GRRRRRRR Winter,
Living in the mountains for sure doesn't help. The cold temps really do a number on me. I really feel sorry for those who live far up north...

Hi, Im Nat. Im 22 years old and live in East Sussex in England. Just signed up.

About 18 months ago I was bitten on the wrist by my grandmothers (very old!) dog. The wrist healed up fine physically, but the pain never really went away. About a month after the bite, my wrist swelled right up and I wasnt able to move it. The doctor I saw wasnt my normal one, and he diagnosed it as tendinitis, gave me anti-inflamatories, and sent me on my way saying it should heal itself within a couple of weeks.

Well those couple of weeks went by and although the swelling lessened, the pain was still there so went back to my own doctor. Once again, I was given anti-inflamatories and told to come back in a month if it wasnt better, and to rest it as much as possible. The swelling finally went down but I was still unable to move the wrist properly and it hurt a lot!

Went back to the doctor, who still believed it was tendonitis and sent me to see a physiotherepist. She told me right away that she didnt think the doctors diagnosis was correct and gave me some excersizes to do to improve the movement in the wrist, and she also gave me a splint to wear whenever it was painful and at night. Within a couple of weeks she sent me back to the doctor saying there was no improvement and suggested looking further into it.

Over the next few months I was given tramadol for the pain, and sent to the local hospital for an xray (while still being told to splint the wrist as much as possible to prevent the tendons being injured further). The xray showed nothing unusual so they sent me for a blood test to rule out any infection. This came back clear too, so I was booked in for an MRI.

They strap the limb in place for an MRI and this was one of the most painful things they'd ever done. by this time it had been over year since the first doctors appointment, but as usual, the MRI scan also came back clear! so the hospital just sent me to another physiotherepist, and I went back to my own doctor.

The first appointment with this physio was a complete disaster. He pulled my wrist about and said to keep moving it and come back and see him in a weeks time. A couple of days later I had an appointment with my doctor, and he game me the diagnosis of RSD... but he didnt explain anything to me, he just told me to go on the internet and research it. He also said he would contact the physio and make sure this was taken into account. He also started me on Amatrpitalyn (sp?), 2 weeks on 1 tablet at night then 2 weeks on 2 tablets at night. So far its not had an effect, but I see the doctor again in a few days time.

My second physio appointment was a few days ago. I asked him about RSD and what it means and his explaination was "the brain thinks your arm hurts so we have to retrain it" and he once again made me go through a load of excersizes while pressing on my wrist and moving it about which is extremely painful! and at the end of the session he said "Well its obviously getting better because you dont look like you're in as much pain now as you did when we started". I was not very pleased and told him I was in a lot more pain now, and he didnt respond.

I have an appointment with the physio again tomorrow which im dreading, then friday im seeing my own doctor again and seeing another doctor at the hospital next tuesday!

Well thats my story so far... Im glad I finally have a real diagnosis, even if it isnt a good one. and im very glad there are others who understand, because my family and friends certainly dont... They think a few painkillers and everything will be back to normal! I just wish it were that easy!!

I want to say I am glad I found this site I am hoping I will meet some people that understand what this monster has done to all of us , and will support me and let me support them.
I am 43 years old I have full body RSD I was a nurse for over 25 years, a wheel chair lift on a van came done on my foot ( the weight of the van and lift was on my right foot) I was in a parking lot and they were redoing their parking lot thank goodness. It took 5 big guys to lift the van off my foot so they could pull me out. I was sent to Indy to a big hospital and was seen by a specialist who decided that immobilizing my right leg for 6 months was the right thing to do and to give me large doses of medication to keep me out of pain. They said I would never walk again, I was in a chair for 2 years. I worked hard and got to where I could walk again I went through many Drs. and treatments. spinal blocks and spinal cord stimulator large doses of pain medications, therapy. I am no longer able to work, I dont sleep and the pain you cant describe, I fell and my stimulator has to be taken out and replaced but I also have a bad heart so they are having problems. I cant find a dr that understands and knows what they are doing that can really help me....

Hi!
Just spent the whole day trying to write my story, only to have it time out on me and lost the works.
I'll have to try an other day.

Oh no! How frustrating!

May I suggest when you try again, you type it out in a Word Document, then copy and paste it to here. If you're not sure how to do that, type it out as an email, and instead of sending to any-one, save it to your drafts, and copy and paste it from there.

Also, when you log in each time, don't forget to click "remember me" to reduce the chance of this happening again.

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

Hi C,
Welcome to the family.
After reading your story my heart goes out to you. I'm sorry your hubby is such an *******.
Your doc sounds great so I'm glad for that. Fighting this monster sure sucks.
I just wanted to let you know someone read your story.
I'll be here like so many of us to listen and maybe help in some way.
Later...

Thank you for the welcome. And yes, my soon to be ex (not soon enough, lol) is a total jerk! It's icy cold today and freezing rain, so I stayed inside all day, except when I had to pick my kids up from school! I love my isotoner gloves, my scarf, and lots of layers with my ugg boots! They keep me warm! I haven't been able to eat, though...my tummy is used to not being fed enough, but I get headaches from not eating. As soon as I can figure out how to post a pic, i'll post some of my lovely discolored hand!

Thanks for the hugs, right back at ya!

I am 42yr old female. I have RSD in my left arm because of a surgery to create an AV Fistula for LDL Apheresis (Dialysis for Cholesterol) in 2006. I live in a suburb just outside of Oklahoma City, OK. I got a SCS a year ago this month. So far, every doctor I have seen in Oklahoma does will not prescribe narcotic medications, no matter what. So, needless to say, my daily pain level is pretty high. I have broken 3 of my teeth because of the lack of pain control. I grit my teeth when I am hurting very bad. I have gritted my teeth so hard and for so long, that I have broken 3 teeth. I am hoping to find other ways to decrease my pain. Thanks for taking the time to read my post.
Leah

Welcome to the family Leah,
So sorry to hear of what you're going thru.
I'm trying to stay away from narcotics and found that combining Lyrica and Cymbalta does fairly well.
I thought you'd like to know...