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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Anyone Else get ill after exposure to sunlight - not just the heat

Discussion in 'Hypersensitivity and Intolerance' started by helsbells, Apr 7, 2010.

  1. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Hi everyone

    This is such an odd one I would be really grateful if anyone else could comment. Was fine with sunlight all my life even through early-mid stages of illness. Then suddenly started to react badly. Incidentally I am not light intolerant in the house - I like really bright bulbs. Also I am not fair skinned. It can be just sunlight through the car or winter sunlight triggers vertigo, sickness, but more prolonged exposures and it doesn't have to be that hot just sunny, will trigger headaches, depression and gastric pain which can last several days poss longer after exposure. My consultant is adamant that it is just a side effect of dysautonomia. I got them to test porphyria - it came back neg. Is there a general explanation why sunlight rather than heat would cause such an exacerbation in fatigue etc.

    Many Thanks for Reading:Retro smile:
  2. caledonia

    caledonia

    Messages:
    2,877
    Likes:
    1,478
    Cincinnati, OH, USA
    Taking any new medicines?
  3. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    I do take rivitril (clonazepam) everyother night alternating nights with zopiclone. The symptom has been going on for a good few years now, certainly 3 or 4 when I have noticed it particularly.
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,460
    I find sun-light really tires me out.

    Don't a lot of non-ill people find this too? Maybe it's just exagerated with CFS? I certainly find that sitting in bright sun-light leaves me exhausted though. Such a lovely thing to do though! It's meant to be good for us too, so I try to fit some sun-time in - a lot easier now I have a back-yard.
  5. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    I would not be able to sit in the sunshine I have to actively avoid it. even minor exposure causes instant nausea
  6. faith.hope.love

    faith.hope.love Senior Member

    Messages:
    118
    Likes:
    1
    I flare in sunlight because herpes viruses flare in UV exposure. I have recurrent shingles (herpes zoster). Also if you get a sunburn, you ignite the inflammatory response, and that makes people feel ill too. It's no coincidence that people with MS and Lupus also flare in sunlight. They're all inflammatory conditions with a possible viral component.
  7. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I feel much better in the sun (has to be warm sun too), less fatigued and can walk further without gait becoming spastic - wonder if this is the Vit D effect, but...the first summer after viral onset of CFS (1996) got prickly heat. Covered in raised itchy spots on arms and legs. Did not actually know at the time I had prickly heat. I now take anti-histamine tablets throughout the summer. Is prickly heat an immune reaction and does this suggest a change in my immune system post CFS?
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,460
    Oh - nothing like that. I'm fine in a lot of sun-light really, I just seem to have picked up a really exagerated version of the normal fatiguing affect of the sun.
  9. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Thanks for reply firstly. Would this be bad enough for you to try and avoid it like me? Would you have a flare in specific herpes symptoms or just generally worse. Re Lupus, I even asked about that as I had read that too but as I say he is adamant that dysautonomia and a volatile autonomic nervous system alone could cause such probs. I understand that it might be best not to sunabthe but seems weird it is so instant and can be so long lasting as well.

    Sorry i meant to quote faith.hope.love but am still getting the hang of this - sorry
  10. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    My neurologist says that there is a form of migraine without headaches--and I noticed, a code for it--which is triggered by such things as bright light, noise, etc. This just goes to say that part of the problem is neurologically based. Another part of the problem has to do with how sunlight in the form of UV rays has a depressing effect on the immune system. This can result in some degree of flaring of herpes, etc., possibly getting a cold--

    On the other hand, natural sunlight has many beneficial properties. At the very least, it could be helpful to go out into warm sunshine with eyes and skin shaded, in order to receive the benefit of the light spectrum. The part of this that the body receives as heat, the other end of the spectrum from the UV rays, can help with pain and arthritis, I have read--and experienced. Being out in the sun wrapped up might then be better for the overall health than just staying shuttered inside.

    Sing
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,460
    I've always thought that some people's CFS symptoms sound very like some sort of chronic migraine.

