Does anyone else have an issue with your skin being sensitive and/or painful? Sometimes it is so painful that I can't stand the contact of even the lightest and softest of fabrics. It is especially bad at night, when I am trying to sleep, and the most sensitive area seems to be the tops of my feet. Am I the only person who suffers with this?
No, no, I hear you. Called hypo sensitivity. Man it smarts doesn't it?!?!?!? Have had it come and go through out the years. I think the worst time was my arms. Have it going on atm on my hands and toes. You are not alone, but is there a solution?? I guess we have to try to relax and breath through it the best we can? Relaxation baths?? I will let you know if I ever find relief, (other than cortisone ointment) hopefully someone else on here has some thing to add in the relief stakes.
I have this problem also. Sometimes the water in the shower feel like BB's coming out. I try to keep the covers loose at night and occasionally have to do without them.
There is a pain syndrome, the name escapes me right now, where you feel like you are on fire if anything touches you. It can be head to toe, and they put people into comas using ketamine to break the cycle, with amazing results for some. But that condition is rare, and doesn't sound like what anyone here has described. Reflex Pain Sympathy Disorder, if I remember right.
If your covers are bothering you at night, they make these bed frames that attach to each side of the bed, and stretch from side to side, your covers go OVER them, so you won't get cold, but covers do not touch you. They are sometimes used for burn victims too.
I sometimes have the issues with the shower, because of nerve root pain and degenerative back issues. Those are my bird bath days. A bit of plain vegetable glycerin soap and a wash cloth do the trick, as tub baths are not safe for me, no hand and arm strength to get me in and out.
There is a special cream called EMLA they use on people for numbing before doing a pic line, but you may need a prescription to get it. Please ask your doctor about any help for this, you really need to be able to get good rest! I hope this resolves for you soon, and no, you are not alone.
hugs, Perplexed
Hi Jazmin. I get this too. when it is really bad i take 2400mg of neurontin. i usually just take 1600mg. my rh dr said it is frrom nerve pain probably from my fibro. another thing i found that helps me is a pretty snug pima cotton tee with lonv sleeves. it's painful getting it on but once it is there it acts as a second skin. just make sure it is tight enough that it doesn't slide around. it really helps my arms and upper body. as far as feet are concerned i bought a set of 1600 count egyptian cotton sheets and it really seems soft enough and blocks any wind from the a/c or fan. when i am up though i have to have very, very soft socks.
I hope something helps you. take care of yourself.
wendy
Have you been dx with Fibro? I know when my Fibro flares, that's what happens. I have had to lay naked with not clothes touching me. I know some friends who also have Fibro too, and they get that sensation. So it's hard to tell if it has anything to do with Lupus. I also have SLE.
I've had Fibro for over 20 years and just recently been diagnosed with Lupus but I'm just now having the painful skin. It feels like a sunburn when it kicks up, especially on my arms and feet. I use a lot of lotion and that helps some. At least my skin is softer with a nice scent. :) It's very sensitive to heat and sunlight as that always seems to make it worse. Good luck with yours.
Hi Jazmin.
You are not alone. I've also experienced on scalp, face, legs and top of my feet.
I find that if you make your own lotion or buy all natural that it helps a lot…all those additives are terrible for anyone but especially those of us with skin problems due to lupus.
I always tell people it feels like rubbing a fine grit of sandpaper over a sunburn! That is about as close a description as I can come up with. :) Because hurts like hell is so nondesript. LOL
angelwing said:
I've had Fibro for over 20 years and just recently been diagnosed with Lupus but I'm just now having the painful skin. It feels like a sunburn when it kicks up, especially on my arms and feet. I use a lot of lotion and that helps some. At least my skin is softer with a nice scent. :) It's very sensitive to heat and sunlight as that always seems to make it worse. Good luck with yours.
Hi Jazmin! No way are you alone! Mine does it to! Not quite so much since I went on plaquenil though. But now my issue is when I’m in the sun even if I’m wearing sun block my skin feels as if someone were holding a lighter or flame and burning me directly wherever the sun touches my skin. It hurts so bad. Even after I get out of the sun. Then I feel like I have the flu with chills afterwards, even if it’s just driving home from work. Does your skin do that too Jazmin?
Oh and I meant to tell you the med that really helps me a lot when my skin is doing that is neurotin/aka gabapentin…nerve pain medicine…and noroflex or whichever muscle relaxer you and your rheumy decide works for you. . I have found this combo teams up well together to work wonders on the sensitivty of skin being touched and causing pain… your in my prayers 
They told me it was moderate to severe FM. On bad flares, not only any touch hurts like a stabbing, but clothes"rub" my skin like a knife. I even had an instance when my skin felt charbroiled from head to toes. Painful and weird!
Oh, my goodness! SO much great feedback. It would take forever to reply to each of you, individually, so please forgive the general "Thank you!!!" So much good advise and great suggestions. I have not been diagnosed with Fibro, but was only recently diagnosed with Lupus, after forcing my GP to test for it! Now I have some good information and good questions to take to both my GP and my rheumy. I appreciate every one of you! God Bless (((hugs)))
I have it. Doctors first called it fibromyalgia, which it might be, along with lupus, but lately it has been called Myofascial pain syndrome, or inflammation of the fascia, which covers your whole body, just under your skin. Clothes hurt, so I live in PJs. Shower hurts, bumping into anything hurts.
Hi Sheila. When I was diagnosed with Fibro/Myofascial Pain in 92 they explained it to me that is was pain in the fascia which is the membrane covering the muscles and Fibro was in the tendons that joined the muscles to the bones. Also with MFPS you can develop "lumps" in the muscles which was one way they diagnosed me. Before then I thought everyone had lumpy muscles. LOL Just recently I was diagnosed with Lupus but believe I've had it all along as I've always had a positive ANA which isn't part of Fibro. Also had what they called MGUS, a particular white blood cell protein that does appear sometimes with Lupus patients or can lead to cancer. Hopefully mine is the former. :)
I do too! I have sensitivity n the tops of my feet that sometimes hurt like crazy when water hits. I have a “lesion” on the side that I suspected was scleroderma. When I described it to someone with a confirmed scleroderma diagnosis, she saw the lesion and said it looked just like her scleroderma…who knows. I am still diagnosed as mixed CTD. Never considered fibro as a cause, maybe I should.
Angelwing,
Yes, the fascia is between the skin and the muscle. Have you ever taken the skin off of chicken for a skinless chicken breast, then you saw a very sheer sheet of tissue? That's fascia. The lumps, oh joy, I know those. I thought they were also part of fibro though, not just myofascial pain syndrome. I have negative ANA lupus. Sorry to hear you have MFPS as well as lupus. So little understood that I might as well say I have "oooga boooga" when I go to the E.R. or Dr. in uncontrollable pain. MFPS means nothing to most medical people.
Bebop,
If you were already diagnosed as scleroderma, then it's not fibro. You wouldn't get a scleroderma lesion caused by Fibro. I am so sorry you have MCTD. Very frustrating disease. They thought I had that at first, then changed it to UCTD (Undifferentiated "unknown" Connective Tissue Disease).Then changed to Lupus and FIbro, which soon caused dozen other auto immune diseases. Just everyday life for us, right?
I am having skin sensitivity issues. I will talk to my rheumy about it. I am not sure that I want to add another med. the story of our life.
Heather - You should consider getting your windows tinted. I have a medical exemption for my tint. It has really changed my car ride. You must have a certificate for the darker illegal tint.