i can hear the booing already. i didn't know it was a no-no until i started reading posts a couple of months ago and then i really thought i was different. here's what's going on and why i need any suggestions for dealing with heat. when i read that recent post on type 2 vs type 1 and then about a study on ice and progression was shocked.

i was using one or two ice packs constantly until last night when i read that. i immediately put the ice packs away and am sitting here with a huge pitcher of water that i'm sticking my hand/arm in a every few minutes, rubbing water on the burning parts of my arm that i can't dunk. i am determined not to use ice now, but it was the only relief i had.

i stopped using heat maybe a year ago when my pain dr recommended trying ice;i was skeptical but as soon as i tried it i was hooked. it was the only thing that helped with the intense, constant burning. the relief was instant and so incredibly addictive. i would put ice over all the areas that were burning hot and keep them on 24/7 just swapping them out whenever they got warm. i slept with them on and woke up when they lost their cooling effect. i never took them off any longer than i had to. i had 4 icepacks in rotation in the freezer: 2 had velcro wraps so i could wear them on my hand when they got warm; the others went under my pillow case and i'd rest my arm on the pillow (a cool solutions pillow that supposedly wicks away body heat- $40 at bad bath and beyond) and an old fashioned ice bag for rubbing any burning spots or as a back up when the packs weren't quite cold enough.

i see a neuropsychologist each week and we worked on strategies to use the ice so i could go out and be more active. we also do visualuzations of my arm/hand becoming icy cold and freezing out the burning so my arm/hand would be tolerable. ice was the only way i could get through going out for a meal. if i went to a movie, i wore 2 ice packs and brought 2 more in a cooler. i brought a huge pillow and found a seat in the back away from everyone but my family because the vibration from nearby seats was painful. when i showered, i washed the rest of me in hot water, then switched to ice cold and icicles (dixie cups if water that i froze overnight for my shower) i'd use this for washing my arm/hand. some days i could stand cold water running on my arm/hand, but other times that sensation was way too painful, so i'd need to use those icycles.

on incredibly hot painful days i would have two big plastic bags full of ice and surround my hand/arm until the burning became tolerabe. my burning is near-constant at least a 6 with hours of the day at 9-10. whenever i did anything, even just getting up and walking around for a few minutes my hand got huge hot red or purple/black/gray; but i'd rest my hand/arm on ice and wow!!! instantly no swelling, color near normal and so much less pain. that reaction convinced me that i was doing the right thing.

i'd heard no ice but i honestly thought my case was different and that my dr knew what he was doing. mine is type 2 a direct nerve injury from a deep venipuncture that hit my ulnar nerve (so i thought i was different), also, i'm stage 1 just burning so i read about no ice and thought 'does not apply' because i thought that was only for people who are not still in the burning stage. another factor- i live in south florida and it's almost 80 degrees now 95 and humid almost all year so i thought i really 'deserved' ice to balance out the heat. i keep the air conditioning at 70 or lower; if i'm in a place any hotter i feel like i'm going to roast alive the burning is so incredibly and unrelenting. ( i just read that type 2 is the most aggressive and that venipuncture nerve injuries are the worst. i don't believe that my pain/rsd is worse than anyone else's- but if my burning sounds much worse than whatever the 'average' is, maybe that's why.)

i told my dr about the extent of the icing to make sure it was okay, and until monday, he seemed to think this was fine. now he says noone else is treating their rsd this way and i need to find other ways of dealing with it. a fan hurts too much, water means i have to put my hand down, but having those fingers n a down position is painful; elevation feels so much better.

it's going to be very hard to give up ice, but i haven't touched it since i read that study last night. after a few hours without the ice, my hand looked bizarre- a white molty red stiff and hard to move. the texture is all wrong it doesn't feel like a hand at all, it feels just like raku pottery- the kind that's hard, rough scratchy. my hand was just that hard until i soaked it.

i think i'm going to be working very hard on just getting through the next few days. my burning is light now because i had a stellate ganglion block tuesday and i've been told constant rest for 2-3 days since when i do anything (10 minutes of exercise) in the first couple of days it doesn't work as well. i'm a little concerned about when i try to get back to my routine walking the dog twice during the day ( i avoid 10-2 when it's the hottest, and it's only for 5 minutes at the most but it's still too much heat without the icepacks). i really don't know how it's going to go and i need to find something that works. i know i need suggestions on anything that can help.

Hi,

What study(ies) tell us to avoid ice? I'm curious, as I'm new to RSD, and have been through a LOT of doctors, a LOT of studies on me, and a LOT of conflicting info!

