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

[RustyJ]

I also suffer brief crashes when beginning D3 supplementation or tanning. This is normal for anyone with low D levels. There are studies showing that initial supplementation actually suppresses the immune system for 24 hours before the benefits kick in. This may partly explain the crashes people with ME experience. I can't find the studies which show this - will continue to look for them. There was a graph with time line showing this effect. If someone comes across it please let me know or post it to this thread.

Following on from this, if ME sufferers have very low D levels then the initial impact is much worse. However this should not deter you from continuing. In my experience the benefits of starting off very low, and gradually increasing dosage or time in the sun will provide benefits. Even then you will still go thru this up down scenario with gradually diminishing lows.

Another part of the mystery is that both calcium and magnesium is important in the process. Guess what many with ME lack - magnesium. Additional supplementation is required. If calcium or magnesium levels are low in the body, your immune system will be suppressed. I will endeavour to find the studies of this as well.

The point I am trying to make is that if you suffer a crash with D supplementation (and it should be D3 or sunlight in small doses) please persist.

 

[maz]

I'm new to this site but have just spent a week housebound after spending an afternoon in a swimming pool (so wasn't hot) with the sun on my head. The reaction was delayed and I felt ok until lunchtime the following day. That's one of the biggest problems for me with working out what my limits are are what are my triggers. I have lived in Egypt for 3 years but this is the first time I have felt the sun was directly responsible for the onslaught of symptoms. I will now hibernate until I go to the UK at the end of July! Have just noticed the post above and thought I should mention that I have been supplementing with D3 and magnesium for 6 months - I have a lot of calcium in my diet.

 

[helsbells]

Hi, helsbels and the group.

You might also consider porphyria as a possibility. Sun exposure can make a person who has porphyria very ill.

Best regards,

Rich

hey Rich thanks for the Hi

Sorry for the late reply BF means i am unintentionally like a butterfly on subject matter and I had already flitted and forgot all about this.

I got them to check this twice but wasn't particulalry flaring at the time - difficult to time, i still have a third urine test but I never did it as lost faith in the NHS testing. I was hospitalized with severe abdo pain after sun exposure and taking atarax (a red zone drug for porphyria) plus I have major MCs but who knows it may just be be very poorly people react to lots of things ??? I have so many contary reactions I give up sometimes trying to fathom. Thanks for flagging it up though it was a smart suggestion

 

[Dainty]

Like so many here, I also have intolerable symptoms to sunlight exposure...but for me daylight in general is a problem too. My living area is completely blocked out from all daylight, with all the windows taped down with foil paper to make sure none gets through. Currently I can tolerate a small amount of exposure with minimal symptoms, but in the past I've gone months at a time where even sticking my head outside on a cloudy day (with clean air) was enough to cause instant nausea, dizziness, and confusion. I love the outdoors and would test myself on it multiple times. Once during a phase where I couldn't tolerate any at all I decided I'd stay out there for a full ten minutes, to see if the symptoms would pass as I got used to it. I ended up needing to call my caretaker to help me get up and walk back to my room because I was so disoriented, dizzy, and nauseous. And it was so frustrating because, again, I love nature, I love the outdoors....there was certainly no lack of motivation!

But again, thankfully, I'm currently at a time when I can tolerate small amounts, and I'm enjoying that to the full.

 

[MNC]

Add me to the list. Ane every summer I try to go to the swimming pool just to get some sun and tan for my dracula skin. I have lived inside home and sleeping during the day and awake all night for ages. So I try to get some natural sun.

And every summer the same story. I go to the swimming pool, I use sunscreen, and after about one hour I feel like I'm dying. When I look at myself in the mirror in the changing room of the swimmimg pool I see a dead man, my face looks 120 years old, full of spots, pale, sunk eyes, while I get a wild flare of all my classic and worst undescribable symptoms (inability to breath, total dizziness, nausea...)

I guess it has to do with dysautonomia and vasodilation and dehydration and so on, but I am tired of trying to find an explanation to every wild symptom. At the end what counts is that, the sun, as many other factors, just kill me and put me in near-death feeling for days.

 

[Stone]

Yes, I get very sick with sunlight exposure. I get an allergic rash and I feel terrible for days, but this only happens when I'm in a flare or a rough patch. When I'm in a relatively good state, which hasn't happened in over a year, this doesn't happen quite so readily.

