Have Doctors Gone Too Far on Exercise For Fibromyalgia?

[Suella Postles]

Hi Katie,Dr. Lapp recommends people with CFS/ME to do no more than 5000 steps a day. I wouldn't have said 4,000 steps is inactive for myself.
Suella

I've had FM a lot longer than ME/FM combined. With just FM I found keeping active really did help in many ways, my body was looser with less pain but as time went by, even when I tried to continue some exercise ie swimming or walking my endurance went from 42 laps down to 1/2 and walking from 40 min to 5-10. Drastic change.
I wear a fitbit but I'm only walking an average of 4000 steps which is very inactive. I also do stretches or gentle movement of my body like with Qi Gong and as long as I don't do more than 5-10 minutes every few days I'm ok but no where near the "exercise twice a day and go to aquafit at least once a week" so says my newest physiotherapist-whom I thought understood what ME was about-but nope. I'm bringing print-outs on ME and PEM next time!!

 

[Phil Hayward]

Glad to hear it Edie - thanks for passing that....I think a recumbent bike is a great idea. I rather think that walking might be the hardest kind of exercise. I used to try rowing in the gym but I think probably went at it too hard.

That was the epiphany I had. I was always fighting, fighting, fighting and keeping up an exercise program in spite of the pain and tension, but as I got older I was steadily losing the battle and becoming less and less functional. Then I got the inspiration - from your blog - to try "low - medium intensity only". This was based on the findings that FM sufferers are chronically swamped with lactate. I reasoned, how about not creating the lactate in the first place? And seeing if my body might actually manage to slowly clear it?

But complete exercise avoidance would be wrong because it would lower the aerobic threshold so that lesser and lesser exertion would produce lactate.

I also picked up the information that a ketogenic diet helped reduce FM symptoms, which is consistent with the idea that the body would be running on fat for energy instead of sugars which produce the more toxic waste by-products. I did pursue a multi-disciplinary protocol consisting of "nearly everything that might be beneficial"; I didn't want to spend time experimenting with how effective this or that might be on its own, I just wanted to get better as fast as possible! But I regard the "paced exercise" as the most important ingredient, and the one that seems to be always there in ANY multi-disciplinary protocol that has proved beneficial.

 

[Phil Hayward]

Re

Really interesting fibroite...

So aquatic therapy which I guess is a bit different from swimming has been very helpful but other exercises have not been. Has it helped with your pain, energy, cognition?

And myofascial release massage has been really good for sleep - that's very good to hear.......I hope that message gets around.

I think the crucial thing with the aquatic therapy is that it is low intensity - partly because the body weight is supported by water. Swimming was something I was doing, and going too hard, like everything I was doing. When I refocused on low intensity, I firstly tried swimming slower, but discovered that aqua-jogging was ideal, so I switched to that. Actual swimming still uses a lot of muscles and the overall intensity is hard to keep down. Even walking is quite hard to sufficiently reduce the intensity of, when your threshold is low.

With aqua-jogging, wearing the flotation aid belt and armlets means that muscles are spared the constant effort of maintaining posture and control and breathing, in the water.

Yes, I added myofascial release to my tool kit too, and believe there has been additional benefit from it. What I do not know is whether I need to keep up everything I am doing, just to maintain my improvement, or whether I could dispense with some of the time and cost sacrificed. I am still improving, so I still keep up with pretty much everything. I have posted long comments elsewhere about "everything I am doing", so won't take up space on this thread. I wish others were reporting back that the same basic approach works for them too.

 

[Lartista]

Well there's a good vote for exercise . (Feel free to put in vote for her. ) Sorry to hear she has arthritis to deal with now although exercise is actually recommended for arthritis for many of the same reasons. ..



I think the mantra is now that if you can move and be active you should definitely do so because there are real consequences to not doing so.

Cort, the ME/CFS SAFE EXERCISE GROUP is now over 2 years old. We went from almost 1000 members down to about 60, by choice as we really only wanted a small team of committed members who had a sincere interest in exercising safely. As the administrator and the members have seem patterns clear develop regarding ME/CFS and exercise, though some have FIBRO and others have the lighter version of MYOFASCIAL PAIN SYNDROME, like me. The consistent theme is the person MUST be under good medical care by an expert who really knows about these illnesses. An average doctor doesn't and therefore may advice incorrectly how to approach exercise.

