Join Date: Nov 2006
My story and introduction
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.
It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone