Does anyone that has be diagnosed with Sjogren’s have trouble with light sensitivity? This is a huge issue for me and I would appreciate any suggestions.
It is common for eyes to be sensitive to light. Other than using sunglasses- ones with UV protection, using glasses which automatically darken with light changes, and you can get polarised glasses which give extra glare protection, and hats I’m not sure if there’s anything else I can suggest. Maybe some other members might have other tips!
Skin problems in sunlight are quite a common issue too, with rashes etc.- was it your eyes you’re sensitive with or skin as well?
When my eyes are dryer they are also more sensitive to light. This may well be something that improves for you, as you get a better handle on your dry eye.
Inflammation on it’s own can also cause one to be more light sensitive. There are times that I wear sunglasses and a hat inside too.
I have not been on the site for over a year but I still have Sjogren’s. I too experience extreme sensitivity to Sun light very often. Something that I had never had before. And skin reaction to exposure to the Sun light(rashes etc.). I have tried to take plaquenil (generic) but it makes my already high bp go even higher. I was wondering if anyone else has had this reaction to this med. and if there is some other medication that I could try? Thanks for your replies.
You’ll need to discuss this with your doctor. I’ve heard of people sometimes qualifying for biologics, but you’d need to do some research into this question.
My R. Doctor simply said to stop taking planqinel and take aspirin for the pains that accompany Sjorgren’s. My first doctor retired and now I have been given this person who really does not seem very interested in my case. He said the inflamation factors in my blood test just taken one week before I saw him where way down. I went home and almost immediately had a flare up that very week that I am hopefully I’m on the tail end of now. That began four weeks ago. I know it’s time to search for a new Rheumatologist. Thanks Stoney for your input.
I feel you… I’ve recently realized I can’t see enough at night to be able to drive. My sensitivity to light has increased. This is frustrating. Unfortunately, it’s part of the fibromyalgia caused by SS.
You said that the light sensitivity is part of the fibromyalgia caused by the Sjogrens. Can you explain? One doesn’t cause the other, although clearly someone can have both.
As per my neurologist, my fibromyalgia is caused by the SS.
I have to tell you, this is just a really odd statement. I did some online research to see if I could find anything that specifically stated it. I couldn’t find anything. There certainly is a link, and there is a high percentage of people suffering from Sjogren’s who also suffer from fibromyalgia, approx. 40-50%. That said, this is very different than causation. Personally, I would want to see research stating that fibromyalgia can be caused by Sjogren’s. Sometimes doctors, much like anyone, will say things without really thinking. You take it at it’s word, because they’re the doctor. But when you push a little bit, as I have, it’s not what it initially seemed to be.
Thank you! What he said is that I have all the problems and symptoms of
fibromyalgia, except mine are caused by SS. Sorry, it’s hard to explain in
English, it’s not my first language.
Okay. That makes SO much more sense. Thank you!
Hello, I was diagnosed with Sjogren’s about 5 years ago, I was originally diagnosed with Lupus 10 years ago, but my Rheumatologist re-classified it as sjogren’s. My symptoms are dry eyes and dry mouth. I am also on resuvo to curb the effects of RA. As of now the dry eye symptoms are the most difficult to deal with.
My eyes are very sensitive to the light. It makes it very difficult to drive in the bright sunlight, and sometimes just staring at a movie screen is impossible. I am almost always squinting, it is very uncomfortable and definitely embarrassing (people always seeing me squinting and in distress).
I have used restasis (not really successful)
Basically every kind of OTC eye drop available (Refresh Liquigel I find works the best)
Tried Xiidra and it really hurt my eyes like nothing has ever hurt before.
I have my tear ducts plugged.
I take Hydroxycloroquin and pilocarpine every day (prescription)
I have very good humidifiers in my house (this helps a little bit I think)
If anyone has any suggestions or information that they think may help me I would greatly appreciate it. I have not tried any DIETARY strategies, if someone had had success in that department I would love to hear your ideas. I look forward to using and helping this community, I really need to start being more proactive with this disease. Thanks you in advance for any help.
I just ordered new glasses with a special yellow tint to them, because the light sensitivity, especially driving at night, has become a real problem. They will also have anti-glare coating. I’m looking forward to getting them and seeing how they work for me.
I had to get a dimmer installed in my office at work. The halogen lights were torture and some days I couldn’t even turn them on it hurt so bad. I have had migraines for 20 years but in the past 3 years the light sensitivity has gotten much worse. I have 20% tint on my vehicle and still need my dark sunglasses. Headlights at night hurt also, I swear everyone has their brights on but it is just my eyes being ultra sensitive, I am thinking about getting the “migraine” glasses they help with fluorescent lights, computer screens etc. My eye doctor said it would be helpful and to get the goggles to wear while outside in the yard to keep them from drying out. The window tint has definitely helped while driving, I am considering it for our windows in our house also. I hope you find some relief.
Have you noticed an improvement with the special tint? I was thinking of getting the yellow tint for driving at night.
It’s a definite improvement! Driving at night in a low car with millions of suv’s out there is just way too bright for me
I have light issues with migraines – don’t fall into the expensive hype of “migraine” glasses or the light therapy glasses. They’re just tinted lenses. The best (best being cheapest) place I found for all kinds of tinting is zennioptical.com
A complete pair of non-tinted prescription glasses starts at $6.95 plus shipping and you can usually score a free shipping coupon by checking retialmenot.com
I have found amber tinting works best for me both on the computer at work and night driving. I’ve also found not using a commercial desk light really helps. I would say used home style lighting or full spectrum lighting whenever possible.
I have chronic migraine and sjogrens. I work at a jewelry store and the lighting was a real problem. I had even thought about cutting my hours to avoid the headache I got pretty much every day. My Neuro recommended I try the migraine glasses. They are not yellow but a soft rose color tint. And they have given me my life back. I can now work. I wear them inside and out. I still get headaches triggered by weather but light sensitivity is not much of an issue for me with these glasses. They cost me about a hundred dollars but I will never regret this purchase. I have a cabinet full of meds that I paid for that didn’t work. These glasses really helped me. Missing work cost me more!
That’s really great to hear!