace. NOTE: I used the search terms fibromyalgia and exercise in the PubMed database (467 hits), this one is rather technical but from the abstract it looks interesting.
Exercise in fibromyalgia and related inflammatory disorders: known effects and unknown chances.
Author: Ortega E; García JJ; Bote ME, and others Source: Exercise immunology review (Exerc Immunol Rev) 2009; 15: 42-65
Hot button is RIGHT! i used to think i was going insane, crashing every single time i tried to exercise, no matter how little i did. And dr still recommends it. (I call this the “Healthy Paradigm” vs our paradigm, cuz we are no longer operating under the healthy one!)
The one thing i found that works for me is going into the mountains and staying there. I’ve done this twice, and it’s ASTONISHING how much more i can do, including long daily walks, vacuuming daily, and working out twice a day (slowly building up). I can do it ALL there. I try to go just before fall/winter, cuz i ALWAYS have a harder time in winter, and this gives me a bit of a boost before “winter crash” takes over!
PS: thank you for this debunking!! We need this!
I deeply appreciate your comments about exercise. Now how about exercise and age? or just age? I didn’t see many people comment about their ages. Exercise was much easier when I was 30 than at 60.
Thanks.
I have had cfs & FIBRO FOR 20 YRS EXERCISE ALWAYS DEPENDS ON THE DAY USUALLY WORSE IN THE WINTER.
A couple of things…..one is that if people would start to say “activity” or something like it instead of exercise, there would not be this issue (or at least there would be less misunderstanding)…as it stands when most Drs and others in the general public hear exercise, they think somethign quite different from doing one or two minutes of walking or counting grocery shopping as exercise.
another thing is that I have found you can’t win either way…..before getting sick I was running full 26.2 mile marathons, swimming, biking, rollerblading, and just generally being very,very active. Not being able to run kills me more than just about everything else to do with this illness (& believe me, I am very sick, so there are a lot of other issues I deal with, like many reading this….just saying that to show that this has nothing to do with not wanting to exercise)
….anyway, when I got sick I tried to keep exercising, and thoguh my endurance continued to drop, I still managed to do quite a bit of exercise for quite awhile (until it wound up making me substantially worse & my body just refused to do anymore)
Still, becasue I had been exercising, I actually had people tell me that I must not be that sick if I could still exercise! (It was pretty much ALL I was doing at that point, and I was hanging onto it bc I loved it and bc I believed the Dr who said it was good to keep exercising.)
Now, of course, it’s the opposite. People tell me I am not doing enough, and they assume I am sick bc of that & would get better if I would only do more!
Like I said, I cannot win. Exercise, and I must not be sick. Fail to exercise, and it is my fault I am still sick.
Dr Moore,
If you are still reading this site, I want to thank you for all that you do for CFS patients. You are truly one of my heroes! I am so happy that you are now the spokesperson for WPI, and I saw the Good Morning America segment you did several months ago. It was one of the best media representations I have seen.
If more Drs were like you, we might actually get some good care (that is not a dis on my own Dr – I have finally found one who at least understands that this is not psychological and he is a caring person, but I can’t really afford him and so far have continued to get worse while seeing him…..I have certainly encountered many that are of the Reeves school, thoguh).
Adrienne,
Thank you, too! I appreciate your work on here, esp knowing that you do so while sick yourself. : )
I feel vindicated when I read this article and all of the comments. I thought no one knew how hard I tried to do anything with exertion and how it wiped me out, that is until I read the comments. It seems so easy for someone else to say just do this and just do that. What they don’t know is how exhausting and damaging their recommendations can be. I used to be super mom, super career woman and exercise nut. Now I must plan every single activity along with its aftermath. I used to be depressed, but now I accept my illnesses and just do the best that I can. Thanks to everyone.
Excellent article. I am going to share it with some people in my medical community.
Thank you for being so empathic and writing such insightful, helpful articles.
And God bless us, every one!
i have the opposite problem!! i do mild to moderate exercise when (and if !) i can i also swim and do water aerobics and believe me it all helps my CFS symptoms in that i dont feel any worse!! BUT and it a big but i know i would feel worse if i was fat and unfit!! now to the problem…. every healthcare professional i have seen other than my family dr have told me to stop!! i must rest i must lie in my bed i must not push etc etc funny how they never tell me not to vaccuum or not to iron etc(that can all be paced lol) just stop my activities which are both social and morale boosting and which I ENJOY!! i personally refuse to be defined by my CFS i only have one life and i am going to live it!! …………. when i am awake enough obviously!
