Bulding Muscle

[paul80]

My leg muscles have always been a big problem area for me, and it's usually from exertion of these muscles that causes me P.E.M. At this point even if i just go to my doctors surgery i'll be ok that night, just tired, but the next day i am extremely ill. Inflammation everywhere, sore brain, eyes, back, legs, arms, nausea, dizziness. Takes me about a week to recover.

I believe that my leg muscles are gradually getting worse due to doing this so many times. I said to my doctor that i felt i was doing damage to my leg muscles and that i wasn't going to go to appointments any more without a wheelchair. Also, that it would help about the house if i had something to take the weight off my legs.

My GP seemed quite discouraging of this idea, she wanted me to keep using my legs and it didn't sound like she was buying the whole muscle damage thing. She said i need to try and build up muscles slowly.

I've never been able to build up my muscles over the 20 years i've had M.E, they have only got gradually weaker. I tried everything, doing it as slowly as possible and never any improvement.

Is there any proof i can give my GP that will convince her that resting the muscles is the best way?, cause that's the only thing i've found that has helped. Any studies or trials that prove muscle can't be built up?

 

[Valentijn]

No GET trials have ever shown any increase in actual physical activity or capacity. The ones using actometers have shown that there is no improvement.

Maybe it's better to ask her why she believes that graded activity (slowly building up muscles) is possible or helpful. Or get a new doctor

 

[paul80]

No GET trials have ever shown any increase in actual physical activity or capacity. The ones using actometers have shown that there is no improvement.

Maybe it's better to ask her why she believes that graded activity (slowly building up muscles) is possible or helpful. Or get a new doctor

How many GPs do you think i'd have to go through before i find one that understands this? It seems to go completely against their training. Nah i i'm not changing again, i just started at a new surgery.

I got a diagnosis of POTS from the cardiologist after my GP was very dismissive when i told her i thought i had it, so hopefully i can convince her of this now.

Do you have link to these studies that used actometers for M.E?

 

[NL93]

I have the exact same thing. My muscle strength is totally fine when i have properly rested. Exertion makes me lose strength.
Overexerting your muscles is really the last thing you want to do with this disease.
Getting a wheelchair is probably a good idea if it takes you a week to recover from walking.

And maybe you can give this to your GP: http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/

 

[Snowdrop]

If you find you need a wheelchair use a wheelchair. Don't bother trying to convince your PCP you don't need her permission or her blessing. One day there will be the research that shows you were doing the right thing for yourself.
Right now even with any evidence it hasn't become common knowledge so it's an exercise in futility.

 

[Marky90]

There was a recent study showing ME-patients get PEM just by elevating their legs up and down.

 

[Cheesus]

It might not be that deteriorating muscle strength is making it more difficult to walk, but that your ME is deteriorating and that is in turn making it more difficult to walk which is causing your muscles to weaken.

Do you think that could be the case? If it is then trying to rebuild leg strength simply won't work.

 

[paul80]

I have the exact same thing. My muscle strength is totally fine when i have properly rested. Exertion makes me lose strength.
Overexerting your muscles is really the last thing you want to do with this disease.
Getting a wheelchair is probably a good idea if it takes you a week to recover from walking.

And maybe you can give this to your GP: http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/

That's useful, thanks.
I thought i read somewhere before that overexertion causes lactic acid build up which damages muscles. Has this not been proven? Can't find anything about it now.

It might not be that deteriorating muscle strength is making it more difficult to walk, but that your ME is deteriorating and that is in turn making it more difficult to walk which is causing your muscles to weaken.

Do you think that could be the case? If it is then trying to rebuild leg strength simply won't work.

It might be i suppose. I can't help feeling that overexertion makes things worse in the long term.

 

[RinkyInky]

I've tried to build muscle while having CFS and I managed to go from 50kg to 62kg over 7 years but my symptoms worsened and I had major brain fog, chest pains, heart palpitations, intestinal bloating, low grade fevers and for 2 months my CFS worsened to the point that I was in bed for 16hrs a day and had appetite for only 1 meal a day.

I have dropped all that weight and now I am 48kg (you can see my ribcage, hip bones, spine and shoulder blades all sticking out) but I have no more heart palpitations, chest pains and low grade fevers. Some brain fog and intestinal bloating and very obvious food allergies but I only need to sleep 8hrs a day right now, although I need to take a short 1-2hr nap sometimes (still can't exert myself much though, but at least I am not bed ridden).

I am able to eat 3-4 meals a day right now although I am still not gaining any weight.

I working on my genetic mutations with my naturopathic doctor right now and I am guessing that my unresolved genetic issues in the past caused issues with my organs which couldn't support muscle growth etc. I also have mitochondrial mutations which may explain why I have so little muscle mass/ why I am so skinny.

Do use whatever help you feel you need. I was stuck in the whole idea of "the more I exert myself and the more effort I put in the faster I will recover" which is not the case, just look at all the other people that did not need to "work hard to be able to digest food, breathe, walk, stand properly". We are sick and your body needs rest, time and the correct treatments to heal. IMO it's important that the natural/basic functions of the body are working well first (digestion, breathing, ability to accomplish basic physical tasks like standing etc etc.) before going into the mentality of "building".