But one thing the experts have in common is they insist on exercise and so do I. there are very few true cases where NO exercise or holding off on exercise is true. But again, what is defined as exercise is very important. In this moment, I am attempting once again to make it to the gym. I currently walk 3 days a week for 3 miles/5 kilimeters with a cardio strap on but that is after taking 6 months to build up to that level. I started 4 months on the floor doing thighs and abs. Then I went vertical.

Right now I have added home weights using the thighmaster and a decline bench. I will soon be adding HOPEFULLY two trips to the gym to use the elliptical machine with my goal being hitting 30 minutes capped at 130 heart rate. Then I will come home and lay for 2 to 5 hours to offset it. My VO2MAX was 16.2%, capped heart rate of 112, at 3.2 minutes, which places my ME/CFS on the line of one point about severe by the first standards listed below and in class C for heart failure. I only mention this because others would like to say, THEY ARE WORSE, but it usually not true as I have also had 2 heart surgeries!
American Medical Assoc Guidelines Impairment in CFS/ME Vo2max
Mod to Severe: 15 to 20 __________
Severe: < 15 __________

New England Journal Med 1980 Cardiac Failure Class Vo2max:
C 10 to 16 __________
D < 10 __________

Cort,

The trends in this group, including me are that we go up and down. We have set backs and then we must rebuild back up. We sometimes never get back up much but, we still suffer with these damn illnesses but what we have clearly seen is that we make it to events, holidays, weddings, conferences, art shows, vacations, emergencies, etc that with out exercise we would have crashed at a much lower point. It seems our threshold of when we crash is pushed out MUCH further and the symptoms of the illness are USUALLY much less because we built up our systems. Exercise is not the cure but is a needed choice and the support of a group to safely whine and ask for help is vital. We encourage each other to get back up again and we do it where alone hidden in our homes alone, usually we will not....

If Cort, you would like to interview some members and write about their experiences, just ask and i will create a calling for them to see who is interested. Also, we have the prep group where I park interested new members. Once they do the pre-screening and are sincere, we in time move them to the TEAM. As I do not want to disturb the TEAM with people who merely want to observers and "distracters", I protect the TEAM from this.

Francesca

 

[nerida kirov]

There is no question that physical exercise can be helpful in fibromyalgia. It's generally described a "first-line treatment for FM; i.e. it's the first treatment doctors often prescribe. Exercise is almost certainly the best studied treatment option for FM. Dozens and dozens of studies have shown that moderate exercise can have significantly positive effects and more studies are coming out all the time.

[fright]View attachment 1623 [/fright]Over the past two years no less than 18 studies have examined exercise in FM. In fact so many exercise studies have been done that in 2014 a meta-review of meta-reviews of exercise in FM was done.

Exercise is a hit in FM.

Exercise and Fibromyalgia

Let's look what the studies say about the benefits of exercise. A recent meta-review indicated that the exercise prescriptions for FM are quite mild; we're not talking about running marathons or in many cases running at all. A meta-review recommended that exercises of slight to moderate intensity be done twenty to thirty minutes, two or three times per week.

Exercise didn't have any impact on sleep, had small impacts on pain, fatigue, depression and quality of life. and medium impacts on physical fitness.

Whether its Tai chi, yoga, swimming or walking it doesn't seem to really matter. (Some indications suggest resistance exercises may be a bit more helpful.)

A recent study aimed at increasing the number of steps taken a day from inactive (@4,000) to almost active (<10,000) steps a day found that doing so had positive outcomes on Fibromyalgia Impact Quotient, pain intensity, pain interference and depression scores.

[fleft]View attachment 1624 [/fleft]The Fibromyalgia Impact Quotient did, in fact, drop twelve points - a significant amount - but at the end of the study it was still at 54 out of a possible 100 (with zero being FM has no impact; i.e. no FM). Pain intensity dropped from 6 to 5 but 5 was still nowhere being pain-free (0 = pain-free). A similar pattern prevailed across the other measures; according to the statistics there was very, very little chance that exercise was not the cause of their improvement (p<.0001) but how much better were they?

One indication that the researchers might have been more pleased with the study than the patients were showed up in the 6 and 12 month follow ups. By the six and 12 month follow up most of the patients had returned to their normal activity levels. That hardly suggests exercise made a radical difference in their lives.