I’ve had CFS and Fibro for 27 years. I was doing ‘better’ relatively speaking for about 7 years. The Fall of 09 I took the H1N1 flu vaccine and within 24 hours was very ill for 2 2/1 months (bronchitis then a rib cage infection–terrible pain). The CFS/Fibro flared like crazy and I have been back at the level of when I first contracted it. Now my doc recs I don’t take the flu shot anymore. I hate to think what would happen if I get the flu, but I won’t take it again. …You are right about people, they do not understand and they judge you as being a lazy, mental, hypochondriac. Prior to this, I was an art teacher and very athletic. Now my doc says I’m in the ‘old and convalescent stages’ of CFS. Hey!!! I’m not old, I’m upper middle aged! My husband says he read on the internet news that some study was just published swearing that exercise is the answer for CFS. Now, even he is probably going to start judging me. I am emailing this to our email for him to read, hopefully, he will.
I left a comment and it didn’t post! Ugh! What a waste of my extremely limited energy. I am doing this to see if this one posts.
I have both, I totally agree with this article, and was excited to just see it and read it, cuz if one more dr. tells me i need to excerize, I would appreciate the fact that they could get me out of bed first. Thankyou for posting.
I am so tired of people telling me … IF YOU WOULD JUST EXERCISE! And no one “gets it” unless they have fibro themselves. I have tried yoga poses, walking, aquatic therapy, etc & it does not help. I end up feeling worse. I’ve resorted to a few stretches a day because anything else wipes me out. I don’t understand how they think its the magical cure especially when there are people who cannot even do one load of dishes or laundry without being done in for rest of the day. It is so frustrating! I just tell the doctors… ok… blah blah blah & they just don’t understand. I’m supposed to go back to aquatic therapy now but no one listens when I tell them what it did to me the last time….
First, I need to recognize how fortunate I am to have my primary Fibro Doc able to completely understand the relationship between exercise, pain and fatigue. In the three years I have been seeing him I have accomplished a tremendous amount and he has never pushed me to do anything that would cause too much of a negative state; if anything he would slow me down because I was so impatient to get my life back.
I do exercise now – almost every day – and see a tremendous benefit. But the type of exercise is very important – I can walk at a decent pace in the park and can handle about an hour. I can do gentle yoga – nothing fast paced or with heat. I can stretch and I can lift light weights while I watch TV. Like with most of you, there was a time when I could barely get out of bed and it tooks years to get to this level. I have gained a lot of weight (60 lbs) since my diagnosis and have been able to lose about 20 in the past year.
What is the most important for any of us is to listen to our bodies. I find that walking improves my pain dramatically – it loosens me up and the sunlight feels great (also good for my vitamin D deficiency). But on days when I wake up too stiff or too foggy I don’t do it – settling for some gentle stretching if that is possible. part of managing these conditions is doing only what your body is telling you it can take – and taking steps to be good to yourself. No one who doesn’t have this can truly understand but perhaps you can find one doctor that gets it and build from there.
Thanks for the article – it is good reading for all of us.
getting daily getting errands done and doing daily tasks IS exercise we need to replace the word ‘exercise’ with the words ROUTINES to MAINTAIN FLEXIBILITY AND RANGE OF MOVEMENT’. ‘exercise’ as we know it is in the context of the fit and healthy. if i do twenty steps beyond my quota on that day, i am lucky if i’m recovered in a day and a half. in fact in the early days it was my continued functioning as though trying to regain normality – doing things that health people do – as advised by ‘doctors’! – that really set me backwards and even put me in WORSE health than ever before.
do NOT try recover as you would when you were well. training doesn’t improve or increase muscle tone.
you’ll notice that we gauge our wellness and recovery by ‘i can do this this and this many sit ups and minutes walking and look how strong i am’ – this is the attitude that puts us behind in recovery because it’s as though increased strength after a training regime is what we should do as an indicator of recovery, which is not quite the point…
the point of post-viral exhaustion and fibromyalgic pain is to decide what’s important to be done and what’s not and what’s necessary and what’s important in life and taking a close look at what we’ve been doing to get us this ill, and what and who we really are; NO LONGER ‘i achieved this and i’m getting back to what i used to do (bad idea!)’
it’s about DOING THINGS DIFFERENTLY
LOADS OF REST
DOING THINGS WE NEED TO AND WANT TO DO
NOT DOING THINGS THAT ARE UNNECESSARY
I have both Fibro and CFS. I took the “dr’s” advice to exercise but start slowly. I tried a beginners yoga dvd for 15 minutes and ended up in bed for 3 days.
