ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Sunlight Sensitivity

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

  1. Elph68

    Elph68 Senior Member

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    Photophobia is a symptom of infection by nearly all species of Streptococcus ....

    Just saying ....

    Cheers.
     
  2. jann1033

    jann1033 Senior Member

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    Sun makes my butterfly rash come out and my skin hurt. SPF 50 helps so that's not due to heat. Hot weather , shower etc makes me have pem instantly. I think I read some here taking sauna, that would kill me lol. Occasionally light hurts my eyes but not much recently. Taste and smell are very off sometimes. Not to be gross but smell nonexistent poop to the annoyance of my family since I constantly make them search for nonexistent cat poop lol
     
    Last edited: May 20, 2014
  3. Elph68

    Elph68 Senior Member

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  4. Elph68

    Elph68 Senior Member

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    Sounds like you may have an overgrowth of hydrogen sulfide producing bacteria in your nose and mouth ....

    If you are inhabited with hydrogen sulfide and hydrogen peroxide bacteria, then heat would cause an 'opening of the pores' and an expansion of blood capilliaries ... giving you a direct injection of these toxins into the system ...

    Better add to this as well, heat and exercise move toxins out of the lymphatic system ...

    Bring on PEM .....

    Cheers
     
    Last edited: May 20, 2014
  5. Tired of being sick

    Tired of being sick Senior Member

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    Western PA USA
    Yes,

    The best way I can describe it is:

    The Sun is to Me
    as
    Kryptonite is to Superman

    Soon as the sun hits me, my fatigue level sends the fatigue meter needle off the scale......
     
    Adlyfrost and Raindrop like this.
  6. Raindrop

    Raindrop Senior Member

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    Where to start with this....!!!
    I have great sensitivity to lights in general - all lights - but I am HUGELY bad under fluorescents. Can barely
    go shopping anywhere, as all places have bright fluorescents everywhere. I wear huge brimmed hats and
    dark glasses (and cool clothing). STILL, I start feeling that I am going to faint/pass out/ die from exposure. It can come on very suddenly, the weakness, the sweating, with a very weird anxiety I don't ever have otherwise, followed by the extreme faint feeling. It somehow,
    despite all the covers I have in place, effects me severely. Can't tell you how many times I have had to run
    out of stores, even while I am trying to pay the cashier!!!! Have not known anyone this bad. I am almost
    getting phobic of going into many stores, yet I don't have any help so I must.

    ALSO, bright lights in general (sunlight or indoor bright lights) can bring on migraines.

    As far as sunlight, I feel severely ill with any direct exposure. This is complete Hell for me, as I live
    in a very very sunny climate. I pray for clouds and feel like a new person when they exist. I "live
    for shade" and have to dodge sunlight. It's ridiculous. I remember about 10 yrs ago when this
    symptom began; its gotten worse ever since. I instantly feel "poisoned", very ill, terribly weak
    and sometimes sick to my stomach. Have the huge hat and dark sunglasses on at all times in the sun and often just to walk outside my front door must have a full umbrella over me!!! I can't be in sunlight more
    than a few minutes and sometimes.....especially if it is hot and the sunlight is real strong.....not even that!!!
    It's really really tough living like this, with not being able to be in the sunlight that everyone around me
    is CRAVING and loving!!! I am a freak. Before I got ill I used to love to sun bathe - That now seems like
    another lifetime ago.

    Can anyone help me understand why I would be just SO so sick in sunlight as well as fluorescents?
    I mean it just seems ridiculously profound and getting worse all the time. I live in utter fear of
    NOT having a huge hat and glasses and tons of water. (Like for instance if I were to have to be
    transported to a hospital or stranded somewhere there are fluorescents or sunlight.
    Oh yes, forgot to say that I am HUGELY unable to handle HEAT (over 73 degrees even) as well. I have 2 portable AC Units and SIX fans in my apt!!! The intolerance of Sunlight and Bright Light along with inability to adjust to Heat and the POTS/ OI are some of my worst symptoms.
     
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  7. Raindrop

    Raindrop Senior Member

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    USA
    To "Tired of being sick"....
    yes, that was perfectly stated! Sunlight is like Kryptonite to me as well!
     
    Adlyfrost likes this.
  8. Raindrop

    Raindrop Senior Member

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    Maryb - I TOTALLY agree with EVERYTHING you described!!!
    TV is getting harder and harder to watch with all the reality shows and web cams with so much movement.
    If you watch things like "The Voice", I just go nuts. Like why can't we JUST hear the voices? Why does
    there have to be SO much visual distraction/ bright flashing moving lights everywhere on top of the
    singing!!! I am with you!!
     
  9. manna

    manna Senior Member

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    i like being outside when its hot and warm and lying on the ground but not in direct sunlight. i used to dislike the sun prior to getting properly ill. id guess that the more internal heat/inflammation you have then the less sunshine you can take, maybe. i'm sure its fairly common for some with me/cfs to do well in warmer weather or climates.

    i swear by incandescent daylight bulbs for when you have to have light indoors. i tolerate that kind of light way easier than the usual incandescent bulbs or the really bad, flickering, energy savers, treble yuck they are.
     
