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 03-10-2009, 09:12 PM #41
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Dr. Scholls makes wonderful diabetic socks that are super soft & have grips on the bottom so u dont slip. You can find them at Walmart. If I can even wear socks I usually wear these or at least some type of diabetic sock because they are not as tight as regular socks
I wear the Dr scholls socks too. But I found that if you look for the Diabetic socks of any brand they are really soft, and dont cut off the circulation. I love them!!!!

Great thread all, thanx for all the ideas!!
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Old 03-10-2009, 10:44 PM #42
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I only wear Crocs Mammoth...they are fully lined and are so warm. I wear them all year round... the lining comes out and can be machine washed and air dried.

http://www.crocs.com/products/women/mammoth/

I have 5 pairs now....

They also make these for men and children...


I know...they are not the best looking shoes but they sure are comfy.


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Old 03-11-2009, 04:36 AM #43
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Originally Posted by mrsD View Post
This response to epsom salts has to do with magnesium.
Some magnesium is absorbed thru the skin.

When you have swelling you have a back up of blood in the small capillaries and this prevent NEW blood from getting thru with its nutrients.

Magnesium reduces swellling by improving circulation to tissues that are clogged up. Also magnesium works against calcium in the NMDA receptor, which can lower pain responses.

Many of us on PN use epsom salts all the time.
(including me)
Do you need to soak for the full 20-30 minutes to get the benefits?? The water gets cold, which makes me add more warm, which makes me add more Epsom salts (to not dilute it)......and they recommend using 2 cups per gallon of water. Do you use that much each time???
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Old 03-11-2009, 11:25 AM #44
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Lightbulb

I never use 2 cups!

I use about a Dixie cup amount in the tub.

I have also made compresses with a very concentrated solution on vacation. We don't have a tub or running water there.
So I got a dishpan and put about a Dixie cup of epsom salts in it and used
a thin cloth (I think it was a HandyWipe --you know those towels you buy to clean with --they don't have any chemicals in them. They have holes in them tho.) I folded it over for several layers.

I'd sit on the dock and refresh it every 10 minutes or so. For about an hour a day. I did this for my bad knee which was terrible at the time. The water was never really warm much and that didn't seem to matter...the temp ...since it was only compresses. The epsom salts worked really well that way too.

Be careful in the tub with Epsom salts... things seem to get very slippery with them!
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Old 03-12-2009, 09:11 AM #45
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Default RSD and the power of the mind

I posted earlier but I forgot to mention the power of positive thought in believing that you will be well and not focusing on the pain (I know it's difficult). I found a course online called "Living In The Truth Of The Present Moment which has helped me a lot.
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Old 03-17-2009, 11:09 PM #46
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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!!!
I always wear flannel pajama bottoms and big t-shirts around the house...
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Old 03-20-2009, 09:17 PM #47
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Bed Cradle or Bed Bar. Particularly in winter can't stand weight of covers on leg. Found a bed cradle online which lifts just a small area of bedding up, put it in the garage last spring and mysteriously disappeared when my son cleaned up the garage. This winter bought a bed bar again online that lifts bedding entire width of bed. Used a heating pad to warm up the air in the space below the bar.
Thanks for all the other tips.
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Old 03-25-2009, 10:59 AM #48
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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!!
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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Old 03-25-2009, 03:43 PM #49
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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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Old 04-02-2009, 01:02 AM #50
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My hsubands RSD is in his foot and ankle. I buy him diabetic socks at wal-mart. They're super soft and not constricting , I've even bought a couple of pairs for myself. He also heats the bed up with the electric blanket before going to bed, then turns it off because of the night sweats he usually gets. The best sheets I've found are from QVC (Northern Nights flannel sheets) and regular sheets that are at least 400 thread count.
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