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Member
Join Date: Nov 2006
Location: UK
Posts: 809
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Story update... it won't let me edit my old one.. so sorry...
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 now 23. In that time it has spread full body and I have developed secondary generalised dystonia as well as HMS etc. I am now a quadriplegic and have occasional chest spasms, a lot of dystonic storms, have gone into status dystonicus several times. I have am in my third year at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 4 cats and a dog at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading. I have an amazing boyfriend called James who is always there for me, is studying Chemical Engineering and is just generally awesome.
Take care and pain free hugs!
Rosie xxxxxxxxxxxxxx (a.k.a Frogga)
I have apparently had HMS (and apparently, according to my neurologist, dystonia) for most of my life but I wasn't really affected by it - my joints hurt if I did too much and I had 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 pianist, 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 visiting my grandma she took 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 a collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration from the car hurting so much) and tried to get on with my life. The alloydinia was so bad that I couldn't keep any material or clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry. The pain moved up into my right shoulder and I had no movement from my right shoulder down and my right hand was clasped in a fist, my wrist twisted down and my arm held tight against my chest. 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. And so I 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 physiotherapy, 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 physiotherapy 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 doctors 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. The doctors decided to give me a pemidronate infusion to try and help with the pain but it didnt work.
I got discharged from hospital in March 2002, 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. 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 physiotherapy everyday, seeing the physiotherapists 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.
This continued into the end of April, when a "friend" broke my left wrist by dropping something on it (by accident admittedly - but Im still cross about it). The break was lightly plastered because of the RSD in my right side and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physiotherapist 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. I sat my GCSE's in hospital and continued with the physiotherapy. So, it was May, and I now couldn't walk, could barely use my arms or do anything. Then came several months of being hospitalised whilst I did physiotherapy, had OT and tried new drugs whilst the doctors tried to get control of my pain and get the circulation back into my limbs, reduce the alloydinia so I could bear having my body touching anything.
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 so the RSD had gone into all limbs. 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 sixth form college (high school) on a full time course. I came out of hospital just able to use crutches to drag myself 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 physiotherapy, all the desensitisation etc and the fatigue was so awful I was lucky to manage 5 hours a week at college.
In November 2002 my physiotherapist 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 into a contracture. Unfortunately that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and contractures and found my muscles stopped responding how they should have.
I spent the rest of 2002 and 2003 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physiotherapy, OT, hydro. I got assessed for and given new wheelchairs, started to have adaptations done to the house. I started having huge amounts of burning in my butt and spine.
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 quality 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 September 2003 and attempted full time (a mistake as I only managed about 30% attendance) and managed to complete the year with ACC at AS level. I went on to do another year at college (part time) 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 etc 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 and I had started getting twisting spasms and tremors and myoclonus. Although I had developed a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physiotherapy 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 didnt work. I got engaged to Jay and then broke up with him, realising 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 all the time.
I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening regularly and had ended up with spasms where I 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 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 me to develop orimandible 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 couldnt 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 prestigious college to study psychology.
So now (in 2007), 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, dihydrocodeine, 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 of my feet are inverted and twist over each other whilst 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 shoulders arent much better. The botox has helped my right hand a bit 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.
Update: Jan 2009. I cant believe I have now had RSD for 7 years.. its so scary. The pain has really spread into my back and it is really burning, in fact my whole body is. Ive started getting lots of full body spasms and my jaw keeps locking and then unlocking. After a really awful dystonic storm my arms went from being locked out straight to bending up and across my chest so I was totally unable to operate my wheelchair, type or drive. I got my new wheelchair accessible van which is awesome its a Chrysler Grand Voyager and means I can go out. I am in my third year at university and am now on placement working as a mental health officer at Wiltshire county council I really enjoy the work and they are really good about giving me the opportunity to work from home and giving me time off when Im not well etc. I have awful dystonic storms 3 or 4 times a week, especially at night, and I also faint from pain a couple of times a week. My friends know I hate hospitals so they deal with almost everything (along with my live in carers). I ended up going into status dystonicus in December 2008 and ended up in hospital. My arms ended up moving from up across my chest (near my neck) to down under my breasts. The pressure they put on my chest is agony and bruises both my chest and arms. I am also having huge jaw problems with eating. My chest has started to go into spasm and that makes my lips go blue and my face go grey when it happens. The dystonia also affects my face and eyes which can be embarrassing.. I am so blessed to have the most amazing friends anyone can have and also an awesome boyfriend who is there for me every step of the way. He has been there when Ive been fitting, he doesnt mind feeding or dressing me or taking me to the toilet and still thinks that hes lucky that Ill date him!! ROFLMAO! He is studying chemical engineering and is called James and is gorgeous and just generally lovely. Weve been together for the last 14 months and he has practically moved in.
I still take loads of meds and my pain is still not under control, Im on oramorph, ketamine, dihydrocodeine, tramadol, baclofen, diazepam, ibuprofen, paraceptemol and domperidone. It still feels like burning, stabbing, screaming, exploding, deep aching, throbbing, whipping, lashing, clicking, all consuming pain.
Its strange... the one thing I find is that the more the RSD and dystonia destroy my body the stronger it makes me against it. Sometimes it feels like the pain is going to destroy me but yet.. I think Ive made it through agony and more agony than people that dont have RSD can possibly ever understand, where nothing can control the pain and thats given me the strength to keep fighting this thing, even when things get to a point when I feel Im going to give up. Sometimes I get really down with this, I feel that its not fair and its destroyed my life
and that its not fair that my normal friends can go out on their own, live on their own, have freedom let alone feed themselves, stand up and walk or be pain free.. I sometimes wander what it would be like to be pain free, to walk outside in the sun holding James (my boyfriends) hand, or to be able to go out dancing with my friends. I wish I could concentrate better on my work as the pain just destroys any concentration I could possibly have! Does anyone else ever wander what their life would be like if they hadnt got RSD? I mean, I discovered several months ago that my neurologist thinks I would have got the dystonia anyway but at least that would have been less painful! And I think less debilitating than the two disorders together (as well as all the other stuff). But, would I have made it to medical school? Would I have qualified now, like some of my friends? Maybe, but
Would I be the person that I have become? Somehow, I dont think so.
Much love and pain free hugs to you all
Rosie xxxxxx
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It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone
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