Thank you Mslday - i see now that its the same that ali12 sent but i just couldnt make your link work earlier...

Hope for the best - Gitte

After my 2 shoulder surgeries I used my ice machine incessantly to try to get rid of the "burn" - which in retrospect, only made the burn worse. So I used ice more and more and more....you get the picture. Along with aggressive PT, my therapists told me that "ice was my friend." I was in so much pain I woudl fall asleep with it on my shoulder to try to put the fire out. I just didn't have any other tools in my toolbox to try at that point.

And look where I am today.

Be very very careful of the possibility of nerve damage to the areas just under the skin. IMHO, it's just not worth the risk. Does heat work for you?

Take Care, Sandy

I am totally totally anti-ice! It's evil! When I was in PT when I was around 11-12, they used to literally TIE the icepack to my knee. But I dislike it for more reasons than that sort of torture. It just hurts, and I remember some kind of research about ice being able to cause nerve damage- particularly to small fiber nerves that carry pain info. I can't stand in front of open freezer cases in the grocery store, it bugs me that badly. Have you tried heat pads at all? I am a huge fan of my heat pad. Especially right now as it gets colder. My heatpad, a book on my ipod, and a bit of dilautid and I am a happier camper. And my kitty curled up next to me. (She is the best medicine ever! And the best kitty ever!)

Hope this helps a bit!
Lynns

Ive used ice on the affected joint,and it seemed to help short term, but I noticed a coralation between the use of ice on rsd to the length of a flare. I would use ice and although it gave me short time relief [acouple of hours] my flare would last as many days as i used ice, But when i;d come off the use of ice and rough it out,,I;d go a couple of weeks without a flare. The inconsistant part of this , is that one side of my body with rsd , will not tolerate ice at all and gets inflamed with pain immediatly And one side which is the original site, allows the use of ice...go-figure,,. Once again, there we have it,,different degrees or different types of rsd,reacts differently on everyone,,,,,,,,,bobber

I realize most of my TOS buddies which have RSD cannot use ice. My choice is & has been ice since my injury back in 2000. Moving in the cool pool back then was my idea when my neck to my fingers had absolutely no feeling for days weeks. The physical therapist couldn't figure anything out, nothing showed on xrays as the workers comp docs said "WE SEE THIS AL THE TIME". Giving me drugs 24/7 for the pain while driving to and from work & working being oblivious to my surroundings. I am appauld as I look back how physicians can tell you to take drugs 24/7. Immobolizing my injured arm by slinging was detremental to circulation as the PT screamed at the doc WHAT ARE YOU DOING, her fingers & hand is turning blue with no mobility. I had no clue, just get me better! Finally a diagnosis 2 years later & by then the damage was done, CRPS, RSD & FM had set in for a lifetime of survival with pain.

My internal termometer is now set on cold as it is the one single thing to keep the pain & swelling controlled. I do best when my environment is 60 degrees. Now, thats not to say if I moved to the North Pole my system would get acclamated to the weather conditions & it would reverse on me.

In the summer heat, a hot room, clothing, the sun, bed covers immediate flares me & the vascular complications. Increasing the pain, swelling, headaches & muscle spasms throughout the entire body from this triple crush.

All I know is that you have to do what YOUR body tells you it needs & your concious efforts of researching gaining all the knowledge you possibly can from these amazing people here on Neurotalk. By the way, Cryotherapy/crysurgery is used in western medicine all the time to kill viruses & even cancer.

We are all different, I have cold RSD, always did. Immediately following my release from the hospital from my bunion surgery my foot turned to a terrible deep in my bones ice cold burning. This was 4 days following my bunion surgery, in the hospital I was on a morphine pump, at home all I had was tylenol 3's. Despite all my complaints the orthopedic surgeon just kept scratching his head and called me a slow healer, for over 6 months. He insisted that I comply with icing my foot and doing extreme baths despite the increased pain.

To this day I still can't stand to walk on any surface barefooted that is in the least bit slightly cool. Heat for me is my saviour and I use a hot water bottle and hot wax every day to keep my foot warm. I gave up on electric heating pads when my last one inadvertently caught on fire when I forgot to turn it off.

