Discussions By Condition: I cannot get a diagnosis.

Sunlight triggers allergies and Chronic Fatigue for me.. What's the cause?

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: T80230
  • May 28, 2008
  • 00:01 AM

During the day when the sun is out, I have all these symptoms:

Extreme Fatigue to the point of needing naps (very dizzy and light headed)
Extreme Allergies to dust, pollen, grass, mold, milk, breads, etc.
Heat and Cold intolerance.
Body temp is often low (96.1)
Morning stiffness that goes away by 10AM
brain fog
forgetfulness
trouble swallowing
Always either hot or cold
Cold dampness and hot humid air both intensify fatigue.

This seems like Chronic Fatigue Syndrome but it's only when the sun is out.


From 7Am to 10AM I am fine, then after 10AM as the sun intensifies
all these symptoms start and intensify as the day goes on. From 11AM
to 3PM my symptoms are brutal. By 4 PM I start to feel relief and by
6PM I am 100% fine.

I have had every blood work test done. CBC is fine. ANA is fine which
I am told rules out MS and Lupus which are the only 2 things that I can
find that are sunlight related. Thyroid test was ok. Been to neurologist
and rheumatologist and neither found anything wrong with me. Heart
Stress test was ok. EKG was normal. lung Xray was clear. MRI of brain
was normal. Sugar level was right in the middle.

I had a red bullseye on my neck from a spider bite in 1995 but never
sought any tests and it went away. In 2004 I had a lyme test done
but it came back negative.


6AM-10AM 100% fine (except body has stiffness)
10AM-4PM I am sick with all above symptoms
5PM-10PM 100% fine, no issues at all


What disease or condition would be triggered by the sun???
I have had these symptoms for 8 years now.

PS: I enjoy early morning sun and that seems to make me feel
good but as soon as 10AM hits, it starts to get intense and my
symptoms start.


