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Thread: Hi... New With A Question!

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    Question Hi... New With A Question!

    Hello all. I am new to this board. I am also new to a diagnosis of Lupus (SLE). I am 43, and have had episodes a few times over the past 20 years that have had doctors running all the blood tests due to a family history (Great Grandmother and Gma). ANA panels always high, but nothing past that. Instead I was diagnosed with Reactive Arthritis.

    When I delivered one of my sons, I broke out with a head to toe rash that the doc said was my being allergic to the hormones during delivery.

    This time, I had excessive leg shaking when I got overheated at Disney World on family vacation, and ever since I had feelings like my arms and legs were shaking (but not visible to others), and just not feeling like myself. After being sent to a Neurologist, and being told I have the nerve conduction of a fit 18-20 year old, they ran ANA again. That resulted in a trip to a Rheumatologist, several vials of blood, and a diagnosis. At least we have that finally, as I was starting to wonder about my own sanity. I am active and fit, and was shocked at how 'not right' I was feeling. I go tomorrow for my follow-up as the diagnosis was made and I received a call last week. I love the doctor, and think we will work together well during this journey.

    So here is my question for you all who have first hand experience at this. When I am at my office, I feel like my scalp is burning, and my 'insides' are burning or inflamed. I also notice this feeling at the grocery, or other places with significant fluorescent lighting. I have tried turning off the lights in my office, but still feel odd. Stiff. Achy. Wrong.

    Does anyone else have this issue, and what solution have you found to help?

    Thanks for listening to my story!

  2. #2
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    Lupus patients are EXTREMELY sensitive to sunlight (ultra violet) and fluorescent lighting. We are told to protect ourselves from fluorescent light when we are in department stores, our offices or anywhere else that might have fluorescent lighting.
    If possible, advise your job of your diagnosis and your "allergy" to fluorescent lighting. Ask if your office can be fitted with incandescent lighting (which, by the way, is supposed to be phased out. However, the LFA is fighting this because fluorescent lighting can cause life threatening flare ups in Lupus patients).
    In the meantime, make sure that you ALWAYS use sunscreen (minimum SPF of 35), wear protective clothing, hats and sunglasses (yes, even indoors if you have to). Exposure to sunlight and fluorescent lighting is very detrimental to our well being and that is what you are feeling...symptoms of a flare up that can be very serious.
    I hope that I've answered your question. Please do take special care to avoid sunlight and fluorescent lighting!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  3. #3
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    Even with the lights turned off, still you've been exposed to some lighting, right?

    My body hates F-lighting with a vengeance. Just a little goes a long way.

    Welcome to the board. I'm glad you have a good doctor.

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