There is some research out of the Netherlands that suggests that N-acetylcysteine (NAC) has some benefits for those with cold CRPS 1 in comparison the use of DSMO which had better effect for those with warm CRPS.

I started a trial of the NAC just over a month ago and I have to admit I am more tolerant of cooler temperatures right now.

http://www.ncbi.nlm.nih.gov/pubmed/12670672

Pain. 2003 Apr;102(3):297-307.

The treatment of complex regional pain syndrome type I with free radical scavengers: a randomized controlled study.Perez RS, Zuurmond WW, Bezemer PD, Kuik DJ, van Loenen AC, de Lange JJ, Zuidhof AJ.

Department of Anesthesiology, Vrije Universiteit Medical Center, P.O. Box 7057, 1007 MB Amsterdam, The Netherlands. rsgm.perez@azvu.nl

To compare the effects of two free radical scavengers, dimethylsulfoxide 50% (DMSO) and N-acetylcysteine (NAC), for treatment of complex regional pain syndrome I (CRPS I), a randomized, double-dummy controlled, double-blind trial was conducted. Two outpatient clinics of two university hospitals in The Netherlands participated in the study and 146 patients, were included over a period of 24 months. Patients were randomized into two treatment groups, one was instructed to apply DMSO 50% five times daily to the affected extremity, the second was treated with NAC 600mg effervescent tablets three times daily, both combined with placebo. Interventions were accompanied by pain medication, occupational therapy for upper extremity CRPS I and physical therapy for lower extremity CRPS I in specific circumstances. Treatment was given for 17 weeks, with a possibility to continue or switch medication after this period, up to 1 year following the onset of treatment. An impairment level sum score was the primary outcome measure. Upper and lower extremity skills and functions, and general health status were also evaluated. Overall, no significant differences were found between NAC and DMSO after 17 and 52 weeks on impairment level and general health status. Significant differences were found for subscores of lower extremity function, in favor of DMSO-treatment. Subgroup analysis showed more favorable results for DMSO for warm CRPS I and significantly better performance of NAC for patients with a cold CRPS I. Results tended to be negatively influenced if the duration of the complaint was longer. Treatment with DMSO and NAC are generally equally effective in treatment of CRPS I. Strong indications exist for differences in effects for subgroups of patients with warm or cold CRPS I: for warm CRPS I, DMSO-treatment appears more favorable, while for cold CRPS I, NAC-treatment appears to be more effective.

PMID: 12670672 [PubMed - indexed for MEDLINE]

MsL

Ice is not supposed to be good and there is no way whether it damage or just short run hurt like hell I would do it. Fo me not putting something on my rsd area but a warm bath helps the most. We are all different but I have met maybe 1 person who cold is good for.

Hey Msl-
I just wanted to tell you about the most fabulous invention ever! I have a heat pad that not only has five different heat settings, but it turns off automatically after 20 minutes! It's the best. I can put it on as I'm going to sleep and not worry about it at all. Check out amazon.com and see if you can find one that specifies that it has this capability. I think I got mine at CVS or Walgreens. (I actually have two- one at my place and one at my boyfriend's, so that I am never without one!)

Lynns

Thank you for all of your answers.
Actually its not me but my son who suffers the rsd In his leg and i think also in his back. He seemed to get releif from ice ealier but oh yes the pain got back. We havent actually tried heat but he is often complaining about feeling hot, and he always turn off the carseat heater after a very short while. I was just wondering if it had been contribuated to him not getting better. And again one of all my arguments to the doctor so we can get him some proper treament.

Gitte

Hi Gitte,

Here is a link that to the Netherlands Association of Posttraumatic Dystropy Patients. Originally posted thanks to CRPSbe from Belgium.

http://pdver.atcomputing.nl/english.html

It has further links to both practitioner and patient guidelines and may be of assistance for you in your discussions with Oliver's doctors. There are many treatment recommendations that are not used here in North America but may be available to Oliver in Denmark.


MsL