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 06-02-2014, 05:43 PM #191
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Heart Hot flashs what do you do now thats its summer?

Hi im a newby on this site, but by no means new to RSD. Contracted RSD in 2005, from a broken right ankle. Now its going full body.... I HAVE HOT FLASHS ON TOP OF HOT FLASHS and going through menopause, I sweat so bad and it can be quite embarassing and annoying. I use babywipes to cool my face and neck and the inside of my elbows. Im so happy to be able to share and read what others have to say.

KEEP SPREADING THE AWARENESS

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Old 01-02-2015, 08:18 PM #192
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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!!
I hope some of these ideas are beneficial for you RSD. I've now had if for 11 years, and I can't stand much of anything on my left leg, especially lower leg. but the cold and the hot-heat, and the wind, really hurt me. My dr. just retired and need to find a new Dr. in MI. can't seem to find a place to ask for such. But jump on your Rsd fast with a good neurologist that specializes in RSD
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Old 01-02-2015, 08:59 PM #193
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Welcome toni c.
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Old 02-11-2015, 09:36 AM #194
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Confession: I didn't read all of the posts on this thread (I did read most of them tho)

Being newly diagnosed and trying to absorb every bit of information I can find, I LOVE this!

For me: Aloe infused socks are THE BEST! Of course, I only wear one on my left foot. Side note: being in a brace fro my knee fracture, my left foot felt 'cold', so I would have my daughter put a sock on it. Then I was diagnosed with peroneal nerve palsy. I knew this had to be a factor in the 'col' feeling but I still thought wearing the sock was psychosomatic. Until I bought an infrared thermometer. I think that was what led me to the possibility this was CRPS. I'm getting used to the odd looks when I walk around in one sock...

High thread count sheets are the best! Combined with soft pajamas...Heaven!

I haven't tried the epsom salts yet but I plan to.

I am interested in what everyone does for muscle spams...and muscle cramping. Anything???
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Old 03-04-2015, 09:05 PM #195
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Default Cashmere socks from Garnet Hill

The only socks I can wear are the cashmere socks from Garnet Hill. Pricey, but I buy a few pair each year during their winter sale. They are the only sock that aren't tight and they are so soft, they are comforting.
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Old 04-30-2015, 08:43 PM #196
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Default Comfy feet

Hello Everyone! Before ever being told I have CRPS, I always obsessed over my feet. Being a mid-distance runner, this is not uncommon. I never thought much of my sock obsession or collection. In fact, one of my family and friends' favorite gifts from me to them is socks. But not just any socks. They are called " World's Softest Socks", and I think they are! They contain no cotton and wash well, as long a I add a healthy dose of fabric softener in there. They can be found at the Hanes,Bali,Playtex outlets or online and they come in all colors and even size 13 for men. To boot, they run large. Everyone I have ever given them to has asked for more. They have helped me enormously for running, and I am thinking that it is because of this condition that I have obsessed over them for years.
I also have use spence full-length arch support for added cushioning on the soles, but now found Softsoles that are even softer, without compromising the sturdier cushioning for weight-bearing. They have them at Famous Footwear.
I put these insoles into all my shoes I can fit into, now a dwindling subset of my entire collection. But wearing open-back clog style shoes helps. I can slip my shoes off discretely under tables when out -when I can manage to get out for an hour or two with friends. I also use Bean's toe warmers. They keep my frozen toes cozy and I put them on top of my socks on the top of my toes so it doesn't hurt to walk on them. Also, heated blankets! There is always one on my bed, and I supply them to my overnight guests in the guest room - they love it! There is also one downstairs in the living room so on my bad days, I can still sit in the middle of activity of my home (pets) and keep warm and cozy.
For slippers, I always buy them extra large, then add the Softsoles inside them. It really helps make home comfy when going barefoot is not an option.
Finally, Hubby and I have a "no shoe" policy in our home. Guests know to kick off their shoes at the door. Nobody even suspects that I cannot walk without slippers. They all just think we're nuts about cleanliness! : )
I hope these items help someone as I have seen suggestions here that I plan to try. Thank you!
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Old 05-03-2015, 03:44 PM #197
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Quote:
Originally Posted by MominPainRSD View Post
Yes......really everyone......keep these ideas coming!! This is GREAT information to have!!

Karen, I wear my hubby's old white t-shirts too......they're HUGE on me and have been washed a million times so they're soft and they breathe better when I sweat (and so easy to change in the middle of the night if I wake up drenched). Ali, I wear pj's almost ALL the time now.....big, loose, soft flannel......but I've only had RSD since it's been cold......I am DREADING this summer! I always wore capri pants with sandals......now my feet are ghastly red, purple and blue. I don't know WHAT I'm going to do???

