Hello everyone! I have Sjogren’s, along with countless other diseases. I was wanting to know if anyone else with Sjogren’s has issues with their facial pores being clogged...to the point where the white head/pore literally stick out. I can see on each pore, even through my makeup, protruding from my face and I was wondering if anyone else experiences this. I thought it might be from the Sjogren’s, but I wasn’t sure. Also, is the sun EXTREMELY painful to anyone else? If I’m in the sun at all I become immediately flushed everywhere, I feel weak and my eyes hurt so bad; when I blink it feels like everything behind my eye is too short...like an overextended muscle or something. I hope that makes sense, I don’t really know how else to explain it. I also always feel like there’s so much pressure on my eyes and I have horrible balance that makes me run into walls as I’m walking by, especially in the morning. Anyone else?
Sjogren’s- Pores & Sun Sensitivity - Sjogren's Support
Sjogren’s- Pores & Sun Sensitivity
Yes to all the above, I’m sorry to say. I have always loved sitting out but now have to wait until late afternoon. My poor scalp (due to Sjogren’s hair loss) burns and my skin feels like it is on fire ! Are you being checked regularly ? I wasn’t until a year ago? Are you on Hydroxychloroquine?
Cas70- Thanks for the reply. I have had pain and headaches since I was about 15-16, and I’m 33 now. Early on I was diagnosed with fibromyalgia and chronic headaches. My pain and fatigue continued to worsen and spread over the years, but it was either no one could find anything wrong or they didn’t believe me. In 2016 a doctor ran some test and found I was ANA positive and positive for Sjogren’s. She sent me to a specialist who said I wasn’t manifesting any symptoms so she ruled it a false positive (I loathe the “false positive” remark). Again, everything worsened and spread and between the ages of 30-32 I received the following diagnoses: psoriatic arthritis and psoriatic spondylitis/spondylosis, Trigeminal Neuralgia, Raynaud’s, and several others, but my Sjogren’s test came back negative. I started seeing a dry eye specialist who said my symptoms mirrored those of her Sjogren’s patients and she was going to treat me as though I had the diagnoses. I just saw another specialist that said bc of my symptoms and my one positive test, she was officially diagnosing me with Sjogren’s. My multiple diagnosis makes it so difficult bc most people with Psoriatic Arthritis and Psoriasis love the summer time, whereas I profoundly fear it. It’s beyond painful for me and I avoid the outside at all costs (I call myself a vampire lol). I never would wish any of my experiences on another person, but it’s very comforting to know that these symptoms I’ve experienced for years align with one of my diagnoses. I have not tried Hydroxychloroquine, but I will definitely keep it in mind. Have you found anything that helps with the protruding pores from dry skin? Thanks so much for your reply!!!
I haven’t found a remedy I just use all Nivea products as my skin is awful now. I am so sorry for you, at least I didn’t get really bad until I was 69 . My tests came back negative and the doctor was so vague, it was a lovely nurse who did my scalp biopsy (I had an awful sore from scratching) rang and said I had Discoid
Lupus and Sjogren’s. It took months to get my medication. Chat to lady who said she would treat you for Sjogren’s. It is so difficult to get a response from 99% of doctors I have found over last 5 years. Ask to try Hydroxychloroquine- it has helped me - all your different diagnoses come under auto immune problems.
Of course, you could ask for a referral to a Dermatologist- they must know a remedy?
Good luck
PS. Since you very pretty young, if you’re considering hydroxychloroquine please read the UK Royal College of Opthamology’s statement and recommendations on hydroxychloroquine for use after 15 to 20 years.
Or maybe, if a doctor prescribes it for you, you can try it but know that you’ll probably have to switch to something else down the road. At that point hopefully research will be and offer more options. (Dear Father, hear our prayers! 
I am seeing a dermatologist next week. What does your discoid Lupus look like? I have a horrible spot on my scalp at the nape of my neck that is really bad due to me scratching it, but I always thought it was my Psoriasis. Are they easy to distinguish from one another?
Have you been checked for antiphospholipid syndrome? It can run in tandem with Sjögren’s syndrome and lupus. ( a positive ANA and raynauds warrants checking.)
I have a severe case of APS, along with Sjögren’s, SCLE , Rheum Arth, and so on.
These auto immune conditions just tag on to each other- they are all under the same umbrella.
If you have migraines, have had miscarriages, low thyroid- you should have the Antiphospholipid antibodies checked.
I also sometimes get a weird, itchy rash on my elbows, usually during the summer. No one has ever determined the cause. It’s not Psoriasis; it’s made up of small white/flesh colored bumps that sometimes turn red. It will be there for a week to a month (give or take, depending on severity), then gradually dissipate. Have you ever had anything similar?
I have that same condition on my elbows. I've found that a lotion called Amlactin helps when it flares up. I contains Alpha-Hydroxy acid ph balanced for the skin. My husband was using it for a similar condition on his face which is not recommended. It's kind of strong.
That reminds me that I've attributed some of my symptoms to high acid foods which I now avoid mostly. Gotta have a taco once in awhile. I would encourage you to assess your diet. Perhaps you might try the Alkaline water. I am gluten-free as well which definitely lowered my levels of inflammation.
We have a few Dry Eye MD specialists n Minnesota. Mine has been very helpful. I'm taking fish oil supplements, using a humidifier and/or diffuser at night, using an eye lid wash (Thera-Tears) and apply warm, moist compresses when my eyes bother me.
Yes, similar. Super irritable skin. Cannot wear make up nor many products. Anything w fragrance. Can feel itchy, unwell from sun. I would mention all that you said to your rheumatology nurse and/or dr. Sun sensitivity can mean a few things.