 

[helsbells]

Could I extend the question slightly, does anyone know if they that have a problem with sunlight also have a problem with vit D? I am trying to take fish oil ATM (Krill to be exact) at the excellent suggestion of a member after I got reflux from standard fish oil - this stuff is indeed good for me gastrically but have been getting terrific headaches, trouble is it is very sunny ATM and they are exactly the same headaches we have been talking about, head in a vice stuff and i am trying to sort out if it is sunlight or the vitamin D - I about the TM protocol and all just wondered directly those people here who get trouble with sunlight ok with D?

 

[Dainty]

Could I extend the question slightly, does anyone know if they that have a problem with sunlight also have a problem with vit D? I am trying to take fish oil ATM (Krill to be exact) at the excellent suggestion of a member after I got reflux from standard fish oil - this stuff is indeed good for me gastrically but have been getting terrific headaches, trouble is it is very sunny ATM and they are exactly the same headaches we have been talking about, head in a vice stuff and i am trying to sort out if it is sunlight or the vitamin D - I about the TM protocol and all just wondered directly those people here who get trouble with sunlight ok with D?

Helsbells,

I posted over in the Healthy Oils thread about my vitamin D problem. Basically for three years I couldn't take any vitamin D (not in food, not in suplements....even the tiniest amounts were out of the question) and my reaction was severe, constant, body-wide pain. Vitamin D levels were so low my doctor was very concerned. I am now able to tolerate one specific brand of cod liver oil, but it's only been about 4 or 5 months of that so I haven't had much chance to test how much this affects my sensitivity to daylight/sunlight. So far it seems about the same.

 

[helsbells]

Helsbells,

I posted over in the Healthy Oils thread about my vitamin D problem. Basically for three years I couldn't take any vitamin D (not in food, not in suplements....even the tiniest amounts were out of the question) and my reaction was severe, constant, body-wide pain. Vitamin D levels were so low my doctor was very concerned. I am now able to tolerate one specific brand of cod liver oil, but it's only been about 4 or 5 months of that so I haven't had much chance to test how much this affects my sensitivity to daylight/sunlight. So far it seems about the same.

hi dainty :Retro smile:

Mine are pretty low too - also the efa that is the fishy oils bit is VERY defficient so I am trying. I also get confused with the Vit D status most say good and then just a couple say bad thing, I would sooner go with the first group but my experience with D is not good evidentially. I want to keep trying the krill though, I am heartened by your response given that you couldn't even tolerate it in food and now can maange CLO so will proceed with caution once my head is out of the vice that is :Retro wink:

All the Best

 

[Dainty]

hi dainty :Retro smile:

Mine are pretty low too - also the efa that is the fishy oils bit is VERY defficient so I am trying. I also get confused with the Vit D status most say good and then just a couple say bad thing, I would sooner go with the first group but my experience with D is not good evidentially. I want to keep trying the krill though, I am heartened by your response given that you couldn't even tolerate it in food and now can maange CLO so will proceed with caution once my head is out of the vice that is :Retro wink:

All the Best

Glad you found my response helpful.

I personally feel that the kind of CLO makes a huge difference, because most of the stuff out there with various fish oils has been so highly processed that it loses much of its vitamins and is very, well, processed. Processed usually doesn't equal healthy. Some manufacturers add synthetic vitamins to make up for all the vitamins lost during the bleaching, filtering, and heating procesess. I'm one of those who believe that synthetic vitamins have a diferent effect on our bodies than natural ones. The CLO I take is raw, fermented, and free of contaminents without the extensive processing.

I know what you mean about the vitamin D confusion. I actually seriously considered the Marshall Protocol when I first became bedridden, and over the years have figured that since I don't do well with vitamin D then there must be a grain of truth to it. But as the years went by I kept thinking "this isn't working, how about we try the other side" and that's why I attempted vitamin D so many times. And finally, finally, it looks like it's working.

Are headaches your normal reaction to vitamin D? You said you got reflux from standard fish oil...I assume that was righ in vitamin D in it as well? If you didn't get headaches with standard fish oil but are getting them with krill oil then it sounds to me that vitamin D is not the problem, but rather something else in the krill oil, something that's in the krill oil but not in the fish oil.

