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5466760 tn?1368436553

Intense pain from Sunlight- Sun Allergy

I want to start this my saying, it is NOT in my head.  I have been told that too many times, and it makes me very mad because obviously, those people have never had to go through what I have.  I need to explain my background before I can ask my question though.  I am allergic to the sun. that IS the truth, and this is how I know.  When I was a child, I was always sensitive: there was always a slight burn, and I got faint and really red after 20 minutes in the sunlight. I tried to stay out of the sun as much as possible, but most of the time I had no choice in the matter.  I got severe burns that were painful and blistered. When I hit puberty, the real problem began.  I started getting red after a few minutes, then bumps appeared all over my skin.  In the moments that I wasn't having migraines, and a lot of the time when I was, I would go to hospitals, admittedly, though, for the migraines.  But when that cycle of migraine ended, the sun sensitivity did not.  It got worse, and the pain got more intense.  It stayed like that for a while; I tried to go to the doctor to help, but she prescribed a rash medication and pulled my mother aside saying that I needed a psychologist.  I do not have some kind of seasonal depressive disorder, these reactions aren't in my head, and safe to say it made me upset.  By the time I had enough confidence to go back to the doctor, my migraines started up again.  He was more concerned about my migraines then my sun allergy; so he prescribed a "preventive medication for my migraines."  I put quotes around it because, and I found this out after I started taking it because I trusted my doctor enough not to look, was actually the antidepressant Elavil.  The Elavil changed my body chemistry.  I was like a zombie on the medication; I had memory loss as well as a whole mess of other symptoms that included increased sensitivity to the light.  I thought once I stopped taking it, that I would go back to normal.  I'm not a zombie anymore, but that is the best I can say.  My sun sensitivity has amplified so much that now, four years later, I cannot get exposed to sunlight without feeling like my skin is being incinerated.  Then the after-burn is so bad I can barely stand up, and I am so itchy I can't stand it.  I went to the emergency, at night, because another rash, it looked more inside my skin then the bumps I already have, and the doctor said it was an auto-immune response, and that she was "more worried about what was going on inside my body that out."  She does me with heavy steroids and prescribed another medication to have the redness go down, and that is all it did.

I am not mad for having this disease, this disease is driving me mad.  I have had to completely block my room from sunlight, I even have a tent around my bed so when others come in my room, I am not touched my the light outside my door, or the light that comes underneath it when they are gone.  The sun incinerates me, and them I continue burning and itching.  I have had to completely reverse my schedule, because a life during the day is just simply not possible for me.  I currently live in a place with a UV spectrum of 9, and is only getting higher by the day.  If I had a choice, I wouldn't be here right now.

My guess is a recessive gene was activated by all of the contributing factors: too much exposure, already having sun sensitivity, puberty, and medication.  My family are not like this, they feel the "original" burn, not incineration.

But, is a sun allergy like mine heard of?  I have Medical, so it is hard to go to a dermatologist, and honestly, you have to have a doctor listen.  The closest a doctor listened to me was when my eye doctor was doing a follow up test on my "borderline" glaucoma; he called me a vampire.  How many people can say that?!

I just need help, my online school wants me to take a test during the day.  The only thing I can focus on when I am awake and get exposed during the day is the pain of the sun.  I sleep during the day now, I keep myself out of the sun, and I have had to learn EVERYTHING by EXPERIENCE.  No one was there to help me that knew anything.  My mother tries, she let me stay in the dark and she is one of the only people who believes me, but she doesn't fully understand what I am going through.  Now, my school is on us.  It's like you can't be allergic without other people still wanting you to do things you are physically unable to to.  I don't know the specific name of my disease, that doesn't mean that it is all in my head.  If it was, it would be so much easier, my life wouldn't have become my own living hell.  But it has, and people want to push me into the flames.  It is no secret the solar UV spectrum is getting higher, it is another effect of a thing called global warming.  Why is it so hard to believe that a person is having this reaction?  
Well, I don't care whether or not there are people who don't believe me, that come with the territory, I just want to know if there is any sun allergy like mine out-there with a name.  I can't go out in the sunlight anymore, and artificial lights are uncomfortable enough.  I need help.  I am seventeen, and I have been dealing with this, practically on my own, for four years.  It would be nice if I could finally have a little but of peace and closure.
I know I need to get out of this place, and I know exactly where I need to go.  And I know I need to live the rest of my life at night, because I can't be anywhere near the sunlight. No open windows, not even blinded windows with streams of sunlight coming through.  I have to live an ABSOLUTELY sun-free life.  It would be nice to know the name of the reason why.  Is there anyone that can help me with that?


