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Thanks, that's great, I'll try to look it up. :) I'm happy that I'm not the only one with this, I started to feel that I'm a mystery within a mystery, which is not as good as it sounds. :D

Thanks! I actually read about lipedema before and stage 1 of that does look a bit like how it is distributed on my legs (mostly the upper legs but not really the feet). But mine also affects other parts depending on the time of day and gravity and can change quite rapidly and significantly in...

So this is something I mentioned in my introduction and doctors are really dismissive of it, but this is such a huge issue in my illness that I'd like to find some kind of answer. Sorry if this is long but I'd like to explain it as well as I can. My PVFS was a direct continuation of my EBV...

I have actually found some other people too with the weather sensitivity thing (in other groups), so it may not be very common but some people seem to be affected. I always think it might be similar to someone with migraine and their weather triggers. Except my headaches are sinus headaches...

I'm kind of like you. I do have PEM but my threshold is very high, so I have to do something really demanding to trigger it. However, I am almost always in a state of worsened symptoms due to extreme weather sensitivity, to the point that I cannot really work or plan because I never know when...