P.S. I really don't mean to derail this thread....really...

Edited to add: A simple test would be to take a Benadryl with the krill oil and see if that resolves your headaches. If it does, that's mean it was an allergy. You can also do an unnoficial "skin prick" test on yourself by scratching your skin with a needle (not enough to draw blood) in a sensitive spot (such as the underside of your arm or on your stomach). Apply some oil to the fresh scratch, and then wait 5-10 minutes to see if it swells up. If it gets itchy and swells up big then you know it's an allergy. If you're unsure about the results then it probably isn't.

 

[helsbells]

I don't get standard reactions to anything dainty - the headaches could be from sun exposure (as this symtom can extend well beyond the itintial exp which is why I was thinking vit D problem initially), LDN, or absolutely anything - My filtered tap water is giving me diareah ATM just to give some idea to the extent of the intolerances and allergies. So it is beyond impossible to trace the responses sometimes. When I am at my worst I seem to have a problem digesting fats good or bad. I will have a couple of days off then try again, cheers :Retro smile:

 

[Starlight]

thank you all so much for this in depth covering of sun topic. i have had this for the past 5 years ,thought i was going mad at times ,affected physically and psychologically (couldnt think clearly,felt as if my brain was frying ,terrifying,) it has been much worse recently .even a few mins in sun was causing havoc , crippling joint pains and muscle pain +the frying brain.recently had me in bed for nearly a month except when i had to cook .when i was able i went to doctor.i had a negative lupus test 12 months ago he said there was nothing they could do , suggested a burka .i didnt find his amusement funny at all. i was so glad to find this thread thank you so much parvo for your huge effort .it was just amazing to me like a balm to my spirit , it all made so much sense to me .i was just so relieved to find there were others out there and to find this was something to take seriously .

 

[condra]

I can tolerate sun during good patches, and during bad patches, I get allergic rashy blistering from even moderate exposure.

Interestingly, the sun rash is accompanied by exasperated ME/CFS symptoms. This has ultimately lead me to the conclusion that CFS/ME symptoms are effectively allergic reactions caused by an (over?)active immune system.

I wrote about it here:
http://www.forums.aboutmecfs.org/sh...fects-the-nervous-sytem!)&p=119301#post119301

 

[JAXintheCity]

I break out into a rash on my hands, feet and face after being exposed to sunlight. I never had this problem before CFS.

Ironically, if I go to a tanning salon (which I'm not recommending for most people b/c of cancer, etc) and use a high-pressure system that filters out UVB rays, it stops the bumps from forming in natural sunlight. Also, it tends to give me an energy boost (which I think is related to Vitamin D). Definitely not for everyone, but it's worked for me...

 

[Mya Symons]

Some herpes viruses are activated by the sun. Could it be your weakened immune system is having a hard time holding down these viruses that people without CFS usually do not have a problem quarantining, such as EBV or Cytolomegalo?

 

[muffin]

I am very allergic to the sun

When I went out to the sun I would get what felt like I was having low blood sugar symptoms. Shaking, trembling, etc. But nothing foodwise would help. I ate peanut butter, sugar, protein and no foods would stop what I thought was a low blood sugar. Well, if dawned on me that this was not a reaction to low blood sugar but the sun. We lived in LA for two years and I could not go out into the sun during the day. I ran to my car from the parking lot into my office and back. Could not leave during the day, not even to go to get lunch. It was so bad by the time we left that I went to the supermarket at night to avoid any sun. Our house had curtains drawn at all times.

Last year I sat in the sun on the deck in April for less than 1/2 hour. Spring sun, not heavy August sun. I had a V-neck shirt on and for the next three months there was a red V area that did not go away. Mind you, I had not been in the sun for any time in the previous 25 years. But having a dark red V mark where the sun hit for three months was insane. I told and showed a dermatologist about this deep red mark and it not tanning or blistering or doing anything but going whtie when pushed and then back to red and he said that was a sun allergy and that this was not as uncommon as once thought. My red V mark for almost three months was a sign that I was indeed allergic to the sun.

