When it’s at its worst it’s unbearable which unfortunately is far too frequent ie every other day. But even when it’s bad though its awful I hope that it might start to subside. The love of my sister’s, my seperated wife, my son and the almighty God- not to name him last are what keep me going. Everyone of us wants our old lives back but emerging with some of it intact would be a blessing. It will happen, faith and belief. Science has failed us this far. A bit deep I know
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this is truly a disturbing disease the way it mutates and changed your body and mind. i dont quite think there is anything out there like this. have you seen the movie jacobs ladder? i often feel the same as him. i can not believe these drugs are still on the market i have suffered my whole life for something i took when i was 13. first my mind and now my body. lazarus i have felt what you mean. like even soft surfaces feel hard. maybe it from the numbness and lack of subfat i dont know. my heart goes out to all of you and if i ever won the lottery i would invest to help find a cure for us but there is little to do but try new things and pray it doesnt get worse from it. 99% of things ive tried have blown up in my face. but we are all still here fighting in silence. no one wants to believe. no one wants to hear it. the years of suffering, drs visits, being on suicide watch 3 times, the depression, the toll this has took on my family, the relationships ive lost, being told by 4 drs they can no longer help me, the drugs they prescribed, the side effects ive endured, the food i cant eat, the mutation of my body, the faculties ive lost in my mind and the not being able to put anything /anyone before my sickness or ever live the life i deserve. this all has to lead to something. to me its either fight or suicide. and im telling you brothers you can only fight for so long. may we find some peace one day. i can only pray that the day i can start seeing some progress comes soon. much love to you all on this forum
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Hippydoof I couldn’t have worded it better. Sums up the struggle some of us are going through 24/7: unabated hell. I feel that I’m at the end of the road mate don’t know how I’m still doing it. Try to keep the fight up its all we can do. We’ve been left to rot there won’t be any cavalry coming anytime soon.
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It is truly a gruesome condition my friend.
I can only say your existence and fight is an inspiration for me and others on here.
20 years post-fin is a helluva ride. If it helps at all we’re here all in the same boat
Thanks mate
What symptoms would subside? What infusion was it?
Rituximab or tocilizumab can’t remember tbh. It took the edge of things that’s all I can remember it’s been a while
Interesting. But you haven’t gotten them in 5 years?