I was initially put on antibiotics, as I didn't have any known injury, but was VERY ill with the flu (likely H1N1), but have old back injuries - after months of studies and 2 more on the way, I'm told, now by 4 doctors, that this is RSD, and to get the nerve block. Mine affects my foot and leg, was on crutches, then told today no more crutches (thank God, as I have other pain issues already before this started!)

I'm just trying to do my best to take care of myself the best I can - been told my case is one of the worst they've seen. If I take my foot out of elevation, its almost immediate pain and withing a few minutes, my foot starts turning blue, red, etc., then goes up my leg... started with my foot, not is all the way up my leg at times to my groin area.

Thanks in advance anyone can offer re: good studies with the best outcomes!

read a lot, and heard a lot of conflicting information... Would like to see what has worked for others!

Thanks!

I also got a huge amount of relief from ice and had it on most of the day. Since it felt so much better I was shocked that it was bad for me. But, the RSD has spread from one leg to ALL OVER. I doubt the ice was the sole reason for the spread, but if it is a cause of this agony being in more places, then I just can't... I miss it, but if the end result is more places to hurt, then no. I do think when it gets hot here (WA State) I might try it heavily padded so it's just cool, and not cold.
From a fellow ice junkie,
Corinne

Good luck.

I get excellent relief from warm water. Often the relief is nearly total but there's no danger I'll overuse it because I can't tolerate more than about 45 minutes per day total. Any more than this and I get a funny sort of panic attack that grows until I quit. But I get my 45 minutes every day.

Ice works even better but the pain always comes back even worse. I'll still use ice for sudden intense pain on rare occassion. The total pain is probably greater but it's spread over a longer period.

Sukadog,
I've had RSD since '83.
Full body since about '89-90.

I'm reading all this "Anti-Ice" stuff, and, it still confuses me.
I get migraines, (I have TOS also), so these dark blue "Hydroculator" packs, that are kept in the freezer, are a Godsend for me...
I also use heat.

In my 27 years of RSD, I've found that and it seems to me for myself, I must "force" my body into a different temperature range. To Change the Pain!

Like this....
First thing in the AM, I'd get up, make a cup of hot tea, and get in a very warm whirlpool. (I'm a plumber, so had one built in, but, you can buy very effective ones, that hang over the tub for less than a hunert buckos.) $100.

Then, I'd have these freezer packs, in different sizes, I NEEDED one for my head, and neck!
I had electric Hydroculators, for Heat, for my neck, and full back.
Professional stuff.

But, why this outbreak about NO ICE, NO COLD, I can't fully understand.
Still seems to me, that, the Sympathetic system needs to be "Forced" (or Fooled), into a decision!
I hope you can understand my wording.....

But, for instance, the heat in the AM, got me up and moving.. Relaxing my muskles, and letting me move. (I am worst in the AM).
Then, when Intense pain struck, the cool, or cold did wonders.
Just a diversion!
If, we were able to have a home thermograph, it would show us where we're too hot, or cold. The idea is, to Change it!
Force the Sympathetics, to "Think".! Just a bit!

I'm NOT suggesting freezing cold, but, I always used a towel between any big temperature change.... I suggest that for all!

So, I suggest you don't feel guilty about cooling yourself. For as long as I've had this, I've been doing it. I use heat and cool. And, I think it's good therapy!

Be Well!

Pete
asb

Well for me other then water in a bath I can't tolerate something pressing on my rsd area. I wear socks now which is on my condition but they are certain kind. Anyhow sometimes with rsd what may help you get by now is making things worse in the long run. For ex for me not doing range of motion with my ankle helps me get through the day now but in the long run makes the condition not get to a better place. I remember my pain doc saying it is like a dog trying to catch its tail in that the things you need to do for recovery sometimes you can't because of the pain. What are some other treatments you are doing? Are you on meds? Have you tried a warm pool which is something that is supposed to be good. Feel better and I know how hard it is to make changes.

I have been told by my doctors from the very beginning, when I had a diagnosis of peripheral neuropathy but not RSD/CRPS, not to use ice. To be honest, I can't imagine using it anyway, as the pain would be unbearable. Just a cold breeze or droplets of cold water cause painful spasms, so I know the ice wouldn't be helpful to me regardless. For that reason, I did not ask, but if it helps, I was told "no ice" both by my pain management specialist and my neurologist.

(This was recently, as I've just had these problems since last fall.)

http://www.rsdrx.com/CRPSABSTRACT.htm

Scroll down to the study..
hugs,
Sandra

I've been addicted to ice for this pain for years before it was ever mentioned this might be RSD............and out of neccesity because I didn't have meds fir this severe pain. At times it was up to 20 hours per day. Perhaps the ice caused rsd.