I have been dealing with it since my early teens, I am now 29. I have EDS and arthritis to go a long with it.
At first I could cope with it, I didn't need much to help with pain relief, things keep getting worse though. I am now on Oxycodone, Tramadol, sleeping tablets, ibuprofen and paracetamol (some of it is to help with the EDS and arthritis.
I have tried gabapentin, pregabalin, duloxetine, other antidepressants (tricyclics and SSRIs as well as mirapexin. I have reacted to them all and the most recent one I tried (mirapexin) made me shoot up from 9 1/2 stone to well over 10 stone in a couple of weeks, I can't afford to gain weight because of the EDS.
I have tried physio, chiro, osteopath, swimming, massage etc but I either get no relief or I can't afford to continue especially as the only relief I get is minimal. The worst one of all was swimming, I would end up in so much pain after because the temp of the pool was always too cold lolol.
I am not so bad fatigue wise at the moment, in fact, gone to far the other way it would seem, I can't sleep, even with sleeping tablets, other wise I am sleeping 14-16 hours a day
I am just so tired and sore and even the pain relief I am taking doesn't help much, it does take the edge off though.
Thing is, I was only diagnosed last November, before then it was classed as being all in my head and then it was 'suspected fibro' until I finally said 'I just want to know whether I have it or not' and a good doctor referred me to get properly checked out.
They say its not crippling and not progressive, but I have been getting worse and worse, I use a walking stick now, I am unable to work, I want to to but the Doctors will not let me and even if I tried too, I simply wouldn't be a good employee, a lot of the time just breathing is exhausting enough.
I sound kinda down huh????
In spite of the above, I am doing kinda ok, I am happy, have a laugh etc. I have lost all my friends because of the damn illness but I am making new ones at the local fibro group.
I suspect my 4 year old has fibro as well, she has some of the classic signs, fibro fog, sensitivity to noise, light etc, IBS, headaches, wide spread pain...... That kinda sucks but we shall get there in the end, wherever there is!!!!!!!!!
What do you do with yourself?