I have had Lupus for a very long time...about 61 years or so. I have been very fortunate in that my remissions...in the early stages were for years at a time sometimes...and not just months...or weeks. I am still walking on my own...although with two forms of rheumatism in my hips and knees...no one can say for certain how long I will be able to manage. I have been having a very weird symptom...which I don't know whether to relate to my long term Lupus...or something else. My skin hurts. Yes..I know that sounds odd...but it is happening more frequently...so I just wondered...does anyone else's skin hurt? It hurts more when I am cold...but also...when I am wet...and get out of a shower or bath...into cooler air. It feels like my skin gets tighter...and burns....like a bad sunburn. It's sensitive enough that rubbing it with a towel is sometimes almost unbearable...but so is standing around dripping wet and getting cold! So let me know if any of you have experienced this please..
I also had this symptom and could not find an answer. I thought I was going crazy. I was sent to dermatologist and oncologist with no result. I was even told by a psychiatrist it was in my head. Finally, a new rheum. diagnosed me with fibromyalgia and put me on gabapentin. It works wonders. I guess the pain on my skin was nerve pain. I was told you can have both lupus and fibro at the same time.
Maybe levitra reticularis?
Yes especially when im in a flare! I used to always say that my mom was like your crazy. Hot epsom salt bath with lavender oil sometimes helps
Yes, my skin hurts, which even makes some clothing hurt. My Dr. explained that it is connective tissue in the skin and on top of each muscle that gets inflamed, causing pain, burning, tremors, even feeling like bugs walking over your skin.
Yes to gabapentin (aka neurontin). I felt like a pack of fire ants was suddenly attacking me several times a day. It also addressed my restless leg syndrome. Be patient while you adjusts the gaba dose. I have had no side effects, just relief!!!
Yes my skin hurts very much sometimes, mostly on my back for some reason I have already gotten up in the middle of the night and changed shirts several times to find one that doesn't hurt against my skin.I also get the ants crawling on my lower legs feeling .Prayers and hugs to you.
Thanks for the response...I don't know any other people with Lupus...so it's not something I can ask anyone and get a sound answer. Hope your skin doesn't hurt tonight!
Thanks everyone...I'll check these things out.
Yes, this is something I experience intermittently myself. I have no idea why but then with Lupus, there doesn’t need to be a reason. Merry Christmas.
I’m flaring right now and i have both lupus and fibromyalgia. My fibro definitely causes my skin to hurt. It hurts to where my clothes bother it. No fun at all. I hope u find relief and the answers u need:)
I have this right now in both my lower legs, and have had for a while. I’m pretty sure it’s nerves, but thanks for explaining that, Sheila. I also have restless legs. I also get a lot of swelling in my feet, and increasingly in my lower legs. I take Vicodin for that. It hurts, but this pain is different. My friend with fibro had it all over her back one summer- now I know more about how she felt. I have fibro too, I primarily have lupus. Like everything about lupus, it’s unpredictable and just starts one day. I am finding it harder to walk with this pain added to my usual swollen feet pain. Lupus definitely sucks, I am getting very tired of getting more things wrong with me. I do try ho turn it over to God and just let go of it. Usually works, but it’s had to just accept pain, it always remind me it’s there!
Yes, I've had this for a very long time, the doctors always just dismissed it, so I figured it was nothing. I'm glad others have this problem too and sorry their are others who have this too.
Jane, yes lupus does suck and the really sad part is that unless a person has it there is no understanding it. Heck we don't even understand it .I have been flaring since February and I am so tired of getting my butt handed to me constantly,As far as the pain,it really can mess with your head after awhile.The really hard part of llupus is that sometimes we wear that invisibility cloak ,just because we look okay except for maybe rosy cheeks people think your fine,it really is a nasty disease.Hang in there and keep the faith.Merry Christmas.
You know how when you run a high fever, your skin can hurt? Like, when the water from the shower touches you? That’s the kind of skin pain I’ve been having lately. When walking, my pant leg will touch my skin, and its agony. Sane on my arms. I have no idea what it is, but the connective tissue comment makes sense! I’m already taking gaba and Lyrica for neuropathy, but its not helping this. I’m sorry I have no answer, but now I don’t feel so alone. Merry Christmas to all.
This is exactly the kind of skin pain I am talking about. It happens even if I get out of the shower (warm) into the colder air outside the shower...and it is EXTREMELY unpleasant. I generally wear cuddlers ( a very soft type of long john) under my rougher slacks...to cut down on the discomfort a bit since I work outdoors and with animals a fair deal...but have found nothing to alleviate the other parts.