I was diagnosed with Sjorgens syndrome 14 yrs ago. I was also diagnosed with St4 NH Lymphoma 5 years ago. Thankfully I am blessed to be in remission for 3 yrs now. My son is a Dr. of Internal Medicine. He told me there is now a medical connection between Sjorgens and Lymphoma. Now, when diagnosed with Sjorgens he orders a cancer panel also. I am sharing this because for me to be St 4 I had Lymphoma for many years. Please talk to your Drs and have a cancer panel done if you have Sjorgens syndrome.❤️

I can certainly relate to loss of taste and smell. It’s been almost 3 years for me now without it. It is a pretty dull life, not much to look forward to as far as food goes, then add that I have several food sensitivities along with no taste or smell. It’s a drag! Lost is 2 days into Covid in December of 2022. I’ve had 7 Stellate Ganglion Block injection, nothing so far…

Thank you for sharing!🙂

Any problems with loss of taste?

If you don’t mind me asking….do you know what test determined Mixed connective tissue disease !

I was diagnosed with Systemic lupus and Sjögren’s over 30 years ago. Up until now I could use lubricating eye drops which don’t contain preservatives and a gel at bedtime. This last year he have been in so much pain with my dry eyes and nothing worked . I am using hylo forte eye drops every hour and Vitamin Pos eye ointment at bedtime as I am now waiting for the Red Cross to take my blood and make Autologous serum Eye drops that are all the good nutrients that can repair the cornea . I hope it works as I can’t enjoy my life with the constant pain and burning in my eyes. I have to flood them with single vial tears in the morning to get my eyes to open. This is a new treatment and suppose to work very well. I hope they work for me.

Dry eyes I use xiidra from eye doctor
Mouth I use a medication from my dentist

Hi. I’m also going through the dryness and loss of taste. When I started taking Pilocarpine, I got so dizzy and fell in the bathroom. But I restarted taking them again because I am just so dry everywhere. I also decided to take it again because I found out that I had dysautonomia with vertigo and syncope. I take it 3X a day now and I am not as dry now. There is Cevelimine. It has less side effects. I also freeze fruits and just enjoy them. I keep slices of limes and lemons to take them wherever I go. They help me. In the summer, I always have ice chips.
That soft area at the bottom by your jaw is where I was told to rub softly and the area below the cheekbones. It stimulates that saliva production.
The nausea could be the reaction you have with taking so much of whatever sweeteners that are in those gums, lozenges, and mints.
I also had lost my taste and it’s been difficult. I tend to over season the food I cooked. I also have these cravings. I just eat for the nutrients and try to be as healthy as I can.
Hope you find something that helps. I just want to say that I can relate to what you’re going through. Take care.

Hi, Lorrie. I still cook for my daughter and family. I just get a kick out of making something good that they enjoy even though I cannot. I have to have my daughter to taste it and tell me what else the dish needs. That seems to work out.
I’m so happy to hear that I helped someone. I’m so limited in my abilities! Thank you. You made my day. Take care.

Yes, I can relate. I lost my taste/smell in December of 2022 and now it’s February 2025! It is depressing not to taste and smell, I will agree with that. I am in Mexico for the winter and had a chiropractic visit here and I had told him about my loss of taste/smell. He adjusted my neck in a way that I have never been adjusted before. It opened something up and I was draining into my throat the whole next day and I could even taste my coffee a bit the next morning and a carrot at lunch. Today, I noticed not so much of a taste of my coffee, but I’m having another adjustment on Saturday and hope he can do more for me. I’ll try just about anything at this point! Look into Stellate Ganglion Block injections. They’re suppose to help with getting taste/smell back. I’ve had 7 and it’s brought back some where I have a more salty, sweet or bitter taste on my tongue. It’s not back yet, but I think it’s coming. Try to be patient, I know it sucks!