Hello,

Mine have started about 1 1/2 years ago. My RSD started a bit over 5 years ago. They start out with like freckles under the skin, then they appear as spots or blisters or what ever you want to call them. Here is a link about 1/4 of the page down. I am taking every precaution so my limb does not come to this. Hugs, Roz

http://www.rsdfoundation.org/en/en_c...uidelines.html

I am keeping in my mind are skin is a organ.

Di,
I use a cool wash cloth on my feet to cool the BURN factor in my feet. Works very well. Only time I don't use this is when my feet are cool/cold to the touch but still burn.

Roz,
The first year ('04) I got sores on my feet that would be like blisters but they didn't look anything like blood blisters at first. They were just red then openned up into sores. I don't get them anymore now tho. I also, since back surgery in 11/05, no longer have high blood pressure. Before surgery I did have high blood pressure. 2 days post surgery they wouldn't even give me pain meds for the surgery cause my BP went so low. Had my hubby bring some from home, took them & BP went up to a more normal range. A show on blood test of high R/A can also just show inflammation. Doesn't always mean that one has R/A. I had/have that whenever they did those types of blood tests way before RSD came to be. But I have been DX'ed with Fibromyalgia ('89) & Sjogrens Syndrome ('03) previously. RSD Dx'ed in '04, altho was symptomatic in '03 just not diagnosed at that time.

DebbyV

I am utterly surprised by sudden advice to use ice on RSD affected areas!! That is a no no, and definitely should not be tried!

Ada, I am most surprised by you... you are a huge Hooshmand fan, and claim to have read his book, I know you read his articles... and yet, he states it time and again that ice should not be used. I do hope you haven't used the ice much and I hope that you won't continue it... it'll make you worse.

I know that on this message board you can state your own opinions, and I can state mine. But mine can be held up with studies, articles and anecdotal reports that you can not, should not EVER use ICE on RSD affected areas.

I am just so so surprised by the sudden advice that ice should be used. Other than the nerves being damaged... RSD causes circulation impairment and it'll only worsen with the application of ice.

I hope that no one will follow this advice. Remember, just because someone risked it and survived doesn't mean you will. It's better to play safe than sorry. Remember to always look into any advice you are given.


Here's some sites that I found on a fast search to back up my statements.
http://www.rsdrx.com/rsdpuz4.0/puz_80.htm
MANAGEMENT OF RSD:
http://www.medforum.com/jobline-srch...1/article.html
Dr Hoosmands piecs also at RSD Hope...
http://www.rsdhope.org/Showpage.asp?...3&PGCT_ID=1910
(from: http://www.polyphonic.org/article.php?id=68)
http://www.fighting4us.com/treatments.htm

That's just in a quick search... I can find the studies and other articles if anyone's interested.


BUCKWHEAT:speaking of the lesions, is it like a sore? Because I am getting them... just wondering.

Hi all,
I am sitting here at my computer tossing up whether to post this or not, but here goes---I will.

I guess I am really going to throw a spanner into the works here because I have used ice on some of my RSD areas-----by doing that it is not by any means condoning or advocating it to anyone else. I am NOT telling this story to tempt people to do something they don't feel comfortable with.
I also have read pages of information regarding ice on RSD, including that of Dr Hooshmand (that would be a whole new thead for me)
I get a bag of ice -chips wrap it in a towel and place it over the area that is burning so much I want to die.
I leave it there only to the count of about 5 and remove it. The area is not iced, the tissue has not been frozen, it is just cooled and therefore I feel some relief---albeit temporary. It has not been left on the area long enough to damage any of the skin , nerves or underlying tissue.
This is done with the knowledge of my Pain Doctor--he trusts me after all these years to be sensible I have however injured myself by being careless with my legs and hitting furniture causing breaks in my skin.
It is with some hesitation that I confess to this because I don't want to be thought of as being careless as I am far from it but we are ALL such different beings and I have experimented with lots of things over the years in the search for a little relief-----to this point I don't believe I have injured anything further by doing it
I do appreciate the advise from all of those who are trying to help us avoid damaging ourselves though
Please take care all and if anyone would like me to edit out any of this I will be happy to do so.
Tayla

Ada,

So sorry it took me a while to get back to you on the creams, between a flare-up and my RSD website, I get busy sometimes, lol.

Mine under my chin are much worse than anywhere else, wouldn't you know, because of course they show the most!

Ok, for the creams my doctor prescribes for me:

#1 ~ Bactroban Cream (mupirocin calcium cream 2%)
#2 ~ Traimcinolone Acetonide Cream USP 0.1% (this is the generic name)
I had both of these separately and neither of them gave me much relief. But, together, while not curing it, they certainly make it look and feel much better.

*As always, these are prescription meds and should be discussed with your doctor before use. Of course, here in the U.S., you cannot get either of them without a script.*

Hope this helps!

Mainiac (a.k.a. "Meme")

tayla

it all goes back to what works for one..may not work for another. there are no absolutes with the human body.

i have a back condition stemming from an injury. i was first told i would never walk again. doing exacty the opposite of what the dr's said i was walking in less than 6 weeks. i was told i could never had children for 2 reasons. one my back and the other a serverly tipped uterus. i have 4 living children. i was told to never ever do sports or any type of exercise. to take pain meds my whole life and have surgery to stabilize my back.

i have exercised and done sports. in fact i went into the fitness industry and that is also my educational background. i have not had any surgery on my back. my injury was over 30 years ago. my condition is progressive i may end up in a wheelchair. but when a dr looks at my file..checks xrays and scans and can't believe i can walk..well...i'm going to do what is best for my own body and my life.

i am not saying to go against what dr's say. but do your own research. one dr..one brain...one set of knowledge.

tayla, you do what works for you. i applaud you.



