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Hi, I'm Rosie and live in Suffolk in the UK. I have severe generalised RSD/ CRPS, generalised dystonia, and multiple other (fun fun issues). I developed RSD in January 2002 (when I was aged 16.. now 33 - scary!) and it has spread and spread and spread.. RSD makes me feel like my bones/ joints are surrounded by burning flesh with horrendous shooting and stabbing pain. The dystonia started about 6 months after the RSD, starting in my wrist and moving through my whole body. It makes my body twist and can cause contractions. I am most severely affected in my legs/pelvis, neck and jaw - but also shoulders, upper arms, hands/ thumbs. I am considered hypermobile and (probably) have EDS 3 (several diagnoses BUT Not been seen by Prof Graham/ genetics - and they changed all the diagnostic criteria throwing most patients into new/ different classifications - generally from EDS to HMS. Complicated huh?
I struggle with severe visceral (inside) nerve pain and dysfunction in my bladder, bowel, stomach, and lungs - also I have dysautonomia and a pulse that goes from 48 to 180 at times, unable to control my bodies temperature, only sweat from my face/ hair.
I use an electric wheelchair/ hoisted/ rely on 24 live in care and other carers throughout the door. I have to take a lot of very strong meds to give me any chance of managing my pain (much more later...