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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
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.
Replies to "I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis..."
@ebinca Welcome to Mayo Clinic Connect! I’m sorry you’re having problems with sjogrens and that doctors are scarce in your area. Someone recommended this website as an excellent resource.
https://www.sjogrensadvocate.com/
The National Organization for RareDiseases and the Genetic and Rare Diseases organization should be able to help you find a doctor. Phone numbers are on their websites.
https://rarediseases.info.nih.gov/contact
Please let me know if they are able to help.
@ebinca, Sjögrens, like many autoimmune conditions, is frustrating, especially the fatigue. I moved your message to this existing discussion:
- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
I did this so you can read previous posts and connect easily with members like @eileenb1022 @susanh824 @jerrysgirl3 @lolaepp @jmb73 @ozarkeagle and many others.
You may also wish to use the Search function to find many other related discussions: https://connect.mayoclinic.org/search/discussions/?search=Sj%C3%B6gren
This one looks like it might also interest you:
- Autoimmune Diseases and Fatigue
https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
What helps you cope with the debilitating fatigue?
What helps me the most, and I don't know what is actually helping as I'm diagnosing and treating myself as my doctors keep pushing me onto another doctor who pushes memo to the next. I have added methylfolate, elemental iron and vitamin C to help absorb iron. And electrolyte salts. I'm going to restart my great liquid vitamins that are high in the B vitamins as I'm highly anemic!! And of course afternoon naps as I'm up around 4:30-5 am now 😳. I'm usually crashing around 2 pm.
I was on hydoxychloroquine for about 3 weeks when I started having issues and doc took me off. Since then my labs have been bizarre and I'm not happy 🙁
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@ebinca
Welcome to Connect! We do have quite a few members that have been posting about Sjogren’s. I hope someone will get back to you with personal experiences. I have dealt with other autoimmune illness and part of that illness was debilitating fatigue- on and off, depending on the activity of the illness. I’m adding a link to an NIH article about the fatigue- there is a lot of scientific discussion but there is quite a bit of information. Are you able to travel to one of the Mayo Clinic campuses?https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8267792/