Mine started over a year ago with subtle feelings such as tightness and tingling. Noticed skin looking different and legs getting slimmer before the real pain came on. This was Christmas last year, I recall crying my eyes out all over Christmas due to the pain in the entirety of my thighs and buttocks. I was in agony before starting gabapentin - which did provide relief.
I am now 36 so 35 when this started. Most days I really do wish that I was in my 60's. My mum is fitter and more energetic than I am. I hate the thought of many many more years of this and worse.
I'm struggling to deal with the uncertainty of what's happening alot at the moment and pain has moved to every imaginable place on my body hence the depressing tone of my message! I do get days where it isn't so bad.