RSD reflex sympathetic dystophy-can you advise?

hi, i have r.s.d. myself, i have had it for 3 years now, i got it as a result of ligement and tendon reconstruction on my ankel. i had the surgey done aug.6 and was diognosed with r.s.d. aug.16 the same year.
so only 10 days went by before we started treatment. i live in ny, and have been to tons of pain speicalists rsd specialists, and unfortanly i was told for my case, i have rsd and cprs. and that there r 5% of people with rsd that will not respond to any treatment, unfortanly he siad i am in that 5%. i have had over 30 nevre blocks 20 epis. im on enough morphine vicedens lyrica and muscle relaxers to kill 4 elephants with a single days worth of meds i take lol. i have talked to a few people online who have r.s.d. who have had sucsess with spinal cord stimulators. it didnt work for me but rember im in the 5%. physical theropy is a big role in rsd treatment. ur muscles atrphy and die, so u have t o keep using them so u dont lose them. i know it hurts like hell but the moment u stop using them ur screwed. my rsd is affecting my heart. rsd can effect all internal organs. i have sezuours from the rsd as well. rsd is diffrent for evry one, so u jsut have to try evrything, what dosent work for some or most may work for you.. hot and cold threory is strongly advised against with rsd. ice is strongly adviced against with rsd. i have had rf, burnign done, for me that made me worse off. rsd can spread and for a good majority of people it dose, mine started in my right ankle and is in my right foot from toe to hip acrosed my lower back and abdomen down to the tose on my left foot. There is No cure for r.s.d. the only thing the docs can do is try and treat the pain.. medications nevre blocks epidurs sps rf burning pain pumps. along with physical theropy. you will be doing pt. for the rest of your life. its jsut something your gonna have to fight threw the pain and do it. i know its not easy, its anything but easy. but its something we have to do. rsd can kill you. rsd is a nerologic disorder along with being an auto-imune disorder. you will catch colds alot easyer than you used too. so you have to be carefull. rsd is very very serous and like i said can kill. but its diffrent from evry one and you have to make doctors listen to you. rsd is rare and a lot of doctors dont know anything about it,. your best friend will be your pain management doctor and a good pain managment doctor is priceless. rsd is a debilitating desies, and some states (ny) will automaticly give u ssi if u have it, other states you may have a very very hard time getting it. same for ssd if u applie for it. the trick is to not give up and be sturbin and fight like hell and dont let rsd win. unfortanly, the docs say people with rsd are in jsut as much pain or more than a person dying from cansor, the shitty part is, the only thing we ccan do is try and get pain meds to help. there is no takeing antibiotics to make us better, and when it comes to haveing something a lot of docs have no clue. getting the right meds can be a life long battle, you just cant give up. u have to fight kick scream and keep pushing.
i hope this helps you some and i hope your not freaked out and panicing,
im pretty blunt and to the point about what rsd dose but i find sometimes the truth in a simple hard to swallow way is the best some times.
rember its not in your head and the pain is real, ( some docs will say your imagining it evon though your doc says you have it simply becuse they know nothing about rsd or dont belive in it deponding on were you live.
ive had this for 3 years, and in fighting for my own treatment (still am) ive had to become and exspert on rsd and educat the doctors. you will have to do this too. the more you know about what you have the better off you will be. if theres any questions you have pls jsut ask, i will answer any and all and try and help as much as i can
25 years old female rsd fighter 3 years and counting

my name is mike moore and i want to become an rsd speacialist my father got rsd 10 years ago and the best advise i can give to you is any pain medicine your docter prescribes to you always make sure tht it is not addictive and try to keep your self busy as much as you can without being too phisical for long periods of time. and make sure tht you try to work out often the reason why keeping yourself busy doing things you like too do is tht over 80% of RSD patients have a thought to attempt to commit suiscide do to the pain. and just because im 16 years old dosnt mean i dont know what im talking about my father was preety much the most severe case of rsd he was practicully a lab rat he has been on almost every medicin perkaset morphine lidacain ect and i want you too know if you can stick it out long enough it will get better there are three stages of RSD the first stage is when your in total pain the second stage is when it travels all through out your body and the pain gets worse the third stage is good your body becomes to relaxe a little bit more the nerves calm down and you are no longer in dying agony when ever your touched but there still will be pain now this will take anyware from 9-18 years to get through all three stages but it all depends on how phisical you are and how well you attempt to get your body in shape now if you lay in bed all day long you may never come to see the third stage

