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.