I am happy for those who are able to do more but you seem to forget that we are each different trying to cope with these disease or syndromes.
The medical community needs to focus on the issue at hand instead of always saying get exercise. I agree they need to change their wording to activity. Just getting out of bed for me is “exercise”, getting dressed can be an exercise, walking to the mailbox can be exercise. Stop assuming things about something you obviously know nothing about.
Thanks!
I have strong feelings on this subject because before I became sick I could walk 5 miles a day, do weight training and aerobics. I now have osteoarthritis in both knees and back as well as recent surgery for plantar fasciitis. I do work full time and my spine burns from my neck down to my lumber spine, I have sciatica and my tailbone is so hard to sit on. I went to see my ortho at the advice of my PCP since my ortho is the one who gives me steroid shots in my knees (or did), I can’t take anti-inflammatories due to kidney issues. My ortho said you need to exercise, you need to strengthen your muscles. I told him I have lost 77 pounds in the last 2 years, I was doing aquatic exercise but I no longer have a vehicle so I have no way to get there and no money. He told me that was just an excuse, that there was a gym near his house that charged $10 a month for membership and that I should go and ride a bike for an hour a day and do strength training. I told him I have no car and that I get up at 4:30 am to get to work on time and by the time I waited for the bus to get to the closest gym, worked out and waited for two buses home I wouldn’t be home until 930 pm he said most people who wanted to get better would perservere. I told him that I was doing the best I could, that two tylenol and 50 mg of tramadol 3xday was not helping te pain and he said oh, well with you saying that it seems to me that you just want narcotics, you are going to be on the front page of the newspaper being busted with these pill mills on of these days. Needless to say, I left in tears, still in pain, and cancelled my appt for my steroid shots in my knees which hurt horribly now. I wish some dr’s could suffer just part time with the pain.
Thank you soooooooo much for this article. I’ve had CFS/FMS since 1996. Exercise? Surely you jest. I have to make sure I don’t even go up and down the stairs too many times per day. I wanted so badly to be able to do yoga, but even the beginners level did me in. Gentle stretching is it, and I just started learning some introductory Qigong movements. So far so good. By the way, I just learned that stretching (and even massage) can actually irritate the painful trigger points in some of us, thus trigger point therapy is recommended instead. I’m now looking for a recommended practitioner in my area.
Ah Adrienne, I used to say I could cope with the pain but the exhaustion was killing me. Now I realize how much the pain exhausts me. LOL
Thank you for addressing this topic. I too have been on the receiving end of a world of advice. I used to be reasonably fit and very type A busy. I finally became so ill, I wouldn’t go downstairs to feed myself. My spouse had to leave a sandwich by the bed.
Then one summer, I was by the sea and I started walking with my trekking poles 5 minutes up the beach and then back. I returned home exhausted with PEM. When I recovered, I tried again. I eventually built up to 15 minutes up the beach and back by the end of the summer. And I lost 20 pounds.
I tried to maintain this over the winter but I couldn’t. I hired a fitness coach to help me and she and I began to chart my ups and downs. We even made a routine for when I can’t get out of bed. In winter, my condition deteriorates with increased PEM and decreased stamina. There is no way around it but I do manage to keep the amount of deterioration limited with my exercises and walking.
By the way, there is a nice wiki on understanding someone in chronic pain here. http://www.wikihow.com/Understand-Someone-With-Chronic-Pain
Thanks for all you do!
Thank you for this great article – I am going to send it to the less supportive people in my circle!
I have had FMS for at least 15 years, only officially diagnosed for 8 years. The first years were the worst: I could barely make it through a 20 hr work week. Now, after years of weekly acupuncture I can work a 40 hr/wk job, and still have some energy left over to cook and clean. I do still need to take extra care and not overdo it when I’m feeling particularly good – otherwise I flare up and lose a couple of days in recovery. My exercise consists of walking, as far as I can, as often as I can, and trying not to feel guilty when I can’t!
