Progressive leg weakening

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Hi all

During most of my 23 years of ME I have experienced the same kind of PEM and recovery through resting that seems to be typical for most of us.

However, four years ago I overdid my walking due to a month of dealing with kids' school stuff and ended up pretty much confined to the couch. There was some bounceback from this but after slightly overdoing it again, my legs (most noticeably but also the whole body) just started getting weaker and weaker.

At some points I have managed to reverse this trend using B12 injections, folinic acid and phosphatidyl choline but these never last and deterioration begins again.

Has anyone else experienced this and found any way to manage it? My best guess is that it is something metabolic which is lacking, either in terms of nutrients (although I have pretty much covered vitamins, minerals and mitochondrial supplementation - L-carn, CoQ10, D-ribose etc) or a genetic issue which just no longer recycles ADP quickly enough or something similar.

The B12 and folinic are probably just topping up their levels to the optimum which is why I get a short lift.

Nothing relaxing related such as CBD, valerian or valium works as they just accelerate the weakness which further confirms to me it is energy related rather than tension or neuro. It also means massage and bodywork also is ineffective.

Any suggestions or insights would be gratefully welcomed. I have tried methylation protocols to no avail as that might be an obvious guess.

Thanks in advance. I hope everyone is doing as well as they can.

Andy
 

Shoshana

Northern USA
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HI Andy.
I definitely understand what you are saying. It is very rough. Very limiting and difficult to cope with.
SO at least I offer my comprehension.

I have tried many things, like you have, to try to counter this, over the years,
however, for me in my case, they didn't work, and I am still having it progressively.

I do think, that it is not the case for everyone, and that it is worth everyone trying things, to see if they can stop theirs from being long-term or progressive.

Very gentle, very limited movements, just a few, spaced out, I would still try . Just watch carefully for where that point is, when it does more harm than good.

And perhaps, try collagen peptides, or BCAA ?

Something I have to do, is EXTREME prioritizing, of the small bit of movement I am capable of,
so that when I am able to do anything, I have decided in advance, which is truly the MOST important to do.
I don't waste any of my small stamina/strength on something not as crucial.

What I choose, depends mostly on what is absolutely needed , as well as a bit on which things we value most.
But mostly it is necessities, which I am limited to.

Still hoping for improvements, for you and myself and others, who are at this difficult functioning and low mobility level.
 
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Hi Shoshana

Thank you for your understanding. I am sorry you have this too. I have actually asked this, or similar questions, on a number of forums in the past and this is the first sign of recognition I have had.

I haven't tried either BCAAs or collagen peptides so thank for those suggestions. Extreme prioritising is something I am familiar with and empathise with you on that.

Likewise, I really hope there will be improvements for those of us on the severest end of the illness. Each research breakthrough hopefully moves us a little closer.

With good wishes from the UK
Andy
 
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>How often have you done the B12 shots?

I started off with every other day (1mg hydroxycobalamin subq) and this was great but quickly became ineffective. At the moment my best strategy seems to be once a week for a month with two months break. Even then there is a case of diminishing effectiveness, even with the usual co-factors added in.
 

brenda

Senior Member
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>How often have you done the B12 shots?

I started off with every other day (1mg hydroxycobalamin subq) and this was great but quickly became ineffective. At the moment my best strategy seems to be once a week for a month with two months break. Even then there is a case of diminishing effectiveness, even with the usual co-factors added in.
Did you try methylB12 and/or methylfolate?