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 11-23-2011, 01:49 AM #1
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Smile Accident prone/Burning incidents

This has been an issue for several years. A combination of strenght problems, muscle spasms and coordination issues has made cooking slightly scary, but in addition to those issues, I also don't register heat normally anymore and it seems once I do, I'm unable to react as quickly. Now, I'm finding that my hands seem to overreact to heat as well. For example, when just passing my hand over a steaming pot, they turn bright red, feel similar to second degree burns (which I've had several times) and remain hot. I have burning pain constantly, but this is different. I've experienced color changes and shiny skin, but this is going from normal to fire engine red in a matter of a few seconds. Actually, I think I saw the color change, before I felt the pain. Taking breakthrough pain meds returned me to baseline levels and there was no lasting issues. It seems like the way my body responds to heat is becoming more dysfunctional. Problems with cold temps seem to be increasing as well. If I try to hold something cold from the fridge, my hands register it like it's from the freezer. So while I couldn't handle prolonged exposure to cold in the past, now any contact is a problem. I was lucky to discover glasses with plastic grips that I can use for tea and cold drinks, which has helped at least with that.

Has anyone else experienced these same issues? Did you develop them earlier on? Have they continued to get worse? I'm 10 years post onset, btw.

I'm concerned that it's just a matter of time before I have a serious burn. I've had countless small ones... Losing the ability to cook would force me to have to have help with much greater frequency... Something I'd prefer to avoid for as long as possible. I'm not sure if I'm gambling that nothing bad will happen, or if I'm being paranoid...

Thanks in advance!
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Old 11-23-2011, 09:05 AM #2
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I have the exact same issues that you describe. In addition, sometimes when I get into a very warm epsom salts bath the bottoms of my feet turn deep purple, almost black. (The first time I saw it I thought my feet somehow were quite dirty and I tried to scrub it off.)

Passing my hand over steam causes the same reaction that you have. Unfortunately my symptoms have become progressively worse.

Meds have had no effect on my color changes. As a result I have not cooked in well over a year-until last week.

Since I began my current round of tDCS treatments the color issues have greatly improved. The bottoms of my feet rarely change color. Steam is no longer effecting the color in my hand. During the past week I have prepared several meals with assistance. My hand no longer goes into a stiff claw.

I did not realize how miserable and dangerous these symptoms were until they started to improve.

You are not alone. There is hope for improvement!
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Old 11-23-2011, 10:51 PM #3
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I haven't had the RSD in my hands for very long...but I do have a sort of delayed response to heat. I noticed this when I grabbed a plate of hot food and it wasn't until about 30 seconds after I was holding it that I realized it was burning my fingers (which were on the bottom of the plate). I also have a hard time judging temperature. Cold/cool anything I am obviously very sensitive too...but even with heat I just don't seem to feel the heat. My boyfriend brought me a bowl of "hot" water to rinse my hands after I tried cleaning out a pumpkin for halloween (not my smartest move ever btw) and even though I could see the steam coming off the water it felt cool to my hands. Very odd...you would think after how cold my hands were from the pumpkin that that the water would feel that much warmer to me...but it didn't.
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Old 11-24-2011, 12:59 AM #4
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Just wanted to update, I had a doc appointment today. (I was trying to get responses hopefully before I saw him.) He pointed out an important fact, the thing that freaked me out was that it appeared I had suffered a severe burn, when in fact, it was a temporary over reaction of my sympathetic system. He agreed that the best course of temporary action was to use breakthrough meds, which helps prevent flares in my case. He wasn't surprised that my sympathetic system continues to gradually decline, and thinks Ketamine offers me the best chance for possible remission. If Ketamine fails, then we'll discuss the next option, and so on.
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Old 11-24-2011, 10:28 AM #5
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That makes sense...I'm not sure exactly how we're supposed to really tell the difference between a burn and our burning pain in a situation like that when the flare is caused by the heat.

Cooking is dangerous for me...a couple of months ago I burned myself when hot oil splashed onto my face, arm, and leg. That was easy to tell that it was a burn though because the skin blistered up and everything. Since then I have been extremely cautious when in the kitchen.
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Old 11-24-2011, 02:07 PM #6
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Quote:
Originally Posted by catra121 View Post
That makes sense...I'm not sure exactly how we're supposed to really tell the difference between a burn and our burning pain in a situation like that when the flare is caused by the heat.

