A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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  1. faith.hope.love

    faith.hope.love Senior Member

    I know this is a common symptom of Lupus, but I've been worked up for that 3 times in the last 10 years, and they say I do not have it. (Of course this was before the butterfly rash and swollen joints appeared, but until I have organ involvement, they say no Lupus.) I just wondered if anyone else has seen this facial rash appear in CFIDS?
  2. Cort

    Cort Phoenix Rising Founder

    Its funny because I just got this message from someone I want to pass on.

  3. Cort

    Cort Phoenix Rising Founder

    I've had a red splotch across my cheeks for many years. Its quite noticeable when I over do it.
  4. Robin

    Robin Guest

    I had a rash like that and it turned out to be rosacea. They look very similar. Did you see a dermatologist?
  5. Anika

    Anika Senior Member

    The red skin I developed with CFS was diagnosed as rosacea, also. Although the butterly area is more affected, my whole face can get red, especially with heat or over-exertion. And then there are the "pale" times, when the face is drained of color (part of the orthostatic intolerance territory).

    The wife of one of my husband's former colleagues had a very bad case of rosacea, so light sensitive that it was disabling in many respects, as she could not go out in sunlight at all. I think it eventually improved somewhat, perhaps with medication. This was a good lesson to me on how severe even an innocuous-sounding condition can be in terms of living a "normal" life. (Sound familiar?)
  6. faith.hope.love

    faith.hope.love Senior Member

    I don't think it's roscea. There is no flushing, dark redness, bumps, nor visible blood vessels. My cheeks and bridge of my nose are just pink, like a sunburn. I thought it was from crying, but I noticed it came back when I was under a lot of stress. It's barely noticeable, most people just think I'm wearing blush. It doesn't hurt or itch, just feels slightly sensitive. It burned when I put steroid cream on it, so I just leave it alone, and it eventually goes away. I guess I'll just wait and see. If it gets worse when I'm in the sun, maybe I'll have my answer!
  7. Martlet

    Martlet Senior Member

    Near St Louis, MO
    I too was going to suggest rosacea. A dermatologist can confirm and treat it, if that's what it is. I have it very mildly and well-controlled.
  8. Gerwyn

    Gerwyn Guest

    i developed a lupus type butterfly rash which recurs everyso often but resolves with daktocort
  9. Sing

    Sing Senior Member

    New England
    I think I had such a rash two springs in a row when the sun was getting stronger. This was not a sunburn however. It went away after a week or two but the skin under it dried and cracked and peeled off so deeply--it was like a desert. My skin has never done that before or since.

    A couple of times in August I have gotten a hard itchy rash over a hip. This was either green or blue, I forget which. A doctor diagnosed it as lichen! and said there was nothing to do for it--it would eventually go away. It did. After that, I thought of myself as "an old tree". ( If you have read my thread called The Helpful Power of Trees from months ago, you would understand why I would like that.)

    Sorry to ramble. Some of these skin events are quite mysterious!

  10. creekfeet

    creekfeet Sockfeet

    Eastern High Sierra
    I wouldn't have called it a rash since it's not bumpy nor itchy, but I've had redness in that butterfly area for years. Doctors who remarked on it immediately ruled out lupus and didn't test for that, because I'd already had it for a long time. They thought if it were lupus I'd be much sicker. It's sounding as if this may be a pretty common symptom among us.
  11. Denn

    Denn Guest

    Dear Faith.Hope.Love--

    While butterfly (malar) rashes are common to lupus, they can happen to anyone. My SO had a most distinctive malar rash and was diagnosed with lupus in spite of my feelings that she clearly had FMS. This was a decaded ago and her rhematologist did not believe in FM or CFS. She persisted in this misdiagnosis for two years until we went elsewhere to get the correct dx. In the meantime, her misdiagnosis and misprescribing caused significant issues which we deal with to this day. (Fortunately, said rheumatologist retired early!)

    Sure, you can have a true butterfly rash with CFIDS.

  12. pollycbr125

    pollycbr125 Senior Member

    i have all the signs and symptoms of lupus including the rash. rhumatology have said i dont have it even though there is not one single test that diagnoses lupus it is a culmination of factors . of the tests they do do 5% will not test 'positive' . i have the red on my nose and cheeks , i have also had really bad skin rashes head to foot and been hospitalised because of it .my hair is falling out , my joints hurt , muscles ,headaches but cause i am not quite ticking the boxes they have said no .
    i even had a nurse with lupus say to me well ive got lupus and i think your in a lupus flare and i have never been as ill or had a rash as bad as you . she was disgusted by the rhumatologists. ive had folk with relatives with lupus say well you look to me like youve got lupus .

    i was discharged from rhumatology as they couldnt work out what was wrong with me .they even accused me of wanting to have lupus ? and more or less treated me like a basket case .
    like i said ive all the signs and symptoms and all these folk who are close to the illness saying i have it . i said all i know is im ill and i want answers for that i was discharged .
  13. fred

    fred The game is afoot

    I had a malar rash about seven years ago. It lasted a week. I won't describe it in detail but it wasn't pleasant. Several years later, I had a lupus dx from a rheumatologist (he added the word 'mild' to hedge his bets) and was given Plaquenil. The rheumatologist wanted me to come off this after three months when it didn't work but I carried on for nine months, still without effect. I asked him if he thought I had ME and he talked about it being an umbrella term that covered such a wide spectrum of things and that I was an individual and it was hard to say what was going on with my particular make-up. I didn't go back.
  14. willow

    willow Senior Member

    East Midlands
    Yes I'll have one if I deviate from my strict diet. Occasionally if I've overdone it too.
  15. faith.hope.love

    faith.hope.love Senior Member

    Thanks for all the replies and information, everyone. Lately I've been trying to distinguish the differences between CFIDS and Lupus, and I'm not really having much luck because they overlap so much. You can see increased T cells and low NK cell function in BOTH conditions. I do have a positive ANA, and swollen joints with my flares (just my knees), but you can also see those problems with CFIDS. At this time, my doctors are waiting to see if I ever get any organ involvement, so they can't rule it out at this time. They said it can take up to 7 years for a proper diagnosis. Until that happens, I am sticking with CFIDS. My family doctor didn't agree with the Rheumatologist's diagnosis, she felt strongly that I had a mixed connective tissue disease, but that's not her call. Sometimes I wonder if CFIDS and FM are just "subclinical Lupus." They all obviously have an inflammatory component.

    At any rate, the butterfly rash hasn't returned. Not with my latest flare, and not with sun exposure, so I'm thinking it was not Lupus-related. I'm really thankful that I DON'T have Lupus (yet?) because I would really hate to take steroids. They make you gain weight, they tear up your stomach, and they cause bone loss. I'd probably get lots of viral reactivations from the immunosuppression, and that would be awful. I'm hoping I'll always be able to manage my symptoms with anti-inflammatories and rest.

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