The medical community seems almost driven to overstate any positive findings. The meta-review referred to earlier found minimal effects of exercise on pain and fatigue and depression but note its conclusion (below)- and think what a busy doctor who might take from that.



There's nothing inaccurate about this statement - it's just incomplete. Exercise does reduce pain, fatigue, etc. but while the effects are significant they are also small. (Only in medicine can something have significant and small effects at the same time….)

The fact that physical exercise and cognitive-behavioural therapy are considered first-line treatments for FM may say more about how effective the medical profession is in treating FM than anything.

The Mayo clinic does a fairly good job with exercise and FM. It acknowledges that exercise is probably the last thing a FM patient feels like doing and that it may help reduce your pain.

If you have fibromyalgia with painful tender points, deep muscle pain, and fatigue, exercise is probably the last thing on your mind. Yet, exercise may be just what the doctor ordered. Whether it's daily walks,stretching, swimming, yoga, tai chi, or Pilates, low-impact exercise programs can keep you fit in spite of your fibromyalgia -- and may help reduce your pain, as well.

It's too glib "exercise may be just what the doctor ordered", however, makes exercise sound as if it might be some magic pill.

The list of positive effects the Mayo clinic attributes to exercise is a long one

• Burning calories and making weight control easier
• Giving range-of-motion to painful muscles and joints
• Improving a person's outlook on life
• Improving quality of sleep
• Improving one's sense of well-being
• Improving aerobic capacity
• Improving cardiovascular health
• Increasing energy

• Placing the responsibility of healing in the hands of the patient
• Reducing anxiety levels and depression
• Relieving stress associated with a chronic disease
• Stimulating growth hormone secretion
• 'Stimulating the secretion of endorphins or "happy hormones"
• Strengthening bones
• Strengthening muscles
• Relieving pain

All these are undoubtedly true. (Notice that relieving pain is the last one mentioned). What’s lost in the translation though is the context. When FM patients read increased energy - they probably envision abundant energy; when they see pain relief - they probably envision freedom from pain; when they see improving quality of sleep they probably envision waking up rested.

The studies indicate they will probably get a small reduction in fatigue, a small reduction in pain and maybe a little better sleep. The disconnect between the medical profession appears to be offering and what it is offering is immense.

By the way studies do not, as the Mayo Clinic suggests indicate that exercise increases serotonin levels, or endorphins. Nor do most studies suggest that it rebalances the autonomic nervous system. It may help with HPA axis functioning and inflammation, however.

[fright]View attachment 1625 [/fright]This is not an anti-exercise blog, or is it meant to suggest that FM patients shouldn't exercise. Maintaining physical fitness is important and exercise may help you stave off serious future problems. Plus studies indicate that it generally does help but if your doctor looks at you and says you just need to exercise or believes exercise will play a significant factor in returning you to normal health, perhaps you need to find another doctor.

The medical community has a great desire to find something that helps. Helping people, after all, is why doctors become doctors and doing so helps them legitimize themselves. Overstating the potential of a treatment, however, can leave patients questioning their doctors and themselves.

One question is why, given its moderate effects, exercise has so captured the imagination of research funders. One meta-review examined more than 70 FM exercise studies. As of this writing nine more were underway at clinicaltrials.gov. A recent study asked whether walking in a mature vs a second growth forest was more beneficial in FM. I am all for getting out into nature but is yet another permutation of an exercise study going to move the bar in FM?

How have you done with exercise? Has it been a great help? A moderate help? Not much of help? What does your doctor say about it? Let us know.

• Learn more about exercise, FM and ME/CFS in our Exercise Resource Center

Has anyone had experiences with using Pilates for exercise? I would love to compare how it has been for others

 

[UK Margaret]

I have high end moderate to severe ME and have been at least 75% housebound for the past five years, rising to 95% for about the past two years, only getting out for doctors and hospital appointments and the like. I also have been diagnosed with FM about a year ago. I did try gentle exercise but had a massive ME crash and I'm fairly sure that, and a further big ME crash, is also part of what brought on the FM. For me these days, exercise can just be anything from simply trying to get a shower to small amounts of the most basic housework at best.