Even that quick run to the car from my house or parking lot is enough to start the shaking, etc. The sun makes me so sick and weak for just tiny amounts out in it. I think I would actually die if I were out in the sun for hours. Not kidding. My extreme sun allergy started right before I got CFIDS. I don't know if there is a pattern/correlation but it is at the extreme. The same odd reactions also happen to my best friend who has severe Fibro. She too can not go in the sun at all and must wait until the sun goes down before she can go outside to do any gardening, etc. And my husband, who was NEVER bothered by extreme heat or sun is now unable to tolerate the sun/heat at all once he got CFS five years ago. He never even felt the extreme heat where I would be stripping and crying about how hot I was and that I was going hyperthermia and would die. He used to get upset and say that I was being dramatic, I would not die from hyperthermia with the temps as they were, but he does not say that anymore! No heat or sun for him now that he has CFS. Go figure that one out.

This sun allergy made me wonder about taking Vitamin D as I had read about a syndrome where Vitamin D was very bad. Can't remember the name of the disease, but pointed it out to my internist and told him that when I was first taking the prescription Vitamin D (50K units once a week since my levels were so dangerously low and freaked him out) that I was feeling sick like I had been in the sun. I don't know how Vitamin D plays into all of this. I believe that most of us have low Vitamin D due to not getting sun and other medical reasons. But I also am not certain that Vitamin D doesn't also do some sort of damage to us either. One of those "damned if you do, damned if you don't" situations we CFIDERS must live with.

I thought that Cod Oil was just about going to kill me in a tiny dose. Never did that again. Just an odd FYI.

 

[muffin]

Beware: Than tanning that cuts out the burns, blisters, etc does NOT give you the benefits of vitamin D. I was told that by a doctor and then read it again elsewhere. You have to have the tanning that does in fact damage the top of the skin to get the vitamin D benefits. I too tried the sun booth once that did not burn the top level of the skin (can't remember if it filters out UVA or UVB) but all it did was make me red as sin and I was only in there for 15 minutes total. Just red, no tan. Didn't do that again either.

Look into whether that no burn tanning does give you Vitamin D benefits. I believe it does not. But you must research and see what's going on. I don't know why it would give you energy, odd, but look further into this.

 

[JAXintheCity]

That's really interesting. I wonder if not related to Vitamin D, it might have something to do with endorphins... Oh, and the systems don't filter out all UVB rays, just most of them. You can still 'burn' or overexpose if not careful.

 

[meadowlark]

I have huge difficulty with sunlight, but so far as I can tell it is purely visual. I began to notice sensitivity to sun glare (off a bright sidewalk, through a windshield, etc.) when I was thirteen ... over a half century ago. The sensitivity increased with the decades.

The gradual onset of ME/CFS since the early 80s has had me 50% housebound/bedbound since the 90s. After about 2004, I had four grand mals that in my perception were triggered by a combination of glandular fever and pure blue sky. Each was on a rare day that I was able to go outside, and it felt so good just to feel a breeze on my skin and to smell leaves, hear people converse on the street ... but the visuals were disturbing. They were dazzlingly sharp and bright. Much too much so. I developed vertigo ... felt afraid to take each step because I thought I would fall a thousand feet ... and in addition I could no longer see in three dimensions. Everything flattened out. When I looked down a street, buildings several blocks away seemed to be directly in front of me. Even dark prescription sunglasses didn't change this effect, and in each case I simply had the seizure and was picked up off the street by Good Samaritans who took me to the nearest emergency room, or I was able to walk into a store and say "call an ambulance; I am going to have a seizure." (And I was right.)

I have been 90% bedbound for the past year. On the rare days I can go outside in wheelchair or get carried right into a car or whatever, I can't do it if I have fever and the sun is bright. And if I have a glandular fever I can't be placed in the living room on a sunny day unless the blinds are closed. My living room has a southern exposure, and though when I'm indoors it has never triggered a seizure, it makes me feel hideous ... dizzy, aching eyes, and nausea.

Incidentally, this happens in both winter and summer sunlight, so for me it isn't a matter of heat.

I want to stress the upside of this post ... there are Good Samaritans in the world.

 

[Esther12]

I keep coming across things saying how important vitamin d is, so I think this could well be a worthwhile supplement for those of us not getting much sun. I've not actually notice it bring any improvement to fatigue... but it seems that there's a growing amount of evidence that it's important in other ways.