Hi Franny and Welcome. My name is Loretta and I have had this 12 years following surgery. A sense of humor and gratitude is sooooo important to help us get thru this. The pain surely gives us enough negativity. I have both the burning and discoloration and also the cold clamly sweating. I used to have the daily shooting pain, spasms, uncontrolable jerking until I found the right Dr. and balanced my body with meds, anti-seizure med. It makes you tired and gain weight, but I was in constant jerking and electric jolts going thru my body and brain while sleeping and lifting my head off the pillow. I had to go up to 3200 mg of Neurotin for them to quit, and now I switched to the new drug Lyrica. It helps more with the pain. anti-depressants also work well with nerve pain. I also take an anti-anxiety med, because stress increases the symptons so much.I personally would rather take these meds and keep the opiates miminized. I take Vicodin. Hope we can be there for you too. In the city where I live, there is a monthly support meeting. You can go on line to national rsd orginization and put in your zip code and they can give you the closes one and a phone number to call. They have interesting speakers and talking to others who really understand is such a good thing. Hope today is a good day for you. Loretta

Hi Rita and Welcome, My name is Loretta and I have full body rsd. 12 years ago I had surgery and the next day my arm was swollen and then shoulder froze up and need lots of physcial Therapy. I was misdiagnosed and didn't really get diagnosed for 5-6 years. It only took the orthopedic surgeon less than a minute to diagnose rsd and confirm that with tests. You are in the very best situation to go into remission. The blocks work best if they are given with the first 6 months or even up to a year. I'm not a Dr. but this is common knowledge with this disorder. Sometimes it takes several blocks. An anetheologist usually gives the blocks. I would want the Dr. to have a lot of experience in this area. And Don't be in a hurry to let work comp. pressure you to sign off. This is a disorder that has no cure and best hope is to go in remission. I went in remission and then it came back with just a pull of a nerve in my hand while water skiing. It was after that, that I got a correct diagnosis. It spread from there to other hand and then both feet and legs, full body.I'm so sorry your fiance had this happen to him. My husband and married daughter have been so wonderful. I am going to soon apply for social security disability. I've waited as long as I can, this has totally disabled me from working in our business. My Dr. is supportive. My daughter is a court reporter so she gave me a name of an attorney that is good. It takes a long time to really see the consequences of the damage to your body. It's really more than that. Constant pain and the meds take their toll emotionally. So welcome to this forum- it's full of loving, compassionate women and men who have so much experience with this incredible disorder, there are a lot of Drs. that don't know much about rsd or have even heard of it. I have learned the most from this forum and my Dr. If your Dr. isn't experienced in the blocks, it's worth doing research and asking questions about their knowledge and experience. Hope all goes well with the block. Loretta

tjbird here and I hear where you are coming from. It is so hard to teach Dr's what is wrong. I live in the Mountains of Virginia and I even had a shrink tell me that the only thing he knew about RSD was that is was a "bear", haven't seen him since.

I'm new here, I've read everyone's intro posts and see the similarities those with RSD and caregivers go through. My wife Suzy contracted RSD in 2002 from a fall in which she broke her right wrist. She tripped and fell, at a family function in northern NJ, reaching out with her right hand as a brace when she fell. Her hand and arm turned blue as we rushed her to the hospital.

To give everyone an idea of my wife is that she is very stubborn and shy when dealing with doctors. I've known her for 29 years and in 22 of those years she may have went to the doctors twice. Her mother told me Suzy would cry as a child during doctor visits. Simply put, she doesn't care for doctors which have made these last 7 years shear hell. She was an athletic person who loved sports and even contact sports such as football and basketball.

At the hospital Suzy refused to stay the night and insisted on having the arm temporarily set and will have the arm looked after when we returned home to Washington DC suburb in Northern Virginia the next day. After two weeks under her doctor's care, the doctor told her and I that her arm was not set correctly and needed to be re-broke and set at the hospital. Suzy objected over the doctor's and my insistence that she check into the hospital. She insisted that the doctor numb her arm in her office and re-brake and set it there. Two doctor assistants remarked after the procedure that they've never seen any thing like it before.

Suzy did follow the doctors advice once the arm was reset and healed but never recovered. She soon went into PS in which I participated helping her stretch and move her locked wrist for a short time. Her pain increased and the doctors let her go. For 2 years she would go from one doctor to the next seeking relief of her pain and keeping me at arm's length, telling me everything was ok. After 2 years she told me she was diagnosed with RSD and was told this a year before. I, of course, researched this disease and went into denial, no way a disease like this can exist! At this time and several years after Suzy's RSD pain was not controlled at all. She only took aspirin for pain. Within the 3rd year Suzy started to loose her mind and started to hallucinate from the pain and became very paranoid. She complained to me the doctors refused to help her and more or less told her she was nuts and to pull herself up by the bootstraps and go see a shrink. I had my doubts about this, got angry and insisted that I take her to every doctor's visit.

