I developed RSD in my rt ankle after surgery for an injury sustained in a car accident. It's a personal choice how many nerve blocks you have, but my RSD din't spread UNTIL my nerve blocks. It spread up my leg and into my knee after my first block, and the area in my lower spine got MUCH worse after my second block. My doctor says if the pain doesn't stop after the first few blocks, they are not working, and any more are just expensive and don't help. No matter what happens, you are not alone. We all understand, and wish you the best.

heartbeatmom, responding to your post in the "Our Stories & Introductions" msdrea83- above, if I'm not mistaking has had very good results with ketamine infusions. My wife also received outpatient ketamine infusions with no success most likely (but not always) because she received her treatment 5 years after diagnoses. She broke her right wrist which developed into RSD.

I got full body RSD after cutting my index finger back in late 2007, Had surgery in September 2008 and by March 2009 my pain was down by half. I had reinjured the nerve during PT.

When the nerve grew back after the original injury if formed a neuroma in continuity. Basically, the nerve could no longer transmit the signals properly sending pain signals everywhere. Obviously, if I left it, the problem would continue as the nerve was damaged. So, I opted to have the nerve reconstructed (google this for more information).

The nerve was growing back just fine and then I damaged it during physical therapy.

I have had a 2nd surgery in late June 2009 to bury the nerve in bone and I am still waiting to see the outcome. I did not want to reconstruct the nerve again as it is painful when it regrows.

More and more doctors are having success with trying to fix the problem (injury to the nerve) and the symptoms can lessen or disappear. Find a good neurosurgeon.

Now researchers are thinking that both types of CRPS are due to nerve injuries.

Even people who have had nerve pain for many, many years can get relief from surgery.

Hope this helps.

All things are possible, for God!

Hi! I am glad you came to neurotalk. There are many great people here.
I got rsd at work while sustaining a severe twist to my dominant which is my left hand. It took docs 3 yrs. to finally diagnose it and now all they can do is try to manage the pain. I don't know how well it is helping because it seems like i am on so many meds and not sure what does what anymore.I have had rsd for 7 yrs. but like i said it took docs 3 yrs. to diagnose it.
Sorry that you have rsd but glad you came here.
Take care of yourself.

Sincerely,
Tracy TRacy

Hi stressedout,
Please don't give up. Stay with us, we can't do this alone. I have found that journeling helps me. Better yet, is a good psychiatrist. Mine happens to be a neurologist, and a pharmacologist, so he manages my pain-RSD. He has had other rsd patients.
I've never had to deal with WC, I've read a lot of stories about dealing with them. I personally would get an attorney to deal with them. Keep a record, times, and dates, especially if you go that route. There are others on this forum that have WC cases and have attorneys, that are more informed than myself.
One important thing is to exercise, stretch, swim-86 degree water. Swimming is my favorite thing to do and has actually kept me mobile-out of a wheelchair The worst thing is to do nothing. Being on the right meds is so important. There are pain management centers that are good for that.
I got RSD following benign breast surgery. Got frozen shoulder. If it hadn't been for physical therapy and massage therapy, I know I wouldn't have use of my arm. Then it crossed over and got frozen shoulder in the othr side. Had more therapy and got full use of that shoulder=arm. Then I had nerve injury to hand-frozen hand -had therapy but got only about half range of motion. I delayed therapy, because of wrong diagnosis. Then it moved to opposite hand, and got therapy right away and got full range of motion back. Same with both feet and legs. Swimming is such a great exercise, and easy on the body, has kept me mobile.
I'm so very sorry you have this monster. Can you get involved with a RSD support group where you live. The RSDSA organization has a list of groups and phone numbers of contact people. You can go on RSDSA on hte internet and type your zip code in and it will give you closest location and phone number of contact person.
To be on the right meds and correct amounts is imperative. My Dr. actually is involved with trial studies for pharmaceutical companies. I have been seeing him for 5 years.
There are ones on this forum that are and were WC patients. Some even have lifetime medical benefits. There are treatments that really help, but insurance companties don't cover, like massage therapy. That's why an attorney is important. Long term, this can be expensive and if you can get that from WC, that would be worth the fight.
Please stay in touch- we all care very much for each other. Your friend, loretta

