NeuroTalk Support Groups - Our Stories & Introductions

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

Hello Sue and Welcome to NeuroTalk - you will meet many great people here who will be more than happy to help you in any way they possibly can!!

I'm so sorry to hear about everything that you have been through and really hope you get some much-needed pain relief real soon!!:hug: Please don't EVER give up hope - there is always hope and it seems as though you are still at the begginning of dealing with this awful disease? Doctors usually say that RSD is best caught and diagnosed within 3 months as that is the best chance of getting your RSD into remission! Unfortunately, there isn't any cure for RSD at the moment however there IS medications to try and help reduce the pain and other symptoms!!

I have RSD in my left leg and right arm - I developed it when I was 12 years old and am now 14. It took me 4 and a half months to get diagnosed and treated which was pretty "good" compared to some as some people are left to suffer in awful pain for years on end! Before I was diagnosed, I was having Physical Therapy although it wasn't helping at all as the PT's didn't know anything about RSD and thought that I was just faking the problems for attention - why would I do that?!?!?!

When I was diagnosed with RSD, my Pain Management Doctor immediately did a Guanethidine Nerve Block and it didn't help me at all and I was left wheelchair bound for over a year!:eek: Unfortunately, when my Doctor did the nerve block, he didn't realise that you should NEVER inject directly into an RSD limb unless you absolutely have to and it was only when the complications started happening that my mum found an article on the internet about it so by that time, it was too late unfortunately!

MANY people have had relief from the nerve blocks though and it is different for everyone - no two people are the same when dealing with this illness unfortunately so it really is a matter of trial and error! I would suggest that you do a lot of research before going ahead with anything though and to weigh up the benefits and side effects and speak to people that have had that paticular procedure done before!

If you need anything, please know that I am here for you because I DO understand what you're going through and how painful and frustrating it is!! I hope you get some much-needed pain relief real soon and am keeping you in my thoughts and prayers!!

Alison.

Quote:

Originally Posted by sue barbour (Post 465222)

I feel for you guys but please tell me how this got so far out of hand ...Here is my story ..had shoulder surgery on nov.18 09 never got rid of the pain on cut they made on top of it first doc kept telling me its find this is normal,so with no help from him after giving me sleeping pills,pain pills,creams,and any thing his PA could find I went to a new doc it was hard to find one that wasnt in with the same company but when I did she took up look at me and sent me to her pain management,got my first block and got some releaf go for 2 more in the next 2 weeks I am hoping for a cure with the shotsBut after reading the hell you guys have been in for most of your life I'm not so sure,Is it because it was not coute in time or what,now I'm not sure if I should get the block or not someone please tell me how long you had this before a doc did anything for your pain......?????

Quote:

Originally Posted by sue barbour (Post 465222)

[F]Hi Sue, I had shoulder arthroscopy at the end of April last year. Second day after surgery, my arm, hand and shoulder be came very swollen and unbelievably painful. After 4 weeks of the madness, I self-referred for an EMG/NCV which was positive and the neuro told me to go to pain management within a week or two if not better. I then self-referred to pain managment at 6 weeks post and had my 1st stellate block the next day. I have had 5 now, mostly because PT aggravates my causalgia symptoms but at least the blocks work temporarily for me, if nothing else. I have fortunately not returned to the awfull, intensity of pain that I had pre-blocks. I think that if they seem to help, you should continue until you feel they stop helping. That's where I'm at too.[/FONT]

Hi there, I'd just like to introduce myself...I'm already friends with Ali ;)

I am not going to write my whole story just now, maybe I will one day-maybe not. You all know how it is already anyway.

I'm 23 years old and I live in Christchurch, New Zealand, when I'm not studying in Dunedin at Otago University.

I've had CRPS/RSD (what ever you call it doesn't make it any easier) in my right leg and foot since March 2006 but was only diagnosed to my face with it in May last year. I missed one step and landed hard on the next one, I didn't even fall over but I managed to mess my hip quite badly and also my foot.

