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)


advertisement
Reply
 
Thread Tools Display Modes
Old 04-02-2009, 04:54 PM #51
Fireball Fireball is offline
Junior Member
 
Join Date: Apr 2009
Posts: 19
15 yr Member
Fireball Fireball is offline
Junior Member
 
Join Date: Apr 2009
Posts: 19
15 yr Member
Default

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 RSD effects me from the waist down. And It's sad to say. But my guy didn't see me in a dress until after I got hurt. Now I wear dress' every day. For the most part in the winter I have slippers made of mongolian wool. To me, they look like a boot. And I've even seen other's wear them now. Also I wear tights alot. Like yoga pants>? Or sweat pants. They are very soft and managable. And I've seen folks wearing tights with dress' as well, like I do. Kinda makes me feel as thought I've started a couple of new fads. lol. As far as in the summer time. I have slip on shoes. Makes it easier if I can't bend down and tie. With a booty of sorts for sox. And of course my shoes are two sizes larger than I would normally buy. Leaving room for the swelling. The only med I have found that I am not allergic to and works for me, allowing me to be able to walk. Is Lyrica. With the Physician's permission. I fluxuate the mg's. Depending on how I feel. Morning verses night time. I have codeine that I can take if I just can't stand it anymore. And also, at night, I take pamalor. It's a mild anti-depressant that aid's with cronic pain. And it allow's me to get sleep. As we all know the more sleep we get. The better off we are. And it helps' keep me from not having daily crying spells. Since this stuff has grabbed my legs from me. Or the normal function of them. It is kinda sad. Best of luck to you. Soft hugs
Fireball is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluekrikit (12-27-2015), loretta (04-06-2009), MominPainRSD (04-04-2009)

advertisement
Old 04-05-2009, 06:34 AM #52
tjbird's Avatar
tjbird tjbird is offline
Junior Member
 
Join Date: Mar 2009
Location: Shenandoah Mountains of Va
Posts: 37
15 yr Member
tjbird tjbird is offline
Junior Member
tjbird's Avatar
 
Join Date: Mar 2009
Location: Shenandoah Mountains of Va
Posts: 37
15 yr Member
Default

This has been an interesting thread and felt I must add my clothes delima. I am a pajama person and since I have gained 60lbs with the RSD large T-shirts. Most of the time I can't do socks because when I put my toes together my feet and calves cramp. I can't sleep in a bed so sheets are no bother to me. I am so happy I am not alone on the pajama thing!
tjbird
tjbird is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (04-06-2009), MominPainRSD (04-05-2009)
Old 04-11-2009, 02:19 PM #53
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)
Old 05-01-2009, 12:28 PM #54
conni conni is offline
New Member
 
Join Date: May 2009
Location: Oklahoma
Posts: 2
10 yr Member
conni conni is offline
New Member
 
Join Date: May 2009
Location: Oklahoma
Posts: 2
10 yr Member
Thumbs Up

Quote:
Originally Posted by Dubious View Post
Thanks for that MominpainRSD! I can tell by your posts that you are truly one who genuinly cares about people. I know I felt welcome the moment you responded to my first post!

I was a member of another forum before I found this one where people were not so nice. The information I have gained from all of you on this site, has been invaluable for helping understand issues that frankly, I didn't think of before!
Hello....I use under armor under my clothes to keep them from moving about my burning skin! I also found that those plushy soft diabetic socks are great to keep something between my feet and the floor. Carpet feels like those hard burs and flooring is much too cold.
Thanks for your post, and I hope to get to know you! Conni
conni is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
MominPainRSD (05-09-2009)
Old 05-16-2009, 05:29 AM #55
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

Has anyone else tried spray antipersperant for the sweating like ASB mentioned ?

That never dawned on me ! Is it better to let the sweat out though ?
finz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
full_moons_of_hope (07-06-2019)
Old 05-28-2009, 02:02 AM #56
Swhoney Swhoney is offline
New Member
 
Join Date: May 2009
Posts: 2
10 yr Member
Swhoney Swhoney is offline
New Member
 
Join Date: May 2009
Posts: 2
10 yr Member
Smile My daily useful things

Hi All,
I just joined neurotalk and was going over what everyone does to help themselves. I also have things that help me...for one thing I have to stay warm and I mean warm. I live in the desert and dress like it was winter lol. My affected area is my right leg but recently I seem to have problems with the lower half from the waist down. I find that if I wear lycra pants/underarmour or biker shorts under clothing, it helps with the sensitivity. It acts like a second skin and also keeps my legs and back warm. I also use warm ups on top, cotton of course, as we all know the type of material has a great affect on our bodies. I wear mens tanks under my cotton shirts and always carry a sweater since the ac can have a ugly effect on me. To sleep, I use an electric blanket at all times...no matter where I am. I've been in Vegas and Phoenix and have hauled my blanket. Not only does it keep my legs warm but I find that it has a positive effect on my muscle and joint stiffness and is light enough to not cause me pain. Believe it or not but you don't really sweat as much when your symptoms are controlled this way, at least for me. The other thing I do and have found big benefits is my diet. I try to follow the Dr. Hooshmans Four F's Diet from Fla. I really try to listen to my body now more than in the past. When I eat things I shouldn't my body will tell me, mainly white flour and sugary things. Since I follow the diet as much as I can, which I'm not rigid about, I have been able to keep my RSD symptoms at bay for the most part. I have pain but nowhere near when my body is in, what I call, spastic mode. In the beginning, I found melons (like cantalope, honeydew, and watermelon) and fresh pineapple to really control my pain since I also have disc degenerative disease. I think that has been the biggest change I have made that has had the greatest results on my body. My leg doesn't swell and at times is normal warm, which my leg is not cold or like a piece of frozen meat. I am currently looking for recipes that other RSD sufferers have developed following the Four F's diet. The best I have done so far is altering diabetic recipes. My mom has been a big help altering foods to help me. The last thing I do for myself is I keep moving. I excercise as much I my RSD and back problem will allow, which includes jumping in the pool. I also bike and do table excercises my therapist gave me. I find that when I don't excercise I feel worse... more stiffness and my leg looses strength fast. I am so terrified of becoming more immobile than what I already am. So that's what I do for myself... I hope someone can offer something I haven't mentioned that has helped them. I've been searching for a positive support group so if anyone knows about one online pls let me know. I give myself alot of support and more than what some groups I joined can do for me...so finding a positive one is important.
Swhoney is offline   Reply With QuoteReply With Quote
Old 07-03-2009, 09:44 PM #57
crpslouisa crpslouisa is offline
Junior Member
 