This discussion is related to Sun Allergies.
19 Responses
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5466760 tn?1368436553
Mayo; I hate typos!
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5466760 tn?1368436553
And now I feel even more stupid, because County mayo is in the Republic of Ireland.  That's what being an american gets me.
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5466760 tn?1368436553
Nevermind, Mayo is a place, I feel really, really stupid.  In my defense, they don't teach you that in American schools.  I have only been looking up things related to the Republic of Ireland, to tell you the truth.  And my ancestry. But I feel very much like an "American Idiot."  Forgive my language, but it is the phrase, so...


I'm happy for you, it is nice to get a holiday.  I hope you have a good time.
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4851940 tn?1515694593
No worries.
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5466760 tn?1368436553
And I meant I empathize with your daughter. My skin can't stand wool either.
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5466760 tn?1368436553
I sympathize with your daughter.

I clicked over to see it, but though it had 5 in parentheses, I said "no photo" and wouldn't let me click to see it.

And, I'm sorry, Mayo?  I must sound pretty stupid, but, I'm sorry, I have no idea what that is.  I was born in America, so the only thing I know as "Mayo" is Mayonnaise, and The Mayo Clinic (found on google), but seeing as that is based in Minnesota, that is definitely not what you are talking about.  Forgive my ignorance.

My mom doesn't read fiction either, so that's why I don't go to her for that.  She is more into non-fiction educational books.  I got my interest in herbs from her, and she definitely is a contributing factor to my style.  She used to work at the Renaissance faire, and sometimes she got paid although she had not been hired originally.  She is an amazing person, and the one who inspires me to get back up after I fall.  Just, there are somethings that she has a hard time dealing with, she has high blood pressure, and I don't want to stress her out.  I just want to move to Ireland, we would all be a lot healthier and happier if we could just be there.  Starting these things, restoring our home, making history, and being ourselves.  

I started to paint after going through all of this, I had painted before, of course, but the first time I started to take an interest in, and was any sort-of good at,  painting was when I was 13.  I started painting the night sky.  My profile picture is one that I painted, but that got destroyed.  It was much bigger, but that is all that I have left of it now.  I am mentioning it so you can kind of picture what I am talking about, my skills have change since then, but that is the only picture I have uploaded.  When I move, I want to paint my ceiling the night sky.  I would pull out some tricks I have up my sleeve, which I won't revel in the case that someone else does it first, but it will look more realistic, beautiful, and illuminating.  One day, Crystalin Melody and her family will go down in history for the things they did, and the starting point is Ireland!
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5466760 tn?1368436553
I design old fashioned/ modern style clothing with corsets and things like that.  The are old fashioned, but with my own twist.  Funny that you should mention wedding dresses, because I am seriously considering designing wedding dresses, for the people who want to look like a Victorian Princess.  My designs are "Once Upon A Time" style.  I think I would appeal to the people who have ever wanted to look like a princess, or a female pirate, or anything in between like that.  Don't get me wrong, my stuff is not costumes, but the people of today think that they are.  I sm like a person that lived a few hundred years ago, I like that kind of style better than today's.  Which, when I get my castle, will work out well for me.  There are already others like me, like Damsel in This Dress or Lorriann, but not exactly like me.  This is what I am meant to do, along with many other things (hatting, making cloaks, being an apothecary, painting, etc.), and the only way I figured out was becoming allergic to the sun.  The only thing good that came out of it was I discovered who I am meant to be, what I am meant to do, and where I am meant to be.  I hate my disease, but I have to accept that it has made me who I am; I like my current personality better than my old one.
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4851940 tn?1515694593
I like to wear cotton.  Although when I was younger I did used to wear a lot of crimpolene and polyester.  I used to make my own clothes and the good thing about those materials is that they do not crease.  Trouble is cotton creases a lot.
My daughter is allergic to wool.  

