Sjogren’s Syndrome – Introduce yourself and meet others

This has been a journey. went from 146 lbs. in January 2022 to a current wt. of 112. This started with Endoscopy and colonoscopy showing Gastroparesis, gastritis and a SIBO infection. My GI tested me for endocrine tumors which were negative. PCP group was just sitting by with no idea except that I came to the ER too often. GI suggested I get a long term + ANA investigated. I did and some labs were abnormal. I had no idea that my Sjogren ANT was negative. Meanwhile, after several falls and night sweats with a crazy TSH going from5, to 15 to 34, I go to a local rehab hospital with dehydration and weakness. The rheumatologist call me to DX me with Sjogren. I am placed on Plaquenil and for unmentioned reasons I change rheumatology. This group is concerned about how frail I am and my neurological symptoms. EMG shows no big deal except a bad R shoulder, now known to be calcific tendononis. Three ER visits later for eye infections, I off Plaquenil and my sight is decreased quite a bit. I rely upon Sjogren foundation and find a rheumatologist at U. OF Pa. Currently, I am scheduled for a lip biopsy on Dec. 29th. I have had home OT, PT and speech therapy. Pain management manages my pain. My depression is quite awful. I wish I had the money to go to Mayo Clinic where a team works together. I have been a nurse since 1974 and that was what I was taught. I would appreciate feedback on this story and my illness. My. name is simply Lucy.

Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you to a few other members who also have Sjogren's. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I'm confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG - why type of pain do you experience and what methods or treatment do you use to try to manage it?

This has been a journey. went from 146 lbs. in January 2022 to a current wt. of 112. This started with Endoscopy and colonoscopy showing Gastroparesis, gastritis and a SIBO infection. My GI tested me for endocrine tumors which were negative. PCP group was just sitting by with no idea except that I came to the ER too often. GI suggested I get a long term + ANA investigated. I did and some labs were abnormal. I had no idea that my Sjogren ANT was negative. Meanwhile, after several falls and night sweats with a crazy TSH going from5, to 15 to 34, I go to a local rehab hospital with dehydration and weakness. The rheumatologist call me to DX me with Sjogren. I am placed on Plaquenil and for unmentioned reasons I change rheumatology. This group is concerned about how frail I am and my neurological symptoms. EMG shows no big deal except a bad R shoulder, now known to be calcific tendononis. Three ER visits later for eye infections, I off Plaquenil and my sight is decreased quite a bit. I rely upon Sjogren foundation and find a rheumatologist at U. OF Pa. Currently, I am scheduled for a lip biopsy on Dec. 29th. I have had home OT, PT and speech therapy. Pain management manages my pain. My depression is quite awful. I wish I had the money to go to Mayo Clinic where a team works together. I have been a nurse since 1974 and that was what I was taught. I would appreciate feedback on this story and my illness. My. name is simply Lucy.

@lucyhipp Hello Lucy, welcome. I'm sorry for all of your struggles. Fighting depression from constant health problems is awful. Do you, or have you worked with a psychologist or cognitive behavioral therapist?

You mention wanting to go to Mayo Clinic and work with a team that works together. That was my fantasy at one point also. Have you considered applying? It can't hurt. Mayo does accept many insurances including medicare. Here is a link with details:

Insurance types accepted at Mayo Clinic-
- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance

And here is a link in case you want to apply or even only ask questions:

Mayo Clinic Application-

- http://mayocl.in/1mtmR63

My experience at Mayo has been with their Pain Management Rehabilitation Center. It's an all inclusive 3 week rehabilitation program that helps folks get stronger physically, emotionally, behaviorally, and works at reducing or eliminating chemicals. That's the way I ended up working with a Mayo team.

What are some of the ways you currently manage depression? Do you have a good support system of friends and family?

I’m so deeply sorry. How is your sleep?

I’m so deeply sorry. How is your sleep?

Decent because I take several meds that sedate. Neurontin was the most effective because I no longer wake up with arm pain.