Sjogren's Syndrome Support Group

I am a 34 yr old female. 2 yrs ago I was dxd with gerd. About 9 months ago I started to get random pains in my hands, fingers, and ankles-usually one toe or finger at at a time. It would hit anywhere from a minute to pulsating for an hr- a deep toothache bone type of pain. I also developed muscle twitching all over, nerve type burning pains and buzzing on and off in either foot. Finally, I got EXTREME joint cracking. I have had deep eye pains, and even stabbing pains in my teeth. I have had TONS of labs-ana, antismith, RA, etc etc. MRI of head and spine, EMG-all clear.

Well those symptoms have gotten a lot better but they do come in waves now.

Now for over a month I have had upper left ab pain about an inch under my breast and some centered burning. Turns out its my pancreas. My lipase has been slightly elevated and tumor marker for pancreas (this can be raised w elevation to the pan and with AI diseases). I had an ab US, CT (though was in ER so dont know how well read) and EUS-all clear.

I just retook my ca 19 and lipase so we will see if it has gone down.

My question is does this sound like sjogrens? I cant help but think this is all connected somehow. Is Sjogrens hard to dx?

My eyes get dry and itchy and red....but my mouth and nose seem fine. I do have real bad allergies.

Feedback GREATLY appreciated. I am terrified I have pancreatic cancer but am trying to look at other potential causes

I dont know if i will b of any assistance to u , if u have sjogrens syndrome ,there are a lot of different thing u will endure one of them being gerd, because of the decrease in saliva production wich is necessary to aid in digestion of food reflux will be frequent ,indigestion , also it can cause brain fog(trouble with memory), excessive dry eyes,it can cause fatigue/exhaustion and reynauds phenomenom wich is tingling and othe sensations in the extremeties, and because of decreased saliva ( wich is needed to help keep u mouth clean u can suffer from cavities quite often if not seen by a dentist alsocan cause painful mouth sores , respiartory infections due to dry nasal apassages , there is so much that comes a long with sjogrens it is so hard to gauge what is causing what especially if u have secondary sjogrens like i do , i have several other problems that are causing my immunological disorders and they cant pin point where to start , I really hope all turns out well for u and hope i have helped some GOD BLESS U ALL

thank you very much to have secondary i did not really know that my gallbaddler was taken novmber ebonyp

Thanks J, I always thought it was odd to have gerd with little resolution. I just hope this pancreas issue is not PC, and hope my scans were right.

Do people with Sjogrens get muscle twitching, stabbing random nerve pains, on and off numbness and extreme joint cracking? These have calmed down a lot but get them in flares now

yes u can have some of those symptoms with sjogrens but u can have those with lupus or nerve disorders, i am 24 and have had the joint cracking for years, i have almost like a trickling or pins and needles down my legs , just keep pushing the physicians to find out what is wrong , it took mine 8 years and a doctor didnt figure it out a nurse practitioner did god bless her , the docotors just dont want to mess with me . please keep me posted i love to hear from everyone to see how they r doing

I have that feeling in my legs but more like a cell phone is set on vibrate..its so odd.

The joint cracking comes in waves, at its worse my hips would crack (both) EVERYTIME I sat down or stood up,s houlders would crack all throughout the night as I rolled over, knees cracked--I actually started to count 15 times per 10 minutes. It got to the point my shoulder would grind and my knees would feel like they were sliding out of the socket-painful. When I moved my legs my neuro had no idea what to say as he heard and felt the popping. Again, these symptoms have reduced dramatically but now come in light waves...

At first I thought it was lyme, but realized I live in teh city so the chances of that would be rare. Was ruled out of MS and muscle diseases as well.

The sliding out of socket pain is the worse. My hip and femour joint slips out every once in a while. I sleep with a box fan. The sound of your joints cracking would keep me up at night My legs twitch also.

Thanks for your feedback. How did your sjogrens onset? Do you have flares? I really am wondering if I have this though my mouth and nose do not get dry....

my first symptom to onset actually started at the age of 16 i got a dry mouth and excessive thirst, then i started sleeping all the time.i stated getting mouth sores quite often ,respiratory infectons, nose bleeds, things just escalated from there i felt like i couldnt remember anything kinda like a brain fog (confused,,,then dry eyes set in and my contact started ripping in my eye balls

I have always had dry eyes. Just thought it was because of the contact lens. haha. The brain fog has been in the past year. The thirst has seems like it has been there since birth. I think that I might have a bottle water addiction. Must have one by my side at all times.