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 11-25-2016, 10:13 PM #1
Sophie0513 Sophie0513 is offline
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Default Tips for dealing with ice cold feet

my feet have been going ice cold as of late.

I have been doing epsom salt soaks that help temporarily.

I was wondering what I could use at night..I am kind of afraid to sleep with a heating pad...

ANd has anybody ever used a hot tub for this problem?

Thanks in advance for any tips
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Old 11-26-2016, 05:24 AM #2
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Originally Posted by Sophie0513 View Post
my feet have been going ice cold as of late.

I have been doing epsom salt soaks that help temporarily.

I was wondering what I could use at night..I am kind of afraid to sleep with a heating pad...

ANd has anybody ever used a hot tub for this problem?

Thanks in advance for any tips
Do you have cherry pit pillows that you can microwave? These things can also be made out of rice (rice packs), and they will do as well.

In the dead of winter, I typically have my mom put a pillow in the microwave, and then throw that into the bottom of the bed. Then you need to put on your fuzzy socks and crawl into bed. It will get warm(er) - although it is *very* difficult to get CRPS feet warm.

Believe me, I know this from experience.

For me, only Neurontin (gabapentin) got the warmth back in. That and calcitonin injections.
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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

Last edited by CRPSbe; 11-26-2016 at 06:21 PM.
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Old 11-26-2016, 11:07 AM #3
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Hi Sophie,

There has been some positive research on the use of whirlpool and CRPS showing that patients who used it had significantly better improvement than those who didn't or used another modality (e-stim to muscles). Whirlpool will increase perfusion, sending more oxygen to the tissues and reduce swelling. We had one member who borrowed a whirlpool footbath and had some improvement with it. The nice thing is you can control the temp that way and add epsom if you want to. Hot tubs can be pretty hot but if you have access to one that is a comfortable temperature for you and your feet that could be helpful too. If you try a whirpool foot bath I'd go for twice a day at least, the most recent study was 3x a day.

Good luck!
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Old 11-26-2016, 12:39 PM #4
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I use a heated blanket at night...either sleeping on top of it or with it over my feet/legs (depends on where my flare up is). I've also been known to sleep with a space heater on aimed at my legs (but don't put it too close because you don't want any blankets or anything to bump it. I have a microwaveable heating pad too...but it's usually too heavy to have on most of the time. Hot baths with epsom salts are a go to for me and if I follow up with ultrasound heat therapy that can extend the relief I get from it.
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Old 11-26-2016, 12:41 PM #5
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Oh...and toe/hand wamers and heating patches like thermacare (and generics...whatever is on sale). Just make sure to follow instructions and if they are too hot...put them OUTSIDE of your socks.
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Old 11-26-2016, 01:15 PM #6
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No particular tips, I guess. But I also tend to have very cold feet... at night especially. I wear fuzzy socks to bed. We live in a townhome that sits on a concrete slab, so no basement. This also tends to contribute to cold feet. During the winter I wear fur-lined boots around home (made by Minnetonka Moccasins.) (No socks.) They keep my feet toasty warm during the day. And when my feet stay warm during the day, they tend to be less cold when I do go to bed.
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Old 11-27-2016, 01:47 PM #7
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Default Thank you everyone

Thank you everyone for the suggestions!! It gets pretty cold here in NJ during the winter and I need to get prepared now if my feet are already cold in November!
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Old 11-29-2016, 10:21 AM #8
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Thank you everyone for the suggestions!! It gets pretty cold here in NJ during the winter and I need to get prepared now if my feet are already cold in November!
I have used an electric blanket and have not had any problems with it. I also use the hand and toe warmers. They are not electric and last for 8-10 hours. I buy them in bulk because they can get expensive. You would need to wear 2 pairs of socks so they don't touch your skin. These packets also come in a variety of sizes.

I don't own a whirlpool bath because I find them too painful, but I do have what they call an air or bubble bath which has air holes along the sides. A compressor blows air through these holes creating many bubbles. It is gentle and helps relieve pain and the icy limb problem. The effect lasts a few hours for me. I find it interesting that the vibration from a car will ramp up my pain, but those crazy bubbles and vibrating compressor do the opposite.

When I was first diagnosed, my therapist introduced me to TENS. After I found the settings that worked best for me, I discovered that after an hour of using it, not only did it help with the pain, but my hand would warm up, the swelling would go down, and the ugly discoloration would be reduced. If you are interested, they are available with a prescription from a doctor usually in conjunction with physical therapy OR you can buy one online. My first unit was prescribed and I had the benefit of a therapist who knew how to use it and my health insurance covered it. I purchased a second one online and it is holding up well. If you do want to try a TENS unit, make sure the one you get is adjustable. Most of the settings actually cause me more pain. To me burst mode feels like thousands of bees stinging me in one spot. I have found the Normal mode with a Rate of 2 Hz and a Width of 130 microseconds is the most comfortable and effective for me.

I also find that once I do manage to warm my limb(s), fleecy blankets and clothing help keep the warmth in longer. I hope that you will benefit from some of these posts. Wishing you warm days and nights.

Shay
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Old 11-29-2016, 05:41 PM #9
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Quote:
Originally Posted by Shay08 View Post
I have used an electric blanket and have not had any problems with it. I also use the hand and toe warmers. They are not electric and last for 8-10 hours. I buy them in bulk because they can get expensive. You would need to wear 2 pairs of socks so they don't touch your skin. These packets also come in a variety of sizes.

I don't own a whirlpool bath because I find them too painful, but I do have what they call an air or bubble bath which has air holes along the sides. A compressor blows air through these holes creating many bubbles. It is gentle and helps relieve pain and the icy limb problem. The effect lasts a few hours for me. I find it interesting that the vibration from a car will ramp up my pain, but those crazy bubbles and vibrating compressor do the opposite.

When I was first diagnosed, my therapist introduced me to TENS. After I found the settings that worked best for me, I discovered that after an hour of using it, not only did it help with the pain, but my hand would warm up, the swelling would go down, and the ugly discoloration would be reduced. If you are interested, they are available with a prescription from a doctor usually in conjunction with physical therapy OR you can buy one online. My first unit was prescribed and I had the benefit of a therapist who knew how to use it and my health insurance covered it. I purchased a second one online and it is holding up well. If you do want to try a TENS unit, make sure the one you get is adjustable. Most of the settings actually cause me more pain. To me burst mode feels like thousands of bees stinging me in one spot. I have found the Normal mode with a Rate of 2 Hz and a Width of 130 microseconds is the most comfortable and effective for me.

I also find that once I do manage to warm my limb(s), fleecy blankets and clothing help keep the warmth in longer. I hope that you will benefit from some of these posts. Wishing you warm days and nights.

Shay
Hi Shay....Thank you ! I am starting physical therapy tomorrow so maybe I will ask about a TENS Unit. I am going to order a whirlpool bath for my feet. I know you mentioned that car vibrations ramp up your pain. I was 36 when I first experienced CRPS in my knees after surgery. I can remember going to the beach and when the waves crashed I would get weird sensations in my knees. and riding in a car was a nightmare. With this latest visit from CRPS, I am not sensitive to noice or vibration etc...shoes are an issue though!!!
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Old 11-30-2016, 08:24 AM #10
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Quote:
Originally Posted by Sophie0513 View Post
Hi Shay....Thank you ! I am starting physical therapy tomorrow so maybe I will ask about a TENS Unit. I am going to order a whirlpool bath for my feet. I know you mentioned that car vibrations ramp up your pain. I was 36 when I first experienced CRPS in my knees after surgery. I can remember going to the beach and when the waves crashed I would get weird sensations in my knees. and riding in a car was a nightmare. With this latest visit from CRPS, I am not sensitive to noice or vibration etc...shoes are an issue though!!!
I had all those issues when my pain wasn't under control yet. Once you get some "grasp" on that nerve pain, a lot of those issues just melt away. Trust me on that. It is worthwile to check with your doctor on what medications you need to take and what dosages.

I can't begin to describe what it was like without Neurontin (gabapentin), but that medication basically saved me, and continues to save me day in day out!!! It is a true miracle!!!

Sometimes, I mean it's all put away in pill boxes for the start of the week, but on the very few occasions I miss a dosage of Neurotin... wwwoooooh boy! It's like turning the clock back more than 20 years, when I first struggled with this. On those few occasions I get transported back to THEN and... gosh gosh gosh, how I don't want to be there anymore.

Painwise at least... (sensitivity, sensitivity to touch, vibrations, the ice / frostbite in both of the legs fully etc... basically: nerve pain).

I feel your pain! I mean it! But something has to be done about it!
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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
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