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Curious,

I totally understand what you both are saying, I truly do. And you are right about what works for one might not work for another.

My ice experience?
I was told that if ice made me feel better to use it, and I did...
It relieved the burning and the pain and I thought if I were comfortable that there must not be any reason to worry.

My RSD spread like wildfire from that point on, so the "if it feels good, do it" theory definitely did not help me out. (when I began the ice is was in the back of my neck and my shoulders, now it is in all of upper body except left arm) But, as you say, it may or may not happen to others.

I feel there is enough written about the dangers of it, that I should have looked into it more. I could blame what happened to me on my doctors advice, but it was ultimately MY decision, and it ended up being a very poor decision, on my part. I only wish someone had told me their personal experience with it. I had read what many "experts" had to say about it, but I feel I might have listened more if I had read a personal experience. Maybe, but I'm not sure. That's why whenever I read about someone using ice, I always try to tell my story, mostly because I would hate to see this same thing happen to someone else.

Again, these are my personal experiences, I'm not a medical professional, just someone who wishes I had known. Hope you all don't mind me chiming in on this subject, ice is just one of those "touchy" subjects with me, and I feel if I don't respond, I am doing someone a dis-service by not telling my story.

Have a great weekend, all.

Mainiac (a.k.a. Meme)

Hello again,

The trouble with RSD/CRPS is there is no absoloute, we may well have been given the same name for our disease but that is where our similarity often ends.
It is the same with the advice given by our doctors and caregivers.
I am gobsmacked at times with what I read that people have been told by their "expert" as it is often opposite to what has been told to me by my 'expert'
The same applies to research. I spend hours online as I am sure most of you do and for one piece of advice there will be another that disagrees.
I would doubt that anyone here would have the same set of symptoms as me as I don't have yours therefore it stands to reason that what works for one may not work for another..
So where does that leave us? CONFUSED of course. I guess the very best thing to do is to be accepting and grateful for the advice people give to us based on their personal experiences but perhaps be willing to recognise our individualism by remembering that something so wrong for one may just be right for another.
I say nothing ventured nothing gained but I certainly do not expect everyone to work to that philosophy.

Take care
Tayla

If you read my post I wrote that as a general guideline NO ICE RSDer's unless you are told or know otherwise.There are no absolutes with anything.

This is a better safe than sorry approach ,and until you have some familiarity with your condition etc. ; discussed the nature of your illness with your medical professionals - the best and only way to responsibly approach this illness.(no ice)
I am really sorry about what happened to you maniac but you didn't know
That is a whole other area with the problem of RSD that we must consider. So many that are diagnosed have no idea what is going on.It is certainly not your fault that there is so little information out there. You did what would naturally feel good on something that feels so hot!!!! Your natural instinct took over - to relieve the hot pain and until we can get the correct information out there many more will repeat your mistake .Very sad

Tayla - what you did is responsible- you had the docs OK- you discussed your condition with your medical professionals and had an open and honest dialogue - you didn't really freeze any tissue - you certainly didn't freeze an open blister or wound nor a skin lesion of any sort- the topic of this thread - that is an animal of a whole other color.Once you are in a trusting relationship with a doctor the treatment becomes about you personally not about the disease as a whole .

I too do many thing contrary to what the literature says with the full knowledge of my physicians - I have TOS and I do light weight lifting and some repetitive movements - only at the gym to try to keep my body strong and my posture from falling forward.I have created an exercise program that works for me.I have a hard time holding the (very light ) weights in my RSD afflicted hands but once a week I manage as I think this helps both diseases.

It has been much harder of late but off to the gym I go ( once this ketamine trial is over) as I am determined to keep this body somewhat limber and fit .
I would not recommend what I do to ANYBODY!!!!!.I have been working out my whole life( even in utero ) and think I know what I am doing
It would be contra indicated for anyone but me , but for me it is physio and therapy all in one

Maniacs story is certainly a warning of what can happen if you don't heed the general guidelines for RSD .It is also a reminder that the net can never take the place of a real doctor no matter how hard all of us try to give out really good information
The disease process and recovery take on a whole other dimension once you develop a close personal trustworthy relationship with your neurologist , your PM doc or whichever doc becomes your trusted adviser on this matter.
That is part of the early intervention process that begins the journey to somewhere good and your healing begins

Peace

GnP

I agree 100%

Thanks, Goodn'Plenty, I appreciate your hug, I'm in a flare and really needed the "cyber hug"! There's one right back, lol.

It is sad, and I try to do all I can to warn others of the dangers of ice. To me, I consider it to be like telling your child it's okay to take a radio with them to take a bath. You may have done it before with no bad results. You can't guarantee they will be electrocuted, but you certainly would do anything you could to stop it. We have had many "ice" discussions on my forum, and most of my members who have used it have had similar reactions as mine, so I know I'm not the only one who has been harmed by it.

You are having Ketamine? Very glad to hear it!! I do hear about these treatments first-hand from some of my members, but it is not in my future, that I can see. ($$ issue) I hear such great results from this treatment. I am so happy to hear of anyone getting it, as Ketamine treatments holds such promise to us RSD'ers. GOOD FOR YOU! (if I could jump up and down for you, I would!)