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Sjögren’s Syndrome: how do you manage the symptoms?
Autoimmune Diseases | Last Active: Apr 10 8:16pm | Replies (158)Comment receiving replies
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.
Replies to "Hello. My mom is currently in the hospital, not Mayo; although we would love her to..."
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.
@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?
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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.