Took a few months to get a doctor to believe that I had hurt my hip even though I could barely walk and finally when we did find someone we discovered that I had done so much damage I needed pretty major surgery to try fix it.

I've had a series of accidents since then mostly involving complex concussions (and one scaphoid fracture), I do not mix well with stairs and my balance and centre of gravity are shocking. One fall even took me out of a whole 8 months of uni.
I had the surgery on my hip which has been amazing as now I can walk quite well again as before the surgery I could barely walk at all. At that time my surgeon was confident that all the problems with my foot were 'my body's way of dealing with the pain in my hip' and that surgery would fix everything-how I wish that was true-I often think he was trying to pretend to himself as much as me because he knew.
I have continuing problems with the head injuries too but have never given up on my dream.

I got through a very competitive pre-med year getting grades good enough for physio (PT) school (all the health science professional wanna be's do a combined first year) so now I'm a couple of weeks away from starting my 3nd year, having passed all my 2nd year exams, not really believing that I have made it this far.

I take the good with the bad, try and focus on the good as much as I can and I love helping people! Things don't always go to plan and I get pretty stressed sometimes and my grades are not as good as I wished they should be. But I am learning slowly that its an achievement in itself to be where I am and passing at all and above all to never give up on something you truly want with all your heart.

I've just spent the summer doing an intense hydrotherapy program (been at the pool almost every day) and have made a lot of progress in terms of strength, endurance and function. I'm still in pain but I have been hardened some what to now be able to do quite a lot despite the pain. I still have bad days but I have a close network of friends who are always there to pick me up and get me back on track.

Looking forward to meeting you all.
Felicia

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

Newbie and question about cortisone injections

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.

Hi Everyone,

Well let's see... Back in 1995 I was in a severe car accident where I went 1/2 way through the windshield.. I broke my left shoulder and collar bone, and my right collar bone and spiral broke my right arm.. The orthopod was paranoid about doing surgery to repair the spiral break (a rod and two pins) because if he "slipped" one way my arm would have been paralyzed, and if he slipped the other way, I would have bled to death before they could do anything.. Nice idea to have a doctor in charge that was so insecure about his skills.. So, after this, afew weeks went by and the RSD began in the bad arm.. Non-stop going to one doctor after another about my symptoms, I was finally diagnosed 4 years later.. At this point, the RSD has spread to both arms, down my right side and both legs, on top of having diabetic Poly Neuropothy...Being that there is no doctor in my area that I can find that has a clue about RSD, I feel like I'm just stuck with it... Years ago I had made an appointment in Philia to see Doctor Swartzman but needed to cancel it.. I'm now in search of a doctor that actually knows what RSD is and can treat it in the Scranton/Wilkes-Barre area of Rennsylvania... Anyway, Just wanted to say "Hi" to Everyone and hope you are all happy and full of hope for a cure or at least good enough treatment that you are all well :D

Hi i am 31 yo from oklahoma. I have had rsd for about 6 years in my hand wrist and arm. it was a result from an work injury. I had to have major reconstructive surgery on my wrist as a result i developed rsd. I currently take lyrica, gabitril zanaflex, celebrex, tylox, kadian, cymbalta, trazodone and a cream with ketamin and some other stuff in it. well yall have a good day

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.

Quote:

Originally Posted by frogga (Post 57601)

Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunatly none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS for most of my life but wasn't really affected by it -my joints hurt if I did too much and I have pretty bad neck pain from the age of about 8. However, I still did sports, played for my county in hockey, was a grade 7 piano player and also played the double bass, accordion, organ etc. I was predicted 12 A* at GCSE (highest grades you can get) and was on an academic scholarship to one of the best private boarding schools in the UK.
When I was 16, in January 2002, I was packing to go back to school when I slipped going up the stairs carrying a pile of ironing. One of my cats, Fred, was walking down the stairs and ran between my feet and I went flying, hit the top of the stairs and in a desperate bid to not drop the ironing I threw my right hand out. I landed on my right wrist and fell down the stairs.
Everything went black.
When I came too my arm hurt so much I thought it was going to kill me. It had swelled to three times its size and had gone black and purple and ice cold. I couldn't move my fingers, wrist or elbow and it just hurt SO much. When mum got back from visitng my grandma she too me to A and E (ER) and they thought I had broken my arm. The X rays showed nothing, so the drs put me on some pain killers (dihydocodeine - similar to percocet I think) and sent me home with collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration hurt so much) and tried to get on with life. The alloydinia was so bad that I couldn't keep any clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry, everything hurt so much I thought it was going to kill me. Two weeks later I was still taking the tablets and getting no relief, no sleep and just generally going insane with pain. I went to back to A and E (ER) at my local cottage hospital close to school (Basically meaning they can take X rays and thats it) and they told me I needed an emergency appt with my PCP in case it was a blood clot. Anyway - saw the GP (PCP) who recognised it as RSD. He increased my pain killers, referred me to pain management, orthopaedics, rheumatology and physiotherapy and told me that I had to move and touch my arm to get better. So started a long process of treatment. I saw the rheumatologist 2 weeks later who then said that it was the worst case of RSD he had ever seen and if I couldn't get my arm moving then it would be amputated. I got admitted to hospital and started inpatient physio, hydro etc.
Two weeks into treatment the RSD spread into my right leg. It had been hurting and I woke up to discover that my leg had gone black, ice cold and just generally horrible. I couldn't weight bear on it so I was given a crutch for my good arm and hopped in conjunction with the crutch. I was working really hard on physio and had got some movement in my fingers but the swelling still wasn't going down. I had turned into a drugged zombie as the nurses tried to keep my pain levels low enough to move but the only thing I could think was "this pain is going to kill me" and at times even breathing burnt so much I didn't know how I could live through another minute.
I got discharged from hospital, still hopping with the crutch (they had tried to suggest a wheelchair but I told them I wasn't going to use one) , still unable to do anything with my right arm. (this was March 02). I was then spending a fortnight in hospital, a week at school and a week at home and then back to hospital. By now I had had to move into my house mistresses flat because I couldn't do stairs and my friends had to help me dress, wash etc. I was doing physio everyday, seeing the physios 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.
This continued till April, when a "friend" broke my left wrist by dropping something on it (by accient admitedly - but im still cross about it). The break was lightly plastered because of the RSD and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physio for a gutter crutch. Two weeks later the cast had to be cut off my left arm because the RSD had moved into it - my left arm had swelled so much the circulation was cut off to my fingers and I still have the scars from the cast. I was readmitted to hospital again. Sat my GCSE's in hospital and continued with the physio. So, it was May, and I now couldn't walk, use my arms or anything. Then came months of being in hopsital, doing physio, hydro, OT. drugs, infusions, quests for knowledge, increased pain management etc.
My drs finally decided to try a lumbar block as I just couldn't handle the pain any longer. It was my worst decision. I had it done and as soon as I came round from sedation my left leg had gone black. Whatever had happened whilst I was out - the RSD was now in my left leg as well. The sensitivity had got to a point where I was in shorts and a t shirt and I couldn't sleep on a bed - I had to either sleep sitting up or lying across a bed with my arms and legs hanging off. I lived in fear of being touched and was always on my guard in case someone came too close to me.
I finally came out of hospital in October time and tried to start at a new college on a full time course. I came out able to use crutches around the house and feed myself and that was about it. I dropped out of the A level course by december because I was in so much pain and so exhausted I just couldn't cope - I was still doing all the physio, all the desnense etc.