In the same boat with make up and fragrance . Also at the moment skin very itchy on my forearms in particular have scratched so much it bleeds driving me mad . Ice packs help and constantly having to use Eumovate ointment . Eyes also extra dry fed up
Yes. Weirdly, of all the itchy places on my body, my forearms are the absolute most frequent! I looked up your cream as I wondered if it was similar to mine, which it is. Did your doctor tell you these precautions when she or he prescribed it? see link:
nhsborders.scot.nhs.uk/Bord....
I do remember my dr. saying that it could thin the skin over time but I didn’t think I was having an issue. Then two weeks ago I barely run something on my arm, it was a plastic wallet; the corner scratched my arm lightly. A seemingly superficial scratch caused a lot of bleeding. Now I’m wondering if I need to go back and get something milder for better days because I’ve been using this for probably five years. I use it most days. Well, every day I use it on my body in multiple places, but not always on my arm/s every day. Some days I have to reapply to one spot six or eight times!
Re: treatment for my eyes — I’ve given up on eye drops. For about a year now the only thing I get is Xalin ointment. I know generally people only use it at night but I use it through the day as well Nothing else lasts and it’s one of the few which doesn’t cause a burning sensation. I always rinse my eyes with fresh water before I reapply or else (what I think are) little salt crystals/minerals irritate my eyes when I re-apply.
I empathise with how it is wearying the constancy of the discomfort.
Harmony2
No they didn’t tell me about skin thinning . Steroids are an evil necessity . It is the only thing that stops the itch . The eyes like yours are a night mare . I have tried so many ointments I tend to use clinitas in the day and a thicker ointment at night . Some really irritate so have stuck with the 2 . When really bad I sometimes apply every half hr . It is exhausting then dark glasses cut to photosensitivity . Such a pain . Warm compresses and steam helps . This syndrome is not nice . It is really helpful when you can share experiences . I hope you are ok at the moment . My flares up at odd times joints skin and every other orifice lol
Hello,
Yes, I've also experienced some of these symptoms, including the pressure behind the eyes which is terrifying. If possible, see an eye specialist every 6 months and make sure you use strong eye drops regularly to moisturise the eye (I use Hyloconfort Plus but am based in France and not sure if they exist where you are) and try Xalin cream at night which really works for me. Before, I was woken up several times a night with stabbing pain in my eyes.
Re the sun, I experienced exactly the same symptoms last year in Wales, of all places, before I knew I had Sjögrens. Wear a wide-brimmed hat, apply factor 50, or better still, stay out of the sun at all times at the risk of resembling a vampire. Take vitamin D supplements in the winter and see a dermatologist once a year.
Hydroxycholoroquine, marketed as Plaquenil, can be helpful in severe cases but be careful as it can damage the retina and you will need an eye test every six months minimum to check that there is nothing wrong. My doctors have so far refused to prescribe it for me as they esteem that my case is not serious enough...
Re Fibromyalgia, it's a nuisance as it covers a multitude of sins and, in my case, considerably slowed down the correct diagnosis. Some doctors even told me that they didn't believe in Fibromyalgia at all, including a rheumatologist...It can be a convenient catch-all label for people (usually women) with a variety of conditions which are difficult to diagnose and treat.
For Sjögrens, you could have a lip biopsy; this was how mine was diagnosed, although the blood tests came back negative. To be honest, from what I understand, they don't really know how to treat this condition and can only treat the effects, such as dryness, locally. By the way, for dry skin try Laroche Posay's Lipikar Baume AP + M and Yes, Yes, Yes, do a great natural vaginal moisturiser; both these have helped me.
Otherwise, it seems to be a case of living with the condition and trying to limit the worst effects. There are also various anti-depressants which can help with peripheral neuropathy, but they all have side effects and should be used with caution. Concerning natural remedies, Bach Flowers really help me, as well as a sugar and gluten free diet. I don't drink coffee or alcohol either.
This is all just my personal experience and I am 20 years older than you. Also, you seem to have some other serious conditions to contend with. Not sure how things work in the UK these days, but would it be possible for you to see a specialist of General Medicine who could assess you fully and treat you holistically??
Oh yes, and psychotherapy is essential to avoid getting depressed and discouraged...
All best
North Atlantic
Peripheral neuropathy ? I currently seem to have numbness in my toes . At night they feel tingly not sure if hot or cold you know when you touch ice and it burns . Wearing Bedsocks even in the summer . Sorry to bombard you but this condition seems so complicated.
Hello, only just seen your post so don't know whether you are on this site. I experience all the issues you describe. Skin awful (haven't found anything that helps) plus awful not to be able to go out in the sun. Sunlight really painful especially on legs, even my scalp on a cool day if the sun is out. It took many years for my Sjogren's diagnosis, not being believed etc. I am enjoying this time of year. Hope you are doing alright.
Update: Thank you everyone for your replies. I wanted to let everyone know that I have found doing an at-home peel (AHA & BHA) every week (give or take) helps to remove the dead skin build up on my face. I use a product from Sephora by the brand The Ordinary and it is only $7.20/ bottle and lasts forever! Removing all of the dead skin from my face also seems to allow it to absorb moisture better!
Have you tried asking your doctor about this? I'm not pumping it up, but I think that at least it's worth checking the tests if it causes you severe discomfort. I remember myself when I had skin problems and how often I cried, and I am very sorry for you. If you still have no problems with your health, you can write to me about your skincare and how you cope with this problem. I've tried a vast amount of tools and reread a considerable number of articles like nuraafra.com/fix-clogged-po..., and so on. In this case, everyone should choose their care and analyze the condition of their skin, but good advice has never bothered anyone
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