Hi everyone! Newbie to SS

Hi everyone! I am so happy to find this group. I was diagnosed with Primary Sjogrens about 6 months ago. I was misdiagnosed, given wrong meds, and treated like a hypochondriac for 3 years before my neurologist suggested SS when an MRI failed to find MS. At first I was just relieved to know what it was! And to know I wasn’t crazy. I now take gabapentin and plaquenil daily. And Restasis for my eyes. But I am still so sick. I have a headache every day, sometimes mild and sometimes I can’t get out if bed. Does SS cause headaches or could they be side effect of meds. Thanks foe adding me to group!

Hi Terriann and welcome! It’s not uncommon for people to go years before being diagnosed. You asked about headaches. I don’t know what the relationship is, but I do know that there are lots of alternatives for dealing with regular headaches. I’ve done acupuncture for migraines, supplements, stretching. It really depends on where the headache is coming from. I have a mix of tension and migraines.

Hi Stoney, thanks for responding! I saw my neurologist yesterday and he said I am having migraines. He gave me pills and injections to give myself if I need them. He wants another MRI in 6 months. He just can’t believe I don’t have MS, lol. This is a truly hard road to go down but I am lucky to have a supportive family and work family. Even though my silly youngest son says he doesn’t like the word Sjogrens so he calls it Tourettes lol. I pray for all if us.

“…youngest son says he doesn’t like the word Sjogrens so he calls it Tourettes lol…”
That’s a good thing, you could call him nasty names and just blame it on your Tourettes lol

I was recently given imitrex injectable as an emergency med. That stuff works! Wow!

I have also warned him about the severe tics that sometimes happens in Tourettes so if I should accidentally throat punch him…well…lolol. Just for clarity, he is not a child he is 37 and has always been able to make me laugh.

1 Like

Hi Stoney. I am glad to hear this works. Now I have to get over the fear of sticking a needle in myself. I am thinking pain will be a good motivation!

1 Like