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Old 09-17-2014, 03:38 PM
  # 162 (permalink)  
Join Date: Jan 2013
Posts: 347
Originally Posted by MythOfSisyphus View Post
I guess to me the hope is that stuff like genetic therapy will find broad based solutions that are applicable to a wide range of conditions. Til then I guess we just have what we have. Hopefully though the current flare up will ease soon.
I'm right there with you, beleive me I read every journal I can for any hint of a study that may help. I've hit on a few studies which sounded good, only to find they had been poorly researched and the scientists involved were embarrassed so I try and be very realistic about things now.

Sadly these flares seem to set a new level. Imagine it like a computer game, you can go as slow as you like but eventually a new level starts, you get used to it but that's the level you are now at. The same applies to my condition. A flare up may be a big change, but it becomes the norm. Pain has now spread to most joints I may far worse than usual, my hands are badly affected, any use, wheather it's typing or making tea end up with them feeling very warm and painful. I was hoping I had at least 5 more years before this. The next stage would be the pain migrating to my skin in patches and sadly at least on my forearms that's already started. On the upside the various cysts don't seem as bad. God knows how a condition can be so stupidly random.

I'm sober and I intend to stay that way, but in 30 years who knows how this condition will progress and the effects it will have. I hope I have yo ulot around for all that.

Lol sorry I've rambled a bit, just needed to share my feelings right now. Nearly 12 at night so I better try and sleep. You take care of yourselves.
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