Personally I think for those of us that have both ME and FM there needs to be much, much more meaningful research done on the effects of exercise on PEM before we recommend ANY exercise at all for those of us that have both conditions.

 

[Emma Peters]

I have found that exercise helps with the mental symptoms for me, my mood is better and my anxiety a bit better, but there's a trade off. If I just keep going doing a bit of housework, short walks with the dog etc it helps keep my muscles moving, but if I attempt anything more, ie exercise classes or swimming, it tends to cause days of much worse stiffness and worse pain. So lying around all day is a bad thing for me, but resting when I need to and limiting exercise is the key for me, it's a bit of a balancing act.

 

[Reen]

I've had severe fibromyalgia for some 18 years now. I have two theories as to how this condition came on. However, addressing the question at hand. In the early years of fibro I had tried physical therapy three different times. Each time I was released because I couldn't get past even the slightest of exercises. (I could barely lift my toes off the floor) I was a broken down mess.
I then tried hot water pool exercise which was absolutely horrible for me. I pushed on for two greuling months, but had to stop because it left me in excruciating pain and horribly weak.
My massage therapist suggested rolling across my bed to stretch. This did help somewhat so I continued until I was able to stretch upon arising however stretching would oftentimes set me back a week causing flare.
I could go and on here...flares were unbelievable and unbearable!! There were times I thought I'd die from the bone deep aching, burning pain.
I have never given up and have tried just about everything to heal.
Exercise never ever made me feel better...just extremely worse.

 

[simmie]

I do chair exercises 2x/week (or that's what it's supposed to be, but we stand for most of the class and I find that hard lately). I also participate in Aqua Fitness 1x/week in a therapeutic salt water pool (temps range from 90-94°C). It can be too hot some days. I love the water and have enjoyed the classes, but I do pay for it the next 1-2 days after. I also walk a lot, but I have been having issues with my feet now as well. This frustrates me to no end, because it makes any exercise hard!
I get a massage 1x week as well.
While exercise is good for everyone, you have to find the correct one for you (sometimes that's very difficult).

 

[Katie]

Has anyone heard of Feldenkreis therapy? I had the most excellent therapist for a few years then we moved too far. The therapist where I now live doesn't have a great rep unfortunately.
She also gave me a list of gentle exercises for the pool. We termed it "movement therapy" and that's what it is, gentle movement, but movement.
So, even when I'm stuck at home I can float like a butterfly around the house (nope I don't sting for those of you old enough to understand that one).
However, when I have a bad flare-up, when I feel dizzy, nauseated and in lots of pain, then any movement is torture. Although I've tried many times to increase my physical abilities, slowly even, I don't get far at all. I've tried going for massage and trigger point therapy and both back-fired drastically. I get a whole lot worse in the winter months with our cold very damp weather in the Pacific Northwest.
My point being: there are many of us that do not have the ability to increase our exercise capacity, our Vo2 levels etc. And it's not from lack of trying or wanting or fear of pain. It just is.

 

[Bertiedog]

In the case of FM sufferers, I believe we have a severely impaired ability to recover from anaerobic exertion (and indeed even intense exertion of any particular muscle over a short period of time) - where an athlete might just reduce their intensity for a few minutes and be "back to normal", we remain swamped with lactate for DAYS, during which time we have probably been generating even more lactate. ESPECIALLY if we are deliberately exercising! This is why exercise makes us worse!

I SO agree with this and it's my experience too but my diagnosis was ME/CFS /Lyme and not FM. What helps me to recover is to take lots of supplements to support the mitochondria and to breathe oxygen from my concentrator for at least 30 minutes after each meal or immediately after a good walk of 30 minutes with my dog.

The only time this doesn't work is if I have a virus or infection brewing and then it all falls apart but for the most part I can be fairly physically active every day provided I have at least a few hours lying down in between the exertions. Recently my average number of steps is between 8,500 and 9000. This always drops away during the Winter months because of the immune system problems I have as mentioned above.

 

[Bertiedog]

I should add that I am fortunate in that my hormones have been treated since 2003. I take dessicated thyroid and also 6mg Prednisolone for worn out adrenals plus a tiny bit of estrogel daily. Without this constant hormone treatment I wouldn't be walking 1000 steps daily let alone 9,000. It gave me my life back but I also needed to address the Lyme and immune system problem I have and taking lots of herbs for the immune system seem to have help too.

