Discussion in 'Fibromyalgia Main Forum' started by hensue, Jun 14, 2009.

  1. hensue

    hensue New Member

    I know this happens in lupus but I do not have that, my double stranded test came back neg.
    If I sit in sun I am totally sick and fatigue and hurt all over.

    I do not mean laying out in sun just watching my grandchildren swimming with all my clothes on.
  2. 3gs

    3gs New Member

    Hensue I can totally relate to what you are saying.

    I used to look forward to warmer weather and my grandkids coming swimming too,but now I found the same thing happening. The heat sun (even in shade)making me sick.

    I havent figured it out either and have been tested for lupus.

    it sure stinks how many times can u tell them "Ican't"
  3. caroleye

    caroleye New Member

    Hensue, when I was first diagnosed w/Lupus, one test came up one positive; the other negative. Finally it was my symptoms that told my rheumy I had Lupus.

    And sun is my very worst trigger. I've tried everything to keep covered up, and even sitting in the shade when it's warm out will get to me. I have to sleep in an air-conditioned room, and forget hot baths.

    Have you checked the Lupus symptom criteria? Tests can be inconsistent.

    But being in the sun for alot of people, due to the intensity of the sun (no ozone layer/global warming, etc.) can make you sick.

    I moved to California as a teen to "be" in the sun; today I can't go out in it anymore. SAD!

  4. frickly

    frickly New Member

    I also have difficulties with the sun. I break out in a rash on different parts of my body and get the rash across my face that is said to be a symptom of lupus. My doctor tells me that sometimes CFS is a precursor to other autoimmune diseases.
  5. Chelz

    Chelz New Member

    This is a good question. I used to be able to sit out on my front porch with the sun shining down years ago, even with my fibro, but not anymore. Very strange, when I am out in the sun, I tend to get more fatigued and weak feeling.

    Usually, the extra pain from being outside in the sun hits me a few hours later, I just can't tolerate it anymore, but it doesn't seem to make any sense. A friend of mine has MS, and her sister has FM, and they BOTH cannot tolerate the sun and heat. I did hear that MS patients have a problem with this, but never thought that some FM people do as well.

    A friend of mine was power washing my house the other weekend, and I could only stay out and watch him for about a half an hour because it was very sunny and warm. The washing took almost 6 hours, no way I could handle that at all. Not sure what causes this, but it does happen to me. Hugs, Chelz.
  6. AuntTammie

    AuntTammie New Member

    The sun actually makes me feel better, but the HEAT really, really bothers on the very rare occasions when it is cool and sunny and I am feeling well enough to go further than my couch, I try to get outside.....I know that a lot of PWCs are unable to be in the sun, though, and if I wind up developing that symptom, it will totally kill I feel very bad for those of you who have to avoid the sun
  7. cfsgeorge

    cfsgeorge New Member

    The heat really bothers me called heat intolerance. It goes hand in hand with cold intolerance. We are like 90yo elderly people who have both heat and cold intolerances.
  8. plh11

    plh11 New Member

    I have felt like sitting in the sun makes my fatigue worse, so I quit doing it. People with MS have sun problems. I once treated (as an occupational therapist) a young woman with MS who came back from a trip to Hawaii in complete decline.
  9. Rafiki

    Rafiki New Member

    I was already in a pretty serious slump but, stupidly, sat in the sun for about 30 minutes on Friday. I was wearing a long sleeve shirt buttoned up to the neck but was not wearing a hat and got a slight sunburn on my cheeks and forehead. I slept a solid 20 hours on each day Sat and Sunday. Sun can bring on that sleep which is reminiscent of delirium. I affectionately call it the mini coma.

    Heat is also bad. Either together or individually, they are not good for ME.

  10. Empower

    Empower New Member

    I have CFS

    Heat is bad for me - I think it is the same type of reaction that MS patients have

    We need to stay hydrated

    I drink lots of water (try to) and sometimes I take a little bit of salt if I don't have Gatorade and I start to feel weak

    WHat a shame, as I used to LOVE the heat - the hotter the better used to be my slogan!
  11. hensue

    hensue New Member

    Maybe it is the heat and humidity but you can bet in about 12 hours I am sick, fatigue, chills,
    voice hoarse or tired and of course last but not least pain.

    Maybe george was right we are like old people but the cold makes me hurt to think about it.

    Then again I live 30 miles north of Florida line so it is humid and hot.

    Trying not to complain to much though


    did not sit out in sun today could not take it!! Even though the Grandkids are driving me crazy!
    12 year old boy what is up with them is it puberty? So much different than the sweet child he use to be wants to argue. His 9 year old brother is happy as a lark just buys getting in to everything. I have got to understand this child and why is he so argumentive. Is this a defiance disorder or just boys. I have had two boys you would think I would know. Then tomorrow he might be good as gold.
    just venting
  12. Doober

    Doober New Member

    Being in the sun and heat just drains my energy dry. If I am in the sun for more than an hour, I am so tired and sluggish it is not funny.

    I have noticed that I get rashes from sun exposure. My arms and the back of my next which are the most exposed will be rashy and itchy.

    My face doesn't really get bad becaus eI wear a hat anyways.

    I guess I am more of a night person. I can be out all night if it was nice and cool, but cold, oh that is the best.
  13. soulight

    soulight New Member

    Jam ,

    I agree about the vit D deficiency. It seems that the more research that I do , deficiency in Vt. D , and magnesium keep coming up as deficiencies. Do you know if these need to be balanced out with other vits/ min. ?

    Thank you
  14. Pansygirl

    Pansygirl New Member

    makes me have more fatigue and more pain.

    I'm in Texas and the heat and humidity this summer has been

    I've noticed that if I just walk outside to my mailbox that the sun
    or heat will feel like it's hitting parts of my arms and I feel the
    increase in pain immediately.

    Does this make sense? It's hard for me to describe.

    gentle hugs, Pansy
  15. greatgran

    greatgran Member

    I too have been tested for lupus but test were negative even though my ANA is still very high.

    The Sun I need it because my Vit. D 3 is low but I just can't take it. On these beautiful days I am in the house with the a/c on..

    I do miss watching and taking my great grans swimming, they are so tan and love the water but seems I just can't do anything anymore. I sure wish I knew why.

    God Bless,
  16. MsE

    MsE New Member

    I can't deal with heat. My thermostat is broken. I've never liked hot weather, but since coming down with CFS it really makes me sick.