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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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the dreaded e word

jann1033

Senior Member
Messages
176
I don't want to know if you do it, find it beneficial etc.

I want to know if anyone has ever seen studies that point to chronic muscle fatigue vs exercise. My left leg in particular fluctuates between almost normal to zero strenght. Its always worse during a relapse but it seems to never be really strong, always have tremors, only there, after standing for a few moments, buti t does make me question i f it is simply deconditioning(dr's viewpoint) since it isnt' at a constant state but depends on my general health. After PT sessions for right knee replacement, the quad exercises i did for both legs left the left completely weak, even after 12 weeks. It would recover but next session same thing and never got stronger permanently.

So my question is, has anyone read anything if its possible to gain lasting, i repeat, lasting strength in muscles affected by ME/CFS? I also have had lower back disc problems. At the time that happened didn't have health insurance so the cursory at best care you get under those circumstances. I don't know if that could be impacting the problem. My dr wants me to do more PT but im not wasting the energy/potentially causing a flare for nothing.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
So my question is, has anyone read anything if its possible to gain lasting, i repeat, lasting strength in muscles affected by ME/CFS?

Ive never seen a study showing that so I very much doubt there is one out there showing that.
.......

I just looked up the exercise studies backing support in exercise causing problems in ME/CFS listed in the Canadian Consensus Criteria overview document where I knew they are.

There is study listed in that showing Impared oxygen delivery to muscles after us exercising, several studies showing poor recovery lasting days or weeks after exercise and also another study showing how exercise can negatively affect our gait. .. Also an exercise study showing decreased blood flow in us (cerebral) after exercise and also decreased cerebral oxygen afterwards.

I suggest you use the references in that http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (page 4 of the document, page 10 on the thing which comes up on my computer..... study reference list is then page 19/20 of the actual document itself) to find the actual studies which support that exercises could even be making things worst for you.

Of cause this document was done many years ago now so there is likely to be more studies showing exercise is bad for us since then.
 
Last edited:
Messages
87
Location
Kaneohe, HI
I read this understand under the Pacing section of this site, "Many higher-functioning ME/CFS patients may live almost completely outside their energy envelope; constantly symptomatic but not yet too ill to completely stop what they’re doing, they’re always pushing their limits."

This definitely describes me, and I still continue to exercise to an extent (though I probably shouldn't, I don't have much of a choice being in the military though). When I go through a crash period I am unable to do much of anything, but outside of those times I do strength training. I am completely unable to do cardio without PEM, so I recommend against that. There's an article on exercise located here: http://phoenixrising.me/living-i-the-basics/treating-chronic-fatigue-syndrome-mecfs-exercise

I used to not be able to maintain muscle just through periodic workouts, but I have been using Advocare supplements as of late and it has helped me maintain muscle without a rigorous gym regimen. I can look up what kind of supplements they are, so you can try something similiar. Honestly don't know how much it will help for long-term muscle strength, but I've definitely noticed I maintain more muscle when I get back to the gym after a break for a couple of weeks.
 

adreno

PR activist
Messages
4,841
If you have atrophy and nerve issues in the left leg only, it might be a pinched nerve in your low discs. If it were systemic, it should affect both legs similarly.
 

Butydoc

Senior Member
Messages
790
Interesting. Can you say a sentence or two on how that can be?
Hi Sherlock,

MS is a demyelinating disease that affects the brain and spinal cord. Depending on where the demyelination occurs would then dictate the neurologic deficit. My Brother died from MS and would loose a limb at a time with each relapse. The resultant defect could be sensory, motor or both.

Best,
Gary