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 04-29-2012, 11:47 AM #131
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I have found that Target carries these ultra soft and light tights that are sold rolled up for 5 dollars. Since I have to dress up for work I find those are helpful and I wear shoes that don't have tops so my sensitive spot on my RSD foot isn't being agitated
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Old 04-29-2012, 06:26 PM #132
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Smile Comfort

I have RSD bilaterally on both hands, wrists and arms. I also have it on my incision sites of my SCS, neck, mid back, & lower back. Now it's spreading onto my right shoulder as well. I have found that jersey sheets by northern nights are the best. I have to have very soft fabrics in order to sleep or even to wear. I found a pillow that is the best ever too and its by Soft tex.
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MommadukesCRPS (07-05-2012)
Old 04-29-2012, 06:33 PM #133
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Quote:
Originally Posted by loci1967 View Post
I have severe RSD/CRPS in my right wrist/arm and it seems to be spreading. My doctor is trying all different kinds of meds for me but nothing seems to help the pain. I am losing mobility in the fingers on my right hand and I am seeing some contracture. I am at my wits end with this. Is there anything out there that will help me alleviate some of my pain.
Have you tried parafan wax? It helps relaxe you due to the heat. I put my hands in it and leave it until it cools. I also do aqua therapy. The water is set at 98 degrees and it helps alot. I also get massage therapy and that helps too. JV
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Old 04-29-2012, 06:37 PM #134
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Originally Posted by rbbossong View Post
Hi. I have RSD in my legs. Anything that rubs my legs hurts. So high count sheets, or flannel. Heat is your friend. Sitting in the sun will do wonders for you. (They found that people in the North, who don't get much sunlight,actually are more prone to RSD, go figure) Body pillow with feathers in a flannel cover....LOVE.
Sheets- Northern night jersey sheets.
Pillow- Soft Tex
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Old 04-29-2012, 07:38 PM #135
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Quote:
Originally Posted by Jessicav21 View Post
Have you tried parafan wax? It helps relaxe you due to the heat. I put my hands in it and leave it until it cools. I also do aqua therapy. The water is set at 98 degrees and it helps alot. I also get massage therapy and that helps too. JV
Anyone trying paraffin be very careful and go slowly! Even in the first 6 or so months post RSD onset, my temperature regulation was too dysfunctional to tolerate this in PT. It felt like a severe burn and caused an increase in color changes for days afterward.
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Old 04-29-2012, 07:58 PM #136
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Quote:
Originally Posted by loci1967 View Post
I have severe RSD/CRPS in my right wrist/arm and it seems to be spreading. My doctor is trying all different kinds of meds for me but nothing seems to help the pain. I am losing mobility in the fingers on my right hand and I am seeing some contracture. I am at my wits end with this. Is there anything out there that will help me alleviate some of my pain.
My docs are always surprised at how good my range of motion is now, but I had years in the beginning that I stopped using my hand, guarded it, and lost mobility and it was beginning to waste away. First, you need to figure out a level of pain you can cope with. Then you need to figure out meds and whatever other strategies that will lower your pain below that level. Finally, you need to use your hand for short bursts of time and then stopping when you reach your decided pain thresh hold. As my pain edges toward 6-7/10, I stop and rest until I'm back to a 3-4/10, and then I repeat, etc.

Moving it in warm water is the least painful way for me. If you can't get to warm warm PT, try doing hand exercises in a bath with Epsom Salts! Wash a few dishes if you're able. Paint your finger nails. (It doesn't matter if you take it all right back off, the point is movement.) I still drop things constantly and have major dysfunction, but I do small things, for short periods of time, and it does help!
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Old 05-17-2012, 08:09 PM #137
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Default I have a question.

@Ali12 ,

When you say that your doctor made you a RSD Survival Pack, what all did he include?

I'm wondering because I need help. It's been hard to deal with and because of my age; 14- no one knows what would work best. I have medicine, but not like ideas to help make the pain easier to deal with.

Thanks a ton and I appreciate it. (:
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Old 05-23-2012, 08:38 PM #138
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Default pillows

I tell every one I can do everything I use to do just slower and with coushins!
the right pillows on a trip are VERY important. The vibrations of the road can be an issue for me


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!!
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Old 05-23-2012, 08:43 PM #139
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Default keep trying new things

Keep trying different things. Something will work today that will not work tomorrow and so on. Accupuncture worked 3 times for temperary relief. Then the fourth it sent me and the pain through the roof. The hot wax and epson soaks help. Nothing will make it go away but you can eventually figure out what it takes to live with it. Fighting it and grabbing your boot straps and dealing with it like a fighter is a big NONO.. Relaxing and accepting that you have an health issue allows you to figure out the ways you need to deal with your RSD
Quote:
Originally Posted by Jessicav21 View Post
Have you tried parafan wax? It helps relaxe you due to the heat. I put my hands in it and leave it until it cools. I also do aqua therapy. The water is set at 98 degrees and it helps alot. I also get massage therapy and that helps too. JV
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Old 07-13-2012, 03:17 PM #140
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Default Rsd

[QUOTE=Reddawn600;702662]
Quote:
Originally Posted by stressedout View Post
Thanks...I never thought of using the Tens Out in public! I often get frustrated and avoid places because I am afraid I am going to get bumped or for example when I go food shopping alone. I can't lift alot because of my arm but I get looks like I am just lazy. I even had a gil ask me "why not"? when I told her I couldn't lift a case of water. She said "you look fine". Grrrrrrr.[/QUOTE

I wear it in public all the time but then I'm kind of the type who never really cares what others think. The difference in how people treat you and the elbow room and personal space they give you is amazing. I was in NY yesterday for a few Dr's appt's, wore it all day and never got bumped into once. Actually, alot of people ask about it because they know people who would benefit from one.
Good suggestions. I also use a buckwheat pillow. You can fluff it to fit around your neck and in the summer it stays cool and they last forever. I love mine. Good to hear about some of the suggestions that work for some. The tens machine has been one that my chiropractor and I have talked about, may be worth a try. I too find at night epecially my foot just burns with that deep ache pain and on humid days and when I've done too much.. I have just been recently diagnosed with RSD but found last winter, my foot either froze or burning hot, both with that deep ache. Thanks again for some suggestions. have a great day.
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