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 08-08-2015, 11:41 AM #201
stillsmiling stillsmiling is offline
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Originally Posted by Beccah67 View Post
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!
I'm right there with you guys. It is very comforting to know others deal with the same exact issues-HUGS
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Old 08-08-2015, 12:04 PM #202
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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

I'm so sorry. The same thing happened to me. In fact I am certain that's why it took so long for me to get diagnosed- because I had such a high pain tolerance, over time I have become more and more sensitive to pain and anything uncomfortable for that matter. About the pain medicine. There have been times when I just get so frustrated that my pain medicine doesn't work I will just stop cold turkey, During that time I just pray, try to lower any stressors around me, try to take as many warm epsom salt baths as possible, listen to soft music, meditate, every hour for 20 mins use "THERMAL ON" moist heat packs from wal-mart (that brand is the only brand I will use.) I hate therma care etc. I wear really soft nightshirts and socks, drink warm cups of chamomile herbal tea, use super soft blankets, watch feel good movies (I love that channel on Roku- Feeln) Most of all be kind to yourself. I know it gets so discouraging, but be patient with yourself and let others help you also. Another thing is sometimes when I notice my pain medicine not working I will take a break from it and then start back up. Sometimes that's all I need to do. Also have you tried the medicine Savella. It's a non narcotic pain medicine that has helped me some. I heard about it after doing TONS of research on medicines that could help RSD. Hang in there. There will be brighter days.
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Old 08-14-2015, 01:33 AM #203
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Default Survival Packs YAY!!!


My name is Mandy I have has RSD and CRPS2 since 2012
WARMTH is the most comforting "temperture wise"
this being said 1st helps oodles especialy when on the road and with big time hypersensitivity/allodynia

So i always carry a plushy velvetly throw blanket.
Almost as rule I recommend to get prepaired to invest in any and as much Memory foam items as possible.. Pillows/TemperPedic beds/ slipers/shoes and so forth.
(to cover my affected left foot/schin) or to tuck underneath my knee to ease the vibrations if i cant carry a memory foam pillow

Always layer up! even in the summertime.. believe me weather changes even a breeze can cause pain or discomfort and nothing is worth hurting badly over not even looking purdy in a skirt.. or wearing some off the shoulder number haha so extra pair of loose sweats and a sweater help

Ace wrap sometime temp wrapping for a short moment help " bring comfort" especially if you need to use the limb for a **small amount of time**. because restriction can pain and get annoying but ultimatly u dont want to cut circulation here...

Water!!! always carry drinking water in the car.. Dehydration and fatigue can also lead up to flair ups and exasserbation and overexhurtion.. ** sorry I have bad spelling and grammar sometimes **

Keep a amethyst nearby or in your pocket. Its a healing stone and it carrys alot of not only healing properties but its cool to the touch and sometimes that constantly cool stone helps with pain and the Amazing color of the natural color luster is soothing..

surround yourself with positive people and nature.. ESPECIALLY IN A CAR RIDE. makes bumps and discomforts along the way easier to cope with..

so far as Epsom salts are a joke!!to me at least because they never work....

The Natural and organic approach has been doing a world of a differance for me.. Diet wise and exfoliating.. (my foot swelling went down significantly and the bright red tinge eased up as well) I ain't trying to preach to diet or become a hippy

thats all i can think of for now but if more comes to mind i will add to the survival kit

stay strong!
Mandy~
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Old 08-28-2015, 08:04 AM #204
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Originally Posted by mcfly View Post
hi there,

I was able to find this thread while searching for specific symptoms I have....I have sat here shocked, reading every post. I have felt like a freak of nature for 2 years, with symptoms that even my mother and fiance cannot help but question.

I cannot believe what I have read; everyone has the same issues I have- this is the most helpful and validating thing I have found since my injury and diagnosis.
thank you for making this "sticky"- i think it helped Google put it high in my search results.

