Sjögren’s Syndrome: how do you manage the symptoms?

No mine was open gallbladder. I'm trying to figure out the surgical process. Some mention clips some do not
My surgery was Preformed by a resident. Just making sure if there to be there or not (surgery was in 87 I belive)

Hello. My mom is currently in the hospital, not Mayo; although we would love her to get transferred. She has systemic lupus and sjogrens. She also has rheumatoid arthritis, fibromyalgia, recently diagnosed with COPD, and thought to have Cushings as well. She is aspirating quite frequently when eating and drinking. Some times she is fine….until she isn’t. I feel like the doctors have slightly given up, but I feel there is more that could be done. She is really having a hard time swallowing without even knowing it. Are there suggestions as to what to do? So we get her transferred? I truly feel like there is more that could be done to try and rehabilitate her, but the doctors almost have the attitude as if “they could, but why”, it won’t help.

I have Sjogren's and use the Biotene products- especially the mouth spray. 30 years ago my dentist told me to start using them as most toothpastes, mouthwashes etc. have a drying agent in them. I use the spray before I take my pills and before surgeries. Every anesthesiologist has told me to spray a lot before the surgeries. It's over the counter and is not expensive-$6.99 at my local supermarket. It also helps stop the Sjogren's cough. I don't know what your mother is on for fibromyalgia but I use Gabapentin. That helps a lot. I hope this helps.
Take care.

Hello @lolaepp, sorry to hear that your mother is dealing with so many difficult diagnoses at once. You may notice, I moved your discussion and combined it with an existing discussion titled:

- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
I did this so you could meet the other members talking about Sjögren's to see how they are dealing with the symptoms. Members like @jmb73, @eileenb1022, @lilymol, and @shiprock have all discussed how they managed their symptoms and may have some insight on what steps your mother could take.

Thank you! She has been using biotene in the hospital. She too is on Gab for her fibromyalgia.

Thank you!

I have had Sjogren's for over 40 years and at the beginning, my rheumatologist kept doing blood work. Sometimes my tests were negative and sometimes they were very positive. I changed rheumatologists when my current one didn't take Medicare. The new one said the blood tests always varied and once you have Sjogren's- unfortunately- you have it forever.
I take Systane Ultra for my dry eyes and that helps. I also wash them with an eye wash every day and that prevents blepharitis. I do have plugs in my eyes and they really help. I had gamma brain surgery in 2018 and the neuro surgeon said to take cbd as it helps with nausea and headaches. He also said that you "can't overdose on straight CBD". My pain has gotten worse to I now take CBD and TSH- 1-1. I found that eliminates the high and only eliminates the pain.
Good luck

I have had Sjogren's for many years and take Pilocarpine for dry
eyes and dry mouth. I couldn't live without it. I just started cbd
for neuropathy in my feet. Just wait and see what happens.
Neuropathy can drive you crazy.

@lolaepp sounds like your mom is not getting the care you would like her to get. Am I correct? For the swallowing issues, you can ask/demand a swallow evaluation. This can show where the problem is. Also, is she getting speech therapy? A therapist can definitely help your mom.
For being transferred to Mayo. A receiving doctor is usually needed. Have you contacted the admissions dept at Mayo and explained your situation? Here is the link for appointments:
https://Mayocl.in/1mtmR63
Can you try these suggestions and let me know how it goes?

I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis I’ve had was self funded through Mayo. Sjögrens. As Mayo is in a different state, they would not offer treatments other than Cevimeline. I’ve done as much research as possible and am trying to control the immense fatigue that goes with Sjögrens myself. I found access to LDN, Metaformin, NAD+ injections, and hormones through docs in Florida (I’m in NV). Prednisone and hydroxychloroquin from Mexico. Why are doctors so hesitant to help? Have any of you been able to communicate the depth of issues that come with Sjögrens to your doctors well enough that they understand it can be debilitating? I recently caught my first case of covid because I’m a teacher. A teacher with a compromised immune system is frightened. It’s been almost 2 months and I’m still haven’t fully recovered, but I’m not dying so as far as docs are concerned , all is well.

How do you all manage the fatigue part of Sjögrens? Do your doctors understand Sjögrens? Have they prescribed anything that actually helps? I do have Xiidra, but the dryness are the least of my concerns.