Chronic fatigue may be reversed with exercise
Research, published in the medical journal, Lancet, concluded that behaviour and exercise therapies seemed to moderately reduce fatigue and improve activity levels, while pacing and medical care wasn’t much help.
The findings also suggests the crippling condition can sometimes be reversed.
Still, the treatments only helped about 60 per cent of patients and researchers were unsure how long the results lasted.
“Even with the best therapies we have, four out of 10 people don’t improve,” said Peter White, a professor of psychological medicine at the Queen Mary University of London, who led the study.
“This is a genuinely disabling condition and we need to do more to determine how to enhance current therapies.”
to answer anything with regards to the phyco-babblers get/cbt b.s. is complete foolishness…this is exactly want they want to hear that we are able to exercise…this is all part of their agenda to change the w.h.o. code to this illness in 2013 to a phyco-somatic illness…as far as they are concerned if we can tolerate any form of exercise proves their useless theories that cfs/fibro are not serious illnesses…be wise everyone and do not play into these neurotic lunatics…anyone with any common sense who knows this illness that it waxws and wanes and this get/cbt is not science but a huge fraud and complete quackery…stop stressing yourselves to these clowns because mark my words that there are some very serious physical findings now in the process of completion and publication…there are a lot of things i do know now but all i can say is it will shut the likes of wessely and his retarded followers up for good and is the avenue to major criminal and liable court proceedings… have patience everyone because cfs is a physical serious illness…in the meantime all of you can learn from these sites and they will help you function a whole lot better… http://www.watercure.com http://www.watercure2.org god bless all of you with the illness and may all those phycology clowns burn a slow death in hell…sincerely, aidan walsh southampton, u.k.
Yes, we DO all need to exercise.
However, exercise will be defined differently for each person (and how each day/hour is going). Everybody’s “fine line” between beneficial activity and overdoing it is different. For some, it’s getting out of bed for the day. For others it’s running 5km. Or a bit of gentle yoga. Or getting through self-care. Or taking the stairs. Whatever. We need to figure out the activities that will help us the most, at what intensity. We need to be proud of ourselves when we do exercise, whatever “exercise” looks like to each unique situation.
Baby steps!
Keep on going.
i used to find it exruciating and soul destroying to try to exercise. pacing didn’t work for me. but when i received many letters from other ‘fibros’ encouraging excercise and the words ‘don’t give up’, i eventualy recovered
I have had CFS and fibromyalgia for the past 12 years but officially diagnosed only a couple of years ago. Like all the people who have commented I used to be very active; working full time, volunteering at my child’s school, earning a master’s degree while working, and doing my own housework etc. My husband is very active and we used to take backpacking trips for days, built our own cabin in the mountains, and generally being hyper-active on a regular basis. I was shocked to find that one day I could no longer keep up. I had been going to aerobics classes and working out at the gym, taking ballroom dancing on the other nights free for years before getting CFS…that came first and then I started to get all the aches and pains, herniated dics, deteriorating cartilege, tendons, and ligaments. While in graduate school I used to wake up at 2am in order to do the reading and writing of papers because I worked days. So now I have insomnia and unrestorative sleep (Alpha wave intrusions and can’t stay asleep for long).
Now if I go for a long walk, let’s say 5 miles, I CANNOT get off the couch for the next couple of days. I gave up on so-called health care professionals as I haven’t found one who understood the illness or the discomfort. I’ve taken my health issues into my own hands, reading as much as possible….the bottom line is to reduce stress as much as possible and too much physical exertion,whatever that may mean for each individual, is overly stressful for CFS and fibromyalgia sufferers. None of us have been “lazy”, if anything we’ve been overachievers all our lives.
Thanks for the chance to add my story. I’m grateful for your articles and the work you do Adrienne.