Cooking is dangerous for me...a couple of months ago I burned myself when hot oil splashed onto my face, arm, and leg. That was easy to tell that it was a burn though because the skin blistered up and everything. Since then I have been extremely cautious when in the kitchen.
I collect new burn marks every couple of weeks...my prior one was from oil as well. There was a blister and red mark that I was expecting to become a scar.

This last time during the steam incident, had they been real burns and not just a sympathetic reaction, I wouldn't have been fine the next day when my breakthrough meds wore off. There would have been pain, there would have been marks.
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Old 11-24-2011, 06:53 PM #7
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Well I am glad I am not the only one who 1st, doesn't cook that much anymore for a number of reasons. I have broken many of dishes, pyrex dishes etc. I have trouble carrying pots/pans etc. But as you all have mentioned the temp. sensitivity. With heat, my hands do not feel the heat until they are lobster red and I am digging at them because I am itching them. Let's just say there is no heat hot enough for my hands if that makes sense. Yes, there comes a point when I feel the heat, but by then it is so hot and steamy, it is like being in a sauna. Yet cold, that is another whole story. I cannot even open the refrigerator door without my hands getting stiff from cold and once they get cold, forget it, they are cold, frozen forever. (ok, not forever, but long enough) I have to use a plastic cup with a handle to drink out of for cold beverages. (one of those 2 ply thermal travel mug things, where it keeps cold in but not on the outside) If i get something out of the freezer, it is like I have to plan for a timed race. Like I have half a second to open the freezer, grab it, and throw it on the counter. It burns to the bone.

I just don't get any of it and probably never will!!! but luckily I have you all to discuss it with. (and you won't think I am crazy)

Just thought I would share my experience!
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Old 11-24-2011, 08:00 PM #8
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Wow! This is freaky! I just got done burning myself with a grease splatter from broiling some turkey burgers and now I'm reading about all you guys having the same issues.
At first the grease just felt wet but after a few seconds it burned like all get out. I have trouble sensing temp changes too.
Also I'm beginning to loose my grip of things with my good hand. My neurologist has said my RSD has not only taking over my entire left side but now it's slowly making it's way to all my limbs.
I hope it doesn't get to were I can't use either hand. I already went through that for two months and it sucked big time!
My cerebral atrophy getting is worse, I'm loosing thoughts in a middle of a conversation, having to use a wheelchair more and now this. Yuk!
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Old 11-24-2011, 09:43 PM #9
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My legs have increasing become more and more sensitive to heat over the last 4 years.It was very slow and insidious when the heat sensitivity first started and at first I thought I must be seeing things but it has progressively gotten worse. I have to be very careful how hot the shower or bath is as I get quite a heat rash and it makes my adductor muscles spasm, ouchie. Over the last year my arms occasionally due it in the shower and it actually runs along nerves on both my legs and arms. You could easily do neuroanatomy on me. I will be starting the 10 day outpatient Ketamine treatment protocol the middle of Dec. I hope it will help with the heat sensitivity.
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Old 11-25-2011, 02:51 AM #10
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Bodum makes great glasses in different sizes that I've found are perfect, btw. They are super light, and have a knobby plastic grip that protects against heat and cold. I was constantly breaking glasses. Every time my cleaning person came she'd have to scavenge for glass shards all over my kitchen. Since getting these, I haven't broken one yet.

You can use these suckers for hot tea or coffee, or for ice cold beverages, and you won't experience any temperature fluctuations. They also have carafes with neoprene sleeves that again save my hands from the cold and are far easier to grip than normal glass--great for Ice Tea, and water.


WWW.bodum.com Available online or there is a search function for retailers that carry their products.

For silverware (another big problem for a long time) I use chunky vintage lucite silverware. They're light and easy to grip. The big rubber ones that I received to help accommodate my disability are better than normal silverware, but are a little too heavy and too big--so they're much less comfortable than the lucite ones.

Looking back, I made some less healthy choices in the past based upon my struggles with silverware. It's not fun to need help cutting meat, let alone getting food into your mouth in a socially acceptable way... Sandwiches are easy to eat for example, but I didn't need the carbs. Eating soup was a painful and difficult process. It took the most fine motor coordination and finding a grip that's perfect for me, has made the difference between wearing it and eating it... Etc.

If anyone has any other products that they've found help them in the kitchen, I would certainly appreciate it!
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