Hi heartbeatmom,
I have had RSD for 13 years, mine was following surgery. Was a benign breast operation. Got frozen shoulder, with 100 physical therapy treatments, it went away. A year later showed up in other shoulder-more therapy went away for another year. Was water skiing and felt a nerve pull on original limb. Was misdiagnosed - then correctly diagnosed after several months. My hand is permanently paralyzed-about 50% usuage.
Then went to other hand-started therapy right away and have full use of right hand. Then moved to one foot-leg= then the other foot leg. I keep moving, swimming, stretching and have kept mobile all this time. It 's so important to be on right meds and have a good Dr. overseeing this. I see my Dr. once a month. I have been helped so much by my psychiatrist. WC should be allowing you to see a psych. a couple times a month. Mine just happens to be a neurologist, and pharmacologist. I found him in the yellow pages, can you believe that? It's true-the best Dr. I've ever been to.
If you don't have a Dr., you could give the general area where you live, and ask for Drs. names. Also, RSDSA may have some names. I was correctly diagnosed in 1 minute by flying from Arizona to a sports injury group in Oregon. That's how I found a sports injury Dr. and physical therapist here in AZ. Diamondbacks Baseball Team Orthopedic Dr. and the former pga (golf) therapist and he retired, set up his own physical therapy business. College or Sports Teams Base is a good start.
I attended the annual RSDSA meeting this spring, and they said there are 50,000 new RSD patients being diagnosed each year. There were 135 in attendance. One day was for patients and the next day was for medical professionals.
I hope you find some peace, medications do help with nerve pain. Anti=depressants, anti-anxiety, pain meds, sleeping is imperative to keep the nerve pain under control.
Take care, loretta

Hi heartbeatmom,
I have had RSD for 13 years, mine was following surgery. Was a benign breast operation. Got frozen shoulder, with 100 physical therapy treatments, it went away. A year later showed up in other shoulder-more therapy went away for another year. Was water skiing and felt a nerve pull on original limb. Was misdiagnosed - then correctly diagnosed after several months. My hand is permanently paralyzed-about 50% usuage.
Then went to other hand-started therapy right away and have full use of right hand. Then moved to one foot-leg= then the other foot leg. I keep moving, swimming, stretching and have kept mobile all this time. It 's so important to be on right meds and have a good Dr. overseeing this. I see my Dr. once a month. I have been helped so much by my psychiatrist. WC should be allowing you to see a psych. a couple times a month. Mine just happens to be a neurologist, and pharmacologist. I found him in the yellow pages, can you believe that? It's true-the best Dr. I've ever been to.
If you don't have a Dr., you could give the general area where you live, and ask for Drs. names. Also, RSDSA may have some names. I was correctly diagnosed in 1 minute by flying from Arizona to a sports injury group in Oregon. That's how I found a sports injury Dr. and physical therapist here in AZ. Diamondbacks Baseball Team Orthopedic Dr. and the former pga (golf) therapist and he retired, set up his own physical therapy business. College or Sports Teams Base is a good start.
I attended the annual RSDSA meeting this spring, and they said there are 50,000 new RSD patients being diagnosed each year. There were 135 in attendance. One day was for patients and the next day was for medical professionals.
I hope you find some peace, medications do help with nerve pain. Anti=depressants, anti-anxiety, pain meds, sleeping is imperative to keep the nerve pain under control.
Take care, loretta

Hi heartbeatmom,
I just read you live near Cleveland, Ohio. The Cleveland Clinic is one of the best hospitals in the country. Dr. Schwartzman helps RSD patients out of that hospital. That would be my first phone call. There is another Dr. specializing in RSD, but I don't remember the name. One of the gentlemen on this forum goes to him.
Please don't give up. How many children do you have and what ages? I have one daughter and son in law. They are 30. I'm grateful we had the healthy years together. We played tennis almost dailey, water skiied together, snow skied, traveled. did aerobic exercises together. Now we walk a little, and swim. They moved to Chicago and lived there 15 months. Then moved back, and are living with us for a while. We love them living with us,
From what I've read, almost all RSD is a result of some form of injury, surgery, or heart attack or stroke. For me, physical therapy and massage therapy saved my mobility.
Now that I have it full body, music, scented candles, stretching, swimming, reading, journaling, keeping in touch with friends, tv, bio-feedback, reading are all forms of distraction- takes our mind off burning pain. epson salt baths are helpful. There is a website called rsdrx that is excellent. The Dr. Hooshmand is retired now, but answers lots of questions under the part called puzzles. I hope some of this helps. I've been thinking of taking up numbered painting. Please know we all are here for you. loretta

yes, i was on ketamine orally for almost 3 years, then was denied the coma treatment, but i found a doctor in la that did the ketamine infusions. i've had two. the first one put me in full remission for approx 6 weeks. and i had a 2nd at the end of april... so its been... about 2 and a half months now of full remission and still going *fingers crossed*. the doctor is dr. thomas leverone. i have his contact info if you're interested. or message me and i can give you more info. until there's a cure i don't plan on not having more infusions when/if my pain comes back. its wonderful to wake up and be "normal" again.

I developed RSD from a car accident; I injured both knees. Next September, I'll have RSD for 14 years. I was diagnosed almost 3 years into the condition, by then it was too late and it had spread throughout the legs. Before diagnosis, the focus was on the initial knee injuries for which they started to cast the whole leg and then would operate on the knee next. Luckily they only managed to do one knee, because after surgery on the right knee, my leg had turned completely black. Nevertheless, the pain before surgery wasn't any different than the pain after surgery, it only got worse fast due to the surgery. By then it was far too late for both legs. I started to get problems with my arms too, but then treatment was started as I was diagnosed. My hands/arms were fine for years, but suddenly last year my arms and hands started to act up and I am being treated again for RSD there.

It sucks, that's about all I can say.