Also, I use down pillows and change my pillowcases often (perhaps 2-3 times a week since I'm on them so much) to feel "cleaner" when I'm sweaty or in pain. I am sensitive to odors and fragrances too, so I get nauseous of they don't smell good to me (or if the detergent has TOO much fragrance). I only have ONE set of sheets that is currently soft enough, so I'm in the market for another set.....I will have to be careful to get the "right" blend and thread count. I have bad luck with them "pilling" which feels like GLASS in the bed to me, as do crumbs. That was a great idea about the mens white Hanes socks. I'll look for those. Do they have seams on the toes that bother you??? That is my problem with most of my socks......my TOES hurt so much and the seam feels awful on them. Shoes are another huge problem for me. Even my nice "walking" shoes hurt my feet and cause spasms and jabbing pains. I haven't quite brought myself to wear slippers out of the house yet!!

Anyway......lets keep this thread going!! This could be so helpful to all of us who have RSD as well as for those who love us (and want some great gift ideas of what to get for us!!!).

Thanks again for replying!!!
This sounds so much like me! Crumbs are the worst! I use the high thread count and Egyptian cotton. It is silky but cotton! I don't feel as gross when I sweat then freeze! I am sorry you have all these problems but, it is nice to know, I am not going crazy alone! I thought I was the only one oversensitive to smells! I have been wondering if my RSD was to blame!
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Old 05-03-2015, 06:52 PM #198
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I have CRPS in my left arm/hand. The wind, even just that light breeze from walking is painful. I would not be able to survive without my "arm warmer". Sure, it's painful putting it on & taking it off, but I only do that to shower. The pair (but I only wear one) was only $11 on amazon. I even got pink . I started out with a soft sock & cut off the toes. It keeps my arm warm & saves me from the breeze, plus I can now wear clothes because the arm warmer didn't move around like clothes do (which also caused pain).

Other things I can't live without: a one touch can opener $15ish (another great amazon find), my one touch jar opener $10(again amazon). I HATE relying on someone else when I don't have to. Oh & ooohhh, I can't remember exactly what it's called, but it's like a warming throw. It's small, but bigger than a heating pad, yet really soft & pliable like a blanket. I think this one was cost to $50, but worth every penny. Covers my entire arm & hand. LOVE it. I have to say it, but also amazon..... Guess I don't get out much, lol. The good thing is that I use amazon smile & go back & forth between two crps charities.

There's also this putty stuff you can get at a medical supply store that sits on the counter & you put the bottom of your medicine bottle in it & it holds it so you can get the lid off with just one hand. It was only like $5, I think it cost more for shipping, but it works so well & I really do hate having to make my family have to help, or wait for hubby to get home just to take my meds. I'm just not able to do it with my crps hand.

This are the things I just absolutely don't want to live without. Great question, by the way!

I also have a device that holds my hair dryer, but just don't really every have the energy to do my hair any more. But if I needed to, I could all by myself
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Old 05-09-2015, 10:21 AM #199
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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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Old 08-08-2015, 11:34 AM #200
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Quote:
Originally Posted by Always_Believe View Post
Confession: I didn't read all of the posts on this thread (I did read most of them tho)

Being newly diagnosed and trying to absorb every bit of information I can find, I LOVE this!

For me: Aloe infused socks are THE BEST! Of course, I only wear one on my left foot. Side note: being in a brace fro my knee fracture, my left foot felt 'cold', so I would have my daughter put a sock on it. Then I was diagnosed with peroneal nerve palsy. I knew this had to be a factor in the 'col' feeling but I still thought wearing the sock was psychosomatic. Until I bought an infrared thermometer. I think that was what led me to the possibility this was CRPS. I'm getting used to the odd looks when I walk around in one sock...

High thread count sheets are the best! Combined with soft pajamas...Heaven!

I haven't tried the epsom salts yet but I plan to.

I am interested in what everyone does for muscle spams...and muscle cramping. Anything???
I have severe muscle spasms and after watching an incredibly informative video (that I will find the link to) this Dr. has been researching and treating RSD for I think he said 25-30 years. He said to be careful with muscle relaxers because over time they can deteriorate your muscles, but one medicine he mentioned and approves that has worked great for me and with very little side effects is Tizanidine. My Dr. had no problem giving this medicine a try. It works for me. Hope this helps
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