 

[Cort]

I think the crucial thing with the aquatic therapy is that it is low intensity - partly because the body weight is supported by water. Swimming was something I was doing, and going too hard, like everything I was doing. When I refocused on low intensity, I firstly tried swimming slower, but discovered that aqua-jogging was ideal, so I switched to that. Actual swimming still uses a lot of muscles and the overall intensity is hard to keep down. Even walking is quite hard to sufficiently reduce the intensity of, when your threshold is low.

With aqua-jogging, wearing the flotation aid belt and armlets means that muscles are spared the constant effort of maintaining posture and control and breathing, in the water.

Yes, I added myofascial release to my tool kit too, and believe there has been additional benefit from it. What I do not know is whether I need to keep up everything I am doing, just to maintain my improvement, or whether I could dispense with some of the time and cost sacrificed. I am still improving, so I still keep up with pretty much everything. I have posted long comments elsewhere about "everything I am doing", so won't take up space on this thread. I wish others were reporting back that the same basic approach works for them too.

Thanks Phil

Of course when I tried swimming - which I love - I love to swim - I immediately started swimming laps (lol)...Swimming actually is VERY energy intensive - look at the muscles on professional swimmers - I would feel great after the exercise - very relaxed - and then felt like sleeping for the rest of the day. It's definitely a fine line.

 

[Cort]

Cort, the ME/CFS SAFE EXERCISE GROUP is now over 2 years old. We went from almost 1000 members down to about 60, by choice as we really only wanted a small team of committed members who had a sincere interest in exercising safely. As the administrator and the members have seem patterns clear develop regarding ME/CFS and exercise, though some have FIBRO and others have the lighter version of MYOFASCIAL PAIN SYNDROME, like me. The consistent theme is the person MUST be under good medical care by an expert who really knows about these illnesses. An average doctor doesn't and therefore may advice incorrectly how to approach exercise.

But one thing the experts have in common is they insist on exercise and so do I. there are very few true cases where NO exercise or holding off on exercise is true. But again, what is defined as exercise is very important. In this moment, I am attempting once again to make it to the gym. I currently walk 3 days a week for 3 miles/5 kilimeters with a cardio strap on but that is after taking 6 months to build up to that level. I started 4 months on the floor doing thighs and abs. Then I went vertical.

Right now I have added home weights using the thighmaster and a decline bench. I will soon be adding HOPEFULLY two trips to the gym to use the elliptical machine with my goal being hitting 30 minutes capped at 130 heart rate. Then I will come home and lay for 2 to 5 hours to offset it. My VO2MAX was 16.2%, capped heart rate of 112, at 3.2 minutes, which places my ME/CFS on the line of one point about severe by the first standards listed below and in class C for heart failure. I only mention this because others would like to say, THEY ARE WORSE, but it usually not true as I have also had 2 heart surgeries!
American Medical Assoc Guidelines Impairment in CFS/ME Vo2max
Mod to Severe: 15 to 20 __________
Severe: < 15 __________

New England Journal Med 1980 Cardiac Failure Class Vo2max:
C 10 to 16 __________
D < 10 __________

Cort,

The trends in this group, including me are that we go up and down. We have set backs and then we must rebuild back up. We sometimes never get back up much but, we still suffer with these damn illnesses but what we have clearly seen is that we make it to events, holidays, weddings, conferences, art shows, vacations, emergencies, etc that with out exercise we would have crashed at a much lower point. It seems our threshold of when we crash is pushed out MUCH further and the symptoms of the illness are USUALLY much less because we built up our systems. Exercise is not the cure but is a needed choice and the support of a group to safely whine and ask for help is vital. We encourage each other to get back up again and we do it where alone hidden in our homes alone, usually we will not....

If Cort, you would like to interview some members and write about their experiences, just ask and i will create a calling for them to see who is interested. Also, we have the prep group where I park interested new members. Once they do the pre-screening and are sincere, we in time move them to the TEAM. As I do not want to disturb the TEAM with people who merely want to observers and "distracters", I protect the TEAM from this.

Francesca

Thanks Francesca, I would love to talk with the group some time. I agree that keeping as fit as possible is very important; I don't see how it could not be...

