How Many Of You Have Sun Sensitivity?

[kkrylee]

18 yr old with POTS and Autonomic Neuropathy has every symptom listed for Dysautonomia PLUS: she not only has heat intolerance but has very strong symptoms from sun exposure.

After only 5 mins in the sun, she develops a vibrant rash on face and upper chest and for the next day has extreme disabling autonomic symptoms.

I know that Porphyria and Lupus can cause this type of reaction but she has repeatedly been tested for both of these and test are negative.

Is this a autonomic problem or something else? Anyone else have this experience?

[poppetkazutaka]

18 yr old with POTS and Autonomic Neuropathy has every symptom listed for Dysautonomia PLUS: she not only has heat intolerance but has very strong symptoms from sun exposure.

After only 5 mins in the sun, she develops a vibrant rash on face and upper chest and for the next day has extreme disabling autonomic symptoms.

I know that Porphyria and Lupus can cause this type of reaction but she has repeatedly been tested for both of these and test are negative.

Is this a autonomic problem or something else? Anyone else have this experience?

I have autoimmunity of some sort (hasn't been pinned down yet) and I have to wear a floppy hat and long sleeves now because if I'm out for more than five minutes I instantly start burning. I also have sensitivity to fluorescents, so I constantly have a face rash. :3

[summer]

I just replied earlier today to a post about beta blockers and rash. I have fair skin and have always burned very easily. I never tan, just burn over and over.

After I started taking the BB I began developing a rash on any part of my skin that was exposed to sun. I also burn in about 10 minutes. I experience worsening autonomic symptoms too, even if it's not hot - just sunny. Kind of takes the fun out of those beautiful summer afternoons, and no more beach for me .

I do find that wearing sunblock prevents the rash.

Summer

[summer]

....Oh yes, and I also develop a butterfly rash on my face with sun exposure that takes a very long time to go away. I also had a negative ANA so I guess it's not lupus.

[kkrylee]

Yes, she does get the butterfly rash and rash on upper chest with just a few minutes in the sun. But she is not on Beta Blockers. Only Mestinon which is different than Beta Blockers.

The odd thing is that she NEVER got sunburned before her illness began 5 yrs ago and her skin tone was olive which became very dark in the summer with no sunburning. Since her illness she has extrremely pale skin (almost gray at times) and does not get sunburnt but does get the facial rash (butterfly fashion) and the chest rash and the severe autonomic symptoms with sun exposure. She also has difficulty withher eyes when in rooms with lots of artificial lighting.

That all sounds like porphyria or lupus, but again the test are negative for these.

She loves beauty pageants and even after a spray on tan at maximum strength, she still has the whitest skin of all the girls on stage. Doctors don't think that her skin tone is significant to her illness but it seems to me that the tie in should mean something.

Thanks for you input Summer. I appreciate any help since we all know the doctors can't take the time needed to delve into these issues.

Anyone else with sun exposure issues?

[the4richards]

I tan easily, but have always gotten tiny water blisters on my arms and the tops of my hands.

Just recently I began having a reaction to the cold also. Cold urticaria. If my hands/feet/face get cold I get hives and I get the bright red rash on my face like from the heat. You can test this one yourself by putting a piece of ice on your forearm for 5 minutes. Check it in 15 and see if you have a hive. Mine looks like a pancake. I can get it even if I'm just cutting up cold meat for dinner or peeling an orange.

Nobody can tell me yet if it's related to pots in any way.

[shadesofgrey49]

Sun gives me the head-in-a-vice feeling and nausea. Also makes my acne freak out.

[Noreen]

Yes, she does get the butterfly rash and rash on upper chest with just a few minutes in the sun. But she is not on Beta Blockers. Only Mestinon which is different than Beta Blockers.

The odd thing is that she NEVER got sunburned before her illness began 5 yrs ago and her skin tone was olive which became very dark in the summer with no sunburning. Since her illness she has extrremely pale skin (almost gray at times) and does not get sunburnt but does get the facial rash (butterfly fashion) and the chest rash and the severe autonomic symptoms with sun exposure. She also has difficulty withher eyes when in rooms with lots of artificial lighting.

That all sounds like porphyria or lupus, but again the test are negative for these.

