Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-09-2015, 10:21 AM #9
spiritscript spiritscript is offline
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Join Date: Mar 2013
Location: Poconos, PA
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spiritscript spiritscript is offline
Junior Member
 
Join Date: Mar 2013
Location: Poconos, PA
Posts: 28
10 yr Member
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My pain med barely works anymore. Since getting this, I now have a phobia to pain and I used to be able to tolerate a lot of pain before this nightmare! I am now scared to death of pain! There have been times when my burning pain has been so bad that I cried and prayed for days for just a little relief! How can you handle this kind of pain with no pain meds? And how did you stop them? Thank you

Quote:
Originally Posted by ali12 View Post
Great thread - thanks for starting!!

For me, if I am travelling any long distances, I like to travel in my pyjamas! I know it sounds strange but they are the comfiest things I have to wear and I can just get changed once we arrive at our destination! I have lots of comfortable snuggly pj's that I just couldn't live without at all!!!! Me and my mum had to travel 4 hours to London twice in the summer last year for hospital treatment and they were really useful and comfortable. I don't like anything touching my RSD leg at all so I usually have to travel bear-foot or wear some really loose shoes as my foot tends to swell up a lot!

I also love soft pillows. I sometimes sit on them if my pain is really bad and we are travelling a long distance as they get rid of some vibrations from the car - although of course, it's impossible to get rid of them altogether!!!!!!

My Doctor is currently making me an "RSD Survival Pack" that I can use when we fly to Vegas on Sunday. My PT's said that he was going to give me lots of anti-inflammitary meds and some extra pain medications in case the flight makes my pain worse (which i'm guessing it will!). I'm currently not on any pain meds as non of them worked for me and the side-effects outweighed the benefits so we decided it was best to come off them but I take pain meds when travelling to try and combat any flares/spreading etc.

I hope you find something that helps you soon - everyone is different as to what works and it might take a while but you will eventually find something that really helps you!!

Last edited by spiritscript; 05-09-2015 at 10:22 AM. Reason: typo
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