My Sjogren's syndrome Journey

My journey began with a confirmed diagnosis of Hashimoto’s Thyroiditis. After a bit of a struggle, Sjogren’s Sydrome was confirmed. 300 mg of Plaquenil made a significant change in my Sjogren’s condition and my attitude towards people.

I alienated my family and friends during the “nothing’s wrong with you” years.

What my future will be like, I’ve stopped trying to be prepared. Living in the present, is enough.


Welcome quietvoice! It's really hard when you're not well without a full diagnosis. It can be very disheartening, and even with diagnosis, depression is not unusual with autoimmune disease.

I'm glad that you've seen a change with treatment. Plaquenil made a huge difference for me when I started it, especially with the fatigue. Just remember that your eyes need to be monitored while on Plaquenil.

Thanks for the welcome.

Yes, depression was a problem, still is. Last August I decided to retire due to fatigue and joint pain. Plaquenil does relieve much of the fatigue. As for the joint pain, still a problem.

Yes, depression is an issue, still is. The form of meditation I practice is called Mindfulness Based Stress Reduction and daily practicing helps relieve the symptoms of depression.

Having the diagnosis of Sjogren's confirmed I finally am paying attention to my physical condition more than before. Somehow having something definite, my diagnosis, I am better overall.

That makes a lot of sense, that having a definitive diagnosis is a relief.

It does- at least doctors/ family etc. will believe you and not think you're a hypochondriac!! Even if there's not much that can be done knowing that you're not imagining it all can help.

Sorry that you're still suffering with depression- has the treatment for your thyroid not helped with that at all?

Others have found too that it pays not to look too far ahead, just take each day at a time... We hope that connecting with others in similar situations on this site helps you.

Hi quiet voice and welcome! I am sorry for what you are going through. I am fairly new to this group as well. I am also still struggling to get a diagnosis. My latest problem is waking up to panic attacks. My heart races, I am confused and I have a sick feeling in my stomach. I just want to sleep but everytime I go to sleep my body wakes me up to full blown panick. I went off all my meds. Klonopin and gabapentin due to the dryness. I tested negative for SS (blood test) I thought it was the meds making me so dry. I am still struggling with dry eyes, dry mouth, fatigue and on and off joint pain. My rheumy mentioned fibromyalgia and so did my neurologist. I don’t know but now I am having a real hard time with all this anxiety, worry, and panick. I have no quality of life and I feel like I am giving up. I am going to the doctor today AGAIN for these panick attacks. I know how you feel when everybody is telling you "nothing is wrong with you. " I have heard this from family and co-workers. I even sometimes try to convince myself that they are right! But my inner instincts are telling me to keep looking for that diagnosis. I guess until then it’s either give up or live one day at a time. I have children and would like to meet my grandchildren one day so I force myself to keep going. Living in the present like you said. Good luck to you. We will both get through this. It does help to talk to other people!!!

Yes, Jules, levothyroxine did help with the depression. I can do so much more now that I am not as fatigued since I began plaquenil January, 2015. I am not able, yet, to limit my activities. I listen to music when my challenges get me down.

I finally listened to my dentist. I bought an electric toothbrush and a hand held water pik which I am using as he directed. Having a definite diagnosis, brought me to my senses: I'd better start taking the advice of my doctors, or I'll end up in the er, or worse, hospitalized. My asthma is listed as moderate and well controlled. That diagnosis, asthma, and my finally using the inhaler as my pulmonologist wrote, the difference in my lung condition, and then plaquenil was added, I felt better.

I do have times when I feel the hopelessness again, but I no longer feel the despair as I did before.

Hi Quietvoice,

Welcome , I like what you say about living in the present is enough makes a lot of sense.