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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Iansbergen, if you don't mind sharing, did you regain muscle and strength along with the improvement, and what sort of time scale ?
It took 20 years of very slow improvement
Even lay people can notice the ME gait when it is severe enough.
My abs were the first thing to go ... not that I had visible ab muscles! But even when I was still walking around quite a bit, going to classes and volunteer work, I suddenly couldn't use my abs to sit up or stand up. It was painful and very difficult.It took 20 years of very slow improvement. Arms got strengh back first. Now I can lift using my back and belly muscles
It would be interesting to know the gender of the respondents. I've read that men tend to lose weight with this disease, and women tend to gain. Don't recall where or when I read that.
Interesting. I always had a problem with weight gain (not excessive but just 10lbs over fairly lean) when healthy but had got down to a very lean weight due to diet and exercise prior to onset. After onset I stayed at this low weight without any dieting or exercise for 12 years until my symptoms suddenly worsened and I gained 10lbs or so within a few weeks with no change in eating or activity.
Hard to answer the initial question. I didn't lose weight but I didn't gain it as I usually did.
I always felt regaining would be a marker of recovery for me too. Every time I got close to 60kg I would relapse and lose the weight again. It kept happening over and over and became very obvious to me. I can't get back to the pre-illness weight of around 65kg.I've lost over a stone and a half (*) since being poorly - most of it muscle as there wasn't much fat there to begin with. Now very underweight and struggle to maintain it. Would be one of the markers of recovery for myself, if I were to able to build muscle again.
(*) = over 20lbs / ~10 kg