I don't have any answers for you but can only tell you that I'm the same way. I think Sjogren's and Lupus are overlapping diseases and even if you are not diagnosed with Lupus it's a possibility it can develop and sun is not good for Lupus so probably isn't for Sjogren's either. Wear your sunscreen and get a good hat. Good luck.

I know that the sun dries us out and it's easier to burn. I also believe that the medicine plaquinil makes tolerance to the sun worse.

I do know that even if I drive somewhere on a sunny day my cheeks are bright red. Doc said to wear sun block -any- time I am out doors, even if it's just to go get the mail.

I don't feel too great if I am out in the sunshine too long and get too hot.

Hi Everyone, I am new to this support group. I am aslo on the MCTD support group. I have MCTD, SLE, Discoid Lupus and just last week diagnosed with sjogrens. I don't know a lot about it still. Was reading this discussion about sun, I know for me with SLE and discoid lupus I am not allowed in the sun at all!!! doc tells me if i burn myself bad it could kill me. When I do go out I am suppost to wear 80+ sunblock, a big rim hat, and full clothing (that doensn't happen always). So being that I don't know that much about sjogrens, can anyone help me to understand better. It is soooooo hard to tell what is what with all the different diseases....I just can't keep them all straight. :o)

Thank you all,
paige

Sjogren's can be aot like SLE. I'd recommending readin The Sjogren's Syndrome Survival Guide by Teri P., Ph.D. Rumpf

The New Sjogren's Syndrome Handbook (Sjogrens Syndrome Foundation) by Daniel J. Wallace

Thank you, I will look into those books. I see everyone talking about swollen glands behind the jaw...how do you know? For the last about 4 months I have been getting this painful swollen feeling in my throat, it hurts and feels like something is stuck in there...is that what you are all talking about? I find myself drinking more all day and thru the night now, hard to swallow, itching eyes crap in them all the time and tooth pain off and on.......I also read that some of you have chest pain? Is that part of sjogrens? I have bad chest pains everyday almost, to the point it feels like someone is stabbing me it takes a while for it to go away and sometimes it is followed by acid reflux and heartburn...sometimes just the sharp stabbing pain. Any of you go thru this....it really scares me!!!

thanks for the help
paige

If you chest pain is followed by reflux, heartburn, that is the most likely cause. You prabably know SLE also causes chest pain which could be serious so you should definitely mention it to your doctor. I just got a referral to a Cardiologist myself because I have chest pain off an on. I can only speak for myself and it seams to me I have a swollen neck and it hurts right under my ears. But I also have problems with my muscles in my neck and body. Have you seen an eye doctor. I will be on Restasis for life the only FDA approved treatment for dry eyes, Evocax for dry mouth, my teeth are rotting at the gum line, and Plaquinel for the immune system. I also have ductal plugs in my tear ducts. My eyes cry in the wind and cold, burn and are very light sensitive. We are suppose to drink a lot of water so it's good that you do. Are you on medication for the Lupus or Sjogren's?

Ok so this is the weird part...my doctor diagnosed me last wednesday with sjogrens..I was already on Plaquenil and steroids but my doctor did not tell me that I need to go and see an eye doctor, teeth troubles, etc...just pretty much diagnosed me. I have pleurocy due to my Lupus, I told my doctor, he did a chest xray but because at the time it did not show anything, he is doing nothing right now. At the time of the xray I had been on steroids for a week (don't know if that makes a difference) The chest pains scare me cause most of the time they are not followed by the acid or heartburn.

Thank you so much for your help. Hope you to be well.

hugs,
paige

I think it is the plaquenil that makes the tolerance to sun worst and also the drying effect of sjogrens I don't know about other people but I never seem to sweat I just get very hot and then feel very sickly . I have sjogrens and mctd I did see sle mentioned with a query on 1 of my doctors notes but noone told me I had that .I must ask about it.
Regards the chest pain I had really bad chest pain and acid reflux when I was taking my omeprazole since they changed me to Nexium
I don't get the chest pain and hardly ever get the reflux .My doc told me it is because part of the omeprazole does not have an active component and the Nexium does.For me it is the pain in my ribs around the back that really hurts

If you are taking Plaquinil, you should see your eye doctor. It can damage the (sp?) perf. vision and they need to keep an eye one it. I have visual field tests done about every 6 months.

Chest pains can be caused by IBS if you're having the acid reflux and stomach symptoms. I know that my fibromyalgia and Sjs symptoms are very similar which is why it took longer for the dx of Sjs.

Take Care

My PCP told me that the chest pains are just another place that my Rheumatoid Arthritis has affect me. She described my ribcage as having cartilage that is also being destroyed by the SJS. I suppose there might be something to this, does cartilage have moisture to rob like my joints?. All I know is it is very painful sometimes even scary, but not Cardiac related. (yea) I keep meaning to mention this to my Rheumy, but forget to do so. I'd like him to confirm this as the cause so I can back up my suggestion that this may be your problem too!

It's amazing how many people with Sjogrens say they have pain in the chest/rib area. When I first started to get real symptoms of Sjogrens I'd get a feeling like my ribs and chest were sprained. I still get it from time to time. I've had all the cardiac tests and have been told all is fine cardiac and pulmomary wise. So far it's been proven to be musculoskeletal pain that can be horrible at times but not fatal. It's called costochondritis and why we with Sjogrens get it so much I don't know. Feel better soon!

The sun or heat even wipes me right out. I have lupus and mctd sjs is one of them. Yes chostochronditis is very common. hugs

I am extemely sensitive to the sun. My rheumy and dermatologist said to wear 80+ sunblock which I do now. I got my windows tinted darker than allowed to keep the sun off of me driving. The doctor wrote a letter that I have to keep in my car in case I get pulled over by police.

Some of the medicine causes problems and easy burning as well as our condition. I think lupus causes more problems with the rashes from the sun than sjogrens but I could be wrong.

Make sure you wear plenty of sunblock if you are outside or in the car. I also wear a huge hat if I go outside.

Hugs,
Kim

When my Dr. told me to avoid the sun he talked mostly of the skin rashes that can happen. I recently had a really bad flair up that I was blaiming on something else. I think my day of blueberry picking did me in. I wore sunscreen and a hat but probably didn't pay as much attention to the sun's affects. My Dr. said that many autoimmune diseases are effected by the sun.
Isn't it cruel that one of the things we all can use to ease the pains in the joints (like sitting in the warm sun) is what makes it worse?
My Dr. told me that once I start the Paquinal that I will be LESS sensitive to the sun. I'm hoping that's the case.
I'm thankful for this group as I'm finding new symptoms weekly and it is helping my state of mind to know that I'm not alone.

Thanks for the information, I just read up on it and I believe you are correct ! The pain described in the articles is pretty similar to what I experience. We sure have some strange occurrences in our bodies related to our SJS.