Hello everyone. I have used this site a little and wanted to introduce myself. I used hopeful as my user name because I refused to give up hope that someone will find a way to cure this disease. My CRSD started after a fall on the ice. I thought that my arm would hurt more if it was broken, so I did not get it checked. After 6 months a Dr. at work, I was a surgical RN, did a X-ray of my Left wrist. It was broken but healed. So I started to see him at his office. We tried to figure out why my arm was in so much pain, more than when it was broken. My arm did freeze up on me, so I had 3 different surgeries to get my movement back. Then my Dr. went on a convention about pain, to try and help me, that is where he heard of RSD. He was 98% sure that was what I had and sent me to a pain clinic. I was diagnosed with RSD in1998 about two and half years after this started. I went through most of the greiving period and now I am trying to do as much as I can. I do have many days that I still grieve my lost, however I have tried to look at the postive, and remember that there are many more people worst then me. Today was a really bad day of pain so I in my "pain room" so I have time to write this. I wanted to thank everyone who has posted on this site it has all ready help me. Hopeful

Hi, I was just diagnosed today with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color chaange (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, i am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks, especially if no improvement in function in the next 2 wks. I was just so stunned today, i am on an emotional roller coaster I couldn't even think of questions to ask.

The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like i am losing my mind.

Hello Stressedout and Welcome to Neurotalk!! You will meet many great peopl here who i'm sure will be more than happy to help you if they possibly can!!

I'm SO sorry to hear about everything that you have and are still continuing to go through!! I really hope that things start looking up for you soon and you are in my thoughts!!

I also suffer from RSD. It currently affects both of my arms and my left leg. I developed it when I was 12 years old after I fell down some stairs and sprained my ankle and am now 14. I have tried all sorts of medications and treatments but none have really worked - the only med that offers me some relief is Ketamine but my doctor doesn't like me taking it as he feels that it could affect my hormones etc because of my age. We are now considering trying other options such as Botox as a last resort.

What the WC nurse said is totally wrong!!!! Unfortunately, there is currently no cure for RSD however it CAN be managed with medications, nerve blocks etc! Remission means that the symptoms can go away for a period of time although the RSD isn't fully gone and can still flare back up again. Everyone with RSD is different and that makes it really hard for doctors to determine what will work for you as what works for one person, might not work for another. It can usually take a period of time for you to find the right treatment plan. You are pretty "lucky" that you got diagnosed so quickly - doctors usually say that the best chance of RSD going into remission is if it is caught within just over 3 months.

Have you tried Physical Therapy?? I KNOW that it is really painful but it is probably the one thing that will help you in the long run. If you aren't having PT at the moment, start off by doing some gentle exercises at home and then gradually build them up as and when you feel able to. With RSD, Doctors say that you either "Use it or lose it" and it is true!!!

I can relate to the feelings of being angry, frustrated and irratable and i'm sure many others can also!! RSD affects the Limbic part of the brain which is where moods and emotions is controlled. You are also fairly early into your RSD and you are probably still in denial which is VERY common!!! It took me over a year to start and accept that I have RSD and I dont think that I have fully accepted it now! Do you see a Psychologist?? They can help you come to terms with dealing with a diagnosis if you see one who knows what he/she is talking about!!!

Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through and just how scary it is to get diagnosed with such an horrible condition!!

Pain free hugs,
Alison

Hi Everyone, My chiropractor has been researching for the past 2 years to try and find help for me and my RSD. He talks to physicians, patients, and alternative medicine doctors all over the world. The other day, he suggested trying a Bio-Mat. I can understand how this can help and he has another patient that has been having relief from using it. The only problem is that there is no facility in my area that has it. The other patient purchased one for herself, but it costs $1700. I am not against paying that if it will help me, but I wanted to see if anyone has tried it and got relief. She is willing to rent the mat out to me for a day to see if I want to purchase one for myself. Let me know if any of you have tried this or heard that it may help. If I do purchase it, I will be back to let you know if it does help.

Hi Sue and Welcome.
No, I've never heard of a BioMat. I'll ask my Dr. and try to do some research. I've taken Biofeedback and know that is an excellent way to calm down. Also Breathing exercises, Visualization, Meditation, Of course Physical Therapy, and massage therapy. I found swimming to excellent, water needs to be 86 or warmer. Keep moving, stretching. I had frozen shoulder right after surgery, pt and massage took about ayear, but well worth it. Then the other shoulder, then left hand. Hand only got 50%, but and bend fingers some. Kept the toes from freezing up by swimming exercises, and following Drs. exercises.
I'm going to try HBOT as soon as my Dr. finishes his new clinic. Heard good things about it and talked to a couple of people. I have full body-3 years. Took 4 years to get diagnosed. I live in Arizona, where do you live?
I have learned so much from this forum and got so much support. Wonderful group of friends here that truly understand the loss we all face, pain, and change in our life. I'm grateful for my family, and friends. It's something that is so difficult to get your brain wrapped around, especially since our brains have those memory problems! Take care, and let us know what you find out. Again Welcome, happy you have joined our group. loretta

I just wanted to say that I have purchased the Bio-Mat last Friday. It was delivered on Thursday and I started using it on Friday night.

So far, I have used it two nights on the green settings. After the first night, and I know this sounds too good to be true, and I am a person that does not believe what I hear I need to try it to believe it, my fingers were loose. I did not have the stiffness like I have had for the past 7 years. It lasted until about 4 p.m. It was great. Yes, the pain is still there, but the pain will take the higher settings to alleviate the pain. I could turn over in bed without pain in my hip (RSD) and my back (normal back ache). My ankles that were constantly swollen from osteoarthritis were normal (no swelling until about 7 p.m. at night). I sound like a infomercial, but I am speaking the truth, I have not felt this good in years. My pain is still here, but I do have high hopes of it decreasing somewhat. I am slowly increasing the settings in the morning for about 30 minutes to the higher settings until I am comfortable with the highest setting which will alleviate the pain. I will keep everyone informed.

If anyone is interested in the bio-mat, let me know. I will give you the name of the lady that helped me with my purchase. She is extremely nice and helpful. She is a distributor. She has other clients that have RSD that purchased the mat. She is great. I have her name and number and email if you are interested. It is expensive, $1790 total price for the mat, pillow, and shipping. But so far, it is worth it. I have a better outlook on life in only two days.