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POLL: How common are sun allergies/sensitivities (to light, not heat)?

When exposed to sun (light, not heat) I get:

  • polymorphic light eruption (see link*** if not sure if your rash is PMLE)

    Votes: 5 17.9%
  • another type of abnormal skin reaction

    Votes: 0 0.0%
  • malaise/PEM

    Votes: 5 17.9%
  • polymorphic light eruption AND malaise/PEM

    Votes: 1 3.6%
  • another type of abnormal skin reaction AND malaise/PEM

    Votes: 1 3.6%
  • no reaction

    Votes: 10 35.7%
  • a completely different reaction

    Votes: 6 21.4%

  • Total voters
    28

Ravn

Senior Member
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Please bear with me, this is my first attempt at creating a poll. I hope it works.

There are quite a few threads here where people report various issues with sun exposure. I myself have always had polymorphic light eruption, it runs in my mother's family. Then I came across this link and it felt a bit like déjà vu: “impaired T–cell function, altered production of cytokines, immune suppression...” Now where have I seen these words before...?

So, I got curious. Could there be an underlying weakness - genetic, immune, whatever - that predisposes some of us to get both PMLE and ME? Of course a poll won't really answer that but I've always wanted to create a poll, just needed a topic. :D

***https://www.dermnetnz.org/topics/polymorphic-light-eruption/

From the link: “Genetic factors may be important with many affected individuals reporting a family history of PMLE. PMLE is caused by a delayed hypersensitivity reaction to a compound in the skin that is altered by exposure to ultraviolet radiation (UVR). UVR leads to impaired T–cell function and altered production of cytokines in affected individuals. There is a reduction in the normal UV–induced immune suppression in the skin. This has been suggested to be related to oestrogen, insufficiency of vitamin D, or to the microbiome and antimicrobial factors.”
 

JeanneD

Senior Member
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386
I'm not sure if mine qualified as PMLE. The coloration was similar to the image, but the rash was not raised. Mostly like the image of the leg towards the middle of the images. I also don't know how long PMLE lasts. My skin rxns would clear within 24 hrs most of the time. So for the moment I'm going to go with "another abnormal skin rxn". I didn't go out in the sun for years without being covered from head to foot.

I cannot tell you which of the many treatments that cumulatively improved my condition put an end to the sun rxn. By timing, the most likely candidate is IVIG, but that could be a coincidence.

As far as I know, no one anywhere in my family had anything resembling PMLE, even my daughter who had a very similar ME symptom set to mine.
 

Learner1

Senior Member
Messages
4,003
Likes
7,232
Location
Pacific Northwest
I feel a sense of well-being in the sun. Unless I get hot, and then POTS sets in and I'm.miserable. Too much light is bad at times, too.

But interested in more info on this topic...
 

ChrisD

Senior Member
Messages
411
Likes
835
Location
East Sussex
I personally really benefit from Sun exposure, atleast while I am in it, but in the summer in particular I can get very heavy and fatigued after (Not PEM as such) and it is quite noticeable that it is the sun that has drained me, despite the earlier boost in wellness.
 
Messages
77
Likes
116
Please bear with me, this is my first attempt at creating a poll. I hope it works.

There are quite a few threads here where people report various issues with sun exposure. I myself have always had polymorphic light eruption, it runs in my mother's family. Then I came across this link and it felt a bit like déjà vu: “impaired T–cell function, altered production of cytokines, immune suppression...” Now where have I seen these words before...?

So, I got curious. Could there be an underlying weakness - genetic, immune, whatever - that predisposes some of us to get both PMLE and ME? Of course a poll won't really answer that but I've always wanted to create a poll, just needed a topic. :D

***https://www.dermnetnz.org/topics/polymorphic-light-eruption/

From the link: “Genetic factors may be important with many affected individuals reporting a family history of PMLE. PMLE is caused by a delayed hypersensitivity reaction to a compound in the skin that is altered by exposure to ultraviolet radiation (UVR). UVR leads to impaired T–cell function and altered production of cytokines in affected individuals. There is a reduction in the normal UV–induced immune suppression in the skin. This has been suggested to be related to oestrogen, insufficiency of vitamin D, or to the microbiome and antimicrobial factors.”

I could have voted for this if there was an option for having this condition in the past. I used to live in UK and travel to Italy for a few weeks every summer. I recall getting this "sun rash". I was given the product Sylvasun to take (high dose vitamin A) until it was taken off market. It may have helped some - I don't recall. I know my rash would return briefly every spring until I was about mid twenties. I know my mum said she had had it in past.

Looking at the website :
Polymorphic light eruption (PMLE) is a form of photosensitivity, which usually occurs in younger females. It is more common in patients who receive only intermittent sun exposure.

