Sjogren’s Syndrome – Introduce yourself and meet others

Good Morning,
I dont know for sure if i have sjorgens for sure yet but i think there is a high probobility. i was fortunate my sinus doctor suspected it due to my extremely dry mouth. that was my main symptom at the time he referred me to rheumotology. now though i have somewhat dry eyes and not sure if this is connected but sore throat, sometimes feeling my whole throat is swollen in addition to upper back pain,neck and shoulder pain. and iwake up too tired i just want to lay down i also have low and dropping b12(which i now get injections) swell as low ferritan and iron. i know those can cause fatigue too. i take iron and folic acid pills in addition to the injections but still just so so tired. i was fortunate i gotmy rheumotology appointment moved up from mid feb to nov 21. i did that the other day. i was in for allergy testing which i was praying was the cause of my symptoms as yrs ago i had really bad allergies now all of those are gone as it turns out it said i was only allergic to mold so when i was leaving allergy the rheumotology desk was right next to it and i begged if the had a earlier opening and they did. i was so worried cause for months i was telling myself oh this is all allergy related ad now i know its not so im worried also i know with sjorgens itcan effect your teeth. i know it hasnt helped i have ignoredgoing to a dentist for yrs out of fear and with everything else health wise goingon i felt i didnt have the time or extra month yrs ago i was told i had quite a bit of many cavities as well as a crown that lost its filling. the other night friday night had the worst tooth pain ever next morning that area and that side of my face was so sore and swollen i called a dentist, 3 of them and left messages. hoping one calls me back today. just feels like this morning. everything hurts

Good day,
I was officially diagnosed with Sjogrens back in 2015. However, looking back all of my symptoms began when I was pregnant with my son in 1995. All during the time between the birth of my son and my diagnosis, I kept telling my doctors that something wasn't right and my dentists kept telling me i wasn't taking care of my teeth properly. Shifting the blame to the other. In any case, I was right. it was a medical issue that caused it. Its frustrating when they don't listen. After I had my daughter in 2005I wound up having all my teeth removed and have dentures. I make sure that I inform both my kids' dentists know that I have Sjogrens and that they put that information in their files so they can keep a lookout for any of the signs. Even now, stemming from my Sjogrens I developed 3 other autoimmune disorders - leukocytoclastic vasculitis, rhuematoid arthritis, and cryoglobulinemia (rare). and they all stem from Sjogrens.

I had Sjogren like illness about 10 years ago as part of a type of inflammatory disease of my GI tract. All testing was negative, but the conclusion was that it was autoimmune.
The worst part was the damage to my teeth. My upper front teeth were almost see through, due to lack of saliva. I got crowns for all. My mouth was extremely dry, painful salivary glands, red bumps inside my mouth. It resolved after treatment with immunosuppressants. Afterwards, I actually started drooling without reason.
The point I want to make, @eileenb1022 , hurry up to do all dental work you need and ask the dentist how often you need to be checked. You can save your teeth, I believe.

I have had Sjogren's since the 90s...suffered mostly with disabling pain and fatigue...and in October 2019 I started taking low dose naltrexone and it has taken away about 75% of the pain I was having and improved my fatigue quite significantly.

Risperidone has actually elevated my Prolactin levels so high that it stopped my period and made my breasts lactate for two years. We did not figure out the cause of the elevated Prolactin until a few days ago, after my MRI results came back negative on a pituitary gland tumor and realized that it was my anti psychotic Risperidone causing the elevated levels so we immediately made a 3 week plan to taper off, but carefully- it being an antipsychotic and all.

So sorry

Hi, I’m 64, and was officially diagnosed with Sjogren’s when I was 31. I had a baby at 29, and the symptoms really started after his birth.

I recently had all my teeth pulled and got dentures. I must have spent at least $20,000 over the years on them trying to save them.

I’m 2013 , I finally threw in the towel, and left a job I loved to go on disability. The fatigue made it impossible for me to work any more. I now receive SSDI.

I’ve had other weird problems over the years that are probably related to my autoimmune condition. Most recently, I have had a rash for 8 months straight. The itching was driving me crazy! I was recently started on Naltrexone, and that seems to help.

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 have awful joint pain and I’m taking opiates right now. I use ice and heat as well. My r arm has calcific tendonosis!