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.

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

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.

I don't know where you are in relation to Atlanta but I would highly recommend Dr. James Fugedy, www.transcranialbrainstimulation.com

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

I don't know that much about scs but i jumped in to welcome you go the family...

Welcome Shelby!

So sorry you are joining our "club" but you have come to the right place to educate yourself which will make you a better self advocate.

Unfortunately, radiofrequency ablasions and spinal cord stimulators are two of the most risk producing procedures you can undergo with CRPS. Please put a hold on your permanent SCS implantation until you thoroughly educate yourself and conduct your own independent research. Once permanent damage and spread is caused by SCS it cannot be reversed.

Please consider other more state of the art and non-invasive treatment prior to undergoing a Spinal Cord Stimulator.

If you physician is unfamiliar with other treatment options, consider a second or even third opinion.

What else is out there? I've been to 3 different pain specialists, at least 10 different pt/ot, done the nerve blocks which give minimal relief and as of today am on 13 different medications. I really questioned doing the SCS but I personally have had such great results already that I can only imagine they would improve with a permanent implant that isn't moving around. My pain level is consistently at least an 8/10. My RSD/CRPS is in my left hand and arm, luckily not my dominate arm, but I cannot button, tie, shave with that hand, blowdry my hair, straighten it, open a package, nothing. Did no one else have any positive results with the SCS?

Dear Shelby,
Please see below.

http://neurotalk.psychcentral.com/thread161951.html

http://neurotalk.psychcentral.com/sh...timulator+CRPS

Have you tried tDCS. It is non-invasive with no side effects. If your doctor does not know about it maybe it is time for a second opinion.

Please give yourself time to thoroughly research the very real danger of SCS and CRPS.

Take care and Thinking of you!

P.S. You might consider starting a thread on the RSD Forum asking for input from folks with CRPS who have had spinal cord failures for examples of the risks.

Welcome Shelby!

I have RSD/CRPS in the right side of my face, both hands, left arm, left leg and possibly my right leg. I was losing the use of my hands. I had the trial on my left side and it was successful, so I had the SCS implanted in June 2011...actually two of them implanted (cervical and thoracic). My pain was reduced drastically and I regained the use of my hands. I am by no means pain-free, but pain reduction is huge when I was a 9/10 all the time.

Now, the thoracic SCS has not given me as much relief. In November, they went back in and changed the leads to paddle leads since they moved and were causing more pain. Right now I am having some increased pressure in my lower back and the dr is going to do a RFA procedure (if the anesthetic injections help). I still use the thoracic SCS and it helps, just not as much as it should.

The dr recommended the SCS for me since we had exhausted everything else. I do not regret my decision to get either one implanted. Yes, we are still tweaking one of them, but my pain is reduced. As soon as the stimulators are turned off, the pain is more intense. I was miserable when the trial was over and couldn't wait for the permanent to be implanted!

Everyone is different and responds to each treatment differently. You just need to take all the information you have been given and research it. That way you can make the best decision you can for yourself, and one that you can be comfortable with.

Wishing you all the best,
Nanc

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