I had a freak accident in December of 2009 where I broke my right hand and tore my posterior labrum cuff in my right shoulder (with 2 cysts that sit very close to the suprascapular nerve). The tingling, zapping, crushing, intense nerve pain started about a month later. It started in my shoulder and worked its way to my elbow then eventually to my right hand. My PCP was baffled, so she referred me out to neuro. The 1st neuro was a joke. He dx'd me with spinal stenosis and put me on gabapentin & did an EMG/NC study. He ordered a bunch of MRI's that showed three protruding discs in my C-4/5/6, and a herniation in my T-6/7. When I told him my pain started in my shoulder he blew me off. So, then my PCP referred me to Ortho. From ortho I had the shoulder MRI done and it confirmed my suspicion of the cuff tear. I was then referred to a new Othro surgeon because my 1st one retired. That Ortho was awesome and said that with the nerve pain, something else was going on. They did NOT recommend surgery on the cuff tear due to the chance of it tearing and fraying even more. Looking back I am glad, because I read all the stories here about RSD caused from surgery. Though, my shoulder causes immense pain. My right hand has an atrophy. It often feels ice cold, or burning hot, turns a dark shade of purple, gets edema, and loses total feeling.

Once the nerve pain made it to my hand, the nerve pain in my shoulder radiated to my neck and down my spine. My shoulder pops in and out of socket a lot. I can't type too much or write, or use my hand too much because of the numbness. The pain is ridiculous. There are days I can't even get out of bed. I am have damage to the Trigeminal nerve and it affects my lower and upper teeth. I am extremely sensitive to all weather changes, hot & cold, breezes, ect. My teeth are always so hypersensitive that I lost 80 lbs in 9 months (in 2010). From Ortho I was then referred to a wonderful, educated, Christian, caring pain mgt dr. He diagnosed me within 30 mins of his exam. He gave me a lot of info on it and started me on new meds and recommended PT. The PT helped a lot and I was put on Lyrica and the new Tramadol ER 300mg. They both worked great, but were too expensive, so I had to go back on gabapentin (which barely takes the edge off). I started a 6week long series of stellate and cervical nerve blocks that worked wonderfully. I can go about 4 months between blocks until I need them again. Last week I had another stellate and 3 in my c-spine. My dr is very compassionate and puts me under with light general sedation and fentanyl. I hardley feel a thing. We had to change my meds again because winter is the hardest time of year. I freeze like snow! My body cannot regulate it's internal temp correctly, so I am either freezing cold, or burning hot. I am not bothered much by clothing, except really heavy fleece or jackets that put weight on my shoulder. I am now taking 3,300 mg of gabapentin, 3 aleve a day, 150mg regular Tramadol, 60 mg of cymbalta (which I get for free from my dr), and 3 mg a day of xanax xr, and trazadone for sleep. I'll be going back next week for more blocks. It takes a few weeks of them to get to where I can function half normally without feeling like I am dying. My teeth are sensitive again, so I am not eating and losing more weight.

My husband walked out on my and our three daughters after 12 yrs of marriage (he cheated for 10 yrs and our marriage was ruined). I have no job and have been out of work for over a yr. My unemployment ended in July. We have started divorce proceedings, so the added stress of the divorce, the wintery weather, and trying to cope with my daughters has magnified the pain x1000000!!!!! I cannot type very long before I lose all feeling in my fingers and hand. My shoulder constantly hurts. I had to quit PT because my husband cut us off financially and our first hearing for the child and spousal support order was cancelled, so my dr is seeing me just for insurance and not charging me anything for copays or the injections! He is such a wonderful dr!!!!! I got really lucky with him! He is very familar with CRPS/RSD and treatments. He is always willing to play with my meds to find the most effective route of treatment.

Living with RSD is like living with a monster. It hurts so bad, drives me insane at times, and it's so not fair! None of us should be suffering like this! I hate it and I feel that other people do not understand what it is, why I am constantly in pain, or why I can no longer do activities I was able to do before. Right now because its so cold my neck and back are aching so much and I just want to roll into a ball and cry!!!!!! :-( Luckily, I found this group and enjoyed reading all the stories and the support. I though I would never find a support group. My tens unit used to help, but now it just puts my nerves on FIRE! I use my heating pad a lot, sometimes dry, sometimes moist. I am now a left side sleeper, with a body pillow, a memory foam beck pillow under my head, and an extra pillow to tuck under my arm so my shoulder doesn't "hang" down. That hurts! Now that I know that surgery can cause RSD to spread like a wildfire, I don't think I will opt for any kind of surgery anytime soon on my discs or the cuff tear. I do great with PT and am looking for a job (i'm a social worker, btw) so I can afford to pay my copays for PT.

Oh, I also get bad migraines that last for days and my face and head hurt so much. I suspect I have a slipped disc in my lumbar, but need an MRI to confirm it. If I do, i'll try the lumbar nerve blocks. Ok, well the hand is turning lavendar and going numb, and my scalp is tingling (the weirdest feeling ever), and it feels like someone just took an icepick to my teeth and crushed them, so I am off to bed now! Already took my meds. Sleep is the only break I get from the pain! It's to "meet" you all! I wish you all a less pain day tomorrow! Have a great evening everyone!

C