← Return to Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes

Discussion

Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes

Autoimmune Diseases | Last Active: Mar 4 11:13pm | Replies (56)
Comment receiving replies
@meaganfeliciano31

I was diagnosed with sjogren's and fibromyalgia about 3 years ago but experienced symptoms much longer before receiving my diagnosis. I lost taste/smell about 6 months ago. It is very depressing and I have lost about 20 pounds. I was on hydroxychloroquine but experienced immunodeficiency and became very ill so I have discontinued it. I'm currently searching for a new rheumatologist as I did not like my previous one. He had no bedside manner and I don't believe he listened to all of my symptoms. I'm 36 years old and it's extremely difficult for me to get out of bed and function through the day. Im extremely fatigued. I experience night sweats to the point where you would think I just jumped into the pool. I have severe joint pain. I also experience symptoms of dysautonomia. I am becoming increasingly depressed and just feel defeated.

Jump to this post

Replies to "I was diagnosed with sjogren's and fibromyalgia about 3 years ago but experienced symptoms much longer..."
Becky, Volunteer Mentor | @becsbuddy | Mar 1 10:48pm

@meaganfeliciano31 Hi, I have several resources you can try for looking for a doctor. Check out comprehensive medical centers (in your state) and university/teaching hospitals.
There are also
NORD. https://rarediseases.org/living-with-a-rare-disease/
GARD https://rarediseases.info.nih.gov/
Autoimmune Association. https://autoimmune.org/resource-center/finding-a-physician/
These 3 organizations keep lists of doctors so give them a call!
Becky

VIEW AND REPLY
researchmaven | @researchmaven | Mar 4 11:13pm

meaganfeliciano31 -- Definitely get a new doctor. Check out Castle and Connolly - they only list nominated MDs and then their check them out. Note C&C makes their money elsewhere.

Don't give up. Eat a wide variety of healthy foods. A holistic MD had fibromyalgia and cured herself in a way different from standard medical practice. She has remote patients. Dr. Margaret Gennaro, Fairfax, VA. Check her out. She could help you.

BTW, I have lupus and just got secondary sjogren's, mild so far. However, I have battled fatigue for awhile and it was getting worse and I have a difficult gut and eat only a narrow band of odd, bland, foods.

I decided to try Biotic Research's Methylfolate Plus after much research. I have less fatigue and take 100 mcg daily.

VIEW AND REPLY