Hi all,

I know I haven't been around in months - an awful lot has been happening - but I won't put that here. I just noticed this question and thought I'd have a little say... I got RSD in January 2002 when I was 16 in my right wrist. Within 4 months it had become full body and I am also affected internally.

When I think about what has changed...

Pain: The pain feels less "sharp" than it was - as in I can cope better with it day - to - day (someone can touch my leg and I won't scream.. I'll just feel like it).. but it seems to impact my life so much more now, it's so deep inside my body that nothing I do or any meds I take can stop the pain.. I'm so used to it now that sometimes I don't even realise I'm in pain because, well, my pain is never below a 9 and so it just becomes.. life. In the last 2 years I've started to pass out from pain and have severe dystonic storms which are agony and make me pass out. Tonight I had a really severe fit and was then unconscious for another hour. I guess a positive is I am no longer scared of pain and have learned to manage it - I use my mind to control alot of the pain (by shoving it into the background until a time when I can deal with it) which has given me a little bit more freedom from it (like, if someone bumps me when I'm out in the street then I can get back to the car before crying instead of making a huge scene).

Mobility/ Strength: I have generalised dystonia and therefore I have severe dystonia which dislocates my joints. This came on after the RSD although drs aren't sure whether RSD caused the Dystonia or whether I'd have got Dystonia anyway.. I can't move my legs and have almost no use of my arms or hands. My elbows, hips, knees, ankle, shoulders, wrists and neck are all contracted. I haven't stood or walked in 6 years.

Independence: I am totally reliant on boyfriend/ family/ carers. I have to be fed, hoisted, dressed, taken to the toilet etc. I can sometimes control my electric wheelchair otherwise my carer/ boyfriend/ friends etc do. It is a nightmare. Though it is the dystonia that has caused much of this reliance. It has made me have to confront my hypersensitivity and make me find a way of dealing with the pain from it. I have found that the hypersensitivity, though it is still AGONY, is less.. as in, "someone's going to touch me --> that's going to burn --> my arm feels like it is burning (Acceptance)" instead of "someone's going to touch me --> NO! if they do that they'll set my arm on fire --> (screams and crying). If anyone else can understand that?

Working etc: I am a full time student and am at uni. It Is INCREDIBLY tough. It took me 3 years to get back into education because of learning to deal with fatigue and pain etc. Studying is really difficult due to problems with concentration, pain etc. However, I am on course for a high 2:1 or a first. I'm studying Psychology and am in my third year. It is clear, however, that I will never be able to work full time and will probaly have to work from home.

Other symptoms: I have far less swelling and less dramatic colour changes but they are still obvious. I am much weaker and can't grip things anymore. I get very dramatic spasms. I get lots more internal symptoms now, high pulse, nausea, swallowing problems, postural hypotension, recurrent UTI's, stomach pain, chest pain etc. I also get much more dizziness and confusion and "fogs" as well as visual difficulties. I also struggle with my speech with getting words out right when the fatigue/ pain is bad. I find the fatigue has worsened over the years.

Treatments: The drs believe that there is nothing that can help me. Being english I can't gain access to the ketamine coma (though I'm trying!) instead the last option I have is the DBS - deep brain stimulation. I have decided I am going to have it but not until I have finished my degree. They are hoping it will reduce the RSD and the Dystonia by putting electrodes into my brain. mmm. I have been on over 100 different tablets/ infusions/ blocks etc. I currently take ketamine, dihydrocodeine, tramadol, ibuprofen, paracetemol, diazipam, baclofen, trihexyphenidryl and nortriptylene (and domperidone etc). These make some difference but I am never any where near pain free.

Yeh.. so at nearly 7 years of RSD I'm effectually a quadraplegic, I'm dependent for everything and I'm constantly in pain (burning, stabbing, exploding, cutting, lancing etc etc) but I am lucky to have an awesome boyfriend, friends and family and that I have the opportunity to study.

Lots of love

Rosie xxxxxxx