Sjogren’s Syndrome – Introduce yourself and meet others

@graveltruck my sense of smell is also very weird and so is my taste.

Hello to All, I am happy to see this group. I developed dry mouth about three months ago and self-ordered an Early Sjogren's Profile (on sale). Results returned with a positive reading. My mouth becomes dry after meals mostly. I have found that after brushing my teeth I get good relief by using my night guard during the day following meals. I have been using a XyliMelts Dry Mouth Stick-On Melt while using my guard too. My eyes for the most part have been OK. I have other issues like poor oxalate tolerance, but this has been so longstanding I don't as of yet know how it ties in, or if it even does. I hope to gain some insights by reading back on your posts (I have by the way booked an appointment with my Internist).

I've had nausea this week wondering if this is from sjogrens or Tylenol I take for my ear ache.

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

@colleenyoung Hi, my name is Beth and I was dx with sjogrens via blood test. My pcp was up against a wall trying to dx all my symptoms and so she ordered every autoimmune disease bloodwork. So I have this one and autoimmune inflammatory disease which I guess helps explain my overall chronic pain for too many years.
Actually my eye dr told me years ago I probably had sjogrens bc of my sever dry eyes and my reporting a dry mouth and always sipping on something.
I have tried to get help in the city I live in those rheumatologist turned me down due to what they thought my pcp could handle. Shands denied my referral so my pcp sent a lot of her notes with the referral and they would not even look at it bc they had denied it b4. So finally she sent it to the Mayo Clinic and I have an APPOINTMENT! My symptoms are: extremely dry eyes and mouth. My mouth Hurts it is so dry. My skin has become very very dry and rips open at the least bump and then takes forever to heal.
I’m so glad to be here on this and look forward to any suggestions and help. God bless you all.

@joebeth Good to hear you have an appointment with a specialist at Mayo. Medical care for Sjogren's can be challenging.
My skin symptoms are similar, I can relate. I have a couple of hacks that I find helpful.
1. Silicone bandages. They don’t stick as well but the benefits outweigh the alternatives. They’re hard to find locally but there’s a big assortment on Amazon.
2. Ask the blood tech to wrap your arm after a blood draw. Or bring your own silicone bandages.
3. Proactively ask your doctor about wound care before dermatology procedures or other medical treatments (eg. surgery)
4. Paper cut on hands. I wash with soap, add a drop of Aquafor to a bandage. A nitrile glove can keep the area dry. I wear the glove whenever my hand is wet.
5. When it appears my cut is getting bigger I contact my dermatologist. A little sore can open up like a hole in a knit sweater.
6. BioOil instead of face cream. It has Vitamin A and Vitamin E. I was using a luxury brand regime and applying this oil for the past three years has made my skin feel better. A little residual soaks in. People tell me I have beautiful skin.
7. I love Vitamin E Oil. When a cut starts to scab over and heal I believe gently rubbing Vitamin E Oil one or two times a day promotes healing. It’s also great after scabs healed, flattens any stitches and reduces dark spots.
8. I have dry Raynaud’s hands. At bedtime I rub Aquafor into my hands and wear white gloves.
9. Moisturize your body 1-2 times daily. Preferably on damp skin.
10. Use humidifiers with distilled water.
Living with Sjogren’s requires lots of hacks which I consider taking care of myself. High maintenance becomes a routine. Makes me feel better.
I have taste, smell and dry mouth symptoms and have adjusted my diet. Maybe others have helpful hacks???

@texasblooms Thank you so much for responding. The list will be printed so I can follow what will work for me. Thanks again

@joebeth You welcome!
Have you started preparing for your 11/16 appt? I've found helpful threads about preparing for your first appointment on this site. Can Mayo Clinic access your medical records? Maybe consider calling the doctor's office and asking what medical records to bring to the appointment? Maybe start a daily diary of symptoms? I recently interviewed a new PCP and the doctor appreciated the records I provided.
Food is a major burning/dry mouth trigger for me, everyone is different. First I eliminated garlic and mint and now find a bland diet helps me manage symptoms better but it's still a moving target.

@johnwburns I was diagnosed through extensive blood work and all my symptoms. I have not had any treatment but I have an appt at Mayo on November 16. That seems so far away! I’m trying my best to handle the symptoms but it is really hard.

@joebeth how did you get into Mayo? I was told not availability and no waiting list. That was for rheumatologist.