1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Sunlight Sensitivity

Discussion in 'General ME/CFS Discussion' started by Xhale19991, May 19, 2014.

  1. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    SUN gave me:
    -fevers
    -racing heart
    -PEM
    -pain
    -clogged ears & more.
    -Summer SAD
    I thought I got radiation sickness every time I went in it!

    This is when I lived in FL. I had to be a hermit then- for over 10 years. The fevers were awful. Would sleep for days. Like being poisoned exactly! Had to block windows, tint car.

    Thought when I left FL would be cured - I had no idea the winters up here can be worse! Sun not as bad in NJ. Angle/latitude and atmospheric condions have big impact. Still get summer SAD but not as long. Up here get winter SAD worse.
     
    Tired of being sick likes this.
  2. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    Wish I had seen this post when I was a hermit- I was so depressed- had no idea others were out there like me.
     
    Tired of being sick likes this.
  3. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    I think sun triggers autoimmune response. It also definitely activates a virus.
     
    Tired of being sick likes this.
  4. IreneF

    IreneF Senior Member

    Messages:
    480
    Likes:
    447
    I'm so lucky I live in Fog City. Around here it's fogged in all summer. Confuses the tourists, makes for gorgeous photos of the Golden Gate Bridge.

    I never go out in the sun if I can help it, anyway. Sunglasses are de rigueur. When my daughter goes to France (the BF is French) she stocks up on sunscreens that you can't get in the States.
     
    Adlyfrost likes this.
  5. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    @Tired of being sick : Yes Kryptonite! That is how I explain it to my friends!


    One controversial thing: VITAMIN D! Can't figure that one out. Is it bad or good? Unfortunately the best vitamin D is during peak sun levels. However I am not sure the VIT D had anything to do with me getting sick from the sun. Never noticed feeling ill after taking D supplements. Any thoughts ya'll?
     
    Last edited: Jul 21, 2014
  6. Hip

    Hip Senior Member

    Messages:
    3,243
    Likes:
    3,125
    I second what SilverbladeTE has said: people on this thread need to make clear whether they are talking about:

    (1) light or sunlight affecting their eyes, due to ocular sensitivity; or
    (2) sunbathing (sunlight falling on their skin) affecting them.
     
    MeSci likes this.
  7. stevesayshi

    stevesayshi

    Messages:
    97
    Likes:
    78
    I have a problem with bright light that seems to build over time, but heat is the real killer for me. And I live in Tucson, AZ. Currently, without air conditioning.
     
    Adlyfrost likes this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,831
    Likes:
    4,593
    Cornwall, UK
    I was thinking about problems converting Vitamin D too. I get similar symptoms to you after sun exposure, especially nausea and mild headache, and general PEM-like aching and weakness. I have sometimes had a similar reaction after using my UVB lamp (for Vitamin D) in the winter. I don't always get it though, and I don't think the sun gives me hives/urticaria.

    I have SNPs (mutations) of what I think are the three main Vitamin D receptors (VDRs): Bsm1, Taq1 and Fok1.
     
  9. IreneF

    IreneF Senior Member

    Messages:
    480
    Likes:
    447
    You would know if you got hives. You break out in big red and white spots, and you itch like crazy.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,831
    Likes:
    4,593
    Cornwall, UK
    I don't get that. Just occasionally a few weals and temporary itchy rashes but this seems to be due to contact with certain plants, not sunlight.
     
  11. IreneF

    IreneF Senior Member

    Messages:
    480
    Likes:
    447
    It could be the combination of certain substances--some plants are full of irritants--plus sunlight. You may have photodermatitis, not hives:
    http://umm.edu/health/medical/altmed/condition/photodermatitis
    http://en.m.wikipedia.org/wiki/Photodermatitis

    This site has a good picture of hives:
    http://www.aad.org/dermatology-a-to-z/diseases-and-treatments/e---h/hives

    I haven't had them very often, and they've gone away quickly. They were the itchiest thing I've experienced. I don't know where the "may itch" comes from.
     
    MeSci likes this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,831
    Likes:
    4,593
    Cornwall, UK
    Thanks. I don't think I've had that, except perhaps occasionally, very briefly and very mildly. Not really bothersome at all.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,831
    Likes:
    4,593
    Cornwall, UK
    I'm interested in the 'clogged ears' thing. This is something that has plagued me on and off for years, and this morning I woke up almost totally deaf. Managed to clear one ear with sodium bicarbonate drops so at least I am only half-deaf now!

    I hadn't thought about a possible connection with sunlight. Did/do you only get it in summer? Did/do you get intense itching in an ear before it becomes blocked?

    I've been blaming myself for picking and poking at my ears when they itch, but I don't think I had touched the left one, yet that became blocked.
     
  14. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    Yes I only got this in hot or summer weather.... until I moved up north- then I got it when my viral symptoms flared in extreme cold too. I also got this my first Fall up north when I had seasonal allergies.

    Now that I have been up North for a couple of years I only get it mainly in the summer because I am better at treating viral stuff and immune system in other seasons. Drier weather seems to help this condition.

    I never got much itching though. But when I lived in FL it was very strange- within minutes of intense or summer sunlight my ears would clog. I think it is the result of an immune response being activated. My viruses keep my immune system hopping to the point of exhaustion 24/7 so I am aways getting inflammatory responses all over body like a lot of PWME.

    I don't think picking at your ears will do this. My worst flare was one summer when I didn't have A/C. I got a terrible wax build up- had to use syringe with warm water and after 10 days of drops, like a quarter cup of wax came out in the shower after syringe treatment. Since then it has only been fluid that comes and goes and mild aches.
     
    MeSci likes this.
  15. IreneF

    IreneF Senior Member

    Messages:
    480
    Likes:
    447
    Perhaps we should all move to the NW coast, where it's cool all year. But then we'd have mushrooms growing out of our carpets.
     
  16. Adlyfrost

    Adlyfrost Senior Member

    Messages:
    227
    Likes:
    104
    NJ
    For years I thought if only I could get out of FL I would be cured, but after moving to NJ I found CFS/ME stays with me where ever I go (in fact got worse in the freezing temps). I do find that lots of clouds, moderate temps and moderate amounts of humidity are best. I am thinking perhaps NC mountains.

    I agree the cool humidity of the NW might not be best- it nearly drove the Lewis and Clark expedition to insanity their one rainy winter in Oregon.
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,831
    Likes:
    4,593
    Cornwall, UK
    and some of us may want to stay in our own countries! :D
     
  18. IreneF

    IreneF Senior Member

    Messages:
    480
    Likes:
    447
    Many of the plants that do well here (San Francisco) are from tropical highlands--not too hot, not too cold, lots of clouds and fog. Perhaps there's a mountaintop in New Guinea . . . .
     
  19. meadowlark

    meadowlark Senior Member

    Messages:
    135
    Likes:
    18
    Toronto, Canada
    When I was just sixteen, I reacted so badly to bright light (dizziness, visual confusion) that I couldn't learn to drive (the glare through the windshield was too much) and I took to wearing sunglasses whenever possible. I was an actress for years, but the bright lights began to disorient me--especially if I was standing on a raked stage!--and this was one of the reasons I quit the profession. Now, in my sixties, I have to wear sunglasses indoors if I'm near a window on a sunny day, and always wear them outdoors if the sun is out. If I don't wear them, I become too dizzy to walk, or have a grand mal. The grand mal is not a very good outcome.

    I find extremely hot weather very debilitating, but only in the way that most people do.
     

See more popular forum discussions.

Share This Page