Welcome to Phoenix Rising!
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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I think weight loss occur at later stages.YES! I've been on the thinner side my whole life as well as had gut issues which didn't help, but I had muscle because I was able to lift weights.
I've lost around 25 pounds in the 4 years being sick w ME. Most of it in muscle and a little fat. It's horrible. It won't really stop. It's probably due to a multitude of things as this illness itself to be the result of a multitude of things.
I'm nearly 6 feet tall and I weigh about 130 pounds with clothes on. No shoes.
I always hear about weight gain in ME from others but rarely on severe weight loss.
Cindi...............I could only speculate as to what caused it..............as Thomas said it can be a whole multitude of things as a result of this illness. The weight came back on gradually and I no longer have muscle atrophy although I still have some muscle weakness. It's been some time but I think taking amino acids helped some. I've taken so many things over the years it's hard to say. Weight/muscle gain or loss can occur at any stage due to the unpredictable nature of CFS.thanks/ what do you think caused it? or how did you recover? thanks.