‘the proof is in the pudding’ cfs in the end ‘will’ turn out to be an undiagnosed medical condition that was missed completely in patients… also if any of you ever smoked and quit or never smoked, cigarettes nicotene helps to constrict your blood vessels avoiding or helping recover faster from syncope attacks…many, many moons ago before they found any meds for syncope they used to advise patients who presented in emergencies to go outside and smoke a cigarette which would relieve their symptoms and constrict their blood vessels increasing their blood volumes and blood pressure… also as mentioned before… ‘hystamine’ drugs are hoaxes and complete scams and are frauds and you can learn more on these sites below which has 20 years of serious published research by dr. b. ‘a real doctor’ not a hoax or a charlatan…be well all of you and may god bless you and may he walk beside you in these troubled times… http://www.watercure.com http://www.watercure2.org
I think the reason why some doctors truly believe that excercise will help CFS and FM is because excercise helps manufacture new mitochondria. I thiink they think that if we just make “new” mitochondria, that will help. But if CFS and FM are a disease of mitochondrial dysfunction, then wouldn’t the new mitochondria be affected as well?
I used to be very athletic, ran 4 miles a day, did aerobics, then walked my dog a few miles.
I have both FMS & CFIDS. Stretching is good for me, if I wake up with severe back pain. Regular exercise for me has to be on a sitting elliptical or bike. I can gradually move on to a treadmill for walking, but not on an incline and it has to be a soft belt. The harder ones make my knees hurt and so does walking on hard ground. There is a standing elliptical that I can use, but I have to build up to it and only for a few minutes. If I exercise, I can’t do much of anything else, like housework, except maybe a load or two of wash. Exercise does not alleviate the pain, nor does it give me more energy. In fact, I come home more tired. However, strangely enough, overall, an exercise routine does, in fact, make me feel better. I guess it’s more in the head and just an overall inner good feeling. And, if I maintain an exercise regiment, I look forward to it, like an addiction. But, if, for any reason, I have to stop for a week or two, it will take me forever, to get back on a schedule again. Often, life just gets in the way. I haven’t exercised in 8 months!
Hello, I was diagnosed with fibro 10 years ago and finally have found some relief with water aerobics 3 mornings a week at a fitness center in our town. It is actually for seniors, but I fit right in because of the fibro. I am 57 so I’m not too far off anyway! It is a small therapy pool that’s 95* and is WONDERFUL on my muscles. It has helped with a lot of my pain including sciatica. Even without the workout, just the warm water soothes my muscles and helps my mood to get me through the rest of the day, especially in the winter months.
I have had fibro since like 22 . I could not hardly walk…I burned so bad as a hygienist I would almost cry. I have tested positive to high titers of Epstein Barr..never had mono, cytomegaly and the other virus. I started below zero. if I did one sit-up and walked the length of my home after work, then so be it. It took one year to lift a 10 lb weight and do 6 reps of curls and ride my air dynne 15 minutes. I took Prozac and .25 mgs of xanax. Exercise for me helped a lot. I am stronger, but i will say my house is not clean, the clothes are not done and some nights, I am too tired to even read. I do know that sleep is so important. I learned it a long time ago and I stilll feel that way. I have not been diagnosed with CFS, but i think I have the Chronic myofascial pain syndrome. I do have to pace myself. I hope this helps someone, because I really think to be sedentary …to give in and I was not diagnosed for 3-4 years…my pain was very acute …I done only what i had to to work and nothing hardly at home. everyone thought I was lazy. I can endure and do things because I do exercise…cardio and weights. Mia Hamm , I read the next player behind her when Mia was popular had Fibro. I need to stress that it took a long time to build up…slow , but true.
UG!!! Yeah, the looks you get when you’ve managed to fight through the pain of vacuuming the whole house in one session! Or, the side-ways glace and rolling eyes when after 30 minutes of gardening, you have to sit down, all sweaty and exhausted!
And my own disapointment after a week of eating wisely and chasing after my grandaughter, convinced that I’ve lost a pound or 2, step on the scales to discover I’ve GAINED 2 lbs!!!!! Arrgh!
