What do you think?

Discussion in 'Fibromyalgia Main Forum' started by hatbox121, May 7, 2009.

  1. hatbox121

    hatbox121 New Member

    I was dxed 9 years ago at age 19 with fibromyalgia. Since I have been dxed with osteopenia, SI joint dysfunction, degenerative disc disease, osteoarthritis of shoulder wrist and sternum, bulging discs and a bunch of other mess I can't remember right now. Darn fog. Anyway to the point.....recently I have been having this red butterfly looking area on my face. It's not raised and goes away after a day or two. I've been having dizziness, spasms, numbness in feet and hands, hypersensitive to smells and touch, stiff fingers, headaches, vision problems(blurry, eye pain, burning eyes), I feel like I'm still moving when I'm still(like after parking or stop walking) and I'm just really really tired. Of course I'm in pain but that's been going on since I was 6. I'm just wondering if it really is fibro or if it could be lupus or MS. By the way I do have family history of autoimmune diseases. What do you think? Don't worry. I know you're not a doctor. I'm going to a new rheumy next week. Just wondering from those who live with it what they think.
  2. Janalynn

    Janalynn New Member

    Hi there -
    I'm glad you're seeing your rheumy next week. A butterfly rash can be indicative of Lupus.
    Some of the other symptoms could be Fibro - many of us have much of what you mentioned, but since it's different than what you've experienced before, it's definitely something that needs to be checked out.

    I hope you'll let us know how your appt goes.
    Keep positive thoughts!
    [This Message was Edited on 05/07/2009]
  3. hatbox121

    hatbox121 New Member

    Thanks for the reply janalynn. I will post what she says although at this point I'm so skeptical of doctors and not very trusting of them.
  4. shelbo

    shelbo New Member

    You mentioned burning eyes.... I get this! I have ocular rosacea... Are there certain things you find bother your eyes? Are they dry? Do they ache or itch, feel gummed up? How do you clean them?

    The rash on your face you mention could be rosacea (this is redness...usually not raised. It can be dry and sensitive or it can be oily, spotty and sensitive. Mine is the former...) How are you caring for your facial skin?

    Some people who get rosacea on their faces get the eye problem first, sometimes after and people can have the eye problem without the facial problem and vice versa....

    Butterfly rash can be indicative of Lupus but rosacea tends to affect (esp in females) the cheeks. It affects my nose, cheeks and, to a lesser extent, my chin...

    It might be worth you seeing a derm and an ophthalmologist to see if it's rosacea...

    Shelbo :)
  5. hatbox121

    hatbox121 New Member

    The burning is like it's on fire and is always with intense pain and I feel like I can't open my eye because of the pain. Not to mention it's like I have "drunk" eyes. They kinda swirl or dance around kinda like they're drunk. Hard to explain. Like I said the burning and all of that comes together. However most of the time they do hurt. I tried drops and everything but nothing helps them. It goes away after a couple of days. I can't go anywhere then because the sun is excruciating.
    The rash is not on the part between the nose and cheek area like rosacea would be. It kinda skips that part for whatever reason. It looks like a sunburn basically. It goes away after a day or two. I use aveno wash and moisturizer with sunscreen. I usually do aveno for everything since my son has asthma and reacts to fragrences. Does rosacea come and go?
  6. shelbo

    shelbo New Member

    Hi Hatbox.
    Did you notice if any of these problems started when you began using the sunscreen you're using? Some sunscreen agents (in skincare or makeup) can cause painful, burning eyes even if you don't bring the product near the eyes....so this is something to think about. You could try a sunscreen with only zinc oxide and titanium dioxide. I think California Baby fits this description as does Liz Earle's (UK but they do ship internationally and you can buy a 25ml one first to check for compatibility). You say it goes away after a couple of days...obviously you try not to go out when you're in pain so maybe you're leaving the sunscreen off and they're getting better, then you're putting it back on to go out and it's kicking off again?? You have to become a bit of a detective...Keeping a diary is useful to help you in finding links...

    Rosacea can look like a sunburn and be very tender and sensitive, and sometimes tight. Rosacea can be aggravated by temperature change (ie hot to cold and vice versa in winter), the sun, heat, alcohol, spicy foods and personal trigger foods unique to you eg for some seafood can be a problem as can tomatoes, stress etc, chemical sunscreen and chemicals, essential oils, alcohol and fragrances in skincare. There are lots of triggers and it can flare up and subside depending on whether you have been exposed to your triggers and stuff like how much or little stress you have been exposed to, whether your sleep has been good or bad etc...
    Have you tried Theratears drops... there is a nightime gel one that can also be used in the day to soothe and moisturise and a lighter drop?

    What are you using to clean your eyes and what mascara do you use and is it waterproof?

    Oh, and try very dark sunglasses when you go out...
    I cannot emphasise how important it is for you to see an eye doctor because severe untreated ocular rosacea can lead to complications.. I don't want to frighten you but it's so important. You could also have Iritis from what you describe with the painful reaction to the sun... you really need to see an Ophthalmologist asap for peace of mind...

    Just ask if you need anything else... Shelbo :)
    [This Message was Edited on 05/08/2009]
    [This Message was Edited on 05/08/2009]
  7. shelbo

    shelbo New Member

  8. hatbox121

    hatbox121 New Member

    Thanks for the bump shelbo. In response to your last post, I don't really wear make up. Never really did much but never do at this point. Like I said I will be seeing my rheumy next Monday, so I'll be bringing this up. If she does feel like it's rosacea then I'll save up to see an ophthalmologist. I don't have any insurance so I can't just go. The eye pain actually began before the rash looking thing did by a couple of years. Yep, years. It began as just rarely but has recently begun to happen with more frequency. Oh and I've used the same sunscreen for a while and it happens even when I don't use it at all.

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