Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

Hello everyone!

New to the group, here's my story, quick and short.

I have RSD in the right (diagnosed in 7/06) & left (diagnosed in 11/06)
(wrist arm and hand) on both sides. I believe I hit stage 3 when it
spread to the left side. CRPS1 due a strian so they think. I was at
work and they believe it is due to a repetative motion injuy from
typing (an unbelieveable amount) or possibly from lifting heavy boxes
during this time.

Hi I guess I havent been here for a year or 2 I think I was Comenyaro before . I had RSD dxed when I was 14 there are names like Sudecks Atrophy etc etc but later I foubd they were all RSD my Neurosurgeon (who I respect so much ) still calls my RSD "Causalgia" which it is burning (much like a Third Degree burn when the nerves come back) I havent had trouble getting my meds from Doctors since 1983 though Pharmacies have wanted to be Drug Policemen ,if you want to know what I take I would tell the amounts privately (E Me) I tke Morphine Contin sand Morphine Ir Klonopin etc etc ,I have Major Depression but I figure most with RSD do ,hurting this bad is depressing ,I have tried blocks SGB and Epidural ,Sea Snail Venom and Puffer Fish and SCS and "Morphine Pump" but gor me just taking my meds helps most ,I am dependent but not an addict ,if I can ever answer any question or be of help E me ,my RSD has been diagnosed since 1968 but I'm sure many of you have had to wait years to get the right dx like me still I had RSD since 13 so thats like 39 years dx ,I keep good thoughts for you all Gentle Hug rsdno

This is to Septmystic, My name is loretta, and I have had RSD 10 years-full body now. I live is in Scottsdale, AZ There is a Mayo Clinic here, close to where I live. A friend of mine worked there and with 5 Drs. studing ketamine and RSD. Dr. Swartzman was one of the Drs. I for get the other names. One went back to Germany where they allow patients to under go a 5 day coma under ketamine. FDA allows ketamine doses less than that I believe for three days. Australia has been doing this procedure for some time. Swartzman I believe came from Australia. Any Dr. Swartzman and a 2nd Dr. from the Mayo ketamine trials are now at the Hershey hospital in Penn. I called but got no return call. I've heard there is a long wait list. The results vary , but are not permanent. Hope you can find help soon. I know this pain gets real old. I use music therapy, my cat, long soft fur and she loves to snuggle with me in bed. I love reading. This forum is wonderful to not only be able to express our thoughts but listen to others share their pain and disipair and their knowledge and encouragement and just enduring. I try to exercise daily, in the summer swim every day. I belong to a health club with indoor pool, I just haven't been able to get the energy to get there. It's only 1/2 mile away. Hope you find a Dr. soon. Loretta

Hello, I'm a Dental Assistant, who ended up with Carpal Tunnel Syndrome in both hands (mild CTS in the Lt. hand and severe CTS plus trigger finger in my Rt. hand which was unfortunely also my dominant hand) I had carpal tunnel and trigger finger release surgery on my Rt. hand in 3/06 and things went down hill after that! A few months after the surgery I started having severe burning pain and my hand was swollen twice it's normal size and turned bright red in color. In 10/06 I was diagnosed with R.S.D. and have been fighting Work Comp ever since (I.M.E. says it's recurrent CTS). My 3 doctors say R.S.D.

Do you experience any edema, white waxy skin or abnormal hair or nail growth??

Sorry for the really late reply, but yes, some of us experience all of those symptoms.

Hi, My name is Mary. My husband was dx with RSD/CRPS august 2009. He was waxy skin (although his color is "dusky" ), long, yellow curvy nails, long black hair on his arm, and edema in both legs. His RSD appeared after surgery, in his left arm, and it has moved into his chest and back and starting on the right side. We are currently trying to connect the edema to the RSD. We lnow it is connected, we just have to convince comp. Good luck to you!

Brief History for my wife: She was involved in a farm accident in December of 1995. As a result of this accident, she shattered her entire left elbow joint. From this original injury, came the on slaught of viscious neuropathic and orthopedic pain. Marilyn's left upper quadrant was the primary RSD focus. Over the years, the RSD pain has migrated--the migration was not rapid, but after more injuries, a couple of back surgeries, and most recently a tendon repair operation, she is a mess.

So, it's 12 years down the road and her pain is getting worse and more intense as the months pass. She is wearing down like an old alarm clock spring. I can see the fight in her spirit is diminishing. Marilyn takes an anti-epileptic for pain control. That's it. She has tried various other approaches, non which provided satisfactory.

A surgical sympathectomy, directly recommended by Dr. Schwartzman at the time, was done with moderate success. She was relieved of much pain for about 18-24 months. The pain came back as we knew it would. Marilyn said the relief for that time frame was worth it. Yes, the nerves that were severed did grow back, but the pain didn't appear to be any worse than prior to the sympathectomy. BTW--we researched the heck out of the procedure before deciding it was viable for Marilyn.

Marilyn also gets a Bier Block about every 8 or 9 months. Sometimes she can last a year after having the Bier Block. But Marilyn always knew that somewhere down the line, unless a cure was found, and that isn't in the cards yet, she would have to strongly considered an scs or pump situation for herself.

She is not a candidate for any ketamine infusion therapies. None, not outpatient, not inpatient, not Schwartzman's Germany bound procedure, not Harbut's protocol. Her heart reacts very badly top ketamine in any form. So that avenue of hope for Marilyn is shut out--much to my chagrin and hers as well.

I don't want to go on and on. As part of our research we would very much appreciate input for all those who have experience with any type of scs unit. We would also ask those who respond to let us know which manufacturer's unit was installed.

Thank you all for your kind responses so far.

johnthepainter (I am a house painter by trade)

Hi. My name is Julie and I am emailing from upstate NY. Having been dealing with a workman's comp inj to elbow & shoulder that never healed and I have recently been diagonsed with rsd. Looking forward to talking to people who understand what I am going thru.

Take care

Julie