- Messages
- 39
- Location
- Canterbury
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
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