Home care is the theme for Severe ME Day on August 8th
Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising ...
Discuss the article on the Forums.

UV light / Sun allergy

Discussion in 'Immunological' started by Deatheye, Aug 21, 2011.

  1. Deatheye

    Deatheye Senior Member

    Messages:
    160
    Likes:
    19
    Anyone knows anything about this?

    Rheumatologist wondered about this. I coudn't relly answer the question. He told if I got it I would know for sure. But the next few days after the appointment I started to wonder. I remembered that at around age 7 when we had sports outside I always was the only one that preferred to have sports inside.
    My cognitiv and physiological abilities got terrible bad with just around 30 minutes sports in the sun.
    Running a mile i generelly was in the middle of the class maybe a bit mor to the front but running in the sun everyone finished and I still had laps to run... I got headache and nausea. Teacher always blamed me, told me everyone has more problems, I shoudn't be so touchy or just searching for excuses while my family wondered why I always get suntrokes so fast.


    Over the years I totally forgott this but I never went much into the sun and always noticed that I get tremendous problems in the summer.

    Since everyone around me blamed me for beeing ill cause I'm not enough outside and / or in the sun I went more and more outside the last few years.
    And the last few years I got more and more and worser and longer ill.

    I also was using the sun as a "sleep pill". Helps me bether to sleep then anything else, including sleep pills...

    Anyone knows if there even is a test for this?

    It's kinda funny cause they suspect I could have SLE. Sympthoms would fit but it seems ANA are negative...
     
  2. Merry

    Merry Senior Member

    Messages:
    1,358
    Likes:
    617
    Columbus, Ohio, USA
    I'm not sure I understand your question, but what I remember about the summer of 1988, a time of a significant downturn in my health that I've never recovered from, is that every time I was out in the sun I felt terrible. I am not sure about my entire history of symptoms of illness following exposure to sun, but I was never one to like to sunbathe, for example.

    Other PR members have mentioned that they can't tolerate the sun, but I can't remember who said this and on what threads.

    I wish you the best, Deatheye.

    Merry
     
  3. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    54
    Wetumpka Alabama
    I used to love the sun and being out in it. Now the sun bothers me and it is because or Orthostatic Intolerance. I think there are 5 or 6 different kinds. Dr. David Bell has written a lot about it and may have discovered it but not sure. I have the high bp kind and I have it under control with electolyte drinks either ..Gatror Aid 2..make my own with 2 bottles of club soda without salt, 2 cups of filtered water 1/4 teaspoon of sea salt and 1 teaspoon sodium cloride (Nu-Salt is fine). I just learned about a new one called NUUN that sounds very good. A lot of athletes use that. You must stay hydrated. They say drink 1l2 your weight in ounces of water. I also have a 0.02 beta blocker patch.

    You can go to www.oiresource.com and read all about it. I think most have the low blood pressure kind. You will find there a test you can even do at home. Dr. Bell may have something on his site too or in his newslettrer, "The Lyndonville News".

    I had an 8 year remission and the OI went away but it came back when I crashed two years ago No one ever got it that I had it before but I don't think they have known about it all that long, especially the many kinds. No one ever told to be sure and stay hydrated either.

    I have the kind of OI called POTS and it is under control but I would not go out in the 100 degree heat yet.
    I knew I was getting sick again when I was walking in the sun and started getting nauseated and shaky and terrible.

    Dr. Klimas confirmed it on a tilt table test but she knew by looking at my blood pressure log of a week. I am following her protocol for it and it is working.

    It sounds as if you may have one of the kinds kinds of OI. Worth checking it out anyway.
     
  4. Deatheye

    Deatheye Senior Member

    Messages:
    160
    Likes:
    19
    @Marry
    Yes that was kinda what I was looking for. I think I never read anything about influence of the sun. There wasn't a specific question inside, more like a generell request of information / experience exchange ^^


    Marg
    I once did the test just with sitting and then standing up and bpm went up into the range of 13x standing. I think 30 bpm rise. But it changes drastically I just don't know why. Sometimes I can't even sitt cause it goes up to much going from lying flat to sitting. And the next time I just feel a bit wierd a few seconds after standing up, then again to sympthoms are not noticable at least if I not specially check for them.
    First time I fainthed at around age 8 while standing up.


    I didn't know that sun exposure could influence it...
     
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    8,894
    Likes:
    16,263
    Amersfoort, Netherlands
    A seasonal sun allergy is somewhat common, when first getting exposure after the winter (maybe it's just a UVB thing?), but that usually passes after some persistence in getting sun exposure. I get rashes on my ankles for some reason :p
     
  6. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    54
    Wetumpka Alabama
    Hi Deatheye,
    Have you tried a weeks log of bp and heart rate? It sure sounds to me that you have it. It is very important to stay hydrated. I just learned about a new drink that sounds very good that athletes use. It is called NUUN. I Googled it and found it online. The online store that came up was Lucky Vitamin. I have not ordered yet, thought I would check some other places too. I have not checked health stors but know they would be more expensive. I am going to try iherb now, get most of my things there, great prices and discounts.
     
  7. L'engle

    L'engle moderate ME

    Messages:
    1,198
    Likes:
    1,059
    Canada
    I also do badly in the sun and the heat. I burn very easily and my face gets uncomfortable over the next day if I have sun on my face even for a minute. I have malar (red) rash but was never able to get a clear answer about lupus etc. I used to carry a magazine everywhere to block my face if I had to stand at a bus stop. Now I don't go out so much and really can't go out on hot sunny days at all.

    DE, I don't know if there is a test for this. There may be auto-immune tests you can get from a dermatologist. If you haven't already, I'd suggest getting auto immune tests like ANA and other lupus tests, though I don't know if any are specific to sun allergy.

    Take care all and good luck not getting sick or burned!
     
  8. Starlight

    Starlight

    Messages:
    31
    Likes:
    16
    The sun makes me very sick since I became I'll with me I get a rash very sore head as opposed to a headache, pain in every muscle and joint in my body .u v light bulbs do the same to me . I t takes me weeks to come back to anywhere near my normal level of illness even after very short exposure .it would be one of my worst nightmares to be left out in the sun for a long time . My ana was also negative.I would not have believed the he'll that can be caused by sun and uv light
     

See more popular forum discussions.

Share This Page