I am 42 yr. old with a background in clinical sience with quite a few yrs in the healthcare field. I also suffer from advanced intractable RSDS. There is really only one treatment for advanced most severe cases. Ketamine infusions or the Ketamine coma {BTW..Coma Not approved in the US}. There are substanciated proof from Germany, Russia, Netherlands, Japan, Great Britain and the US. You should research this. Unfortunately just knowing or living with someone is really not enough. some of what you said is very correct, PT=physical therapy. Also anyone who suffers from intractable pain, kidney dysfunction, hyperhidrosis, IBS, Syncopic episodes, changes in vision and speech, hypothallimus dysregulation, chronic fatigue, severe chronic headaches, memory loss,cognition difficulties, severe myoclonus, edema, cellulitis,FUO, circulatory problems,tremors, skin lesions, orthostatic hypotension, heart pallipatations, joint pain, hyperventalation, neuropathic pain, and immune issuses. Its very difficult to get out of bed most days. Though you may try to do your best. You need to know that this is a very serious neurological condition. Remember this an autonomic nervous system disorder. You dont control it. It controls you. Ive been down the "Im going to control this Im strong." It has nothing to do with being a weak or strong willed person. But, it is an illness and should be treated as one. Most people with a true RSD will not get to the point Im at. The best advice I can give you my young friend is study and work hard to get into Med school. If you're lucky you will do your neurology internship under the illustrious Dr. Robert Schwartzman. Just google him. His credentials speak for themself. Good Luck to you Mike and your father.

Doc Rhodes treats RSD with a PAIN FREE, non-invasive treatment.


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hey does anyone out there with rsds ever have the pain go to a certain area then other areas feel tingly like asleep while still other areas feel numb like shot with novicane? i have a 12 yr old that had her ankle and heel broke and the other side sprained in a bike accident. she had pain but when she got her cast off the pain was unbearable to her calf then her knee then her thigh. she had first nerve block nothing happened still pain from air hitting it. she had second one and we wound up at chop's in philly cause the pain was even worse. the next day she woked up numb in her whole leg. we stuck her with pins and she couldnt feel it. since then the numbness has traveled up and down her leg and so has pins and needles like asleep to pain now from waist to middrift. tomorrow this could all change again. any ideas out there. we can't see a specialist for awhile and i am so worried. also her leg is definitely colder than the other and at times it's bluish with spots of white. i have her in physical therapy but i need to do more..........no one seems to think this is an immediate rush, but how do a tell a 12 year old that?

I've had it for 12 yrs. Been through many surgeries,all because I shattered my ankle in 3 places and took 3 surgeries to get it to heal. It has spread through my body now. Terrible headaches, rotor cuff problems hernated discs so on. Go to pt 2 times a week for 12 yrs. Never thought I would be in this shape today.I used to play volleyball 3 times a week, softball twice a week walk 4 miles a day. But can say have not let it beat me still doing daycare, back to walking 2 miles a da. But still live in chronic pain every day. I take perdan, oxcodon, tompax.But I don't know what future holds for me all I can do is keep moving and keep going to pt.

Thank you for this backing this sir. RSD patient for 16 yrs..Im one who has been through blocks, have paddle implant, been through the mill. therapy the therapist stopped beause they were causing me more harm. I have small lumps in my neck and when they massage them more would appear. I always use my arms and am always very tired. I make the bed that exhausts me. I have myoclonus. And memory loss, say its from topamax and cymbalta I dont know for sure. joint pain, tremors in right hand and leg ect now pain that feels like flu pain with cold and hot chills and knee pain and ankle and foot pain. so painful to walk. Dr. here doesnt know how to help me.