Join Date: Jul 2009
Posts: 11
10 yr Member
crpslouisa crpslouisa is offline
Junior Member
 
Join Date: Jul 2009
Posts: 11
10 yr Member
Default hello everyone

I just joined NeuroTalk, after reading through these I learned a lot. Thank you everyone for the great ideas. I have one to add, for RSD/CRPS that affects lower extremities I have found that a product called Toastitoes is very helpful. It is a foot warmer that sticks right to the sole of your sock. They heat for up to 9 hrs. They are thin enough that they never really bothered my sensitivity more then normal socks and shoes. I got them at Walmart in the sporting goods section in Fall and Winter. When seeing them on the discount rack I stocked up. I loved them for Winter, I have also recently found them very helpful for damp cold Spring days. One warning, on the package it states to wear with shoes only. I found out why that is, when you are not wearing a shoe over them they get far too hot. Hope this post finds everyone feeling well.

Last edited by Koala77; 07-03-2009 at 10:09 PM. Reason: No edit necessary. Error on my part
crpslouisa is offline   Reply With QuoteReply With Quote
Old 07-13-2009, 01:24 PM #58
suz66 suz66 is offline
Member
 
Join Date: Jul 2009
Posts: 105
10 yr Member
suz66 suz66 is offline
Member
 
Join Date: Jul 2009
Posts: 105
10 yr Member
Default

All is good info. I don't know if this will help or not, but I buy those soft, downy throws with the fringe on the ends from Walgreens and use them to support my arm at night when I am aching. I also use them to help keep my feet warm at night when I need a little somethin' extra. HOpe it helps you too. Have a great one. Suz
suz66 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
full_moons_of_hope (07-06-2019)
Old 08-09-2009, 02:27 PM #59
Penguin's Avatar
Penguin Penguin is offline
Junior Member
 
Join Date: Aug 2009
Location: El Paso, Texas
Posts: 23
10 yr Member
Penguin Penguin is offline
Junior Member
Penguin's Avatar
 
Join Date: Aug 2009
Location: El Paso, Texas
Posts: 23
10 yr Member
Thumbs up what i've found so far

Hi, I am brand-new to this, but in my short time this is what I have found that helps me. I too have the high-thread count sheets...but the satin ones are awsome! They are light weight, smooth, yet warm (though I have no idea why I would be cold when it's like 100 here). The only con is that they are a pain too keep on the bed if you have kids or pets. I use my slow-cooker a lot to fix dinner now. I can spend a good part of today slowly prepping the food (though sometimes no prep is really needed) then tomorrow morning I put it all together, turn it on and 8 hours later a good and good-for-you meal and I didn't really do anything. For some reason, shaving my legs helps. Yes, the act of shaving feels really wierd and does hurt, but not nearly as bad as when my leg gets cold and the hairs stand on end, to me, that hurts worse. I also where those big, furry, flip-flop slippers.
Hope this helps anyone...i know i'm gonna try some ideas i've read
Penguin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
full_moons_of_hope (07-06-2019)
Old 08-14-2009, 02:36 PM #60
bsfosdick bsfosdick is offline
New Member
 
Join Date: Aug 2009
Location: San Diego,CA
Posts: 2
10 yr Member
bsfosdick bsfosdick is offline
New Member
 
Join Date: Aug 2009
Location: San Diego,CA
Posts: 2
10 yr Member
Exclamation Ketamine Infusion Successful!!!

I'm so happy there is finally more artivles of the success with the ketamine infusions for the RSD/CRPS patients. I was treated by Dr. Schwartzman in Phili in 2006, and had 8-9 months of complete pain remission. I did the followup boosters with a San Diego doctor, but gradually stopped the booster..which I now know was not the right thing to do. Gradually over the last year mybilateral foot pain, burning, crushing sensations are retruening, but I do know that other RSD patients have gone back for another ketamine infusion and had good outcomes. The best part is that I have a doctor here in San Diego that has the outpatient setting to treat patients on the west coast. Most of the other MDs doing this treatment are in Phili & NJ--where Dr. Schwartzman & Dr. Harbut started it. Actually Dr. Harbut & Dr. Correl brought it back from Australia in 2002. Lots of info on the history & treatment protocols at RSDSA.org. You can reach me @ 619-933-5099 anyone wants to connect to the great MD here for treatment. All RSD patients are in unbelievable burning pain, & it is a miracle to have it go away. I experienced that miracle, and it kept me from commmitting suicide..the pain was that bad. Thanks to Dr. S. in Phili & Dr. Harbut!!!

Last edited by Jomar; 08-14-2009 at 03:17 PM. Reason: privacy & per guidelines
bsfosdick is offline   Reply With QuoteReply With Quote
Reply


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 05:38 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 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.