Hi Lori Lee,
I hope this reply finds you having a better day.
I just wanted to write to show support for you. We all go through the Denial Stages that Jo wrote about. Only having this for 2 months now or so, it's all really new to you.
Unfortunately, RSD just really sucks. It sounds like you have a doctor that recognizes the condition and has you taking the common drugs we all know about. It seems that Cymbalta, Neurontin and Lyrica - people react to some of them but seem to respond to one of them. I'm glad that Lyrica works - even if you're foggy from it.
Please know that there are other options out there for you. I just recently had a spinal cord stimulator implanted. This blocks the pain signals to the brain - thus reducing the pain medications needed. For me, this has taken away all of the sensitivity. Since this is only the first day back to work for me, I've only just stopped taking the narcotics. I'm still on the neurontin and muscle relaxers but will work in the next month or so to titrate down. I don't have a clear sense as to how much of the pain it has reduced. But, I can wear a long sleeved shirt without a pain patch. That's huge to start with...
My surgeon told me that my saving grace is that I'm able to work and move my arm regularly. As Alison said, it's going to hurt not matter what you're doing.
I went through the sympathetic blocks - which did nothing for me. I've tried so many medications - as many of us have. I think it's just finding what will work for you. HBOT works for Diane, but might now work for you. The stimulator seems to work for me... Just don't give up trying to find what will give you relief. There is something out there... You just need to find it.
You're not losing your mind, you don't need to check into a rehab facility. It'll just take time to digest all of this. It's not easy being in pain. But, you'll get to the point of saying "This thing is not going to beat me! I will get back to work."
There are so many people out there that are going through what you are. You have support from people who know what you're going through.
Quote:
Originally Posted by llrn7470
Hey all...have something to run by the experienced (or at least more experienced than me.)
I was diagnosed with RSD a month and a half ago. I have had four lumbar sympathetic blocks, but for some reason, they do not want to do any more. I am on Lyrica, MS Contin, Lexapro, Wellbutrin; failed Cymbalta and Neurontin due to side effects. Overall, my symptoms are less compared with onset, but still fairly limiting.
Please, please, please don't take the following wrong; I couldn't be more appreciative of the help and the Lyrica makes me foggy enough to offend without being really aware.
Am I seriously going to have this forever? Really? I'm not going to get better? I'm not going back to work? For some reason, I thought that for me this was going to be a month or two and I would be all better. Suddenly, I feel panic-y and hysterical, like my life that I've worked for for 38 years is down the toilet and I will be a burden on my family forever. I didn't think this would happen to me. I know this sounds, maybe, I don't know, arrogant...but I couldn't imagine this was going to be permanent for me.
Have I been in denial all of this time? How long should I have it until I should accept that it is permanent and that there is not a real chance of going back to my old life? I need to know when it's time to accept it as permanent thing or when it's time to keep fighting and looking for the "Holy Grail" treatment for me.
This may be a minor freakout, but the anxiety is killing me and I'm starting to have thoughts that I should just check in to an inpatient rehab and lay there til the bedsores kill me. I fear I am losing it.
Any thought as to how long I should wait before booking my bed?
Lori Lee  |