Sjogren's Syndrome Support Group

Hi all, I joined this group recently because I felt like I've gone too long without support. I've been coping with my crazy symptoms for years after receiving the horrible diagnosis sjogrens syndrome with lupus like qualities?? I'm confused because it's not lupus, but acting like it in my blood, I guess. I know a lot of these CTD overlap each other. I'm having a lot of crazy aches and pains, but most irritating is a right temporal lobe headache. I wanted to know if any of u have experienced this??. I'm seeing a rheumy whom I can't get an appt with for some time. I'm just hoping it's not more bad news when I see him. Thanks for all your help.

Welcome to the group

I have had Lupus and Fibro symptoms for years and I was tested for Lupus and it came up negative so they told me I have Fibro. ANA testing is NOT an exact science as I could be tested again in a month 6 months or a year and it will not be the same. With Sjogren's many of the Lupus and Fibro symptoms are the same

If you look over the discussions in the forums here you might find what you are looking for As I have posted info on these subjects in hopes of helping others like yourself.

I have migraines and experience pain like that in my neck, cheek and my temple. The moisture glands are affected with Sjogren's and they can become inflamed causing swelling and or pain.

Maybe others reading this can chime in with their experiences

Thanks alot for replying twisteddna! It seems like u and I share alot of the same symptoms. It's so irritating to worry so much. I'm so tired of stressing out over this. Hopefully, someone else can chime in on this

Yes!!!!! I have the same pain there as you!!! It makes me feel like I am being stabbed in the side of my head with a knife!!! I am going to rheumy tis wed. and going to ask this amongst many other questions. I completely know how you feel. When I get this pain I have to rub my head right there to settle it down, but sometimes it irritates it more. Grr!

asishallbe, you know that we are twins in pain! I know that sounds horrible! lol

Yes, we sure are!

Things that help me when I have migraines is pull my hair firmly to help blood circulation. Usually my partner helps firm but gental. :o) Another thing is put ice on your inside wrist and behind your neck.I don't know why but sometimes it works. I also use cold pack over my eyes because my eyes get so warm when I get a migraine. Hope this works for you.

Thanks so much dreamers. I'm experiencing a break from them now. Shhhhh...they might here us and come back! Lol I have to joke to keep myself sane. Thanks for your help.

I understand that. I constaintly have to take the moments and makes jokes to survive. Method well used in my past. Kept my sanity. But on some really bad days my partner reminds me to just cry and let it out. I can just let go and be ok. :o)And when I feel no pain I can remember to dance silly at home LOL

I know we have to treasure the "good ole days"!