I was shocked at these doctor visits. They would just brush her off as I sat there slacked jawed! With her right arm totally crippled, hairless, waxy white and cold, tears pouring down her cheeks, both of us begging for a plan to help her, we were brushed off again and again, told once more, yes she has RSD, prescribed Tylenol 3 and go see a shrink. We even made it to that Prestigious hospital in Baltimore, Maryland only to be treated very rudely and shown the door and all this from doctors who've told us they treat RSD.

Why are they doing this, there must be a reason. We would go to all these doctors with her records, MRIs, EMGs etc. and they would seem to get an attitude real quick not because we were rude because I was always dumb founded by the hole thing and was overly nice and calm. I just couldn't not figure it out! Suzy then started to explain to me the reason, in which I found hard to believe too. She believed it was because of her work which was the world's largest defense contractor and that she worked for their benefits department at their corporate headquarters for 15 years. She believed that it was her employment through her health insurance that was trying to dump her. She said she witnessed this over the years where a person was deemed worthless to the company because of a illness. She said, before it happened, that either the insurance company, who have representatives work full time at this large company, would make it difficult for treatment thus she would be unable to work so the company would dump her relieving the big company and the insurance company of a dead beat. I started to get hints that there maybe some merit to this when I explained 2 times with the insurance company that we are having a hard time finding a doctor who will treat her RSD. The insurance company told me both times they have never heard of RSD.

That time came when Suzy could no longer work and was put on short term disability-6 months, 4 years after her injury. At that time we found a doctor who appeared to want to treat her and prescribed some meds for her to control pain etc. Not the strong stuff but it was a start and we were exited about it. She saw Suzy 3 more time when the doctors where switched for some reason. This new doctor (the founder of the clinic) cut her meds down to one Vicodin per day and the weakest one at that. At the end of the month we went back to this doctor where I asked him what is the plan to help Suzy and he ignored me, I also asked him very nicely if there is no improvement with Suzy's condition will he sign for her long term disability which was coming due? He ignored me and left the room. He spent no more than 5 minutes with us. Two weeks later we found out that he ordered Suzy back to work, that she was fine and dandy. Suzy was terminated from work shortly there after.

Here's the kicker. When I picked up health insurance from my work to cover Suzy she immediately received treatment. The new doctor, in 2007, prescribed a very strong combination of drugs to help her in which it did. She was able to sleep through the night for the first time in years. She became much more normal. The doctor then sent her to George Washington Hospital for ketamine infusions and PS.

We've been in the process of getting Suzy SSDI for 2 years with an attorney with no luck. Senator Mark Warner of Virginia has stepped into her case to help her get the benefits that she earned from 30 years of work. My biggest fear is for us to lose our health insurance in this economic climate we are all in. I pay out of pocket $800 per month soon to rise to $1000. I really need her to receive medicare for our survival.

Suzy explained to me why she kept me in the dark those first couple of years. Her fear was that I'd leave her.

I forgot to mention is in those early years of neglect the RSD has spread from Suzy's arm to the other, both legs and her back. She is now in level 3.

Depending on where your RSD is. Aqua therapy is WONDERFUL. To just hang in a pool. Takes all the pressure off and help's one feel pretty darn good for awhile. After I get out of the pool, I can actually go to walmart by myself and manage in the wheel chair for quite awhile. It makes me feel great. Gathering information on the net that is congruent with your situation might prove to be benificial to you when you do see a physician, if they don't know too much about RSD. I'll have to go back to the rules of the forum to see if I can give you more detailed information or my e-mail address. As my memory fails me frequently. But I'm not going anywhere. Hope to see you in chat sometime. As I'm looking forward to chatting here as well. soft hugs.

i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure

Welcome maryam, very sorry about the diagnoses. When you do your research look closely at ketamine infusions. This may be the way for you to go since you are in the early stages in which this procedure has had good results. Get as many friends and family to help you and move as fast as you can manage.
ttp://rsdhealthcare.org/Institute_Announcement.html

so sorry ur so miserable. u have joined a great support group! i've been diagn for 15 mos. now. i think there's control - maybe remission - & not complete cure! everyone has great advice...we've all "been there kinda thing"! my prayers r w/u. get a good dr., helpful meds & depend on God!

Maryam71,

Don't take this laying down! If you have not done so already, get aggressive with persuing pain managment; blocks , meds and whatever else you can grab. You are in the golden zone where you at least have a fighting chance to attack this! After a few months, it may be too late to do much other than play catch-up...