I Was Diagnosed With Sjogrens Syndrome Almost 2 Years Ago.

My symptoms started years ago, but they were not life changing. This past year has been a nightmare for me. I never thought it would get this bad. My dentist diagnosed me.
He has been working on my teeth for a year and a half now, and I 'm still not done.
Recently I have been having problems breathing. I was told I have limited lung space due to inflammation?
The headaches I have are horrible. Lately I have thought I just want to give up.
I don't know how much more I can take..
I do have two babies: Andy, my dog and Smokey, my cat.
But I live alone. It’s really hard to be sick 24/7 and not have anyone around to help or just talk to.
I am so grateful to have found this website. I read the stories and I don't feel so alone.
My biggest problem is finding a good doctor. The rheumatologist I am seeing is a long drive and I don't think he knows as much about this disease.
I am hoping to find someone to help me manage all of the symptoms.( too many to write about).
I think the hardest part of this disease is, it's invisible. I have heard "you look good" so many times. Just wish that was how I felt.
I hope only the best for you all.
December0 December0
51-55
4 Responses Dec 16, 2012

I empathize...I'm struggling with this too and am having a hard time finding the proper care/physicians... I also have significant back problems which disallow much activity. I am a virtual shut in. I too am alone. I have a sister but she has her own issues so isn't really all that interested in helping me as much as I need... It's hard to cope and sometimes I really don't want to go on. I hope you are doing better by now...

Hi,

My doctor believes that I too have Sjogens, but my lip biopsy and blood work comes out negative. My reumatologist said it is not uncommon to take 12 years, on average, before the biopsy and blood work shows clear signs of Sjogrens. In the mean time, the symptoms are there. I believe I had early Sjogrens already 20 years ago. And after many years, I even started wondering if the whole thing was in my head. I am happy you have gotten a diagnose, so now you know what you are up against and can deal with it.One thing that I have discovered for myself is that digestive problems seem to be connected to my symptoms. The more digestive problems I have, the stronger the Sjogrens flares up. I have spend enormous amount to time researching my health issues and now I suspect that it is dysbiosis the main culprit to my illness. Do you have any digestive issues?I am thinking of asking Sjogrens suffers if they too have digestive issues.

---Sjogrens Dyspiosis sufferer

Hi ladies! I was recently diagnosed. I found out via labs and then more from the rheumy . I lived with the ms diagnosis for 10 years medications and all .i was in- diagnosed by both doctors. I guess this explains my addiction to chewing gum! Also my teeth issues, MRI with lesions and not really getting worse ms-wise I have a lot to learn about. I do feel better on plaquinel my joints loosened up a lot! Just wanted to share. I feel lucky I have my life back!

I also have Sjogrens but I just found out that I have it a week ago. I'm trying to except it and I will but it will take some time. I just joied this thing so I would love to all to other women that have it as well.