In November 2002 my physio put me in a wheelchair because I was so unsafe walking and because I had an infection in my legs. It was only going to be for a week or two. Four years on I am still in it. Whilst I was in the wheelchair I got dropped on the floor and broke my ankle causing dystonia in it and causing it to twist upside down and invert. Unforutnatly that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and found my muscles stopped responding how they should have.
Anyway. I then spent 02 and 03 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physio, OT, hydro. Got assessed for and given new wheelchairs, started to have adaptions done to the house.
In Spring 2003 mum and I realised I wasn't going to be "magically" cured so she started a new thing with me. We decided to choose one symptom which seriously destroyed my qualiy of life - hypersensitivity - and worked on it. Slowly it started to improve, though we would have argument after argument about it - I wasn't allowed out of the house unless I was wearing trousers, socks and a cardigan and slowly as I forced myself to confront stimuli I realised the sensitivity was improving. I got a new bed (a heated water bed) and mum used to get up and check that I hadn't removed all the covers etc.
(you can tell she's a military nurse). ~Anyway - the sensitivity started to be dealt with slowly.
As I live in a very quaint area of the UK it thus means there is no wheelchair accessible public transport - and as I am miles from my nearest town and at least a 30 minute drive from college I learnt to drive an adapted car and passed my test.
I started back at college in Septemeber 2003 and managed to complete the year with ACC at AS. Went on to do another year at college and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldnt do (I could feed myself, dress myself with help, drive
etv but still needed a wheelchair and help with quite a few things, cutting up food, getting in and out of bed, being lifted in and out of the bath etc).
Anyway - that year I got ACA in my exams. In this time my pain and dystonia had been getting worse. Although I had devleoped a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physio etc I wasn't getting better, I was just getting worse. My feet were both totally inverted and my toes pointed backwards over my feet. I couldn't use my left hand at all because all my fingers had locked. I had specific splints for stretching my joints out but they were being odd. I got engaged to Jay and then broke up with him, realiing that firstly I didnt want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after allt he time.
I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening reguarly and had ended up with spasms whereI had dislocated thumbs, shoulders, knees etc. But my thumbs were the biggest problem as the spasms would pull them out of joint and then backwards over my hands - which was VERY painful and annoying! He didn't understand what was going on and so ordered an EMG to be done as he felt that it wasn't possible for RSD to get as bad as mine was. Meanwhile my pain management dr had decided to put me on ketamine because I was still not sleeping for more than 3 hours a night and even though I could now cope with clothes I still couldn't cope with anyone touching my skin etc. The ketamine trial was good and worked better than the high doses of fentanyl and morphine I had been on and so I switched.
A week later I got bitten by my dog and jumped. I couldnt open my mouth or hold my head up. Apparently the jump had caused my to develop orimadible dystonia. To avoid having to have tube feeds I had to be on liquidised food to try and eat it, though it also had to be thick enough to swallow as I also had problems with that. I was placed in a full spine/ neck brace to hold my head up and more tests continued as to why I had lost the use of it. Orthotics made me a special brace that I used during the day in conjunction with the head rest on my wheelchair to keep my head upright and to allow me to drive.
In March I had the EMG. Straight after those I lost almost the entire use of my arms (before I hadn't been able to use my fingers or thumbs, now I coudnt move my elbows either or my shoulders). Loads more tests etc and they discovered I had severe dystonia (which I have botox for). However, in 2006 I stayed in college, managed full time and managed to get 4 A's - the highest grades you can get. I got a place at a prestigous college to study psychology.
So now, on the 5th anniversary of me having RSD where am I? I am still in severe constant pain, I haven't slept through a night in 5 years. I take ketaime, dihydrocideine, baclofen, diazipam, benzhexol, ibuprofen, paracetemol and diclofenac. I am living away from home at university most of the time. I have live in 24 hour carers who feed me, dress me, lift me, etc. I use an electric wheelchair or am pushed around in my manual. My hands don't work and I have to have someone with me to do anything at all. I am waiting to see a neurosurgeon about possible having a DBS implanted. Both my feet are inverted and twist over each other, my toes are twisted backwards, my hips have twisted too. My periods stopped for several years and have now re started very sporadically. I still can't hold my head up and though my jaw has improved I still can't eat very solid food. I still aspirate frequently and have difficulty with swallowing. My elbows still don't work and my shouldners anre't much better. The botox has helped my right hand abit so I can operate my electric wheelchair. I have RSD full body and everything hurts, burns, stabs, screams. I can now wear clothes (but not shoes) but everything that touches my skin still feels like it is burning holes through it.

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.

Thank you so much for sharing your story