First, I would like to thank everybody else for posting their stories. I've read lots of articles about CRPS, but this forum is much more informative.

About 2.5 years ago, I gave a blood sample at work. Unlike many other people posting in this forum, I did not feel a nerve being hit and the blood sampling was uneventful. However, within 2 hours, my whole right arm (from the elbow down) ached painfully. Later, I developed swelling at the sight of venipuncture and a large bruise about 2 inches from the site. Within a week, I had numbness, tingling, and weakness in my right arm. Since then, I've had cold sensitivity, temperature changes, mild color changes, occasional burning/electric pain, and mild swelling.

Fast forward to 2 years later, and I wake up one day to notice that my right shoulder has dropped in elevation, so that it sits significantly lower than my left. After a few trips to the doctors/neurologist and several MRIs, I am told that the muscles in my shoulder and back are 'dystonic' (essentially the nerves are telling them to constantly contract).

I am getting botox for my back and shoulder muscles, but am no longer on any treatment for my neuropathy (or possible CRPS). It is usually fairly mild, however I do have flair-ups which make work (i'm a molecular biologist) very hard. I am thinking of seeing a CRPS specialist, because not having a diagnosis while my symptoms seem to grow is very frustrating.

welcome to all
my name is carrie i have had rsd for 11 yrs i am 27 years old and have full body rsd organ involment . welcome to our forum i hope that you guys jump right and ask any quetions that you guys have there are alot of great people here and alot of information goin around. i am so sorry that you any of us are
goin through this

hope we talk more
carrie

I was diagnosed 4 weeks ago with "probable" CRPS. I had a rotator cuff repair in July 08, 4 months after a work injury. After months of physical therapy, my pain kept increasing. My range of motion was also worse than before the surgery. I developed swelling in the collar bone area and the side of my neck along with radiating pain from my ear down to my elbow, a creepy-crawly feeling across the back of my shoulder and tingling in the fingers. My surgeon said he was not concerned about my pain that he was more concerned with my function(which I thought was odd because I went to him for pain...my function was not very limited before the surgery). At the urging of PT he sent me for a cervical mri and an emg. That showed slight herniation of c4c5 and that I had carpal tunnel and cubital tunnel syndrome so he sent me to a pain specialist for epidural injections. The pain specialist did not think the disc were significant enough to cause my pain and symptoms, examined me thoroughly and said he thought I may have CRPS due to my blotchy skin and weird symtoms. He started me on neurontin and refered me to a hand specialist for my hand symtoms. The hand specialist said he didn't think I had CRPS and gave me a cortisone injection for carpal tunnel. That was 4 days ago. Today I have a deep stabbing, burning type pain in the palm of my hand and can barely bend my fingers. Is this normal after a cortsone injection? Also my WC adjuster called a little while ago and said that I needed to go for an IME before he would approve any more treatments. He is setting up the appointment now. I guess the fun is just beginning. I don't want this to be CRPS. I am very greatful that someone is finally addressing my pain and hope that WC does not impeed any progress I may make with the PM Dr. Sorry for rambling I am just tired and frustrated.

I just wrote a brief intro on the general site. This seems to be difficult for me.

I was diagnosed with RSD in June, 2009 after 5 months of pain and terror. I initially thought I had injured my right knee while working out. That was in February. In March I visited my internist who wrote orders for PT and gave me names of several physical therapists. I guess I had about 5 sessions and continued to get progressively worse. By this time I was using a cane and experiencing pain and loss of ROM in both knees. I got a referral to an orthopod who found nothing on the X-rays, gave me an NSAID, and a shot of steriod. I was barely able to walk to the car and wasn't able to drive again until September, 2009. I saw the same doc for a follow up and although he seemed to dismiss me as a lunatic whose complaints were just somatic in nature, I somehow persuaded him to order an MRI of both knees. The MRI was essetially normal with a bit of chondromalacia and some cysts. The guy was now truly convinced that there was nothing physically wrong with me. I continued to get worse. My knees felt like they were being eaten with acid from the inside out. The more pain I experienced, the less I moved. My muscles began to atrophy in a relatively short period of time. I once again I visited my internist (someone I have seen for years and who knows me to be one who is rarely ill). She took me seriously and after seeing many specialists, undergoing a plethora of tests and a hospitalization I was diagnosed with RSD. I was now almost bedridden and needed help with basic things. With the help of friends, family, and some excellent health care givers (excluding the orthopod), I am once again functional. I am by no means pain free and I have flare ups. The flare ups do however seem to be less in frequency and duration.

