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On the days I have a flareup it doesn't have to be really bad. My skin hurts and it gets really sore and it feels really raw. Not all over just yesterday when I was having a really bad flare the skin of the left side of my face was so sore that I couldn't touch it. And today the skin hurts so bad on my thighs that I cannot stand for my clothes to touch it. I hope you all know what I'm talking about and give me some advice!!
Posted on 07/26/07, 05:59 pm
22 Replies | Most Recent Add Your Advice
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Reply #1 - 07/26/07  6:58pm
" I absolutely know what you're talking about! It hurts to touch it but there's no bruise or discoloration. It's the weirdest thing. Sometimes I get it on my face....sometimes on my thighs.....a lot of times my ribcage. You're not crazy, trust me. I have that problem quite a bit. Not sure what to do about it, though. Seems like it would be a nerve problem. Do you take Neurontin or Lyrica? I switched from Neurontin to Lyrica but it still happens. SOrry I don't have any advice, but know you're not alone. "
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Reply #2 - 07/26/07  6:59pm
" I have that same skin sensitivity often and it comes and goes in different places. The best advice I can give you is to keep clothes, sheets, etc. away from the areas when they're sensitive. I get this on my feet and legs a lot. I can't even have a sheet touch these areas when I sleep. I usually hang my foot off the bed. Good luck. "
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Reply #3 - 07/26/07  9:24pm
" Same here. When this happens to me I use Biofreeze or Arnica cream on those areas. The Biofreeze can be purchased at a lot of Chiropractor's offices or on line, I purchase the Arnica cream at our town's Health Food store but the brand name is Boiron. I use the Biofreeze at home and the Arnica at work because the Biofreeze is pretty strong mentholatum smelling and the Arnica is odorless. Hang in there! Deb "
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Reply #4 - 07/26/07  10:08pm
" Completely.
It's awful.
Some days everything hurts, even my hair. There are days where I wash my hair and pull it up without even brushing it, because it hurts. *(fortunately, I have curly hair... so no one can really tell)
But, yeah, my skin will crawl it is so sensitive. "
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Reply #5 - 07/26/07  10:13pm
" Hi there,Yes i know exactly what you mean,it burns like fire,and cannot be touched.Your not alone bobo "
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Reply #6 - 07/27/07  12:39am
" OMG! I remember this long before I got diagnosed! It hurts just to have anyone touch you. I remember the first time I told my husband that my skin hurt, he looked at me with the strangest look on his face! That was about 15 years ago...way before I knew what it was! Isn't it nice to know that you are not crazy???? "
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Reply #7 - 07/27/07  1:07am
" B:
When I first experienced the pain it seemed like I hurt from down in the bones thru the skin. My specialist at time said most patients think they have leukemia as the pain is very similar.
I wear COTTON, soft cotton whenever I can. At home I just try to be comfy. I just got a featherbed I put under sheets and it helps a bit relieving pressure on skin. Some days ALL my skin hurts & people have a hard time getting that - my own significant other I know doesn't understand how that's possible. It happens from the feet to the head, really. Just be as comfortable as you can - wear soft light weight clothing - I love soft yoga pants in the winter - summer is too hot, but sun dresses made of cotton are good. Nothing makes the pain just go away - it all seems to have a mind of it's own. I find the FREEZER section in the store kills me - it's like freezer burn getting burned. If soft cotton bothers you, keep material away from bad areas when you can. Many of us don't wear bras (unless we really really have to) because it hurts. I also hang my feet out from under the covers. Sometimes I get feet cramps & charlie horses for no reason (best treatment when you have charlie horse cramps in legs is to stand immediately on them and then they are not sore sore next day - least it works for me most times) Skin hurts, feels like something made of needles is sticking areas, numbness on areas, achey legs & arms, restless legs, etc. It has a multitude of symptoms, more than almost any other disease. So if you're feeling something know it's probably normal.
Can't fix it but you're in lots of company "
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Reply #8 - 07/27/07  10:42am
" Bo, this is a common symptom, I am sorry to say. It will probably come and go. There are times when the wind passing by will hurt. I have asked the doctors that I go to about it and they all say the same thing,.....oooooo, yes, this is called Alloydinia (sic). Basically what this is is Hypersensitivity to touch. What to do about it........there is nothing that I have heard about. If you find a cure for this one, please let me know "
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Reply #9 - 07/28/07  11:42pm
" There were several years that I had a strip of fire rdow the skin of my shoulders & arms. The traveling dysesthesia has made me gravitate to very soft clothing. There's never an explanation for why a particvular area fires up. I think the various skin areas must take turns. It would be easy to blow off as a central phenomenon except for the mechanical soreness that lingers. I wonder if it's a pre-lupus state w/ actual inflammation going on in deep skin layers. "
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Reply #10 - 07/29/07  1:41am
" i have that problem with my arms and shoulders... it feels bruised and hurts so bad .. i actually sleep with 2 feather beds and 2 comforters under my sheet trying to eliminate the pain.. "

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