She loves beauty pageants and even after a spray on tan at maximum strength, she still has the whitest skin of all the girls on stage. Doctors don't think that her skin tone is significant to her illness but it seems to me that the tie in should mean something.

Thanks for you input Summer. I appreciate any help since we all know the doctors can't take the time needed to delve into these issues.

Anyone else with sun exposure issues?

I have sun exposure issues - can't stand it at all the past 3 yrs. I get a raised rash over my chest and neck , burn with scarring. I have RA and assorted other autoimmune conditions and have been under a rheumatologist's care for 12 years. The problem with SLE is that you have to meet the blood tests as the rheumatologists are constrained by having to see the 4 out of 11 shown below.

"The American College of Rheumatology also uses a criteria list to help rheumatologists and other doctors make a diagnosis, but blood tests are the gold standard for confirming a lupus diagnosis.

Other criteria include:

Fever, fatigue, and weight loss

Arthritis involving multiple joints for several weeks

Butterfly-shaped rash over the cheeks

Raised red rashes that scar

Skin rash appearing in areas exposed to the sun

Mouth or nose ulcers

Joint pain with swelling and tenderness

Heart and lung lining inflammation (pericarditis and/ or pleuritis)

Seizures or other neurologic disorder

Kidney problems (blood or protein in the urine detected through urine tests)

Low blood counts (anemia, low white blood cells or low platelets)"

My labs never come out the way my doctor think they will after examining me. We have been dancing around this diagnosis for years - I think she had at least 4 last time I saw her but when her office called this week, the ANA was negative. The way we deal with this is she prescribes meds that will cover current conditions and probable/possible conditions. So, I am on plaquenil and methotrexate. The plaquenil is prescribed for the RA, the Anti-Phoslipid Syndrome, and is the go to drug for Lupus.

I actually was diagnosed with SLE by my dermatologist 7 or 8 years ago but I was healthy at the time so my PCP and the rheumy discounted her opinion. I would encourage you to have the girl seen by a dermatologist for evaluation and possible skin biopsy and she really should be under the care of a rheumatologist. If she ends up flaring, that would not be the time to try to find one.

Autonomic dysfunction and SLE seem to go hand in hand. Just google it if you need to have something to discuss as neurological involvement.

[mvdula]

I don't get any rashes or visible reactions, but I can't stand to be in the sun very long. Just feels WAY too hot for me - different from heat.

[Elfie]

Sounds kind of like me. I have always been fairly fair, but had an olive undertone to my skin and tanned deep and never burned. Got sick and all of the sudden I am like ghostly pale, no matter how much time I spend in the sun. Also have had reactions recently to the sun that leave a bright pink sunburn like reaction within a few minutes of being out in the sun. However, it goes away within a few hours of being out of the sun. It is worse when I take antibiotics. I know that antibiotics can cause sunburn and sun sensitivity, but I have never had a reaction related to antibiotics and sun until POTS.

[nforste]

Hmm. I feel a bit odd now. I actually think I tan more easily since developing POTS.

[Tachy Phlegming]

I have the same rash from the sun. I can't take the sun. I can't deal with heat.

Like some of you, I have a beautiful library tan as well.

My skin color makes me feel like Snow White (but I could also feel a pea under a lot of mattresses and there are days when I feel like I could sleep for a hundred years).

At least a lot of very nice stories have been written about us .... we are indeed royal ... supine pale women who are best off sleeping in the dark cold woods and who are bruised by the smallest insult ...

[ethansmom]

I am pretty intolerant to sun as well. Heat bothers me, especially for prolonged periods of time, but being in the sun too long can wipe me out for days. I feel that it's because I get extremely dehydrated VERY quickly and therefore it takes a long time for me to replenish and rest up to recover, even if I feel like I'm drinking tons of fluids.

I can tan easily, but I choose to stay in the shade over tanning, so I am semi-pale these days

[Noreen]

I have the same rash from the sun. I can't take the sun. I can't deal with heat.

Like some of you, I have a beautiful library tan as well.

My skin color makes me feel like Snow White (but I could also feel a pea under a lot of mattresses and there are days when I feel like I could sleep for a hundred years).

At least a lot of very nice stories have been written about us .... we are indeed royal ... supine pale women who are best off sleeping in the dark cold woods and who are bruised by the smallest insult ...

LOL...great post