 

[Cort]

Has anyone heard of Feldenkreis therapy? I had the most excellent therapist for a few years then we moved too far. The therapist where I now live doesn't have a great rep unfortunately.
She also gave me a list of gentle exercises for the pool. We termed it "movement therapy" and that's what it is, gentle movement, but movement.
So, even when I'm stuck at home I can float like a butterfly around the house (nope I don't sting for those of you old enough to understand that one).
However, when I have a bad flare-up, when I feel dizzy, nauseated and in lots of pain, then any movement is torture. Although I've tried many times to increase my physical abilities, slowly even, I don't get far at all. I've tried going for massage and trigger point therapy and both back-fired drastically. I get a whole lot worse in the winter months with our cold very damp weather in the Pacific Northwest.
My point being: there are many of us that do not have the ability to increase our exercise capacity, our Vo2 levels etc. And it's not from lack of trying or wanting or fear of pain. It just is.

Yes, indeed....I think its clear that exercise is no panacea; that it may be helpful but that it is clearly a complex undertaking and it may not work at all for some people. I hope that doctors understand this is not a one answer fits all situation.

 

[Josette Lincourt]

Exercise is fine, but with a two-hour window of capacity, it is not always practical. At 68, had to stop working when 50 after two surgeries sent me down the spiral. Diagnosed with FM, followed by ... call it ME, CFS, whatever as it has been called by so many, just not MUS!, but many musculo-squelettal documented problems have existed, some since childhood. An avid walker, that is THE exercise I've maintained, although the distance walked has drastically decreased over time although I try spending as much time doing it, with a wheeled walker - which allows me to bring home my errands - in summer and two canes in winter (with a backpack) although I have a car, used for bigger and heavier orders (cat litter, food...).

Does anyone out there correlate flares with the weather? The worst days are when barometric pressure is falling while humidity is increasing, and if it is about to rain or is raining, plus windy, (and any of these are changing, even the wind direction) then there is no part of my body which doesn't hurt terribly. Stable weather is the best, but is nowadays a rare commodity. Very very cold, sunny and dry days in the winter are not pain-less, but much better.

Nobody can visit in my apartment. The time spent outdoors walking means nothing gets done at home, except very basic.

Distractions are extremely important. There was a time when I avoided, then decided that such distractions as having a meal with a friend, walking in my fave park (and taking loads of photos), visiting the botanical garden or our biodome help temporarily put the pain and fatigue on a backburner. It comes back after, but at least some good has come out on those days! Then I pay for the next few days...

Exercising in any organised fashion would mean having to run errands by car. Don't want to do that.

 

[Martinigal]

I was bedridden for about the first 3 years of having Fibromyalgia. I had 3 major surgeries and fell into Fibromyalgia when I couldn't recover from the last surgery (open heart bypass).

During this time exercise was not even on my radar. I finally gave in, after trying all the vitamin/diet therapies which yielded little to no help, and started on Methadone. Methadone is an interesting drug in the way it treats pain in my body. The horrible body aches, skin sensitivities and joint pain are gone. And initially I had such a surge in energy it was unreal. I could go for hours, even was hyper for the first 6 months. During this time I moved and it was so great that the move came just as I was feeling so great.

It took about a year for the initial improvements to wain and because of all the misdirected DEA focus on opoid overdose and the pressure on doctors not to prescribe them, I couldn't get an increase in my very low dose of 20 mg/day.

So the difference is that now I can keep my house clean. I can do laundry, I can clean the bathroom, I can vacuum, all of these things were impossible for me before Methadone. So that is my exercise. Just keeping my home clean and running errands is how I exercise. It's not what my doctor to hear, but it's what I can do. And I have many many other conditions that keep me from exercising as well.

The one that really keeps me down and unable to be on my feet for any time is a condition called DTTD. It's a tendon disorder in the foot which is very painful. I have to wear a brace everyday, but I've had an infected hematoma which has prevented me from wearing the brace. Prior to the hematoma I had an infection in the pleura of my lung. And that really sums me up. Fibromyalgia, sure I have it. But I also have tens of other conditions that are more responsible for my lack of exercise than Fibro.

I do the best I can and try not to care about all the judgmental people out there, my family included who feel if I just could get out and do some kind of exercise, all would be well.

