SJOGREN'S is the dxd

Oh my gosh, where do you begin,
there honestly feels like there is no help or support for this diagnosis....
I have spiraled into such a deep depression.

I did alot of my own research online, just readin everything I could.... but please PLEASE find some form of support, don't do it alone.
I do not know your situation but I am a 22 yr old in a committed relationship, planning a family.... this disease has all but robbed me of that... I now have to be carefully monitored should I fall pregnant... I can pass on heart defects, the same disease, or even a different one.... My whole life all I have wanted is kids, now that's on the line.
Feel free to personal message me, I am always up for a chat :)

There is so much to this illness I would have to write a book to tell you all. It's main purpose in life is to dry you out but being an autoimmune problem it can and does cause many other issues. Anything that your immune system considers foreign it will try and fix but instead destroy. Also, our risk for Lymphoma is higher and if you have one it is very likely that you may get another - autoimmune disorder I mean.

It will change your life and you will have to learn how to prioritize. You will go through periods of depression because of this but try and be stronger than the illness and find yourself a really, really good rheumatologist who doesn't just blow you off by saying you have fibromyalgia. There are similarities and I have learned that by diagnosing that it is much easier on the doc but not on you.

Good luck. Learn all you can on your own so you won't feel like you are crazy when different and sometimes very unusual symptoms arise. My Rheumy said they are doing a great deal of research in Europe on meds for sjs. Maybe someday there will be a magic pill - who knows.

Sjogren's is an autoimmune disease. It was described to me like this: My body's own cells are attacking themselves. The cells in my body think I'm a foreign object, and it fights to destroy!.

You may experience: dry mouth, eyes, ears, nose, throat, skin, vagina, and hair. Also, Inflammation, joint pain, arthritis, fatigue, and just pain all over.

Mine has advanced to digestive system disorders! It could also lead to liver, kidney, and pancreas problems among others.

When I was first diagnosed, I went on Amazon and ordered Books about Sjogren's. I still refer to them.

Hope this helps somewhat!!

Hello, I have just been dx with sjogrens, I have read all I can find on the computer. dry mouth and a sore tongue is my problem right now. the tip and sides of my tongue is slick no taste buds there, and it burns all the time. anyone else have this? I am taking pilocafpine but it isn't helping''' any advice?

SecretlyD:
Please see a high risk ob-gyn if you want to have children. I have SSA (not SSB) and was told there's only a 3% chance that my baby would have heartblock, and if so, baby has to get a pacemaker.
OR: Baby looks like it would get heartblock when in utero, then comes out OK, no heartblock.
OR: It dies.

So, this diagnosis does not mean no children.

This may sound strange: but here goes: the only thing that has cured my burning tongue and mouth, is Kaopectate. I sip small sips thoughout the day, from the bottle top. Short licks. Coating the sore areas and tongue. After a couple of days I'm fine. During the treatment the pain is diminished. Been using this for years, since my pediatrician in Mexico City, suggested it for cold sores!

Congrats on being a Dad. What could be better? we all live with limitations. No big deal. Have a happy baby! I've had 4....love, abby