Thank you again for this debunk… I wish everyone could read it and understand it.. including my family and friends. I was reading an interesting article today on ME which most of you will find interesting. Its a good thing we have each other when we need validating occasionally… as they say, its is in our heads.. its just that its in our limbs, muscles, organs, nerves, chemicals and everything else that is the problem!!
interesting reading!!
http://www.afme.org.uk/res/img/resources/InterAction%2075%20v5%2011-13.pdf
When it comes to what treatments I should focus on I’m confused. I’ll read about treatments in written material and yet the people I work with don’t offer or incorporate them. The pain clinic seems to have a set program for everyone but work with your case individually. It seems, according to what I read, some parts of their program are out dated or need to be revamped. I have been assertive concerning this like addictive meds but when it comes to other treatments I’m just not sure. I have multiple diagnosis and it seems to make things more complicated according to books and the way I respond to certain things. What makes things even more complicated is I’m never really sure what information to believe. I’m sharing this because I think physio and exercise is one thing I should focus on but I’m not sure how to pick what exercise treatments I should focus on because of all the above. I’m not sure how to go about exercise and physio and what I should watch for as far as it working or not working. I have been doing minimal stretching exercises and have been left with pain and haven’t noticed an improvement. As well, I just finished a cardiac test and they said I shouldn’t exercise more than two minutes. I know I need to go to my doctors and ask specific questions and be more assertive but I really don’t know what stances I should take in regards to this. In my personal life, yes, people have made comments and given ill advice and the like. I have been assertive in my community quite a bit striving for more awareness in my small community not just among the average joe but also health professions. There are some doctors here who don’t even believe in chronic fatigue still thinking it’s a psychological illness and they therefore do not know how to treat it. So I deal with doctors in Edmonton, AB. Considering what we as patients are dealing with it’s hard to even know how to approach a simple issue such as exercise.?.?.
I guess I’m lucky that I haven’t had doctors push me as so many here seem to have been. I think my doctors do see that I really try and I guess they think I’m doing okay that way so that I don’t need to be pushed more.
I had a gym membership before getting fibro and was even dabbling in tennis (I wasn’t that good) just 2-3 months before it (FM) hit, so at least I was used to exercising.
Of course it fluctuates as to what I’m able to do, and certainly not what I used to be able to do. I can feel it when I need to exercise because my fibromyalgia begins act up – I get more tingling and that’s my signal.
Now I’m in a bit of a quandary because I’m recuperating from a cervical diskectomy/fusion and I’m having increased fatigue (please let it not be chronic fatigue!!!) and also left over symptoms from the stenosis (problems with my legs, arms, tingling in the face, etc.) and I’ve been reticent to lower my Tramadol dose because I haven’t been able to exercise as much as usual for the fibromyalgia. I was on the Tramadol for the neck, not FM. So I’m being very slow at lowering my Tramadol dose. If I could exercise more I don’t think it would be a problem.
I am a traveling homeless 20 year old female. I have been in pain for as long as I can remember. I have never been able to run, I can hardly walk up the stairs and my legs shake if I try to walk back down them. I have scoliosis, one of my hips is not connected to my spine and the other was broken a few years back I get 3 to 5 migraines a week and I desperately struggle with depression. I have spent the last two years solid walking and hitchhiking across the states with a pack that weighs anywhere from 40 to 80 lbs. I weigh about 110lbs I have shed so many tears over the pain I go thru daily. I am not able to get a dr, go to a hospital or even get inside due to not having ID. I have been trying to manage my pain for as long as i remember. I hardly sleep and when I do it is wrapped up in a ball on the cement behind a dumpster in some part of the states.
The day before yesterday I ran my first mile ever, barefoot and in my underware =) and it was the most incredibly invigorating liberating thing I have done in a long time. After I ran I danced. I felt so alive. Today; I can’t hardly stand up. But it was worth it.I am wanting to run more often. At least a mile a week. I don’t really know how hard to push myself, how frequently, how long, or what to do afterwords. I have been looking for tips on stretching and if I should even be running. I already exhaust myself and most days walk about 2 to 5 mi, carrying all my stuff and my pain.I want to do yoga, I want to dance I want to run, I want to meditate and most of all I want to feel good. I want a good nights sleep, some good sex, and some relaxation. where do I start and how do I cope with the pain? Sometimes the pain is so bad that I get so depressed that I cant stand to live. I dont want to live like this. Does anyone else feel this way? Because I need some help and support to get me going.
I have CFS and am off work on disability. I am constantly struggling to find that balance between activity/exercise and de-conditioning from lack of energy. I do try to “keep moving” in the house and go outside for walks but I have also found a program on PBS called “Sit & be Fit” that helps me utilize other muscles that I wouldn’t normally use and to keep them toned. I also like the range of motion exercises that she does.