Glad that you are using detergents that is suitable for you.  I have been recommended the EcoEgg for washing (but haven't tried it yet).  It does 720 washes and at the moment costs £14.99 on Amazon.  You also have to buy something (which I forgot) to descale the washing machine first.

What do you design?  
I have just "designed" a wedding dress for a bride and made a groom for a wedding cake. There is a picture of a different one I make on my profile if you want to see it.

If your washing lotions are working, then don't bother with the baby wash.

Keep designing and writing and keep everything that you write.  Don't delete, keep them, you can refer to your stories in the future and it is fun to read too something that you wrote years previously and forgotten it.
I can't help you with regard to sending stories to wherever, I haven't got a clue.

But I do know that you can copy write your work by sending it to yourself so it is franked and stamped on the envelope.

I don't read fiction unless it is kids stories to the grandkids.  

I shall be visiting Mayo in Northern Ireland for a holiday later in the year.

Have fun,

Best wishes.

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5466760 tn?1368436553
I don't wear anything other than cotton.  I have always been sensitive to polyester and other synthetic materials.  Even when I was forced to wear them, I wore cotton underneath.  I am a designer as well, so all of the clothes that I want to make are all going to be cotton.  And I need to figure out UV protective clothing with natural materials; most that are available today are synthetic, which is a shame.  And they are not very good looking.  But then again, my aesthetic is very different from normal people.  I think I would have been very popular in elizabethan times, though. Wearing natural fibers is something that is very important to me.  The world converting to synthetics really bothers me.   It is good to know that others see the importance of natural materials.  
We use Arm & Hammer Detergent, have been basically all my life, and it is the only detergent that I don't have reactions with.  And I am allergic/ sensitive to some foods like parmesan & corn, which give me migraines (parmesan) and headaches. .
I don't have baby wash readily available to me, but I will keep that in mind.  I usually wash with tea-tree body wash, and then put propolis or something similar on.
I will definitely drink more water, sometimes I forget, but I will definitely do that.

Thanks for trying to help.  

I think the best thing for my condition is moving to my place in Ireland.  It would be easier to deal with it not only because the UV spectrum is less intense there, but because I would feel at home, and not so miserable. However, I am like a night owl because I will have to spend the rest of my life being nocturnal.  I give up on the day, too much damage has been inflicted upon my body, I can't try to be normal anymore.  I need to stick to my "night owl" meanderings.  I just need to figure out a way to not get exposed; I am doing the best I can, but there are only so many measures I can take.

And, honestly, I wish that there is media that I could listen, watch, or read without feeling horrible emotionally.  But, the only ideas like that are in my head.  That is why I am also trying to be an author.  I seem to be the only one with my preferences, however, so I don't know how popular I would be.  But I have a vampire story in my head that is way better than Twilight.  If only I could write it without it sounding stupid.  It's in progress, I just don't know how others would feel about it, I don't know if I am conveying my idea well enough.  Off topic I know, but sometimes inspiration comes from our worst experiences and the darkest of places.  It would be cool if I could teach others that the dark is not something to be scared of, and that the only reason they are scared of the dark, is because they are scared of the unknown.  And it would be cool if I could represent the "vampire community" with a believable reaction to the sunlight.  I might as well use my experience for good, right?
But it was easier for me to write fanfiction, because then I had the readers' comments to spur me on.  I think I only got flames one time, that is pretty good, I think.   The readers saying they wanted to read more really helped my writing process; I found that there was a lot more flow and it was written better then when I am left wondering if it is okay.  I nitpick, and I am most definitely not an impartial observer.  So most of the time my work gets erased and never seen by anyone other than me.  I have plenty of inspiration, and an amazing story line, I just am having a problem conveying it.  Which doesn't really matter to anyone but me, but I wish there was somewhere I could post it without requiring money to do so, or someone else stealing my idea.  Fanstory costs money to post, and Fanfiction is other people's characters.  I just don't know where to post my original story with original characters for free and have is safe from plagiarism; and still get readers comments between each chapter like Fanfiction.  It would suck after having to go through all of this to write it, someone else takes my story/ storyline.

