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)

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 04-11-2009, 02:19 PM #11
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

My RSD is in both legs, and it has spread to both arms/hands as of last year. My legs were diagnosed almost 3 years too late, so the RSD is pretty bad there.

I love yoga pants. They are great, smooth and comfy. I wear wide wool socks at night, otherwise my feet and legs won't get warm at all, and I sleep under a very light double duvet that is especially warm, it's a winterduvet. Very warm for my legs, but too warm for the rest of my body especially if I have to stay in bed longer (because I'm too tired or hurt too much)

To be able to go outside, I have a few seventies-style lycra/elastine (soft) jeans with huge flares and a few big size black dress pants that are so wide in the pant legs they seem like skirts. Awful clothes!

I really do hate the clothes! I used to be very trendy, used to dress in tight pants, jeans and shorter skirts. I kept things very youthful and I had a thing for shoes. I was a lot like the character that Jessica Parker played in Sex and the City. Always on the go, getting things done, working hard.

Nowadays I too have to watch out for the swelling and wear more of a wide type shoe, or shoes a size to a few sizes bigger. I even have men's shoes/sneakers for when it gets really bad. Mostly I wear slippers that are comfy and that don't enclose my feet (hurts like hell). My feet are pure pain, I don't feel much else there. I can't even fully feel that my feet are flesh and blood, it's all pain, and it makes it difficult to put the feet down and take steps - seems as if all I feel is my heel (I have to think where and how I set my feet down while taking steps). My knees too are bad, and I regularly have flare-ups especially if I overdo things (purple-ish/mottled skin that starts to gradually spread throughout the limb from the knees)

I have RSD for almost 14 years, and I am on Buprenorphine pain patches (70 µg) & oral Buprenorphine for breakthrough pain and take Neurontin as well (2700mg a day). This is what works best for me, and I have been on this medication since September 2004. Before that it was Tramadol (which only just took the edge off the pain).

Neurontin has done lots, in the sense that I felt that clothes were no longer my enemy. I still have to watch what I'm wearing (can't wear tight clothes) but it has helped hugely, also with the ice cold sensation and with the pain.

I too struggle with function loss daily. I still don't quite know how to process it. RSD has taken my life away. I am a totally different person now, and against my will... that's the toughest part!
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
CRPSbe is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluekrikit (12-27-2015), MominPainRSD (05-09-2009)
 


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Lifesavers...AFSP Newsletter Alffe Survivors of Suicide 1 02-23-2009 06:47 PM
Pets are therapeutic and lifesavers: tjsmith890 Pets & Wildlife 6 04-08-2008 12:30 PM


All times are GMT -5. The time now is 08:58 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.