?? For those with Lupus and FM

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, Jun 8, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    Hi all. I have been diagnosed by my GP with Lupus, but he is referring me to a rheumy for a 2nd opinion. I spent the afternoon at the lake with the kids because it was such a beautiful day here. Within the first hour of me being there, my friend noticed I was very red and was getting sunburned. I looked down at my legs and noticed big red blotches of sunburn here and there on my legs.

    I covered up with a towel for the remainder of the time I was there but now that I am home it is evident I am sunburned. I literally am burnt to a crisp. I grew up on the beach in Florida, so I know what my skin is like. I have never buened like this in my life. I mean yes I have sunburned this badly but not as quickly as I did this time.

    My husband was shocked when I walked in the door. My daughter who is very very fair skinned is a light pink. In the past I have always been able to tolerate the sun better than my kids as my skin tone is darker.

    I have read about photosensitivity in people with Lupus, but am wondering if any of you burn this badly this fast? Just as an example, I have the sunburn of a person who was out in the blazing sun in August for about 9 hours. I was uncovered for one hour.

    Edited because I forgot to add. Even though I am burning up I am freezing. I keep getting goosebumps but they literally feel as if someone is rubbing sandpaper on my burned skin. Ouch.
    [This Message was Edited on 06/08/2003]
  2. sharie

    sharie New Member

    Hey Foreverflaring,

    Sorry about the lupus diagnosis. I have both fm and lupus and have reactions from the sun. My skin does tend to burn at an accelerated rate, but for me it's the rashes I get after sun exposure. I'm always itchy, very achy and tired and I always get the chills.

    Lupus is similar to fm in that not everyone gets the same symptoms and the reactions could be different. It is very important if you do have the correct diagnosis to stay out of the sun. Always wear sunblock because the sun can cause a flare. Good luck,
  3. jka

    jka New Member

    i was dianosed 16 yrs ago.i still can't spend even 15 min out in the sun without protection.i always where a GOOD 30spf sun screen-all over,long sleeves,long pants or dress and keep a hat in the car.you can't be too careful with lupus and the sun.there is some good fake and bake on the market now to get that summer glow.the sun can seriosly make you ill.please-stay out of it or covered up.this will change your life.get some good books on how to cope with it.i can give you some titles if you want.i also have fibro now. diagnosed 6yr ago.there are 2 types of lupus.you might read up on them on one of the lupus sites.

    kathy c
    [This Message was Edited on 06/08/2003]
    [This Message was Edited on 06/08/2003]
  4. judywhit

    judywhit New Member

    if you are taking st. johns wort, elavil or any tricylic, flexaril you might get this too. Just thought I would add this.
  5. Applyn59

    Applyn59 New Member


    Some medicines can do this as well. One that
    I know of offhand is diuretics. You may want
    to do a web search for photosensitivity with drugs.

  6. ForeverFlaring

    ForeverFlaring New Member

    Thanks for the tips on the meds. I do take flexeril so that coukld have triggered the photosensitivity thing. Today I am blistered up and down both arms. My hands are so swollen that I am typosing each each word I type, so from this pont on I ma no longerf correctingm typos.

    Also my throat is on fire and glanfds aroudbn my thoraot areo huurting, \
    Goung to go lay down agaain but I wanted to read the repies and say thnkas.

    Sandy (FF)
  7. jka

    jka New Member

  8. j-bearmama

    j-bearmama New Member

    keep in mind that if you feel nauseous, feverish or severe chills WITH a sunburn, you most likely have "sun poisoning".

    no it's not an old Wive's tale.
    I had a severe case of it when I was 12.
    my skin was blistered. I don't just mean here and there, I mean ALL of it that was exposed to the sun.

    Remember that the sun reflects off the water, so be EXTRA causious near the pool or beach.
    I found that the SPF 45 for babies that is water proof is the best protection. re apply every 30-45 mins.

    Personally I can't tollerate the heat or humidity so I manage to stay away from the sun out of necessity.

    But I do take Pamelor whish causes photosensitivity.
    I thought that from growing up in the north and mid west, that the sun was somehow "different" here in VA.
    but I guess it was all just this Damn disease.

    By the way. Curel is GREAT lotion that will help keep the peeling to a minimum.

    But Please PLEASE go see your dr.
    He may help you through the pain and frustration of this sun burn.
    I got some kind of med when I got burnt bad.
    It was to keep the nerve endings in my skin from being "reactive" so I wouldn't scratch or feel the tingly sensations from the burns.
    I think it was just benedryl or something like it.

    Not sure. I was only 12.

    Hope this helps.