Thanks so much for reading..
Tom

Reply Flag this Discussion

17 Replies:

  • I enjoy early morning sun and that seems to make me feelgood but as soon as 10AM hits, it starts to get intense and mysymptoms start. This one is a long shot and may be way off as i dont know if it fully fits or not.. but is the only thing i can think of which involves allergy symptoms (due to increased hisamine) and CFS like symptoms (as it can affect any body part so can cause all kinds of symptoms) .. and can be triggered by sunlight.. Mastocytosis.... The symptoms of systemic mastocytosis result from mast cell degranulation. The active substances include histamine, chemotactic factors, heparin, prostaglandin D2, proteases and several leukotrienes. 2,5 Degranulation may be triggered by immunological mechanisms, physical stimuli (heat, cold, sun exposure, friction), bacterial toxins, snake venom, acarid mite polypeptides, sea food and anaphylatoxins, 5 chocolate, wine and drugs such as aspirin, alcohol, opioids, polymyxin B, amphothericin B, thiamine, tubocurarin, quinine, radiological contrast, among others. The patients may have fever, chills, night sweats, bone pain, nausea, vomiting, diarrhea, epigastric pain, dysphagia, dyspnea, palpitations, chest pain, syncope, bronchospasm, headache, vertigo, rhinorrhea and hoarseness ............................. I also know that some CFS patients say their CFS is triggered off more by the sun. Thou of cause you couldnt be said to have CFS if your symptoms are going away.
    taniaaust1 2267 Replies Flag this Response
  • Low thryoid can give you the symptoms you mentioned and those with low thyroid have low body temps and are sensitive to heat.....have you had your thryoid tested? Ft4, FT3 and TSH and the antibodies for the autoimmune diseases of the thryoid? Adrenals is also a thought...cortisol, but I am not sure about that and heat triggers...also blood sugar...it may be you have this going on and the HEAT or what you are doing out in the HEAT that is just a trigger rather than the sun......Joan
    Joan5555 316 Replies Flag this Response
  • Thanks friends..... I have more info to give you:Mastocytosis? I did some reading and I don't have any lesions. So while some of the symptoms fit, I can't see how this could be it.? But please correct me if I am wrong on this...I had a generic thyroid test done and it was right in the middle. It was just TSH if I recall. I talked my doctor into giving me a low dose of Levoxyl (synthetic thyroid) once and it made me so sick.. My nervous system went nuts after one dose and I was a wreck so I gave up on that one. If it were the thyroid, wouldn't the Levoxyl make me feel better rather than make me feel all nuts inside? It was the worst reaction I had ever had to a medication. My nervous system was all out of whack with it.. My body felt outof control for 4-5 hours.. Adrenals? I had this test done and my cortisol levels reacted as expected:ACTH StimulationIf the findings of the initial blood and/or urine tests indicateinsufficient cortisol production, the doctor may order an ACTH stimulation test. This test involves measuring the concentration of cortisol in a patient’s blood before and after an injection of synthetic ACTH. If the adrenal glands are functioning normally, then cortisol levels will rise with the ACTH stimulation. If they are damaged, then the response will be limited. A longer version of this test (1-3 days) may be performed to help distinguish between adrenal and pituitary insufficiency.I have had fasting blood sugar tests and I came up normal.I guess I might get fatigued a little at night but it is soo much less so andI don't feel the flu-like symptoms at night so I really do feel most normalat night. A another way to describe my symptoms..I feel that sunlight brings on allergies, fatigue, and flu-like feelings. From 10AM to 10:45ish on the sun starts to cause my nervous systemto go out of whack and I feel like lots of pressure in my head. I feelbrainfog and confusion. Then the fatigue sets in and I need a nap. If I don't nap and fight it, I feel dizzy, brainfog, and light-headeduntil 4PMish.Jumping into a cold pool at noon seems to bring instant relief but itonly lasts about 45 minutes before the symptoms return. 5MG of Prednisone helps more than anything and if I take it dailyI am almost cured but I only take it occasionally as the doctortells me that is killing me every time I take it. Ibuprophen alsohelps but it only takes the edge off. Prednisone knocks it done.
    T80230 2 Replies Flag this Response
  • Thanks friends..... I have more info to give you:Mastocytosis? I did some reading and I don't have any lesions. So while some of the symptoms fit, I can't see how this could be it.? But please correct me if I am wrong on this...I had a generic thyroid test done and it was right in the middle. It was just TSH if I recall. I talked my doctor into giving me a low dose of Levoxyl (synthetic thyroid) as an experiment once and it made me so sick.. My nervous system went nuts after one dose andI was a wreck so I gave up on that one. If it were the thyroid, wouldn't the Levoxyl make me feel better rather than make me feel allnuts inside? It was the worst reaction I had ever had to a medication. My nervous system was all out of wack with it..Adrenals? I had this test done and my cortisol levels reacted as expected:ACTH StimulationIf the findings of the initial blood and/or urine tests indicateinsufficient cortisol production, the doctor may order an ACTH stimulation test. This test involves measuring the concentration of cortisol in a patient’s blood before and after an injection of synthetic ACTH. If the adrenal glands are functioning normally, then cortisol levels will rise with the ACTH stimulation. If they are damaged, then the response will be limited. A longer version of this test (1-3 days) may be performed to help distinguish between adrenal and pituitary insufficiency. I have had fasting blood sugar tests and I came up normal.I guess I might get fatigued a little at night but it is soo much less and I don't feel the flu-like symptoms at night so I really do feel mostnormal at night. A better way to describe things..I feel that sunlight brings on allergies, fatigue, and flu-like feelings. From 10AM on the sun causes my nervous system goes out of whack and then the fatigue sets in and I need a nap. If I don't nap, I feel dizzy, brainfog, and light-headed until 4PMish. When I work in buildingswith good air changing AND sit in a cubefarm that blocks out all sunlightI seem feel ok..