I am thrilled to have found this site. I still sometimes can't believe this has happened to me and mourn my limitations. But I am truly thankful for the functionality I have regained and try not to take anything for granted. I hope I can find as well as provide some comfort.

To health.

I am very new to this all. I just need some support.
Last fall I was diagnosed w/ RSD, but I don't have any of the major symptoms (other than the pain in both of my arms, shoulder down, that started in my right wrist 6 months after I had carpal tunnel surgery, and some allodynia). The doctors are baffled by my lack of sensitivity to hot and cold, and I have burning pain only occassionally. No excessively dry skin or sweating and no redness.
I am in pain all the time, like all of u, and am having difficulty just accepting this disease.
I can't work because of the pain and haven't worked since last July, when the pain got too bad.
I feel blessed to have found this forum, where I can talk to others in worse shape than me, no offence.

Sarah

Hello Sarah and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm sorry to hear about everything that you have and are still going through!! I really hope that things start getting better for you soon and you are in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of treatments to try and help but none have helped that much really. I am now on Oral Ketamine although my doctor doesnt like me taking it too much as he feels that it could mess up my hormones because of my age etc.

You dont have to have all of the symptoms of RSD to get diagnosed. I think when my Doctor diagnosed me, he said that you have to have at least 5 of the symptoms to get diagnosed. I have all of the symptoms of RSD and when I was diagnosed, my doctor told me that I was the first case he had seen in over 20 years that was text book RSD - it's a shame that my other Doctors didn't pick up on it before then!!!

Everyone is different when it comes to dealing with this awful disease and no two people are the same which makes it really hard for Doctors to diagnsose and treat it properly. Some people might have most of the symptoms whilst others might have them all etc.

If you dont truly believe your diagnosis, I would consider getting a second opinion if you haven't already. I KNOW it can be very stressful but it would probably put your mind at rest and you need a doctor that you feel comfortable with and that knows about RSD.

Please feel free to post anywhere on the forum and ask any questions you may/will have!! No question is silly and im sure someone will try and help you if they can!! Everyone is so nice here and I honestly dont know what I would do without this forum!!!

I understand what you are saying about having a hard time accepting this disease and im sure many others too do!!! I had a real hard time accepting that I had RSD and would literally spend hours in bed just crying and I didnt go out of the house for months because I didn't feel up to it and didn't want others to see me as being 'different'!!!! I got really depressed and it got to the point where I actually wished that I was alive. I eventually found a nice Psychologist in London and she really helped me and gave me coping mechanisms to try and help. I still get depressed, especially if I cant do things that my friends can but im not as bad as I was and can control it a little better. I also have my Psychologist's email so I can talk to her whenever I need/want to.

Do you see a Psychologist?? It might be something to look into if you dont already as they can really help. I actually want to be a Psychologist when I am older and am trying to get accepted onto a Health and Social Care Course!! This disease has taught me a lot and I want to try and help others who are in the same situation as me. There's a few people on here that see a Psychologist/Psychiatrist to help them come to terms with their illness so it might be worthwhile speaking to them about it.

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!!

Alison.

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!!!

Hello out there! I was just diagnosed with CRPS a week and a half ago. I live in the great Pacific NW also!! So thankful to find an active site. I am sort of going crazy trying to find out everything I can and mostly what is normal and what isn't.
I also have fibromyalgia and systemic lupus, but the lupus has been quiet lately (thankfully).
I fell off my bicycle last September and hurt my foot. It just never got better and in fact is worse. Had multiple MRI's and x-rays but they couldn't find anything broken, just soft tissue swelling and inflammation. I'm relieved to have a diagnosis, but not necessarily happy with it
The area is my left foot/ankle, but it seems to be spreading up my leg. The swelling is awful and the tenderness is exquisite. My doc put me on Celebrex which is helping with the pain, but still get shooters and lots of burning, aching type pain. I go back to the doc tomorrow to see what is next. This is not fun and I'm ready to quit playing.
Miz Lizzie aka Queen Foothurtsalot

lizzie

wanted to welcome you and come down and join any time you feel like it. ask away.. i ahev had full body RSd for 11 yrs..
im sorry that we had to meet this way..

come down and join the crowd.
ask anything and everything.. there are alot of great people here

welcome again

carrie