I'm experiencing new and different symptoms after being diagnosed with Lupus 12 years ago. Is it maybe Fibromyalgia? ??

Hello. I've had lupus for over 12 years I was diagnosed when I was 18. I have never been on one of these sites but I am kind of feeling scared and frustrated today so I thought I'd give it a go.

My Lupus led to kidney failure almost immediately. In retrospect I probably had it for years and was misdiagnosed. I've been in remission for almost 4 years, but I still experience all the lupus aches and pains in my hips knees and ankles. Also I'm incredibly sensitive to the sunlight.

For the past year or so I have noticed the strange symptom where my skin will feel like it's on fire or I have road rash all over. My clothing hurts my skin, ANY touches, even the bottoms of my feet hurt! Sometimes it will be a random small patch of skin, or sometimes, like today...My entire body feels like I've been skinned alive. It will last anywhere from an hour to days. Seems pretty random, except that the sun will ALWAYS make is worse. Almost unbearable.

I've been reading up on people's posts and blogs and I've noticed a common thread amoung people with Fibromyalgia.

Obviously I'll be going to my Rheumatologist asap....but I kinda hate Western medicine sometimes and I'd love outside opinions.

Thank you in advance!!

Lindsay

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  • Hi, I also get this where my skin doesn't want to be touched at all. It's terrible because you can't even stand having your clothes touch you. I do not think it's a fibro thing though. I'm not diagnosed with fibro but am with lupus. I've read a lot trying to figure it out as a lot of lupus patients also have fibro, but skin stuff seems more to do with lupus. I've also noticed the burning sensation has come on more as my illness has progressed and is the worst when I'm in a bad flair. When I flair up, it definitely feels like my skin is on fire. I think it's due to our immune systems attacking our skin and causing damage, I know that's why we get lupus rashes so it only makes sense to me that would be the cause for the skin pain. And the fact mine also gets worse with sun exposure also tells me it's lupus. Anymore even if I'm only outside for 15 mins my face and say the backs of my hands, whatever areas that are exposed will start to feel like they are burning and then I get a rash and it seems to last for at least a week. In the beginning it wasn't like that, only now that the lupus has progressed have I become this photosensitive. I hope that helps somewhat. I know our bodies do such strange things with lupus and sometimes it seems like new symptoms from out of no where.

  • Hi. I also have a milder version of the skin pain you describe. I get it in small patches. It is nerve pain and I have been referred to Neurology. I didn't have nerve pain initially when I was first diagnosed with Lupus, it came a couple of years later.

    It means that the lupus is not only causing inflammation in the joints (and in your case Kidneys) but also the nervous system or peripheral nervous system.

    It's good you are seeing your consultant, he might want to refer you to neurology. It's good to get it checked out in case the inflammation is causing any damage to your nerves. Try not to worry in the mean time (easier said than done I know).

    Best wishes xx

  • Dryad thanks, ya the more I read, the more I think that's my storY. First diagnosed with Lupus, and I never felt this specific skin pain, with no rashes with it (obvious lupus flair). They started gradually a few ears ago.

    You mentioned possible damage being done to my nerves? Can you elaborate on that?

    Thanks again!

  • Slowly feeling less scared. Thank u

  • The way I understand it (and I could be wrong - I'm not a doctor) is that with each flare, inflammation can cause damage to the myelin sheath that protects the nerves.

    So during a flare you might get 70% pain in your nerves, then when the flare calms down, it goes down to say 20% pain - it leaves a residual pain which is slight damage to the nerves.

    This is why some people with M.S. sometimes get referred to Rheumatology to test whether they have Lupus because these two autoimmune conditions cross over.

    It seems to me that people with Lupus and nerve pain don't tend to see the pattern of degeneration that some people with MS get. SO what I'm trying to say is; don't worry about ending up in wheelchair as this is very unlikely. I don't want to add to your worries!!

    And some of my nerve pain goes away completely between flares.

  • Hi your description of the pain sounds like a friend of mine with Fibro. How's your renal situation? I had renal failure already too on my Sle diagnosis back in March 2000. I went on to dialysis then successful live unrelated transplant 9 years ago. Personally I don't believe in remission. Even with negative results for years now things get worse for me personally. My renal consultant is the only one I see regarding all the problems, I tell him and he refers me on. Ive seen a rheumatologist once so far with the follow up being a year from then as too high a demand on services here. He blamed my meds on my problems.

  • Congratulations and good luck on your transplant. I am on my second kidney transplant. the first one failed after 6 yeas but this one is standing strong

  • Yay! That's fab to see. It's pretty shocking new to find out your kidneys are done for. Isn't it fantastic that they are selfless people out there who donate organs to others like us. Such a precious gift and you've been incredibly lucky to have 2 transplants. Hope this one sees you through x

  • Hi Lindsay

    Sounds like you hit a bad patch. Feels like neurology were someone's rubbed sandpaper all-over your skin." I find best thing for me is try rub in a cream or lotion.best if its been in fridge and its cold, so it cools the skin. Loose clothes. Not trying to teach you to suck eggs, as you will more than likely done this."

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