Since my late teens I’ve been plagued by autoimmune disease complications but remained undiagnosed until I was 40 yrs old.
My most recent diagnosis is secondary Sjogren’s Syndrome. This means the disorder manifested as a result of my other autoimmune issues. Frequently these illnesses manifest as a cluster of three rather than a single disorder or syndrome. Below I’ve included information from the Mayo Clinic:
Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system often defined by its two most common symptoms — dry eyes and a dry mouth.
Sjogren’s syndrome often accompanies other autoimmune disorders, such as rheumatoid arthritis and lupus. In Sjogren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva…
The main symptoms of Sjogren’s syndrome are:
- Dry eyes. Your eyes may burn, itch or feel gritty — as if there’s sand in them.
- Dry mouth. Your mouth may feel like it’s full of cotton, making it difficult
to swallow or speak.
Sjogren’s syndrome patients may also experience one or more of the following:
- Joint pain, swelling and stiffness
- Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
- Skin rashes or dry skin
- Vaginal dryness
- Persistent dry cough
- Prolonged fatigue
Sjogren’s patients have a greater risk of lymphoma, serious eye complications related to dryness/eye ulcers, lung infections & Loss of lung expandability primary biliary cirrhosis, and a host of other “goodies”.
To share an example of the difference it makes in a daily routine, consider this:
Every day I have to swab moisturizing products in my nose & ears at regular intervals. I also carry oral moisture products to use 12-16 times a day. Even with diligent oral care and follow-up I’ve lost MULTIPLE teeth due to Sjogren’s. On average, I have to sneak away to use moisturizing eye drops every couple hours. I feel like a pack horse with all of this stuff in my bag or scrub pockets (when I work).
I also avoid fans like the plague because of the dryness. It drys my eyes & mouth immediately, so much that I can’t speak or blink. For the same reason, I avoid wind and always wear sunglasses due to light sensitivity. I’m saving up to get a special pair of glasses with a “seal” to lock out breezes and I can’t wait!! They actually look nice, which is a pleasant change from other options.
Overall, the treatment is the same as for other autoimmune diseases–immuno-suppression & symptom management. Currently, I’m on Methotrexate which has been a God-send. I’ll put up a side-effects post in the near future.
For anyone looking for support, check out my fave Sjogren’s group on yahoo. I can’t take any credit for starting or moderating the group but I’m SO grateful to whoever did!! These folks have been a ton of support. I also have links to other stuff on my ‘this ‘n that & resource pages.