I have had RSD for the past 18yrs! At the time I had over 20 doctors on my case and at the end of it all it was Riley children's hospital that found my RSD. The 1st sign I had was on july 4th 18yrs ago..I had such pain in my right foot that I cld nt touch walk on or even look at it felt like...by the time I got home from watching fireworks I didn't have a bone in my foot you cld see because of the swelling. It was purple almost black. My parents took me to my first hospital vist where the doctor nurses etc cld nt find a pulse in my foot. So they transferred me to a saint marrys where they had a surgeon meet me because they thought I wld need my right foot amputated (dnt know how to spell that)...anyhow by the time I got there they did end up finding a pulse and from that moment on they had know idea what was wrong with me:( I spend the nxt month in that hospital and was sent home on crutchs and told nt to walk on it just incase it was a blood clot. Well the pain was so back I went back to the doctor time and time again with one sayn " use it or loose it" and the other say "don't walk on it"..i wld norm wear a size 7 shoe. If I was lucky at all it was a size 13 because my foot wld swell so bad. Also, when my foot wld swell it wld get ICE cold! But that was when the pain wasn't as bad too...my sure at what point the doctor sent me to Riley with order for me nt to leave until they found the problem. I was at Riley about 3 weeks I think when they told me I had RSD they told me it was very rare. Ok so I had a name out to my problem, but now what? They sent me to tharepy. That was SOOO painful but she started to rub my ankle one finger on both really easy and the longer she wld rub the harder she work work it....it really helped for about a day. The pain wld never all good way however it was much better. Well, we moved and I never got back to it. Now, probably 16yrs later I sometimes feel like I cld die with this pain! It is nt only in my right foot but it goes all the way up my leg and is now in my lower back. I broke my tale bone and had the end of my tale bone taken out. Well, I do believe it has moved into my lower back now. I have family that goes to the doctor about every little thing in their life....and well I have set my mind to let people think I can live with this and have it under control...however, sometimes it gets the best of me and it brings me to tears! I am married and one day wld love to have kids....but I am also afraid that my kids could inherit this dumb thing called RSD.....the more I read the more I get upset...as I said I have family that goes to the doctor for everything...but my hubby's family thinks you shld be able to live and and not complain if a car landed on you...so I have the best of both worlds....& am freaking out about now....I wll not let this thing get the best of me....I guess I'm just needing some help on are there any small things I cld do that wld help with the pain?

Thank-u for all that. that really had scare me to, when u said rsd can kill u. I am just wounding about my future, sound like there is not mush future there for us. I am on work-comp now after 2 years they what to close my case. I did not think it is right at all since this is a life time sentence This really suck. I am 54 years old female fighter 2 years and counting to

Hi I've had RDS in my left arm for 7 yrs from a surgery but I got treated for it early and had some good results but 1 yr ago I had ankle surgery and got RSD in it and it has spread to my upper inner thigh. I just had right wrist surgery and know I got RSD in that as well. I have gone to all my other doctors and a nerve doctor and they told me I should of never had the surgery cause I am prone to RSD. But the doctor that did the wrist surgery said no. But all the other he should of warned me or at leased tell me he had concerns and by the way I have fibromyalgia. But that doctor asked me 1 question do I want to live the pain in my wrist the rest of my life. I said no and he started the paper work I had my scaphoid bone broken I had it for 8 yrs. and in the past 2 yrs. it got better I just was afraid of it in my later yrs. it would get worst but I tell you I would of never went though with that surgery if he told me I have a good chance of getting RSD there I could of lived with the way it was. But you are right about DON'T give up and be strong cause if it was not for me being strong I would of gave up so your story is just helping me more so GOD bless and you stay strong and thank you.

My wife has RSD. We went to a seminar held by an association that invited two doctors who have treated it for many years. They were very knowledgable and full of good information. One thing I remember one of them saying is that Fibromyalgia IS RSD/CRPS. They are the same thing and treated similarly. You have to find a medication regimen that works for you and stay active with PT. Mobility and Activity are your only solice to the pain and occupying your mind to overcome it.

Not sure where you obtained your information from but fibromyalgia is not the same as RSD. Some similarities, yes. The same, not even close jack!

Unfortunately it sounds like it IS CRPS. :( I have the same thing in my right shoulder. Arm goes numb, turns blue. That's very unfortunate because she's Sooo young.