what a horrible day!!! I should’ve stayed in bed…my skin is sooooo painful like a severe sunburn and the tissue hurts to touch even gently. Wondering if anyone else has had this… Is this Fibro… I’m newly diagnosed so not sure what’s going on. I also just got off 6 days of steroids … Any suggestions or thoughts ??? I was just looking in my journal and this is the 2 nd time this has happened after getting off a steroid pack.
I haven't had that except when my butterfly rash flared. I'm not sure if it's related to the steriods but I think you should call your doctor to make sure.
I have that often, but not from the steroids. I had a horrible reaction to them and don't take them anymore. Anyway, I get that feeling in different places on my body and no part of my body is spared. From my head to my toes. I can't be touched when I get this way. When I've mentioned it to my drs, they just kind of skip over it and I forget to go back to it since I always have so many other issues I'm dealing with. In any event, after a couple of days, it goes away and then pops back up somewhere else. I'd like an answer to and will make it a point to demand one at my next appointment in a couple of weeks. I hope you start feeling better soon.
It sounds like Reflex Sympathetic Dystrophy. I can remember when a simple snowflake landing on my skin could send me off into tears streaming down my face from pain. I had to sleep in a heat tent because I couldn't have anything touching my skin. The thing is that yours only comes on with the steriod packs, so it could be a reaction to them causing a over stimulated sympathetic nerves system. Talk to your doctor and ask if that is a possibility. I think that doctors are less likely to just throw something out at you when you go in and ask questions that show you might just know a little about what is going on.
Hi, Michelle.
You may be experiencing Allodynia. The skin is painful to the touch, feels almost sunburned. It's an overactive nerve reaction at least that is the current thinking behind it as it relates to Fibro. I haven't heard of it with Lupus, but Fibro symptoms mimic all sorts of symptoms from other diseases and disorders. Doggie's suggestion of RSD could also be a possibility. If you haven't yet discussed with your doctor, be sure to mention it and the timing of when you believe it has occurred. I hope you feel better soon!
Hugs,
Laurie
Thank you everyone. Your all amazing and just so supportive.