Quote:
Originally Posted by ali12
Hello and welcome to the forum!!!
I am so sorry to hear that you too are dealing with RSD, I have had RSD for 15 months now. I suffer from RSD in my left leg and right arm and developed it after an ankle sprain when I was 12 years old - I am now 13.
If you have any questions please don't hesitate to ask - I will try and help you if I can.
I too am on a lot of medications, these include, Lyrica, Baclofen, Paracetamol, Tramadol, Ibuprofen and something to try and help me sleep. I have also tried Amitriptyline (this caused my vision to go blurry and resulted in a spread of the RSD to my arm), Kenadrin, Pregablin, Morphine, Diazepam, Propranolol, and many more but they dont help me that much either.
I am currently waiting to start an intense PT program and I will start that on the 7th July. The program lasts 3 weeks (possibly longer) and I will have 2 hours of PT in a morning, then tutoring, then dinner and another 2 hours of PT after dinner.
I really hope you are having a "good" day and if you need anything I am here for you. I know how scary it is when you are first diagnosed with something that you don't understand that well
I'm looking forward to chatting to you more
Alison
xxx
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Hi Alison, glad to meet you! Thanks for the response to my post, you are so young to be dealing with something as terrible as rsd, and I'm so sorry to hear you've had it for that long. I hope you have a great support team. I'm 26, with some wonderful family and friends trying to help me out and still having such a hard time dealing with it all, I can't begin to imagine how hard it must be for you; you're obviously a very strong young woman...
I'm also on the Lyrica, clonidine, amitriptyline, percocet, and valium; along with the fentanyl patch and the Catapres patch, so basically, I'm a walking (or riding) zombie, lol. They've got me in a wheelchair now...
Good luck with your PT program. That's one thing I've been a bit confused about, I was under the understanding that pt played a big role in the treatment of rsd; however, my team of doctors will not send me. I've been told that pushing too hard will only worsen the condition and perhaps cause further spread, so I'm supposed to try and move as much as possible at home, but not to push it. The last couple of weeks I've lost any flexibility in my left leg. My toes and foot are arched up as far as they can go and my leg is bent at the knee; I'm completely locked in to this position which makes sleep about impossible...
Anyhow, I guess just trying to get by day by day is all we can really do, I'm still holding out hope for a "miracle cure" but as i'm now only getting 2nd and 3rd opinions, that hope is fading fast... I hope you're having a "good day" as well and will count you in my prayers...
Take care my friend,
Sarah