Shari what part of Western Canada are you in? I am also in Western Canada-Castlegar BC.

New Here
 

My names is Kathy and was diagnosed with CRPS in early OCtober 2011. I had arthroscopic shoulder surgery on April 1, 2011 to repair a labrum tear, rotator cuff tear and an impingement. The surgery went well. However, afterwards, I had severe swelling and pain. This prevented me from progressing in PT. I had been given 3 months of anti-inflammatories and 2 cortisone shots but nothing really helped.

In July, the surgeon suspected a nerve related issue and sent for an EMG. The results were normal. I then had a ultrasoind guided cortisone injection in the shoulder joint. This did absolutely nothing. My surgeon still felt that it was nerve related and referred me to a physiatrist whith whom he works closely with. While I was waiting for my appointment, my spain spread to my forearm and hand and the horrendus burning began. I was immediately placed on gabapentin. ird day of the 2nd week, I was disoriented and confused so I weaned myself off. My doctor was not happy. He realized that I am very sensitive to medication so he changed me to 25 mg of Lyrica and upped it twice to 75 mg. My new doctor sent me for an EMG of the brachial plexus. It showed low amplitude but the doctor felt that it could be due to the swellimg so he then sent me for a cervical MRI and brachial plexus MRI. The result were 2 slightly bulging disks that had nothing to due with the pain.

I am not able to touch anything with my right hand without pain. Of course this is my dominant arm. My doctor escalated me up to a pain doctor in late October. I have had 1 stallate ganglion block that only produced relief for a few hours. The pain doctor also doubled my Lyrica to 150 mg daily.

The burning now has spread to the back of my bad shoulder and has become very painful. I am scheduled for another stellate ganglion block next Wednesday 12/21.

Welcome to the family Kat,
I've been dealing with this monster for a little over 4 years and I sympathize with you. Some in here have been suffering for much longer.
But this is a great place to come to even just to vent, yell, scream or maybe get some advice.
Stay in touch...:grouphug:

New to the site
 

I have been diagnosed with RSD in my left forearm and hand since Sept. 2011. This was a result of a distall bicep tendon repair, with a radial nerve decompression. I have a lot of pain in my forearm and hand with intense burning up and down the forearm and thumb. The swelling in my arm comes and goes along with red dots down at the wrist. I was put on Gabapentin, Naproxen, Cymbalta they seemed to do little for me. Then the stellate ganglion blocks were tried. I had 8 of these and only had relief for a few days with each. I had an EMG done with normal results. They are now trying a slow release gabapentin called Gralise. This seemed to take out the up and down pain level and made it more constant. The pain is still more than what I consider livable and I still have sleepless nights. I am also on Percocet twice a day that the Pain Management Doctor wants to take me off of. Without them though the pain is unbearable. They are also saying that the only recamendation that they have is for a peripheral nerve stimulator. It was described to me as more specific than a spinal cord stimulator. I am glad to see that there is somewhere that there are others with the same problem.

living with RSD
 

Hi everyone,

I was told by 2 doctors that i have RSD. Last December i had a slip and fall accident on the ice and i broke the tib/fib in 3 places. They had to put 2 bolts, 11 pins and a plate in to hold my ankle and leg together. Since then i've been in terrible pain, Swelling and discoloration to my foot and lower leg and very senesitive to touch along with being cold all the time.

I've been too so many doctors and they all tell me they can't help me and i don't know where to turn i was told that this spreads very fast and i can tell a difference in it everyday. i hardly have any range of motion in my foot because i've tried for almost a year to get a doctor to treat me and no luck.

I live in upper michigan (harrison, Mi) and at this point i cant take it my family doctor has no idea what to do but make me wait for different doctors that all tell me the same thing (i cant help you)..

Does anyone know of any doctors that caan help that are in michigan or anywhere for that matter....

Thank You Betty

Default living with RSD
Hi everyone,

I was told by 2 doctors that i have RSD. Last December i had a slip and fall accident on the ice and i broke the tib/fib in 3 places. They had to put 2 bolts, 11 pins and a plate in to hold my ankle and leg together. Since then i've been in terrible pain, Swelling and discoloration to my foot and lower leg and very senesitive to touch along with being cold all the time.