    If you read the early works of the leading CFS psychologisers they'll often link CFS and migraines too (although concluding both were psycho-somatic rather than both were neurological).
  12. Kati

    Kati Patient in training

    Messages:
    1,983
    Likes:
    1,323
    My first summer with ME/CFS was last year and I found that the sun exacerbated my symptoms, gave me terrible headaches, increased exhaustion and very likely OI.
    So I became a vampire and chose the times to head out to rainy days or evening when it's not so bright out. Sunglasses had very little effect.
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Me, too. Even through a window. However, like everything else with this, I am sometimes more sensitive and sometimes less. But, there is never a time I can tolerate long exposure to strong sun. There was a time when I had to wear special sun protective clothing in order to be able to go outside on sunny days. Now I don't usually need it but I still avoid direct sunlight whenever possible as sun brings on something that feels just like PEM.
  14. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    i have very expensive prescription sunglasses and they don't help me either!!
  15. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Not odd at all. Some of us may have co-infections of bacteria, especially those called "stealth" bacteria, cell wall-deficient or L-form bacteria, which drop their cell walls and insert their genetic information directly into immune cells. They hide from the immune system there and periodically re-imerge and replicate, causing flares. According to Trevor Marshall's research, these bacteria need vitamin D, which increases with exposure to sunlight. Some people have had great success by avoiding sunlight and foods with a lot of vitamin D. The Marshall Protocol has people living cave-like, wearing special no-infrared sunglasses, covering up and avoiding dietary vitamin D. I did the Marshall Protocol of pulsed antibiotics and it helped me with everything except fatigue. With all this avoidance, my vitamin D levels never dropped as low as the MP recommends. (Read your processed foods labels. Vitamin D is added to a lot of foods, especially dairy and cereals.) Most of the people on the MP site have stories similar to yours, of severe reaction to exposure to sunlight.

    So, you might want to google the Marshall Protocol. And there is another site called bacteriality.com, by two young people with CFIDS, who have improved a great deal on the MP. She is a scientist and writes very well on how bacteria may cause CFIDS, or a subset of it, with good explanations of why sunlight makes you feel terrible.

    Marshall is a biomedical researcher, not an MD, and the site is not taking anymore people into their online study, but it still has a lot of good information, especially regards sun and vitamin D.

    Others have done pulsed antibiotics in other formats and have also had some success. There is also some evidence that some viruses are affected by antibiotics.

    Good luck in your search.
  16. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    What is PEM? I am glad to hear this, not glad you are suffering at all - but this is one thing that really was the final insult in the ever burgeoning list of "things I can no longer do" and was so peculier to me even I was starting to feel as if I had somehow slipped through the fabric of an alternate universe. Are you ok with Vit D? fish oil. I worried I had become reactive to Vit D, I react to everything else so why not.....but then the instant feeling of illness in winter sunlight made me think it was a more general thing. thank you so much for taking the time to reply. Forgot to say to Kati also - yes I get terrible headaches aaccompanied with depression after a signigicant exposure.
  17. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    To Adam

    Just to say Hi and I did reply to your post which I eventually picked up but not sure if I did it right or whether it got to you. you don't have to reply i was just worried in case you thought I had ignored you :)
  18. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    I am sorry for everyone who is severely restricted in terms of sunlight!! I am limited myself, more maybe than I have yet admitted. Having been a "nature girl" all my life this is a hard nut to swallow. I deal with it by walking very early or late in the day, when I do, or by taking "walks" in the car while driving with sunglasses on, enjoying the beauty of the earth this way. Maybe this is why I keep moving north, finding myself consistently attracted to Canada. I have enjoyed visiting my sister in England too, at a latitude approaching the Arctic Circle! You would never catch me in Mexico. Anyway, we have to try to adapt to all our needs, physical, emotional and spiritual, as best we are able.

    Sing
  19. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey Helsbells,

    PEM is Post Exertional Malaise - "poisoned"/"flu-like" (however you describe it) feeling of illness one has following exertion.

    I think that Oerganix post brings up a really interesting point as my waxing and waning ability to tolerate some sun exposure may well be connected to whether or not I have recently been treated with antibiotics. It is quite possible, likely even, that there is a connection.

    I don't supplement Vit. D and don't take fish oil - I do take plant based oils for LCFA supplementation - so can't answer that.

    So, no, you have not "slipped through the fabric" (nicely put) but so much of this can certainly feel that way, can't it. ;)
  20. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    To be Honest this was the every thing I was afraid of it being!! I had severe gastric meltdown after just a couple of days of a tetracycline antibiotic and was left with permanent IC and hospitalized for two weeks. i now tolerate very little in the way of meds or vits. My d level is currently quite low though - altho it does get confusing when everyone other than MP as far as my limited understanding takes me seems to be saying vit d is a good thing. I am not critisizing the protocol at all just know i have absolutely no chance on it. Thank you very much for your good wishes :)

See more popular forum discussions.

Share This Page