I have a rare disease called "familial cold auto-inflammatory syndrome". Untreated it causes me to break out in a rash when exposed to cool/cold temps,run a fever up to 105, pain in anything that bends, etc. This rash goes (literally) from the top of my head to the bottom of my feet. It is painful, has never itched and takes from 24 to 36 hours to cycle out, then it starts all over again.
Needless to say, I haven't had much of a social life, work from my home (where I can control the temperature) and don't have many visitors (because they are uncomfortably hot). about
15 years ago, I was started on prednisone to control the breaking out, and it did help. Also was prescribed darvocette for the pain. Moving forward, I am still taking prednisone (5mg daily), took Arcalyst (for the FCAS) for about
three years, then it stopped working and am currently on Ilaris for the FCAS. It helps, but doesn't completely stop the FCAS. Still having to layer clothing, shivering, taking hot baths to warms up and have pain.
Before darvocette was removed from the market, my rheumy put me on trammadol. it was not effective at all. Fast forward to the end of Sept 2014, I am stage 3 kidney disease, have had both hips replaced, foot surgery, C4/5 & 5/6 fused and hand surgery. I have osteo-arthritis and will be receiving my second injection of Prolia in a couple of weeks. I also have been diagnosed with spinal stenosis, curvature of the spine, sciatica and probably looking at surgery for my left shoulder. I feel that a lot of the joint and kidney problems are a result of the prednisone, but it is a little late to do anything about
that.
My rheumy referred me to a pain specialist who assured me that the pain could be controlled with hydrocodone (10mg) four times a day, combined with soma, three a day. I have been compliant with his instructions and have taken between three to four tablets per day, even though he advised me I could safely take up to six tablets a day. I have also have injections in my spine and two days ago had a nerve block in my neck.
As of the last of September, my prescript
ion has been changed to trammadol. Not only is it not providing much relief, I have developed a sort of restless leg syndrome and sleeping is almost impossible. I do understand the concern regarding drug abuse, however, isn't there anything available for someone like me? I'm not trying to get high, I would just like to have a life. :(
Hello, I have made a few more paragraphs in your post to make it a little easier to read. Some of our members have tracking problems when reading. Thanks.
Post Edited By Moderator (straydog) : 10/9/2014 11:28:44 AM (GMT-6)