Did you know that people with Sjogren’s can react to the sun and other sources of ultraviolet light? Apparently this is a known fact and mentioned on many, many sites about Sjogren's Syndrome but no one says why! I am still searching for the reason why the sun affects me adversely, computer screens irritate my eyes and some with Sjogren's get migraines from bright lights. Anyone know?
My Rheumy says it is because I have a vit. D deficiency. Doesn't make sence to me, since vit. D, I thought, was for bones. But my Rheumy is on the board at Sjogrens Foundation. Her name is Dr. Theresa Lawrence-Ford. So, I guess, she would know. Would love to hear what you find out, since I always keep an open mind. Also, why does it effect the eyes? Awesome question!!
ReplyDeleteThanks Sue, it was just intriguing me. My rheumy told me to take Vitamin D as well but when checked I did not have a deficiency. I live in Sydney which is quite sunny and while I don't sunbake, as such, I do get sun mostly every day. What about you?
ReplyDeleteI live in Atlanta, Georgia, and I get sun daily also. I don't sun bake, but do swim, for exercise. So I am somewhat tan, and still low on Vit. D. It is a topic that also intrigues me.
ReplyDeleteVery interesting... I have Lupus, migraines (weekly), and Sjogrens. I wear 50 spf sunscreen daily (no joke)and rarely will you find me in the sun between 10 - 2. I have found that I am super sensitive to bright lights, they can trigger a migraine attack for me. Actually, I have even turned off the fluoresent lights over my desk at work becuase they bother me so much.
ReplyDeleteI have a friend with Lupus and she has told me about this sensitivity to lights and sun. I have sjogren's and it is mainly my eyes that get affected.
DeleteAgree to light sensitivity. I actually vomit when under flurescent lights.
DeleteNancy, I get this too! no one else I have ever known has had this symptom, some around here think I am crazy. I seem so sensitive to many things. When i work at one place every Monday I fall asleep, so don't know what is going on there!? Also are you sensitive to smells?
DeleteI live in Seattle, WA in USA and I am sensitive to the sun. Even in 60-70 degree weather. I get nausea and dizzy. Here is what my rheumy says about sensitivity to the sun:
ReplyDelete"Photosensitivity has generally been attributed to UV ,not heat, e.g. http://www.ncbi.nlm.nih.gov/pubmed/12452858. Temperature effects are often attributed to vascular effects, which can mimic or in fact be the condition erythromelalgia (http://www.erythromelalgia.org/) or Raynaud’s (http://www.raynauds.org/) – these conditions most commonly affect the hands and feet but can have similar effects throughout the body."
Thanks for these great resources which I will follow up
ReplyDeleteAccording to this fact sheet (http://www.sjogrens.org/files/brochures/sun_sjogrens.pdf) from the Sjogrens Foundation (sjogrens.org):
ReplyDelete"Ultraviolet (UV) radiation
emitted from the sun and other light sources (such as some fluorescent lights) can alter
immune function and lead to an autoimmune response in the body and in the skin. "
I was gardening for a couple days since our weather got nice . Now my tongue burns . If I wore more sunscreen would this still happen ?.
ReplyDeleteWhen I travel to warm climate my tongue gets very bad
folks,
ReplyDeletewhen you have dry eyes - as the collective 'we' do - bingo - photophobia AKA dry eyes. sjogren's = dry eyes trust me; i know/have known for decades.
fabulous resource; ethical company. literally changed my life - THERASPECS. hart (founder) had episodic migraines; his wife, kerrie, had chronic migraines and daily headaches.
i have the kind that fit over my incredibly expensive, prescription progressive (can't see the line) bifocals for indoor wear. i can now read ALL sources - print, music and the computer screen. i also have the super dark over-the-prescription glasses for driving. i can wear one or the other literally all day as the frames are comfortable. so sensitive a bra bruises me; but theraspects i can wear 24/7 and do.
website is thereaspecscom. no, i'm not on the payroll just a happy camper; incredibly grateful customer. check them out. come with a 45-day money back guarantee.
best,
posting as a-non-y-mous because i'm a techno moron but actually am anne.
Wow! Seriously you can wear thereaspecs over your multifocals for the computer, fluro lights at work all day & print music!
DeleteThis is what I need as after 13 yrs feel I need to give up my office work, but can't due to hubby not being able to work with his adrenal fatigue.
I live in Australia and will check out these theraspecs.
Thank your so much for sharing this information!
I am in Seattle, WA USA and I do not go out in the sun, rarely. All because of one fateful trip to Oahu, HI in 2010. I decided to "tan" two days before we left Hawaii. I ended up with a horrible rash everywhere the sun was on my skin. The next day I spent it in my hotel room in bed or on the loo. It was terrible. The airplane ride home was painful and miserable.
ReplyDeleteAnd the kicker, I didn't even know I had Sjogren's then!
I also went to my eye Dr in 2005 complaining that the sun hurt my eyes and I couldn't stand any light. I preferred my workspace dark and my home. He didn't even bother to look into why. So I have had Sjogrens a very long time before my diagnosis in 2013.
Thanks for writing about this.
I want to ask has anyone ever gotten raw lips and sores on your tongue. ?
ReplyDeleteI do. My lips are chapped everyday. I cannot wear lipstick. It just cakes up around the shape of my lips. I have tried probably most brands. My tongue and gums feel like I ate something really spicy and hot. I am new to this Sjogrens Syndrome.
DeleteI do. My lips are chapped everyday. I cannot wear lipstick. It just cakes up around the shape of my lips. I have tried probably most brands. My tongue and gums feel like I ate something really spicy and hot. I am new to this Sjogrens Syndrome.
Deletecaffeine from coffee, tea, and chocolate will "chap" my lips from a dehydrating affect. I avoid all caffeine.
DeleteI have ever symptom of the Sjogrens Syndrome but my Doctor want listen to me my next visit I'm going to some how make him listen and do test to see why I'm so fatigued and feel like I have a low grade infection all the time , my whole body hurts all of it HELP!
ReplyDeleteThere is a biopsy that can be taken in the mouth. I'm having done in a few weeks. I'm sick and tired of the run around myself, and meds that do nothing but empty my bank acct. I hear you! Have you been tested for Lupus?
DeleteI'm trying to find similarities perhaps in beginning of autoimmune disorders.
ReplyDeletethings perhaps never thought about.
1. Childhood injuries
2. Repeated tonsillitis or step infections
3. Injuries to the back/ spine of any kind.
4. Diagnosis previous of cold or solar uticara.
5. Fibromyalgia
6. Swelling around ear/jawlinebefore Sjorgens diagnoses.
7. Blood clotting / Pos. For Factor V Leiden
8. Depression, treated with Lithium AT ANY TIME.
9. Unexplained red burning at first, then intense itching mosquito looking bites
10. Diagnosed with Lichen Sclerosis.
11.a cellulitis infection.
12. Whooping cough history
13. MRSA
14. Mono
15.boils
16.hairloss
17. Herpes
18.Bells Palsy episode
19.exposure to formaldehyde base insulation
20. Osteoarthritis
21. CKD
22. Pancreatitis
23. Ringing in ears.
24. Numbness fingers and or toes.
25. Been electrically shocked, even minorly.