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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: 2crazyboys on June 13, 2009, 12:57:46 PM

Title: My Skin Hurts
Post by: 2crazyboys on June 13, 2009, 12:57:46 PM
Does anyone have pain with their skin?  I can't take rough clothes or sheets on my skin.  My husband will grab my thigh and I about come out of my chair because it is painful.  I rode in the back of a convertible and my scalp and face was on fire.  I did not notice this before...or I'm supersensitive.
Title: Re: My Skin Hurts
Post by: Scottietottie on June 13, 2009, 05:10:33 PM
Hi 2crazyboys  :)

That feeling sounds very familiar. I have to admit - I don't have it now - but I had an awful lot of it for several years when my youngest kid was a baby. I felt so bad cos I couldn't bear to have her sitting on my knee. She used to have to sit to one side. so did the cats! The sensitivilty wasn't all over - it tended to be in irregular areas that I could have drawn a line round with a pen.  The areas would shift from day to day.  I don't know why it stopped happening - but it did. It comes back occasionally but not every day like it was at one time. Because nothing was visibile, it was never taken seriously by doctors. It should have been because it's pretty sad when a cuddle feels like toture!

I hope you can get a doc to investigate and come up with a reason and treat it!

Take care - Scottie  :)
Title: Re: My Skin Hurts
Post by: Patze on June 13, 2009, 05:50:34 PM
Hi 2crazyboys,

Yes!  From the top of my head to the bottom of my feet!  I've had all over hypersensitivity for a few years now, and it seems to wax and wane for me.  There are days where I can barely stand to be touched by anyone or anything (very few these days thankfully), and others where's it's not so bad - Lyrica helps me there.

Have you seen a neuro yet?  The rheumy put me back on it (long story), and it's helped me live close to normal as I can.  I can't say if it will work for you or not, but it's something to ask your neuro about (or any of your doctors).

Hang in there, and if you hear about a remedy or a cause, please pass it on!!!

Title: Re: My Skin Hurts
Post by: 2crazyboys on June 14, 2009, 07:00:21 AM
Thank you for answering.  My husband is just now understanding what problems I have.  He is more careful when we are playing..and I am careful protecting myself when playing with the kids.  I see my rheumy tomorrow (Monday).  I have so many questions and I am reading everything I can.  Thank you
Title: Re: My Skin Hurts
Post by: Dolly Dimples on June 14, 2009, 10:55:21 AM
 Hi 2 crazy boys,  i hope you get some answers tomorrow,
 must be awful having such sensitive skin,
 please let us know how things go .. Good Luck,. Dolly.x
Title: Re: My Skin Hurts
Post by: lynnmarie219 on June 14, 2009, 11:01:00 AM
Good luck at your rheumy appt tomorrow...hope you get some answers.

I have had the skin problem on occasion but it has not bothered me in awhile now (knock on wood). So I better not talk about it or mention it!  ;D
Title: Re: My Skin Hurts
Post by: 2crazyboys on June 17, 2009, 11:36:21 AM
I went to my rheumy appointment and she wants to start me on one drug at a time.  Salagen is first and I have started on the drug and I think my mouth is a lot less dry.  I told her of my skin sensitivity and she told me I probably have fibro.   I guess it goes with SJS.
Title: Re: My Skin Hurts
Post by: Patze on June 20, 2009, 12:39:27 PM
Hi 2crazyboys,

Yep, the rheumy I see also said that the skin sensitivity is caused by the fibro and I'm on Lyrica for it.  I still find that I go in "waves" as it were, some weeks I do pretty good, others, it hurts just to scratch myself. 

Hang in there and hopefully your doctor will prescribe other drugs to help alleviate your symptoms.

Take care -

Title: Re: My Skin Hurts
Post by: Fairy on June 22, 2009, 06:36:48 PM
I also have fibro with the SJS and I am on Lyrica.  It has helped me a lot. I see a big difference in the "drawn up" pain that comes with fibro. My skin still hurts on my arms tho. I feel like wasps are stinging them, my Rheumy says it is the SJS and stay out of the sun.
I hope you feel better soon!
Title: Re: My Skin Hurts
Post by: Crabcakes on July 01, 2009, 07:46:45 PM
I am experiencing some of this hypersensitive skin too. Mine as not too bad. I can't really describe it, but it comes and goes, usually on my arms or back at the waistline. My daughter has MS and she gets the sensitive skin often, and in a severe form. I got her super soft sheets and super soft modal fabric pajamas.