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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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trying to find others

Messages
71
Hi, im trying to find others in a similar situation. Should be easy, but it has proven not. I would find comfort/peace as well as possibly be more efficient with my time. The bullet point version is this...

Viral onset- rough first year

It settled down and fatigue is mild. I can live and work...like 80%

Slow muscle loss unrelated to inactivity. The more strain I put on a muscle group the faster it atrophies. Something not working between my nervous system and muscles. Been tested for everything mainstream docs look for. I know people on here have it horrible and visible I look fine, but time is taking its toll and I will desperately need help soon.

Help please :)
Joe
 

Rufous McKinney

Senior Member
Messages
13,251
It settled down and fatigue is mild. I can live and work...like 80%

The muscle breakdown happened here as well, I lost considerable weight over about ten years and the muscles went with it. I got weaker and weaker from the ME, and now collagen breakdown, stemming from something about the viruses that affect us, seems to be occuring, my fingerprints are disappearing and breaking down, ligaments very weak.

My main recommendation for you, as I was a mild version for decades- is to be very careful to not stress or worsen your condition. If you can get really good at pacing and staying within the energy envelop availalble to you, you may be able to continue to work and participate in that 80% way.

In my case, some severe stressors outside my control, and too much stress the last few years I was working, led to a further worsening of my condition which- has been unfortunate.

If I could have predicted all that, I would have stopped working far sooner than I did.
 
Messages
71
The muscle breakdown happened here as well, I lost considerable weight over about ten years and the muscles went with it. I got weaker and weaker from the ME, and now collagen breakdown, stemming from something about the viruses that affect us, seems to be occuring, my fingerprints are disappearing and breaking down, ligaments very weak.

My main recommendation for you, as I was a mild version for decades- is to be very careful to not stress or worsen your condition. If you can get really good at pacing and staying within the energy envelop availalble to you, you may be able to continue to work and participate in that 80% way.

In my case, some severe stressors outside my control, and too much stress the last few years I was working, led to a further worsening of my condition which- has been unfortunate.

If I could have predicted all that, I would have stopped working far sooner than I did.
Thx, yeah stressors!! It’s tough right now
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Hi @Jpac ...
I wish I had more to offer here, because I can hear your concern and apprehension..


I've had a lost of muscle loss, but I just put it down to being pretty close to bedbound for 8 years, tho I can get to the kithen and bathroom most days with no serious problems.

I remember seeng a thread title about loss of subcutaneous fat, and I did a search here on PR (more on that later), and here's the link to the page with the two thread titles that came up:

https://forums.phoenixrising.me/search/335177/?q=subcutaneous+fat+loss&c[title_only]=1&o=date

Regarding searches of the threads here, at the top far right of each page in the dark blue field, there's a 'Search' button, click on that and enter whatever you're looking for.

A Google Site Search function is also available, on the second line of the dark blue section at the top of every page, second from the last, but it only searches non-members only threads, since it's open to the public-at-large.

Again, I wish I had more to offer. Keep searching, I know there're others here who've also had a loss of muscle mass, I just can;t remember the thread titles, or anything even approximate.

Edited for a typo so ludicrous that I almost left it in for laugh value ....
 
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