  10. liverock

    liverock Senior Member

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    UK
  11. Xhale19991

    Xhale19991

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    So are you advocating exercise for CFS?
     
  12. Xhale19991

    Xhale19991

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    How are these infections dealt with?
     
  13. Elph68

    Elph68 Senior Member

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    I am actually putting forward a reason why people suffer from PEM ... that is all ...

    It seems that Lactic acid, hydrogen peroxide and hydrogen sulphide are distributed/moved around the body which poisons the system causing the crash ...
     
  14. Elph68

    Elph68 Senior Member

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    Well Xhale that is my next quest .... antibiotics in the right dose and of the right type .... followed by FMT, diet and maybe probiotics, although I am not convinced that they have any idea what to use ... I reckon todays probiotics actually make the condition worse .....

    I do have a clinic in Europe that will develop a phage therapy solution for the unruly bacteria I am carrying, I am also a part of the FMT program in Sydney, but I believe it won't work unless I am given systemic abx rather than the non absorbing type.

    Phage therapy offers a lot of promise, but you need to know exactly what bacteria to target ...
     
    Adlyfrost likes this.
  15. Hanna

    Hanna Senior Member

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    Jerusalem, Israel
    . I struggle myself with them and don't go shopping (the wheelchair doesn't help in that case :( ). I havn't found any solution yet, just avoidance. Not easy!
     
  16. Elph68

    Elph68 Senior Member

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    Photosensitivity or photophobia is caused by hydrogen sulfide poisoning .... Look at any material safety data sheet ... it is common knowledge

    Hydrogen sulfide is produced by certain bacteria, streptococcus, enterococcus, citrobacter, prevotella, Kleibsella and others ....

    The undetectable infection ....
     
    Adlyfrost likes this.
  17. manna

    manna Senior Member

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    sounds reasonable though doesn't fully illustate why.

    i'd say the spleen is most likely involved...which of course also deals with infections. in chin. med. the spleen governs the flow of water around the body, which includes tears and the fluid in the eyeball. tears should be salty...remember when you used to get the dried salt crystals in your eyes in the morning...not no more as its unlikely that your lymph is alkaline and probably slightly acidic (caused bacterial fermentation of any unprocessed sugars/starches) and acidic tears sting (hydrogen sulfide is an acid) and make the surface of your eyeball sore. also poor regulation of water movement by the spleen can lead to odema, which can include the eyeballs as well as the ankles and cerebellum. inclined bed therapy is excellent for your eyes. it was one of the first things i noticed from it.
    -------------------
    are we talking skin sensitivity to sunlight as well? that could be the kidneys if so as they govern the skin.
     
  18. Elph68

    Elph68 Senior Member

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    Hi Manna,

    I have just put up a lot of information about what you are talking about in the undetectable infection thread. The alternative is that we are catalase deficient and being attacked by hydrogen peroxide from the same bugs ....

    my tears just burn my skin now ..... horrible thing ....
     
  19. Xhale19991

    Xhale19991

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    Does anyone experience hives?

    I've been getting this one hive that pops up everyday in a random place on my arms.
     
  20. PennyIA

    PennyIA Senior Member

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    I was going to chime in here as well. I don't like bright lights... but bright lights only bring mild discomfort. Direct Sunlight however? That causes much more severe reactions to me.

    About one year ago, I broke out in hives after a day in the sun, relaxing - switching between floating on a raft on the cool pool and soaking in the hot tub and drinking some alcohol. I didn't know why I'd broken out in hives, but have experienced enough 'new' allergies lately to assume that it might be tied to my sunscreen or chemicals in the pool. I knew I was overdoing it that day - ended up bedridden for about four days afterwards... but it was a nice treat.

    BUT, all fall last year - if I spent more than ten minutes in direct sunlight, the hives would return. Sure enough, I spent a couple of hours trying to help with a school event today. I've got hives, headache, dizziness and nauseau. Part of it might be over doing it... but I was basically sitting in a chair and standing up periodically to direct the bike riders (they were transitioning off of a bike path through a parking lot and then someone else was guiding them back onto the path (going around construction site). But, I was in the sun and couldn't find a place to sit in the shade. And I'm miserable.

    This has happened often enough for me to track that it's primarily sun exposure causing my symptoms because I can do the same type of thing and have far less impact on my health.

    I was joking around, with someone at one time that ... go figure, it might be related to my VDR Taq genes... my body trying to tell me that there's no sense sitting out in the sun if I can't convert it to Vit D anyway... and lo and behold, it does seem like my reaction worsens when I'm low on Vit D (and haven't been taking my drops) and a little better when I'm at a better level. Totally non-scientific experience, obviously... but I have noticed that I seem to tolerate it a little better or for a few more minutes when my D vitamin levels aren't so terrible.
     
    MeSci likes this.

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