 

[Seeksassy]

I have high end moderate to severe ME and have been at least 75% housebound for the past five years, rising to 95% for about the past two years, only getting out for doctors and hospital appointments and the like. I also have been diagnosed with FM about a year ago. I did try gentle exercise but had a massive ME crash and I'm fairly sure that, and a further big ME crash, is also part of what brought on the FM. For me these days, exercise can just be anything from simply trying to get a shower to small amounts of the most basic housework at best.

Personally I think for those of us that have both ME and FM there needs to be much, much more meaningful research done on the effects of exercise on PEM before we recommend ANY exercise at all for those of us that have both conditions.

My last Physio told me that most housework qualified as mild to moderate exercise, so these days I count household chores as my exercise. So.e days I get no chores done, some days several. On a good day a walk counts high on my list even if it's going shopping for groceries.

 

[Cort]

I was bedridden for about the first 3 years of having Fibromyalgia. I had 3 major surgeries and fell into Fibromyalgia when I couldn't recover from the last surgery (open heart bypass).

During this time exercise was not even on my radar. I finally gave in, after trying all the vitamin/diet therapies which yielded little to no help, and started on Methadone. Methadone is an interesting drug in the way it treats pain in my body. The horrible body aches, skin sensitivities and joint pain are gone. And initially I had such a surge in energy it was unreal. I could go for hours, even was hyper for the first 6 months. During this time I moved and it was so great that the move came just as I was feeling so great.

It took about a year for the initial improvements to wain and because of all the misdirected DEA focus on opoid overdose and the pressure on doctors not to prescribe them, I couldn't get an increase in my very low dose of 20 mg/day.

So the difference is that now I can keep my house clean. I can do laundry, I can clean the bathroom, I can vacuum, all of these things were impossible for me before Methadone. So that is my exercise. Just keeping my home clean and running errands is how I exercise. It's not what my doctor to hear, but it's what I can do. And I have many many other conditions that keep me from exercising as well.

The one that really keeps me down and unable to be on my feet for any time is a condition called DTTD. It's a tendon disorder in the foot which is very painful. I have to wear a brace everyday, but I've had an infected hematoma which has prevented me from wearing the brace. Prior to the hematoma I had an infection in the pleura of my lung. And that really sums me up. Fibromyalgia, sure I have it. But I also have tens of other conditions that are more responsible for my lack of exercise than Fibro.

I do the best I can and try not to care about all the judgmental people out there, my family included who feel if I just could get out and do some kind of exercise, all would be well.

What an amazing story Martinigal! I had heard methadone could be really good - was maybe the best of the opioids - but I didn't know it could have such an impact. In a recent blog I did opioids were the second best drug behind medical marijuana.

Sorry to hear about all the other stuff. Sometimes when it rains it pours unfortunately

 

[Cort]

Exercise is fine, but with a two-hour window of capacity, it is not always practical. At 68, had to stop working when 50 after two surgeries sent me down the spiral. Diagnosed with FM, followed by ... call it ME, CFS, whatever as it has been called by so many, just not MUS!, but many musculo-squelettal documented problems have existed, some since childhood. An avid walker, that is THE exercise I've maintained, although the distance walked has drastically decreased over time although I try spending as much time doing it, with a wheeled walker - which allows me to bring home my errands - in summer and two canes in winter (with a backpack) although I have a car, used for bigger and heavier orders (cat litter, food...).

Does anyone out there correlate flares with the weather? The worst days are when barometric pressure is falling while humidity is increasing, and if it is about to rain or is raining, plus windy, (and any of these are changing, even the wind direction) then there is no part of my body which doesn't hurt terribly. Stable weather is the best, but is nowadays a rare commodity. Very very cold, sunny and dry days in the winter are not pain-less, but much better.

Nobody can visit in my apartment. The time spent outdoors walking means nothing gets done at home, except very basic.

Distractions are extremely important. There was a time when I avoided, then decided that such distractions as having a meal with a friend, walking in my fave park (and taking loads of photos), visiting the botanical garden or our biodome help temporarily put the pain and fatigue on a backburner. It comes back after, but at least some good has come out on those days! Then I pay for the next few days...

Exercising in any organised fashion would mean having to run errands by car. Don't want to do that.

I notice that when the weather changes and a storm is coming in I often get fluey....it's just so strange. I too have been committed to at least walking...the last thing I will give up...