I cannot express how much this thread has helped me. I have never spoken to one person who truly understood, let alone so many.

thank you to everyone.
That is exactly how I felt when I found this thread! Unreal validating!!
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Old 08-28-2015, 08:11 AM #205
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TENS unit - helps break up my spasms and distract me from the pain. Also works great for crowd control and to keep people from bumping into you in crowded places! People tend to steer clear when they see tons of wires hanging off of you.

Lidoderm patches

Biofreeze spray and gel

A paraffin wax bath. I bought the Homedicas one from Amazon.com and absolutely love it. Helps relieve my hand and foot pain well on bad days.

A black sleep mask and lots of sunglasses so I can block sunlight and even indoor lighting when it's really bad. I get awful occipital pain and headaches which concentrate behind my left eye.

A kind, compassionate, patient and loving fiancee plus my three children.

Percogesic - Similar to Doan's, I found the magnesium in those pills seems to help my leg spasms and cramps alot.

Fruit2O Essentials waters - 10% RDA potassium per serving which is very helpful.

Therabeads heating pads, especially the neck wrap one. Less then 2 minutes in the microwave and they're good for 20 minutes of heat

Frequent massages (obviously not during a flare up!)

Icy-hot patches for when I can't use the Lidoderm (those are 12 hrs on, 12 off)

Lukewarm epsom salt baths

Terry crop sweat pants from Victoria's Secret. Sooo soft and cuddly except when I'm overheating, then everything gets ripped off!

Vitamins I take - Apple Cider Vinegar capsules (reduces inflammation) Robitussin capsules ( I forget why but my fiancee said they're like a poor man's ketamine, they somehow react as ketamine does in the body) Vitamin C, B- complex, extra Niacin, Glucosamine, Fish Oil, tryptophan, etc
I am curious about your eye pain. Have you ever seen a specialist that was able to help or reduce it at all? Also when you say Robitussin capsules I am not familiar with those. I have bought Robitussin liquid for my children but they come in all varieties, PE, DM, etc. is there a particular type of Robitussin capsules you use?
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Old 08-28-2015, 01:46 PM #206
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Originally Posted by Optimistic2day View Post
Great Thread!
My 10yr old daughter had CRPS in her right ankle and foot, and just as it appeared to get better she got multiple problems and pain in her abdomin - bladder kidney and bowel problems and significant right flank pain which has reduced her mobility hugely, more than the foot did. This has ultimitley been diagnosed as CRPS migration.
When we go anywhere I have:
Heat packs, microwavable or the chemical mix type when on the move.
Very soft blankets and pillows to snuggle, plus favourite bear.
A soft sponge ball, that she uses as a distracter when in severe pain, and crushes if its unbearable, as she was causing herself thumb joint injures before by crushing her thumbs when in agony.
A palm tablet computer as distracting games using her fingers do seem to calm pain spasms.
Worry beads - as above.


A range of stupid talking games that are very silly and can make her laugh that seems to help.
The pains will happen, and we find ways of getting mentally away from them before they really set in and reinforce themselves works 9 out of 10 times.

I have had CRPS for several years now. I have 4 children ages 8,10,12,and 14. With plans to have more until this disease struck. I realize you wrote this post some time ago. I have full body CRPS and am wheelchair bound. I understand that sometimes we don't want others to see us as victims or feel sympathy for us, and I hope not to offend, but today I just read your post and my heart broke, and I could hardly hold back the tears. Poor little sweetheart. It's so hard for adults to cope. This disease is something that is so much harder than anything I've ever been up against. She is one strong little girl, and you sound like an AMAZINGLY strong resourceful Mom. I'm a praying person, and I'd like to pray for her and your family. Sincere best of luck in this journey.
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Old 09-01-2015, 10:46 AM #207
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That is exactly how I felt when I found this thread! Unreal validating!!
Me too! First thread I read when joining. So helpful and validating. Hope to report some successes I'm trying from the thread. Later...
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Old 11-03-2015, 05:11 AM #208
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Hmm my survival bag looks like this:

Back of the wheelchair: Bag full of medications, cellphone, wallet, it is basically my purse. I never go out without my wife, she keeps an eye on the bag for me. Oh and my water bottle full of ice water.