This fits my pattern - maybe as a youngster I was estrogen dominant and my vitamin D dipped low over winter in UK. Why that changed mid twenties when still in UK not sure. For me there was a genetic component due to maternal history. Anyway interesting topic.
 

Dechi

Senior Member
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2,796
I responded I have polymorphic light eruption but it doesn’t happen every time I go 8n the sun. Usually the first 2-3 times I go out, then it stops. It didn’t happen much this summer. It seems to come and go.
 

keenly

Senior Member
Messages
752
Likes
816
Location
UK
I feel a sense of well-being in the sun. Unless I get hot, and then POTS sets in and I'm.miserable. Too much light is bad at times, too.

But interested in more info on this topic...
Too much natural light is never bad, any artificial light is less than ideal, artificial blue light is terrible for EVERYONE.

Heat yes, I too can not tolerate much.
 

Ravn

Senior Member
Messages
147
Likes
296
@Ravn Something went wrong with the poll. My vote shows up differently in the Results than it does on the voting page. :confused:
Sorry about that. Have stared at the screen and scratched my head but cannot figure out why you should have had this problem. Let's blame it on IT shall we (if in doubt blame IT rather than admit personal responsibility :rolleyes: - but if any IT person happens to be reading this: I know you IT folks are clever and kind and if you'd be so kind as to point me to where the gremlins might reside in my poll I would be very grateful!)
 

Starlight

Senior Member
Messages
152
Likes
776
I react so badly to sun that I'm really scared to go out in it at all. I get horrendous headache which lasts for days, joint pains with no swelling, feeling really ill and rash on my face which is not raised. Last time I spent time in sun, in a shady place, I spent a month in bed really ill with all of the above and a really severe kidney infection. The headache is always the herald of sun horror for me. I have bought some coolibar hoodies which are sun blocks and I find them great along with factor 50 and even with them I'm still very careful as the sun makes me feel so very ill.
 

Ravn

Senior Member
Messages
147
Likes
296
I feel a sense of well-being in the sun. Unless I get hot, and then POTS sets in and I'm.miserable. Too much light is bad at times, too.

But interested in more info on this topic...
Did a quick Internet search on this but came up with nothing.

I do wonder though if UV radiation as a trigger in ME (with or without any rashes) is underreported because:

1/ it's so difficult to separate out the effect of light and heat,
2/ we often do different activities in the sun than indoors,
3/ many of us are generally light sensitive, as in sensory overload sensitive.

Certainly, I long used to blame any ill effects from UV light on any one of the three other causes above. But if UV light is a sufficiently strong stressor to bring out beriberi in some people (according to Lonsdale, mislaid the link, sorry) then it may be enough of a stressor to trigger an ME reaction.

The timing of my reactions is interesting, if inexplicable:
My normal PEM (this includes from activity and heat) sets in on day 2.
My PMLE sets in earlier, after a few hours.
My UV light 'malaise' sets in earlier still, within minutes if the sun is strong. The symptoms of the 'malaise' are similar to PEM though I'm not sure they're identical.
 

Ravn

Senior Member
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296
I could have voted for this if there was an option for having this condition in the past.
Feel free to vote that you do have PMLE. It's very common to more or less grow out of it as @Countrygirl and @Dechi report. Probably the skin 'hardens up' with age and it takes much more UV radiation to trigger a reaction. My own PMLE has significantly reduced with age, too, though I still can get caught out. The sun can be very intense here in NZ.
 

Ravn

Senior Member
Messages
147
Likes
296
I react so badly to sun that I'm really scared to go out in it at all. I get horrendous headache which lasts for days, joint pains with no swelling, feeling really ill and rash on my face which is not raised. Last time I spent time in sun, in a shady place, I spent a month in bed really ill with all of the above and a really severe kidney infection. The headache is always the herald of sun horror for me. I have bought some coolibar hoodies which are sun blocks and I find them great along with factor 50 and even with them I'm still very careful as the sun makes me feel so very ill.
That sounds dreadful! Did you ever get these reactions investigated? Sounds like there could be something else going on, what with the joint pains and so on.
 

Starlight

Senior Member
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776
That sounds dreadful! Did you ever get these reactions investigated? Sounds like there could be something else going on, what with the joint pains and so on.
I have mentioned it to consultants a nd been tested for lupus but tests were negative. After negative results there is no longer any interest. I just protect myself.
 

JeanneD

Senior Member
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386
I have mentioned it to consultants a nd been tested for lupus but tests were negative. After negative results there is no longer any interest. I just protect myself.
Same thing happened to me. They tested for lupus and when that came back negative, the doc chose to ignore the symptom rather than investigate further. :rolleyes: Like you, I just took matters into my own hands and stayed completely covered in the sun.