Newly diagnosed, suffering for almost 2 yrs now

Hi everyone, I was recently diagnosed with sjogrens after visiting an ENT who did a inner lip biopsy. Does anyone else feel like a test dummy? My first test was done 1 1/2 yrs ago when visiting a Rheumatologist who did a gland biopsy (stuck a needle in my gland just below the ear and sucked out fluid). Sound painful? It was! So badly wanting answers I find myself saying yes to just about anything, including “I’m going to take a chunk out of your bottom inner lip and put in a few stitches”, my response “ok”, never even giving it a second thought until I get home and am suffering from the pain the procedure caused. Boy I can’t wait for my upcoming Rheumatology appointment, what test will be next? My ENT feels I have secondary sjogrens. Most likely have Rheumatoid Arthritis or Fibromyalgia. I’ve learned to have my husband take me to my appointments as I usually don’t feel up to driving after. I am now recovering from a total hysterectomy and surprisingly am feeling pretty good. After 1 week I worked from home and after week 2 I’m back to work full time. I have a great support system at work and my family is coming around. It’s hard for them to see me less active during the evenings and weekends as I was on the go constantly just 2 1/2 years ago. I have dealt with pain all my life but have been able to “suck it up” and keep going. Now sadly I am past the point of being able to suck it up and the pain along with my female issues has taken over my social life. My goal is to find ways to decrease my pain and increase my activity on the weekends. I want to enjoy everything and everyone (my family) I work so hard for during the week. Thanks for reading!

Hi, nice to meet you. It sounds like you are getting hit with a bunch of things all at once. I am sorry to hear but it seems like you have a great attitude towards it as well. It sure makes a difference some days.

I think most of us feel like test dummies and it gets even older having to repeatedly educate the doctors that are supposed to be helping. Poking fun at it is my only defense some days. Otherwise its so frustrating I want to scream.

I think your goals are the same as most people…. the best way to keep moving forward seems to be getting very used to listening to your body and knowing when you need to rest, etc. Sucking it up is part of this, unfortunately but so is being able to say No to things so you can keep moving in the long term. Best think I can say is be good to yourself.

Keep us posted on how you are doing!

Hi Hun, wow, you’ve been through the wringer! My doctor did a blood test to find my Sjögren’s. You are very lucky with your hysterectomy. I was 24 when I had mine and had a lot of complications. Sjögren’s sucks! It is hard for our loved one’s to see us slide down. Keep them informed about what you’re going through. Give them things to read to keep them abreast of what’s going on. I hope you have a good support team, that helps a lot.

Welcome to the Sjögren’s forum.


I have all the symptoms of sjorgen's but don't test positive for the SJ test.

I hope they can help you. I wish I could actually get a diagnosis.

Sounds like you have a lot going on.Some through the frustration I think you still have a sense of humor. keep it-it helps us stay away from total insanity! It took me 10 years to get my diagnosis after being told lupus, fibromyalgia, psoriatic arthritis and after trying to take in and adjust to each diagnosis the doctor changed his mind! Talk about frustration. So now It's Sjogrens (primary?, Secondary?) and I'm learning new things everyday. This site is wonderful because I've learned I'm not alone on this journey. Hang in there!

Thanks everyone. A sense of humor is necessary to keep going. I was put on anti depressants prior to the diagnosis and it did help. I didn’t realize how this was affecting me emotionally until I started the meds. However I am 3+ mos in and am starting to “see things”. Particularly when I wake up in the morning and am still sleepy I have seen spiders on my ceiling that wasn’t there. My friends at work and I like to laugh about it all to keep things on the lighter side. But really I need to take it seriously and talk to my doctor about looking into an alternative med. Has anyone else had these types of reactions to meds. Does it seem common for sjogrens sufferers to take anti depressants for emotional and physical relief?

Hey….you should definitely get things checked out. It could be from the med but could be other things too. I started with that before I started the meds. In my case, the outer layers of the eye don't adhere to each other well so I get cysts in between the layers. And yes, that is every bit as painful as it sounds. If you look at it in the light, it actually looks like a fingerprint laid on the eye. Tiny but packs a punch. It is exacerbated by the dry eye. They come and go but depending on where they form, they can cause little disturbances in my sight.

And I have definitely looked twice at things because I'm not sure if it was a spider or just me again. Funny that you see the same thing I do.

depression is one of the commonest feature of SS and the use of anti depressants is very common.
I don’t find any of them effective but some do.
Mirtazapine and Fluoxetine have fewer odd effects than some - as ever it depends on the dose and the individual.
I get "hallucinations from time to time without being on anti depressants stress and SS seem to cause it.