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 07-31-2008, 10:09 PM #1
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Default Has anyone been successful in getting their temp under control?

My freezing leg and foot is driving me crazy. Literally. Has anyone been successful in getting that deep cold feeling to go away long term? Are there any treatments that seem to help best for that? I've had the nerve blocks--only a temporary temp increase and then back down to sub-zero (so it feels, even in the heat of summer!) And, any help for deep bone pain that increases with barametric changes? Thanks!!!
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Old 07-31-2008, 10:20 PM #2
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Default Hi Miller,

I have been able to get my hands and arm temp. back to normal except with the weather change and letting them swing when I walk. Then the temp. changes along with the color and the pain. Mine was helped with blocks, for some the blocks doesn't help.

As far as the leg and foot pain, this I haven't been able to do but have not had blocks for my lower half. I am completely off of meds due to other problems but I have to wrap my foot and leg in a heating pad to get it warmed up. I move the pad from the foot to the leg. This has been a great frustation to me since I fell a month or so ago. I also put a lidocaine patch on my foot and my knee at times but again, I can't use them all of the time due to the other medical issues I am dealing with. You might try the lidocaine patches on your foot and leg though if you haven't.

I wish I had an answer to help you but I'm walking beside you on that one or should I say limping. LOL

With the barometric changes, that's when I am at my worst. Yesterday, I had trouble walking up 4 steps. It seems to go with the RSD.

Welcome to the group and I do hope you will feel better soon.

Ada
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Old 08-01-2008, 07:03 AM #3
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Default ThermaCare patches

I use ThermaCare patches on my arm when the weather is cold, and it helps warm my whole arm and body and keep flare-ups in check. I wrap one of the arm/neck patches just below my elbow, and it works for about 8 hours. There are different ones for arm or neck, back, or menstrual pain. I think the arm/neck one might fit well on your upper foot or above the ankle. They are sold (RED boxes) at pharmacies, Walmart, etc., and cost around $2-3/patch. They work like the little hand warmers - they warm up when exposed to air. They stick well. Don't get a different brand - they don't stick as well. I haven't had any problems with rashes from the adhesive on ThermaCare patches.
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Old 08-07-2008, 07:45 AM #4
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Default No , Mine are always freezing

No mine are always freezing or feel like they have freezer burn, burning but freezing. I have to wear very warm slippers all day, heating pads wrapped around etc. even in the florida heat. I dont think we will ever be able to control our temp. It is one of the major components of rsd. I also wear arm warmers and leg warmers.
Good luck staying warm! CZ
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Old 08-07-2008, 07:36 PM #5
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I wear a wrap on my hand and usually a "sock" on my foot. I also use a "sleeve" for my arm when the weather changes. The sock is just a sock with the heel and toes cut out and the sleeve in a long sleeve T-shirt with everything cut away except a pocket, neck, and the left sleeve.

No matter how warm I dress my arm will get cold sometimes so have to use clothes only on the affected parts. It seems to fool the brain into keeping it warm.
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Old 08-08-2008, 12:19 PM #6
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I have the frozen foot/ankle issue too. I dread the winter and am getting uggs but even when it is 80 I can have cold feet. The funny thing is for me I feel the best and in summer temps with just tennis shoes on no socks. They actually feel warmer then when I have socks on. I can't have anything pressing on my bad area though I can tolerate socks but like a wrap or pain patch increase pain which I notice goes hand in hand with temp issues.
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Old 08-13-2008, 10:10 AM #7
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Millerprof

I have just discovered this site. I too have the awful temperature problems where one leg is very cold but it is compounded for me because I don't usually have the hot, burning kind of pain. Mostly I have a deep, cold, aching pain in my affected leg. I was prescribed an alpha blocking drug. It is called alfuzosin (brand name in the UK is Xatral). Its licenced use is as a drug for men who have benign prostate enlargement - it apparently relaxes things to make going to the loo easier! It worked wonders for me in terms of increasing the temperature, keeping the colour more regular and making it less uncomfortable. I take 10mg per day and it has made a huge difference.

GymJunkie
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Old 09-19-2008, 08:36 AM #8
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Default The Extreme Changes are under control

I still have my body temperature fluctuate...like right now one hand is much colder than the other. It used to be absolutely frozen in both arms down to the bone, my doctor put me on Norvasc 5mg three times a day. It is for high blood pressure but for me has been a god send for keeping my temps more manageable.
Hope this helps....
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Old 09-19-2008, 11:08 AM #9
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No and it is driving me crazy.
I thought I was in menopause but gyno Dr. says its the RSD.
I also thought it was the Soma I take for the muscle spasms as I get real cold after taking them.Dr said no to this as well but I know they do make me cold but they also help a lot so I keep taking them anyway.
I also tried to blame food as it makes me real cold after I eat.
But have come to the conclusion it's the Stupid RSD
The things that help me are a very soft lightweight down filled twin comforter a blow dryer and a heating pad. I lift the comforter and blow as much hot air under there as I can stand it warms me for a while unless it brings on a hot flash then it's back and forth hot, cold, hot, cold, hot, cold, all day most days.
Also I have learned to wear lots of layers and always take a jacket or coat to the store as they are always too cold for me.Especially in the summer when they have the air conditioners on full blast.I keep my house at 80 until hubby gets home then bring it down to 78 for him as he works out in the sun all day.
I hate air conditioned air it always brings on a flare!
Denise
PS I get sweaty even though I am freezing does that happen to most ppl with RSD too?
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Old 09-19-2008, 03:00 PM #10
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One thing that helps me is to wear leg warmers, the slouchy type on my ankles. Socks on for very long drive me nuts, but I can stand to wear chenille socks. They are so soft. I wear the leg warmers even when I have shorts on in 80 to 100 dg weather sometimes because my ankles get so cold. I wear moccasin slippers that I get from Carol Wright. I go thru 3 or 4 pairs a year of the moccasin slippers. Some of the leg warmers are also made to use as arm warmers too.

I too dread fall, winter, & spring. I have the hardest time then also. I have to use a heating pad to warm my feet up then also. I warm my shoes up with a blow dryer before putting them on or else my feet will stay cold in them. The crazy things we have to do keep things warm or cool. I will have a tank top on due to heat but have to keep my lower legs & feet warm with the moccasins, leg warmers &/or a light weight blanket year round. Good luck to all with the cooler weather coming on.

DebbyV
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