Dysautonomia and RSD
 

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

Hey Ali,

Gosh hon, I am afraid I am not going to be of any help whatsoever. You actually helped comfort me with the one and only fainting spell I have had. But I will tell you that I have had many feelings of dizziness and that light headedness that makes you think .. ut oh..

Please keep us posted as you find out more. Again I really wish I knew more what you are asking about, but I just don't. I do know that your BP being all over the place like that is no good at all. Ali I would not want you to have a stroke hon. Please do whatever you have to, to try and get that more stable. I know that POTS, Syncope, and some of the meds we take can cause irregular heart rates BUT the numbers you shared are drastic. Worries me for you.

Best of luck and I look forward to hearing from you soon! :hug:

Thanks Vrae, means a lot.

So sorry to hear about your fainting episode, I know just how scary they can be. :hug: SO glad for your sake however that it was only a one off and really hope that it doesn't return.

I will definitely keep you posted as to what the tests show. I go in two weeks (22nd April) and will be spending 4 days in hospital. I'll be having numerous tests including two tilt table tests, blood tests etc. Many of the tests I have had before but these are much more in depth. I'm dreading them as I know how ill they made me last time but hopefully they will give me some insight into how can help.

It sucks as RSD is enough to deal with, without all of this. I constantly have chronic pain then migraines, dizzy spells, sickness, fatigue, nose bleeds etc thrown into the mix... as I'm sure you can imagine, it is really hard to deal with and no medications have helped so far so here's hoping once the test results come back they will have an idea on how best to treat me.

I hope you're doing well and thanks again for your support,

Alison

Ali have you been tested for Lupus? I know a lot of our symptoms mimic things and its hard to tell what exactly is going on. But yours REALLY mimic lupus.

I developed epilepsy after a surgery and RSD came on. I still believe they are very much related since nobody in my family has a history of epilepsy and I didn't develop it until I was 19 and it was after complications from surgery and RSD.