So Glad to Find Support

Thank-You for accepting my request to join this group. I have searched long and hard to find someplace like this.

I found out in July that I had SS. It started out with fevers and within days turned into red itchy blotches on my hands. I didn’t really think anything about it until a few days later bulls eye rings developed on my feet so I went to a walk in clinic. After numerous blood test they told me I need to consult with a Rheumatologist. So I contacted my Family Dr and they sent a request in to the nearest Dr and they finally got back and said they didn’t need to see me…that I had SS. So I made appt with my family Dr and she said without ever explaining it, this is what you have. When I ask if there was anything I could do, her answer was no. I was left in limbo land. So I came home and started exploring other options.

Since then. I had a month or so of feeling totally fatigued. The bulls eye places on my feet went away and never came back. I still get the red spots on my hands once in a while but not often. And I have found a holistic Dr that did further blood tests and found I was extremely deficient in Vitamins D, B and Zinc. And I have food allergies which are triggering the SS. I have also found a wonderful Dr that is proficient in Essential Oils. My holistic Dr has also suggested a gluten free diet and I’m trying but when your 61 years old it’s hard to change eating habits.

My biggest problem now is because of the severe dryness in my mouth and nose my sinuses are over compensating and the drainage can be excessive. It has helped using essential oils but still there. And because of that some days I have ringing in my ears.

I have little and no faith in medical Dr’s anymore.

Again thanks for the add. For so long I have felt all alone even with friends and family.

Welcome to the group! You’ve found a pretty good group of people to chat with, I’m actually a little surprised that you haven’t already been written to by many people so far.
Wow, your diagnosis is a new one for me. I had no idea that SS could begin with fevers and red itchy blotches. Mine was the standard, dry and fatigued and with a family history it was bloodwork first (zero negative) followed by a positive lip biopsy.
I think it’s great you’re working with a holistic Dr, though there are indeed some medications you may find yourself dealing with in the future.
I don’t know of any over the counter medications for the ringing in your ears- are your glands swollen? For the other issues there are some chewing gums, eye drops and mouth gels you may find beneficial.
If you have any questions, suggestions or if you just need to rant- we’re all here for you and you are not alone.
Stay hydrated!

Ruby, we’re glad that you found us as well! This is a great group of people, and like every community on Ben’s Friends, it’s a place where you are amongst people who get it. All of it. Those of us with rare diseases know that feeling of isolation and loneliness all too well.

So join in our conversations, or even start one of your own! We’re glad that you’re here.

Seenie from Moderator Support


I want to encourage you to consider seeking a second opinion. What your describing, that the rheumatologist made a diagnosis on the basis of your blood work? Plus your presentation seems odd. Mind you, I’m not saying that you don’t have Sjögren’s. However, there are people who test positive for SS-a and SS-b, yet have no symptoms. And others who test negative but receive a diagnosis. And of course, people can have more than one autoimmune disease.

I’m also wondering if your blood work included testing for Lyme disease and other tick borne illnesses. I live in the northeast, and this is pretty much always part of the initial autoimmune testing. I hear bulls eye and right away wonder about that.

If there’s a university center within a reasonable distance, this might be something to consider.

I think my post above was a bit confusing. I went to the Dr initially because of the redness on my hands and feet. Since they didn’t know what it was they took all kinds of blood tests. I’m not sure what all they were but I do know Lyme’s was one of them. Which came back negative. And from there they rhuematologist read the blood test and determined it was SS. My primary Dr said the red blotches were probably a virus. Although I have read on other sites that some people do experience the blotches with SS. In fact from what I’ve read it seems like anything and everything may be attributed to this disease. I do have more symptoms than what I posted. The drainage issue is the one that’s currently driving me nuts.
My holistic Dr feels that since I had a pretty stressful spring and summer that when I was able to finally let my guard down and breathe the disease found the perfect time to attack. Right now I feel better than I have all summer and fall so hopefully I’m on right track.
Thanks for all the input. I appreciate it all.

I hear you about the bloodwork. But the diagnosis is a clinical one.

Let me offer an example. My 15 year old daughter had all of the autoimmune bloodwork done. It included Lyme disease. She tested positive for anti-ccp antibodies. Off to the rheumatologist. Without joint damage or swollen joints at that time, she couldn’t make a diagnosis of rheumatoid arthritis. Even with blood work that would support that diagnosis.

You have bloodwork but no clinical exam. You don’t find that odd? Again, I’m NOT saying that you don’t have Sjogrens. I think it’s really bad doctoring.

Yes I do and have. I have sought help and further test from 3 different doctors and all have failed to help. I’m not saying your wrong, and maybe I should get further diagnosis, but I’m feeling better with with the path I’m going. So how could that be wrong!! Feeling stronger everyday and loving life again. I love my homeopathic Dr. She found hidden deficiencies that could be causing my flares. All I know is I was diagnosed with SS and I’m going with that~