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 03-25-2009, 10:59 AM #1
klb1553 klb1553 is offline
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Join Date: Mar 2009
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15 yr Member
klb1553 klb1553 is offline
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Join Date: Mar 2009
Posts: 29
15 yr Member
Default Rsd help

Quote:
Originally Posted by MominPainRSD View Post
Hi all!! This forum has been such a wealth of information and support for me already along my relatively brief road with RSD. I respect your wisdom and experience in so many ways and thought it would be interesting to hear from everyone as to what you each find to be invaluable in your day to day life as you deal with your RSD.

I know many of you have mentioned Epsom salts, heating pads, down pillows in car rides, etc.....but are there specific brands or types of things or fabric contents that you find most soothing or beneficial to you??? I would like to start acquiring an RSD "survival pack" of items (preferably finding things on sale a little bit along) that might help and come in useful when the need arises (or better yet......BEFORE the need arises!).

I thought it could be useful to read each others experiences and what works for them, and perhaps we could ALL pick up a few tips we hadn't thought of before.

Thank you all in advance for responding!!
My legs, knees, and ankles are affected. I was diagnosed last summer and wore shorts at that time. I was really worried about what I was going to wear as the weather got colder. I found yoga pants by Exertec for about around $19.95. They are a smooth fabric and have been a valuable find. They also come in capri pants too. You can order these over the net from Elder-Beerman.com. The fabric shows every little flaw but this just doesn't seem that important anymore. I also have found an ultra soft sock made by gold toe. I can't remember the exact name but you can find these at Kohls.

I have also found physical therapy, i.e., stretching, free weights, and aquatic therapy to be a life saver. I've gone from using a walker to actually being functional again (with limitations).

NSAIDs have been helpful with the swelling, and Cymbalta and Lyrica have been helpful with the neuropathic pain. Also Clonazepam eases the muscle tension. The latter three tend to make me a bit tired, however I have equilibrated over time.

Hope this is helpful.

K.
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MominPainRSD (03-30-2009)
Old 03-25-2009, 03:43 PM #2
AintSoBad AintSoBad is offline
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AintSoBad AintSoBad is offline
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Default

Hello,
I'm new. I hafto admit to cheating, I did not read All the notes in this thread.
But, since I'm old to RSD, I may have some things to add.

I notice lots of folks talking about lose clothing, and that's true. We can't be "bound".
But, I have that thing where I can't stand a cool breeze on my "torso".
For those of us with PERSPIRATION PROBLEMS>
For that I started (in the mid 80's) Patagonia t shirts.
Patagonia calls their product "Capeline". It's Priceless if you have RSD!

They make silk weight to heavy weight. They're polypropelene(sp), made from recycled soda bottles. I found that Cotton is the WORST! It gets damp, and creates a cycle of sweat, chill, sweat, chill.....terrible
No COTTON on my back! Hardly EVER!
Nowadays they're more widely available. In the summer, I don't mind heat, but have difficulty with Humidity. In the winter, I can't stand the cool breeze, like I said, on my back mostly.
So, these garments fit closely, and don't allow any airflow close to the skin. Then, I can LAYER on top!
They make undershorts, and long underpants, socks too, and ALL can be layered.
Patagonia garments are not inexpensive, but they last forever. (Almost).

I am a comfort specialist by profession, and I note that HUMIDITY and BAROMETRIC changes have MORE to do with RSD Dis/Comfort than straight Temperature!
I've studied it, and spoken to others, who aren't as specialized in Humidification / De-Humidification, and well, we can't do much about the Barometer!
I myself, installed in my own home, central air that is slightly UNDER sized, so that it works to DEHUMIDIFY in the summer, more than just Blow cold! No vents exhaust onto where I would sit, or especially, sleep. My heat is by Hydronic Baseboard, computer controlled to respond to outside temperature. (not difficult to do).

Persperation.
I get it on my hands, feet and around my neck and behind my ears, my scalp, and on my back.
I spray my feet with anti perspirant and also my neck, after a shower.
My hands, I use Eucerin constantly. It's a lifesaver! (Just pay for it, it's WORTH it!)

It seems that "closing my pores" after a bath or shower, (Love a whirlpool) is an event. I wear a heavy cotton terry robe, full length, and have a cup of tea, or something ice cold, whatever I need.

I wear New Balance or Merrill trail sneakers. I need support that's comfy.
(I've been seen wearing them with a suit).

I'll be back, with more lifesavers, and my apologies if I've repeated what someone else has said....

Nice to be here.

ASB
Pete

Last edited by AintSoBad; 03-25-2009 at 04:04 PM.
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