    T80230 2 Replies Flag this Response
  • Thanks friends..... I have more info to give you: Mastocytosis? I did some reading and I don't have any lesions. So while some of the symptoms fit, I can't see how this could be it.? But please correct me if I am wrong on this... It's the common form of Mastocytosis "urticaria pigmentosa" which usually appears in babies which has the skin lesion feature always present and often doesnt affect other places. I wasnt thou talking about that form but the form which is more likely to affect adults and doesnt necessarily have the skin lesions... "SYSTEMIC Mastocytosis" " In systemic mastocytosis, mast cells accumulate in the skin, stomach, intestines, liver, spleen, lymph nodes, and bones."......................... When I work in buildingswith good air changing AND sit in a cubefarm that blocks out all sunlightI seem feel ok.. I too like another here are wondering if your night activity is different to your day time one..and hence it being what you are doing, rather than than the sunlight triggering your condition. Eg are you on your feet more during the day? Are your nightly activity levels less than your day ones?.. if so.. it could be an orthostatic (issue with standing), postural issue. (That kind of thing is due to various postural conditions is common in CFS.. standing will bring on more symptoms esp dizziness and lightheadness.. where as sitting or laying isnt so bad. Improvement of symptoms happens some when one lays down). You say you feel better when you work in the buildings.. but mention then at such times you are "sitting" . So maybe it's a postural problem, than rather the sunlight. If your issues are in fact related to what you are doing (rather than the sun).. it is possible that you do have a mild case or the start of CFS (symptoms can build and accumulate over time). Unfortunately thou cause there currently isnt a scientific test.. if it is that, you couldnt get a diagnoses until you get a lot worst.
    taniaaust1 2267 Replies Flag this Response
  • The fact that the 5MG of Prednisone helps is curious, right? That implies, I believe, something to do with adrenals....you may have something called adrenal fatigue and you might want to look up on this a bit...again this, like lnsulin resistance, is not widely accepted, but look it up. In this case, instead of the prednisone, you may find a change in diet, adding in ginsing, Maca, or other herbals that act on the adrenals may help and be less scary than the prednisone but still help. What about seeing a chinese med doctor, Kampo doctor, and even doing acupuncture? (I am in Japan and do see these work and they are widely done at hospitals). If it is the case that doctors cannot pinpoint what you have then you might best deal with it in this way. It does not seem like you have a deadly illness, but your quality of life is effected, in this case chinese meds and acupuncture, diet and so forth may work best...just a thought. Joan
    Joan5555 316 Replies Flag this Response
  • Sounds like solar urticaria. Try here: http://allergies.about.com/od/urticariahives/a/solarurticaria.htm
    aquila 1263 Replies Flag this Response
  • How do you sleep at night? It could be related to sleeping issues -- apnea, allergies, bad bed, et... You could have just enough energy in the morning and by late morning be tired again because of your sleep cycle. Seriously - all your symptoms can be related to sleeping poorly - it takes very little to knock us off a regular sleep cycle AND you need to go through all the stages of sleep to be well rested.Also - I agree with one of the other posters (taniaaust1) -- it might be related to other issues instead of sun exposure. Keep a journal of what is going on when you are and are not having symptoms -- diet, location, activity, etc... What happens on cloudy days -- if this is related to sunlight you should feel FANTASTIC on cloudy foggy days. Does it happen if you are on vacation? Out of town? Etc.... Try to take away the sunshine factor - I think you may have become fixated on it and are not seeing other patterns.I would expect the prednisone to make you feel better if this is allergy or exhaustion related. Prednisone is used to treat severe allergies and can increase glucose in the blood stream (more energy for muscles). Actually prednisone tends to make everyone feel better until you crash (and you crash hard from steroid use) - I def. wouldn't use it often or even at all. Try taking benedryl at night and get on a nasal steroid and see if they help. Chronic Fatigue tends to be a diagnosis of exclusion and you have def. not had enough things ruled out for it be considered yet.Amanda FNP
    Anonymous 42789 Replies Flag this Response
  • could be fibromyalgia........thats what i have.......its stiff when i wake up but then i feel ok for a few hours but then i feel like ***l and mine does get better in the evening.....i also think that sunlight may be contributing to my agony. im 25 now and i started having problems at 16........i just now got a diagnosis. be persistent. i also suggest another test of lyme disease........blood tests do not always work......i saw a tv show with a young girl who had it and her test was negative..........10 years later with no improvement they just began treatment........it worked! i copied this for you from the wikipedia page.Chronic vitamin D deficiency is often misdiagnosed as fibromyalgia because its symptoms are so similar: muscle weakness, aches and pains. this can occur without an accurate amount of sunlight for your skin. see below:Vitamin D deficiency can result from inadequate intake coupled with inadequate sunlight exposure, disorders that limit its absorption, conditions that impair conversion of vitamin D into active metabolites, such as liver or kidney disorders, or, rarely, by a number of hereditary disordersDiagnosis of late-stage Lyme disease is often difficult because of the multi-faceted appearance which can mimic symptoms of many other diseases. For this reason, Lyme has often been called the new "great imitator". Lyme disease may be misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome (CFS), lupus, or other autoimmune and neurodegenerative diseases.Laboratory testingSeveral forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.i hope some of this is useful.
