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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


:confused: I find all doctors want to discuss is tablets, and we all know how limited they can be. No help re other [U]practical[/U] issues. Perhaps I expect too much!

Any day-to-day things I have found to help with the nerve pain/allodynia I have had to [U]slowly[/U] find out for myself by experimenting. By the way, allodynia is severe pain as a reaction to things which would not normally cause pain eg. breeze, light touch, clothing, sweating, cool air. I still have practical problems that I can't sort.
I have allodynia in right upper half following an op. I use soft thermal vest sleeves, that I have cut off, to protect from cool air, or touch of other clothing or any breeze. Other fabrics I cannot tolerate next to me. I use fleece sleeves as well. Then I have my mountaineering windproof jacket, I go everywhere in that now.
I use woolly hats all the year round - usually the sort with fleece lining to protect my head from breeze.
I have several neck collars - like small tube shapes that fit round your neck -they can be pulled up over face. And a glove of course.
I use all these things in the supermarket, some in bed! (so that I don't feel the duvet moving against my skin - oh god that is h..l) or when trying to walk the dog on a good day. My husband's breath on my back in bed is h..l - what can I do? It's bad enough that a gentle touch on my bad side makes me cringe. I scare him off.
I use electric heatpads + wheatpacks + disposable handwarmers + stick-on-disposable-heatpads from time to time.
How can one protect one's face? Really hard to do!!!

On hot /warm days I have 10 minutes of being protected then 10 minutes of starting to sweat as I walk, from then on I have lost my insulation, and the wetness on my arm etc. and the sweating itself is painful and I get extreme pain and have to dive for home.

How does one cover from the wind but not overheat? I get stuck in on nice days as I cannot take the breeze combined with the heat. It is so hard to work out how to do this and I am determined to try to get out as much as I can but short of having a space suit or a big plastic bubble around me - how can I do it? I can sort of accept being stuck in on winter days when I have the cold and the wind to deal with but it's very hard to accept imprisonment on sunny days.

All is not gloomy. If it's a still [U]and[/U] hot day you might well find me sunbathing as nature intended in the privacy of my back garden or in my lovely summerhouse. If I can do it I strip off and let my skin bask in the warm sun - then I feel like the old me, just [U]normal [/U] sensation, and I love, love, love it! :bouncing:

I deal with it OK really and am a positive person but will be eager to exchange tips with anyone out there. I am not doing this for sympathy. I want to be practical. Can we help each other? I know many are worse off. I have had major heart trouble recently which has been sorted magically with modern methods but it all pales into insignificance compared with this allodynia. I would tell my cardiologist that I would swop 30 years of my life (I am 55) for one month living without this allodynia!

Anyone got any tips or can I help anyone else? I use things like meditation/relaxation and TENS to get the best out of my life. Maybe I can help someone out there. Little practical tips can sometimes make a BIG difference. I had a very hard time in hospital when I had my heart sorted. It wasn't the medical problems. It was dealing with the open windows and fans that other patients needed. It nearly drove me crazy. Then on the last day one girl said that what I needed was a sort of extra duvet thing that I could cover up with. She was [U]so[/U] right. One of the first things I did when I got home was to organise an extra cover. I bought a furry throw. Then if I end up in hospital again that can come with me and be an all-purpose coverup and protection. She saw what I had not seen as an aid. Bless her.

good luck to all :wave:
Annie





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