Sjogren’s Syndrome – Introduce yourself and meet others

I, too have been officially diagnosed with Sjögrens by a blood test orders by a rheumatologist. I have had this for many years and think it may have started when I was pregnant.
Does anyone else have a daytime sleep disorder as a part of Sjögrens? I was also diagnosed years ago with fibromyalgia, but now I’m thinking it is most likely a part of Sjögrens. So many weird symptoms - skin, brain fog, daytime sleep disorder(?), mouth, hands, feet, joints, eyes, hair loss, nausea, nose…etc.
I have now been falling. No idea how, but usually turning…like my balance leaves fit a moment.
Anyone else have that and think it’s related to Sjögrens?
~Jan

Hi i was just officially diagnosed via a lip biopsy as my bloodwork was negetive. my rheumotologist also believes i have fibro. i am unable to sleep through the night. i even took a tylenol PM. didnt work. i would like to learn more about this disease.

@eileenb1022, I think learning as much as you can about your condition is one of the best things you can do to help yourself. I'm not sure if you have seen the Sjögrens Foundation website but they have a wealth of information that you might find helpful.

--- Newly Diagnosed: https://sjogrens.org/living-with-sjogrens/newly-diagnosed

Have you discussed your problem sleeping through the night with your doctor or rheumatologist?

Hi John,
i was planning on joining the sjorgens foundation. i also go to the sjorgens advocate as well. no i havent talked to my rheumotologist about my sleeping problem yet. i probobly should.

I likely had this for a few years, but was newly diagnosed with a lip biopsy. I had a more severe flareup, which led to biopsy, but vasculitis and other signs did not come up in blood work. I am in more pain and have more severe and a wider range of symptoms than I expected. Rheumatologist seems reluctant to meet before our appointment in late January (made in June when she thought she had ruled out Sjogren's). Would like to know more about what to expect and perhaps find another provider in the NYC Metro area. How can I connect with other Sjogren's members?

I have had what the Brits would call "a turn-up for the books." Saw my rheumatologist two days ago and she has done a 180 on me. I told her I was on Rinvoq now (found something that covers Crohn's plus RA per her instruction.) And she reacted strongly against it. Says it is contraindicated for cancer patients under 2 yrs from remission. But she is the only health professional I have talked to who has heard that. Immediately called my GI doc and got me canceled. Also says that if I had any pain in my legs it is from compression in my back. Where-as before, I had at least some inflamatory artheritis. And I have had a Negative EMG about a year ago. Will refill my LDN, 'though. Now talks of it like she uses it regularly. (another switch.) I am going to get MRI of back she wants and go see pain specialist and we will see what they come up with. Am I in pain? Sure, what else is new. I could only do one sit-to-stand in PT today. Where-as before I could do at least 10. Will be seeing oncologist later this week to confir.

@cblue Are you living in the New York area currently? This website might have some leads on finding other patients:
https://www.sjogrensadvocate.com/
The Genetic an Rare Diseases department within NIH should be able to help you find a new rheumatologist:
https://rarediseases.info.nih.gov/
I hope this helps!

Thanks! I’ll check these leads out. Yes, I live in the Bronx, NYC Cheryl

I have had MCTD since 1996. Dry eyes are part of my life, but I use Systane and/or Pataday during the day: depends how gritty my eyes feel. Hydration in older age is a "thing"; constantly working on getting better at drinking enough water. I've just gotten over another salivary gland infection, too. I have had a lower left leg (calf) pain at night for 7 years. PT thought it might be part of hypermobility as most pain is where tendon attaches to tibia. But, my legs are sore to the touch a lot of the time. I've been using microwavable moist heat, edema massage (toes to torso) and leg stretches, including leaning against the wall, legs up. However. My pain doctor offered a "genticular nerve block", which refers to nerves along the knee and I've had the test injections and going for the block in November. People I've talked to say it can last a year or more. Always seems better when I've had a long walk during the day, but not dependable. EMG, MRI, etc have been normal.

I posted elsewhere I’m newly diagnosed I must’ve had this for two years, but was in the early stages though it described my Esophageal nervous so my treatment focus was on that and that’s a long story. I won’t bother everyone with. Auto immune diseases were not considered the cause. They proceeded another direction had several surgeries, I’m wondering if this flareup I’m having those who’ve had this longer does it ever go in remission?