    Anonymous 42789 Replies Flag this Response
  • Porphyria is notorious for being triggered by sunlight. Though some types cause skin sensitivity, others are neurological. Check on porphyria, and see if it fits. An easy test to do yourself, when you have symptoms-pee in a clear glass, put it in the sun, and see if it turns purple after a day or so. If it does, it's a clear sign that you have it.
    Anonymous 42789 Replies Flag this Response
  • Research OI (orthostatic intolerance) symptoms are often trigger by heat ie: sunlight Here are SOME of the symptoms:Excessive FatigueExercise IntoleranceRecurrent Syncope or Near SyncopeDizzinessNauseaTachycardiaPalpitationsVisual DisturbancesBlurred Vision Tunnel VisionGraying OutTremulusnessWeakness - most noticeable in the legsChest DiscomfortShortness of BreathMood SwingsMigraines and Other HeadachesGastrointestinal ProblemsPlease let me know if this was helpful =) Best wishes and feel better =)
    aliceanna 41 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Have you read anything about Sarcoidosis... My father who is a physician has it and he says sunlight is a major factor/trigger.
    Anonymous 42789 Replies
    • August 17, 2009
    • 05:52 AM
    • 0
    Flag this Response
  • I don't think there's anything wrong at all. It's just the body's natural reaction to warm climates in direct sunlight.If you think about it, a lion will appear very lazy throughout the day, but when the temperatures are cooler, that's when the high energy activity happens.Being highly active in direct sunlight takes a lot of energy.The underlying principle is the change in body temperature. If you exercise the body to be more tolerant of temperature variations, then this may provide a way to cope. Also, the 'tan' will help with UV protection etc.
    Anonymous 42789 Replies Flag this Response
  • Have you found your answer. I have the same symptoms with the added eye sensitivity to the sunlight. I feel like a vampire. After several test and years of unrest, it was found that I have Autoimmune pancreatitus. What help me was to list all of my symptoms on a time line. The doctors looked at the what was similar and ruled out what was not. I at that time it was known that I had secondary Sjogrens' Syndrome, but to what was the question. The problem was ignore in the 10 years of my search; my chronic pancretitus. As simple as that was, it was ignored. More than once, especially when you don't drink is too much. More about the cause of my symptom with the sunlight - my body can't remove the posions that are place in the body with the sunlight. My body has major problems digesting minerals and vitamins from complex sources like acidity fruits (oranges, apples, strawberries), multi grains (wheat bread), wines (any alcohol), and sunlight (yes, it is a major source in our fuel (food) system. I even have problems with toothpaste and water that has fluoride. I have to say, I am relieve now since I know what to avoid. My quality of life is at 80% and I am not on any medication except for the seizures that only started because to the increase problems with the regulation of hormones and sugars, and even this med is not needed all the time. I say 80% because I wont be boating in the open sea, sunbathing, or hanging in Las Vegas fully (where I used to live for half of my life). My advise to you is to be fully cloth with lots of dark clothes ( I don't wear the dark items all the time, but it does help), wear a sunscreen with 70 spf or higher on any exposed skin, and stay in the shade when you are out, and most important - LIMIT YOUR EXPOSURE. I hope all is well. -M
    Anonymous 42789 Replies Flag this Response
  • I have dealt with this same thing for over 3 years. Been thru all the blood work and doctors with only one saying it was a sunlight allergy (very rare). I have noticed that I get post nasal drip before problems set in. Feels like I am going to die. Have had to black out all my windows to not get sick. Sunglasses don't help. Please, anyone post if you had this and have found answers. Things really got bad after I got overheated. Never been the same since. Just know that U are not alone.
    larryc 0 Replies
    • December 4, 2014
    • 07:49 PM
    • 0
    Flag this Response
  • I have the same syntoms and made the exact same exams and tests. It's a culprit. I reach the conclusion that I have a mild version is lupus ( it runs in the family). As my body can fight the physiological consequences of it, it never shows in the tests. So I'm grateful that at least it isn't a life treating hillness. All the best for you.
    Anonymous 1 Replies
    • October 28, 2015
    • 06:34 PM
    • 0
    Flag this Response
  • I began with your symptoms many years ago. I'm now extremely photosensitive. My disease is a mystery. Finally forced a diagnosis of Undifferentiated Autoimmune Disease. It is not only the brightness of the UV i.e. LED, it is the wavelength that doesn't agree with the body. That's why your nervous system is affected. It is LUPUS without the positive ANA. Your immune system is being controlled by all the new technology.. I've been on chemo meds & steroids, antiinflammatories & other drugs for 16 years No remission.
    Anonymous 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.