Footware: I'm fiddling around with it, I bought some REALLY nice Nike shoes before my foot started hurting for working out, and my feet are like 'nope' to the max. But I have found my Uggs are pretty okay, except when my ankles and feet are swollen, then its mind over matter really. As for socks, the wife has big thick wool socks from being in the military, I was going around in just one sock, but now have upgraded to two. Also those fuzzy socks? Its like heaven.

Blankets: Just none, my feet remain uncovered even at night, as is I can only sleep on my front right now, and even that is painful. I can't sleep on my side or back because of positioning. Still working on it, as Im up for hours at night randomly.

Clothing: As its mostly in my feet/ankles (though I get random spikes up into my calves), I wear things that are nice and comfy and easy to put on. Usually yoga pants, a nice light shirt, with a hoodie. I don't even care how far up my wool socks are. Stare at my fashion faux pas!

Mobility: I have canes, crutches, and a wheelchair. Right now the only solution is my wheelchair. I don't use the foot support on it, because it juts out at an awkward angle and leaves me vulnerable for bonking into things. I have found I can lightly cross my ankles and my feet just dangle. When I get my wheelchair (this is a rental) I'm getting the foot support that don't jut out.

Other: Warm cat cuddles, just not on the feet, don't look at the feet, don't touch the feet. But having snuggles from kitties always cheers me up. My wife when we go out, she fends off the glares and rude people, also helps me up steep hills, we live on an island, an island that is made out of mountains....Hills suck. Video games/distractions, the more it distracts me the better. Tissues, eyes water from pain, tissues are godsend.

Haven't figured out the car, for a while putting my foot on the dash worked, but its now cold out and the sun has gone away, meaning no more comfort (feet are usually ice cold). The vibrations and bumps from the car make me want to scream. Any other type of warmth usually is horrible. Epsom salts SOMETIMES help, other times don't. Maybe its a mind over matter thing? Hope this helps someone =)
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Old 11-03-2015, 11:40 AM #209
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Lessa;
We traveled from AZ back to AK last March/April & I found several things that helped to get my pain down that might be of some help to you while in the vehicle. I have a gel pad that I sit on which helps to absorbs shocks made from any bumps; I wrap my feet up in a light fleece blanket to keep the cold off; fleece socks & large crocs/sandals or even warm slippers that don't constrict the swelling helps with dilemma of not wearing anything during the cold season; I use a fuzzy fleece blankets on top of the sheets which not only keeps the coldness away from my body but desensitizes my skin at the same time as well as keeps the weight off caused by heavy blankets; I also use a deep moist heating pad which is a tremendous help too.

I have to say that we hit every single mineral hot springs we came to & I filled empty gallon jugs with the water & another one just for the mud. The healing power of the hot springs is truly amazing & once you've experienced it understand why they are sought after worldwide by those seeking to alleviate their pain even if just a little. I wish we had one close by but the closest one is over 600 miles away!

I hope this helps you & wish you the best.

Gentle hugs
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Old 11-03-2015, 12:21 PM #210
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Lessa;
We traveled from AZ back to AK last March/April & I found several things that helped to get my pain down that might be of some help to you while in the vehicle. I have a gel pad that I sit on which helps to absorbs shocks made from any bumps; I wrap my feet up in a light fleece blanket to keep the cold off; fleece socks & large crocs/sandals or even warm slippers that don't constrict the swelling helps with dilemma of not wearing anything during the cold season; I use a fuzzy fleece blankets on top of the sheets which not only keeps the coldness away from my body but desensitizes my skin at the same time as well as keeps the weight off caused by heavy blankets; I also use a deep moist heating pad which is a tremendous help too.

I have to say that we hit every single mineral hot springs we came to & I filled empty gallon jugs with the water & another one just for the mud. The healing power of the hot springs is truly amazing & once you've experienced it understand why they are sought after worldwide by those seeking to alleviate their pain even if just a little. I wish we had one close by but the closest one is over 600 miles away!

I hope this helps you & wish you the best.

Gentle hugs
Thank you so much!
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