I haven't been active on here in a while but for those of you who remember I ended up with RSD after a sprained ankle 7 years ago when I was 12. Since then it has spread to my opposite arm and I went through a really bad time 3 years ago having convulsive faints after a flare
Things settled down but the feelings of wanting to faint never went away, in fact they are now worse to the point where I almost permanently feel like I want to faint
Around 2 years ago I was diagnosed with POTS (Postural Tachcardia) and am now being referred to a specialist in London for Autonomic Testing later this month
Looking back I am wondering if the RSD really started that day. I had two really bad problems with my arm before that where the hospital thought there was a major break but one was hairline and one didnt exist when x-rayed, and I was always quite a clumsy child and dyspraxic - and have now found out I have Ehlers Danlos hence there seems to be a tie in to all this
Its all very chicken and egg. Im wondering now if my EDS made me susceptable to autonomic problems which then lead to the RSD and POTS or did the RSD trigger POTS - very strange
Currently my problems other than the RSD tend to be feeling permanently in a state of pre-fainting and wiped out. I have terrible migraines, digestive and bladder problems and my heart rate and BP are all over the place and run at 155/104 on everage with a heart rate of 117 but can go from 62/60 to 199/136 within minutes with the worse reading in the last few days being 253/184
My local hospital referred me to London for more extensive testing to find out just whats going off but I was wondering if anyone else with RSD had had autonomic testing or similar problems and what you were told of the reasons and the way forward
I'm really trying to get on with life. I have a part time job and am waiting for my University offer but its pretty hard getting people to understand you may need a little bit of extra time or help at times because you often look "normal" and they can't see whats going on inside
Hope everyone is doing OK and if anyone has experienced something similar with dysautonomia I would be really interested to hear your experiences
Alison xx