I ramble; sorry.
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4851940 tn?1515694593
I am glad that I have been able to make you feel a little better.  

It is awful when there is a real problem and people say it is in your head and especially doctors.  This is usually because of lack of knowledge.

Make sure that you drink plenty of water 2-3 litres is usually recommended, so that you do not become dehydrated.

As you are allergic to the sun, you may also have some allergy to certain foods and detergents.

Keep a record of what you eat to identify any that may make your skin worse and also use non-biological washing detergents and no soaps or shower gels because these dry the skin.  Baby washes should be OK.

As you have a problem with your skin, only wear cotton clothing.  Cotton helps the skin to breathe.

Hope you do find something that may help, even if it lessens the condition a little.

Best wishes.


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5466760 tn?1368436553
The the right ingredients in the pills I mean, they try to take shortcuts. I need to look into having just the extract without those other ingredients.  And I will definitely look into that and figure that out.
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5466760 tn?1368436553
Thank you for your comments, they did help.  I will look into finding polypodium leucotomos extract without ingredients that my family are allergic to.

It was nice to have you confirm.  I knew it has no cure, once this damaged, you can't go back.  I always covered up, when I dared to go out, and now don't go out at all.  I had to cover from head to toe just to go through my house. But hopefully this will help, and will prevent anything happening to my family. But I still won't be going into the sun voluntarily.  

Though I would never wish this on anyone, especially not a little child, it was nice to know that I'm not alone, although I feel extremely horrible for saying that.  

Thank you, again, for your replies, I do appreciate them.
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4851940 tn?1515694593
On 25 February 2013 qwertua posted a reply to me with regard to his six and half year old son who suffers with what yout have.  

I have copied and pasted a section of his reply that may be of use to you:
  
"......The doctor said it is polymorphous light eruption but too server. She recommended some tablet called heliocare which contains polypodium leucotamos extract.  The problem is this tablet is not available in new zealand as there are very people who needs this. Last week the doctor said I will get in USA. So far he does stay indoor most of the time......"

I hope this will be of some help to you.

Best wishes.
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4851940 tn?1515694593
Sorry to hear of your problem.
I have heard of this before and I sympathise with your plight.

It is not in your head and is not a psychological disorder.
As far as I remember reading about this, is that there is no cure.  And you have to stay out of the sun and completely cover up when you go out.

I suffer from Rosacea and have to keep out of the sun.

Best wishes
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5466760 tn?1368436553
The problem is, no doctor wants to listen.  A problem with today's modern medicine is there are too many people that think they know everything, they can't help someone who has a problem they have never heard of before, or they don't want to , so they can't accept it..  My Doc is the one that ruined my life, he killed my brain, I am not going to take anything he prescribes now.  I got 600/600 on 2 years of my state tests before this, now I'm lucky if I can remember what I did yesterday, or two seconds ago.  If there is a doctor that will listen to me, and not make me do things that will make it worse, then I would love to hear what they have to say, but those don't come a dime a dozen.  Unfortunate fact of life, one of too many I've had to learn.  But thanks for your input.  (genuine, not sarcastic; with typing sometimes you can't tell.)
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5466760 tn?1368436553
*dosed
*then
*comes
*bit
I hate typos.

Or is there anyone to whom I can talk about this with?  It is very lonely being like this.  I can't even go through life without seeing/hearing sun analogies. I feel very alone.  I need to talk with someone, preferably not someone who thinks I'm mad.
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Avatar universal
Though I am not suggesting that you have porphyria, since you do not have any other manifestations, yet since you have a photo-reaction this is one of the tests done to make sure that you are fine.
Do consult your Doc.
Mot likely you have a photosensitivity reaction.
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Avatar universal
Get your porphyrin levels done.
Cheers.
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5466760 tn?1368436553
I thought I did a capital P for pain in the title, but it didn't come out that way.
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