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've been participating for a few weeks now and guess it's time for an intro. 7/24/04 I was riding with my motorcycle group when I "met" a speeding truck in a one lane railroad underpass. Survived with a only a badly broken right leg, 3 1/2 weeks in hospital in so much pain. They sent me to a psychologist because I was crying so much. Second visit she finally agreed that I wasn't mental but actually was in pain! It didn't help that my mom had gone into the hospital 4 days before my accident and was close to dying. For the next 1 1/2 years my surgeon kept saying to give it another 6 months and the pain should go away as did 2 other ortho consults. Finally a physical therapist suggested I had RSD. My surgeon didn't believe it but my family doctor did. Another 6 months before any tests for nerve conduction then pain doctor I was referred to did 2 nerve blocks with no ease. Changed to another pain doctor who specializes in RSD (he's considered an outsider and strange by the established physican community) because he believes there is a correlation between the vascular & nervous system, heavy metal poisoning or inflammation may underly the RSD. It's interesting that recent research is beginning to support his therapies. He also found out I had deep vein thrombosis and have mild lupus and some weak ligaments. He founded the local South Carolina RSD support group! He calls me emotionally fragile and we finally have come to an understanding that I'm not bipolar but have post traumatic stress and am entitled to cry when I hurt.

It's been pretty difficult as you all know but those first few years were horrendous. My Mom was in the hospital, nursing homes and assisted living for 2 1/2 years and I had to move her 7 times. Thankfully she is now back a home. I got served with divorce papers 2 days after I got home from the hospital. My son was working and going to school full-time and he'd just threaten (tease) to put me in the psycho ward if I didn't stop crying. He doesn't want to know anything about RSD so doesn't understand or empathize, some times he gives me a hard time about not doing housework or yard work. He's been great about the big things around the house - reroofed it, insulated attic and crawlspace, painted decks & storage shed, etc. but neither he nor his girlfriend do much although they stay rent-free (that's another story).

I work for a large hospital system in employee benefits and am trying to hang in there until I can retire in 2015. I've already had to take a demotion due to the RSD and every week it seems like it becomes more difficult especially when I don't sleep from the pain. They just hired another person to take over 1/2 my responsibilities (it's now taking 3 people to do the work I did along before the accident!) and I've formally asked for flexible work hours and to work from home as my responsibilities now are 99% computer based. I've been working from home after hours and weekends for at least 15 years but they say we don't have a policy so they won't committ to accommodations under ADA even though the Department of Labor recognizes these accommodations as reasonable. So I just continue to track hours I work from home including days my manager okays for me to work at home in case they try to fire me for missing scheduled work hours.

I hate the pain, I hate not being able to do things I could before, I hate being exhausted all the time, I hate no one really understanding how hellish RSD is and how it affects every facet of living. But I appreciate that so far the RSD has not spread to other parts of my body, I appreciate my Mom for caring enough not to complain when I don't see her often enough now that she's homebound, I appreciate my sister who comes to help with Mom every vacation even while she is dealing herself with a life-threatening brain disorder, I appreciate my funny, loving dog (my pet therapy), I appreciate the sights and sounds of nature. I hope more answers/therapys come quickly for all of us. Lynnie

Lynnie, what a story! I am so sorry you had to go through it all, the accident, the excruciating pain, the way the RSD was discovered. I don't blame you for crying. Anyone would cry in your position. I still cry. It's nothing to be ashamed about.

If there's anything that RSD patients all have in common it's that they try very hard to keep their lives functional, and themselves functioning. If it's taking 3 people to do your job right now, then praise them for keeping you employed. Not many employers are so kind. Hang in there. I hope something can be accomplished with the ADA accomodations.

I am hoping along with you that the RSD will stay contained in one part of your body, so you won't have to give up anything else in your life.

I admire you for seeing the good in your life too.

Welcome to the forum!!!

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.

Excerpt from Frogga's intro.: [But at the same time - I now have a life - which is something I never considered possible. I have friends, I go out, I try and be as "normal" as possible. I even went on holiday last summer with my friends. I will never stop hoping that there is a cure or some relief somewhere out there - but my life is not going to stop whilst I wait for it.]

******

Wow Frogga, that is some story. I read every word: it's poignant, and you tell it so eloquently. You must be a very strong girl. I don't know that I was ever that strong, but certainly I know I wasn't at age 21. You are special.

Please keep telling your story. It speaks of horrible pain, but of hope for having a life despite the pain. That is what I strive for, and try to speak about. I too have RSD, have had it for 15 years. I have started a blog (I know, so has everyone else) to try to help people who haven't found the peace in their pain that you have. Not to say we're Pollyannas, I'm sure you have your bad days, I know I do, but we try to move forward anyway. That's what it's all about (and good for your mum for instilling that in you), moving forward - even if you take baby steps, keep moving forward. Or else you get stuck looking backwards at all the things that you CAN'T do, instead of focusing on what you CAN do.

Anyway, I'm very impressed.**. I SO want to help even just one person not sink into the depression that I did.

I hope to hear from you,

Judy

Welcome Judy. I have RSD for almost 15 years too. Where can we read your blog?