New here. I typed my intro only to lose it before I posted. So I will give a very short version without all the good details. First, my username means Friend in Hawaiian. I am not Hawaiian but lived on the island.

My RSD started from a flight while on business travel. Got a blood clot (DVT) which was left untreated bec was un diagnosed by WC doc. Went months getting worse, while tossed around by docs. My WC doc couldn't give me a dx unless it was confirmed, but sometimes some are too small don't show on ultrasound. Was in ER also numerous times only to be sent home in same or worse than when I went in.

FYI - I work in clinical research and around lots of docs and many years in health industry. It was my coworker MD's that finally used their influence to get the WC to go with their suggestion/referral to another Friend MD who is Chief Director at a teaching hospital. Lots of diagnostic tests/scans, etc, etc first thought was Lymphedemia but finally diagnosed with RSD.

Had no support from family or friends and no one to turn too, so a few times had to call ambulance to lift me in a cage, call "scooper"to transport me to ER. Only to get doped up bec they didn't know what to do, even though I went to the same hospital my file is at, until they finally called my PM doc the next day. Oh need to mention, in so much pain, had to have a catheter and they never gave me an IV for fluids. When I was finally released, couldn't walk, sent home with a walker and major doped up.

Marriage was already on rocks and only got worse. Meds take me 2 months to adjust to function again, and this only put more strain on marriage. After some PT, med trials and procedures, finally had some kind of normalcy in life. This only made me see how bad the marriage got. I decided screw you, and packed my belongings and shipped them and me to an island-Hawaii, where I was far enough away from non-supports and long distance calls to harrass me about my actions. I finally decided to think of me, selfishly for once.

While in Hawaii - I loved it, my body loved it. I felt good: was able to walk, take a bus, relax on beach, less symptomatic - wow, i thought. Again everyone chose to not understand why i was happy. Well, after almost a year and pending judge signature on divorse papers, my husband had a huge wake up call and made changes. We decided one last time (3rd separation/3rd marriage therapist) to try to work out our issues. I must give all credit to GOD for changing both our hearts, the counselor/pastor for sharing with us tools what a healthly marriage is. We stopped our divorce in the nick of time before was officially over and working to develop a new marriage, which is going good.

Since I returned to the mainland, however, any strides in hawaii R gone, my health has gone down hill. Doc wants to tweek my meds and I'm scheduled for another LSB. I surely miss the island and love living in middle of an ocean and everything hawaii gave me, but my husband won't move there, have a daughter who is a senior this year, and with the economy, work is hard to find, here and harder on an island.

Looking for work here, interviews coming up (why can't have change in meds) and have to fight to continue to be able to work (which every1 knows) can be a challenge. My husband was recently laid off and unemployment for both of us don't cover our expenses and our 2 (out 5 children) at home. I do have an atty and a QME schedule in a few months. RSD dx in early 2007, started in one leg and spread to both full legs, both arms and upon returning to mainland started in face around lips and one cheek. The electrical zaps also returned two-fold especially at night in my legs and head. I have these brown scars used to be sores on both legs and middle of my back - don't know what they are, do you??

Liven hour by hour -
Mahalo for reading my story.

AiKane
i just wanted to say welcome and glad that you found us. i am so sorry that you have had such a ruff time with the rsd. i have had rsd full body and organ involvement for 11 yrs. i was 16 at the time so it was very hard for me to get DX period, so i know how you feel. i bet hawaii was awsome i went there as a kid before i got sick and loved it .. didnt want to go home

welcome again jump and join the party

carrie

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 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.

Hello everyone,

My boyfriend has had RSD/CRPS for 5 years now. Recently it has spread and mde his pain worse where he is unble to work and travel for longer that 30 minutes.

He is prescribed:
Percocet 5 ml 3 times a day
Lyrica was 75ml 2x a day but now it will be 100 ml 3 x
Soma, didn't work so he's off that
Physical Therapy was 3 x a week but they determined it wasn't working and discharged him.

I am trying to be supportive and beleive me it is the hardest thing in the world that I have been given to tackle. I am doing what I can but the most frustrting part came today when the doctor wouldn't listen to him. I was right there in the room with them and the doctor ignored everything my BF was telling him.

I found a great website I am working with to raise research funds. I just need to hear from others with and without RSD and how I can be a better supporter.

Thank you.

Hi Quackingmoose and Welcome to Neurotalk - it is great to have you here and you will meet many great people who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm SO sorry to hear that your BF suffers from RSD also! I really hope that things start getting better for him real soon and you are both in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was just 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of medications and procedures and none have really worked that well for me. I am now on Ketamine as a last resort but my doctor doesn't like me taking it as he feels it could mess up my hormones because of my age etc.

I cant imagine how hard it must be for you as a Caregiver to have to watch your BF go through all of this and not be able to help and make him better - it must be the hardest thing in the World ! My mum is my caregiver and I honestly dont know what I would do without her, she has helped me through a lot of the rough times and has been the only person in my family that has really supported me 100% through all of this. She posts on the forum sometimes when I am unable to so if you would like me to get her to PM you, please let me know as i'm sure she will be happy to as she understands a lot of the things you are having to deal with as well!!!!

I give you a lot of credit for sticking by your BF and trying to support him - I know its hard and it takes a strong person to do that!! Please dont ever be afraid to let your emotions out - I think sometimes people forget that RSD affects the whole family, not just the person suffering and it's important that you vent all of your feelings. We have a Caregivers section on the forum so please feel free to post there should you wish as it's important that YOU get support also!!!!

I'm sorry to hear that PT isn't working for your BF. I can relate. PT didn't help me at first, then it started helping a bit and I was able to walk where as before I was wheelchair bound but didn't cure the pain and it isn't workling at all for me now. We are looking at other options to try as a last resort and I think we will probably try Botox as I have severe Dystonia's (movement disorder). Please tell your BF to keep moving as much as possible though - I KNOW it is really painful, trust me, I do but it is probably the one thing that will help in the long run - even if it doesn't feel like it now!!! My Doctor always says that we either have to use our RSD limbs as much as possible or loose them and it's true!!!!

I have been on Lyrica also. I didn't help me and I put about 25lbs on whilst on it so eventually, we decided that it was best if I come off it. I really hope that it helps your BF and that he gets some much needed pain relief!!! Everyone is different when it comes to dealing with this condition so it makes it hard for doctors to determine what will work and what wont unfortunately.

Take care and I hope to see you around the forum more soon!!! If you need anything, please dont be afraid to ask because I DO understand some of what you are going through unfortunately!!

I hope things start getting better for you soon and please dont give up hope!

Alison