Living With Sjogren’s Syndrome
What is Sjogren’s Syndrome?
Sjogren’s Syndrome (pronounced show-grins) is an autoimmune disease. As with other autoimmune diseases, the body’s immune system attacks healthy cells. The cells attacked in Sjogren’s are the moisture producing glands in the body. Sjogren’s can either be primary or secondary. When there are no other illnesses associated with it, it is know as primary. Secondary is when there is presence of other autoimmune diseases such as lupus and rheumatoid arthritis. Although I am not a doctor, I have been living with secondary Sjogren’s for the last 35 year.
Symptoms of Sjogren’s
Dry eyes and dry mouth are the most common symptoms of Sjogren’s. For me, dry eyes have always been my worst symptom. Many days I look like I have pink eye when it is really just the extreme inflammation irritating my eyes. By the end of the day it is all I can do to keep my eyes open. In addition, other symptoms associated with the disease include joint pain, digestive problems, vaginal dryness and extreme fatigue. And lucky me, I have all of these symptoms. Fortunately the extreme fatigue comes and goes. If you have never experienced extreme fatigue, it is like trying to function with a bad case of the flu. Furthermore, every ounce of your body hurts and the weakness is overwhelming.
Treatments for Sjogren’s
Although there isn’t a cure for Sjogren’s there are treatments to help with the symptoms. Several prescription medicines are available to help with dryness. Restasis is a prescription eye drop. Personally this made my dry eyes worse and I can’t use it. There is also a prescription called Salagen. It is a pill which helps with dryness of the mouth and eyes. This is a prescription I use but it seems to be hit and miss as to whether or not it works. Using night time eye lubricant and moisturizing eye drops such as TheraTears can definitely help. For dry mouth, I always have a drink such as water or herbal tea nearby.
While the autoimmune diseases I have sometimes limit my capabilities, I consider myself fortunate to be able to get up every day and live a meaningful life. This young lady at “Life According to Kenz” says it well:
Finally, you can read more about Sjogren’s at Mayo Clinic.
My Opthalmology doctor put silicone plugs into my tear ducts to prevent my tears from draining away. They felt scratching the first two weeks, but then I adjusted to them. I don’t feel them anymore. My eyes are more comfortable during the day now.
I use Xylimelts in my mouth while I sleep to keep my mouth moist. You wet them with saliva and stick the flat side (the brown side) into a tooth on each side of the mouth. They melt and provide moisture. I wake up in the morning and don’t feel like I have sand in my mouth.
There are supplements that help with Sjogren’s. I don’t recall all of them because I’m taking supplements to put my viral infection into remission (a water-borne enterovirus caused all of my autoimmune disorders).
Whatever you do….. do NOT take collagen in your smoothie or as a tablet because it makes the pain Increase. You already make excess collagen which gives you pain and adding collagen to your diet is going to make you feel like you will pass out from the pain. I learned this the hard way. I didn’t know.
I eliminated sugar and fake sugars from my diet and I’m now much more comfortable. Yeah, it was a rough adjustment, but my pain is down. I get my sugar from fresh fruit and dried fruit (with no added sugar). Avoid craisins, dehydrated cranberries, because they have added sugar.
I use turmeric a lot to take down inflammation. I find it helpful. I cook with it and drink it in a tea. I cook curries with fresh vegetables and use turmeric in the curry.
Thanks for your information! My doctor mentioned the tear duct plugs but I haven’t done that yet. I also have eliminated sugar and take turmeric and yes they both have helped in my case.
Thank you for this Post. I also have an Autoimmune Problem. I have problems with my eyes too, which sounds a lot like this. I will look it up and read more.
I really appreciate your Post, I would never have known about this Disease. Donna
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I’ve been a subscriber for a while now but I never looked at any of your blogs because I just don’t care for the way the email I get is set up and I never know where to go once I get in here. I decided to play with it today and picked your name today and entered the blog to find some really cute and crafty things and I have now learned of your autoimmune issues. Well I myself live with fibromyalgia but I also have symptoms of lupus. I have rheumatoid arthritis and before having my knees replaced, osteo arthritis. It’s horrible at time but for the most part I can keep everything under control. Unfortunately it never goes completely away so we do what we must to keep going. I would like to know exactly what kind of a doctor you found that deals with all of this?. Yeah I have a pain management doctor but I don’t really know if they go in depth with testing..something I will need to find out. Anyway after reading about the Sjogren Syndrome, I might actually have that. I just am not sure how to go about finding the kind of dr. That does that sort of thing. Anyway, I’m praying for you that you heal as much as possible and can live your life easily! It certainly is a challenge!
Thanks for sharing this! It REALLY encouraged me today!