I've been too so many doctors and they all tell me they can't help me and i don't know where to turn i was told that this spreads very fast and i can tell a difference in it everyday. i hardly have any range of motion in my foot because i've tried for almost a year to get a doctor to treat me and no luck.

I live in upper michigan (harrison, Mi) and at this point i cant take it my family doctor has no idea what to do but make me wait for different doctors that all tell me the same thing (i cant help you)..

Does anyone know of any doctors that caan help that are in michigan or anywhere for that matter....

Thank You Betty

Hi Nnklynn,
I'm not in Mi but I read your post and wahted to welcome you to the family. I know how living with this monster sucks and being up north like you are doesn't help because cold weather makes things much worse. I hope you find the help and relief you need...:grouphug:

I'm to the point now where i'm getting very discourged. every doctor i have seen tells me the same thing (i cant help you) i have no pain control my family doctor has no idea how to treat me and as the weather gets colder. the pain gets worse to the point i bairly get any sleep. i'm in severe pain 24/7 either they cant help me or they wont take my health plan which is a community health plan......can anyone help me

Betty

Just a little about my fight to win!
 

Hello Everyone,

I am new to the site, but definitely not new to the beast we all know as RSD/CRSP. My life changed a little over 3 years ago when I had a fall down a flight of stairs injuring my right great toe. Like most nurses I didn't seek medical attention right away; I thought it was just a stubbed toe. Six months into it I noticed I still could not wear any shoes other than my work shoes and only those I could slide my feet in; my foot also had this bone growth on top. I consulted one of the surgeons in my department (I am an operating room nurse); she told me she that I had turf toe. Turf toe is sprain of the joint in the right great toe usually in foot ball. I did indeed have this and had to wear a boot for some time. The however did not fix the problem, so I was placed in a short leg case for a month. After the month was over I was taken to the operating room to remove what was bone spurs and a bunion that had grown on the anterior portion of my foot from the joint being stiff. Now the fun begins; the surgery miraculously got rid of the pain I was feeling, but not oddly a few weeks post-op I begin to have numbness, swelling and sensitivity to touch. My foot just wasn't getting any better and it was getting close to time to go back to work. I had all the x-rays, EMG's, Lumbar studies to see if it was my back; you name it. I started noticing that my foot would change colors red then blue and the wind would even hurt; I begin to think something is really wrong here. Finally one afternoon while I painfully hopped along at work after being forced to come back or be fired one of the Anesthesiologist with a history of pain management asked to see my foot and I showed her; she then wrote three letters on a piece of paper and told me to go look this up and come back to me. All I can say am I sat in front of the computer screen that night crying because I said finally I have an answer. I took that piece of paper to my doctor and my RSD journey began. I must say it has not been fun now that I have a diagnosis in had how do we treat it. I have yet to find anything that helps me. I have done the blocks; they helped for a while. I can't take a whole lot of meds and work too. The work thing is a whole other story I am now down to 2 days a week and barely can stand a whole 8 hour shift. Oh did I mention the RSD is now in both my feet, legs, hands, right arm and scapula; yeah it’s moving fast. I don't know if it is because I refuse to take it easy or what. Well that's it for now if anyone can offer advice as for as it goes for treatment I would really appreciate it. Thanks in advance.

New Member
 

Hi! My name is Shelby. I am 38 and have had RSD/CRPS for 8-9 years. I am on day 5 of a 7 day spinal stimulator trial, which for me, has worked amazingly well. I came across a post earlier where someone said one the trial was over, the pain returned almost immediately. Is that true? Not that I really expected it to "go away" but I was hoping for more of a break in between. I've been told my permanent surgery will not be for 2-3 weeks. I honestly only first heard of the stimulator a month ago when I went to a new doctor in town on my own (this is a work comp issue - and that's a whole other story) and have "survived" somehow on stellate ganglion nerve blocks, radiofrequency ablasions and numerous meds.

Any advice, thoughts, suggestions would be greatly appreciated!

Thank you!

Shelby