how does sjogrens feel?

[Rachelinpain]

for those who are diagnosed with sjogrens could you please describe how it started (what the associated drymouth feels like, etc) and if you have a positive blood test (ANA, SS).  

[heljell]

I had my lip byopsy done at ucsf sjogrens clinical trial dr. Has done thousands and it was about as bad as butting my lip badly and she took several glands I would so do it again to get a diagnosis 1 day of pain for years of questions

[jinkies5978]

I just wanted to say  that you aren't alone.  I have been on a search for almost 6 years...although I was completely well for about 3 of those years so I discontinuued the search.  Now everything has flared up again and the search has started all over.  I went to the neuro, suspected MS but alas, no lesions.  Headed rheum. again in about a month...took that long to get an appt.  I have all negative tests although some random things come back low but nothing drastic or definitive.  I have almost too many symptoms to list...although I did try ot list them all in another post "Where to go from here".  This time around I have much more of the dry mouth and dry eyes although I didn't even think about it until I started researching again.  I have 2 cousins with Lupus and 1 that passed away from Sjogren's.  I really, really hope that we both find out it is something else, but my gut tells me I am headed down the AI route.  Fingers crossed and best wishes to you in your journey!

[CB1966]

My SSA is elevated but no other markers are positive for Sjogrens in my blood work.  I have muscle pain and fatigue, slight eye dryness but no other symptoms.  My mouth is not dry at all.  I have had no other tests (like the salivary gland biopsy) so I'm wondering if it's possible to receive a diagnosis of Sjogrens without further testing.  Dr. said my SSA is only moderately elevated.  Anyone?  Also, has anyone researched any natural supplements or diet that helps with this condition??   Thanks, CB

[Liz716]

Does anybody know if it is possible to have extreme fatigue with sjogrens, but no dryness in mouth/lips whatsoever? I was told I have positive Ana but I got my salivary glands tested and they were normal. I have also been going on a gluten and dairy free diet,... That helped for maybe a month and now I'm back to extreme fatigue and now I'm starting to notice some shaking..the docs can't seem to diagnose anything...any thoughts?

[Want to feel well!!!]

My rheumatologist sent me to an otolaryngologist for the biopsy.  

[preciousgirl]

What type of dr/specialist did your lip biopsy?

[Want to feel well!!!]

A lip (salivary gland) biopsy a very good diagnostic tool for Sjogren's.  My rhuemy had me to a "cracker test"...try to eat some crackers without drinking anything and I could not do that so he had the lip biopsy done.  There is a biopsy of the parotoid gland (more definitive) but it is a bit more invasive.

This search for a diagnosis seems so long and arduous, but keep trying!

Wanna :o)

[Rite760]

Yes you can have Sjogren's without the positive blood tests I have. My general ANA's are negative and the special ones RA and LO are negative, but my Shirmer's Eye Test was completely positive. A rheumatologist finally diagnosed me after 2 horrensous years and said that 20 % of people do not have the anti-bodies in their blood.
I started off slowly with dry sore eyes, very painful mouth, and then things gradually progressed. It was missed for a long time coz a lot of the symptoms were similiar to the premature menopause I was going through. I now have pain in my salivary glands all over my face, and blood blisters come and go on my skin. I am achy and tired. I have a dry cough which never goes and repeated chest infections. And awful nausea. I also have lots of muscular tingly feelings and twitching which my docs kept telling me was stress, but I've just noticed you're getting them too. So I'm gonna ask when I see the Rheum next week if they are a symptoms too and I'm also gonna post about it which is why I came on and then saw your post and got waylaid coz you sound the same as me! I don't know about you, but I get an awful amount of anxiety too, anyway hope this helps.

[cudagirl]

The symptoms that I have are extreme fatigue, joint aches,,,,VERY dry mouth and eyes.  My tongue sticks to the top of my mouth, just after a conversation on the phone.  I have had severe (sp?) gastro problems, and bad lung infections.  I also have heart and kidney issues.  For me they found Lupus first, then just a few weeks ago, I was diagnosed with SS as well.  I hope you get the information you need.  It is so hard knowing something is wrong, and you can't put a name to it.  Just hang in there, and change drs if you think you are not getting anywhere.  I felt like a hypo so many times, but stay with it.  They diagnosed my Lupus with ANA and other test, but the SS was diagnosed with a lip biopsy...not fun. My salivary glands under my chin were very swollen, almost golf ball size.  They didn't hurt though.  I take Plaquinel and steriods and it is helping.
God Luck!
Pam

[Rachelinpain]

thanks for the reply.  i guess i am asking because i have been seeking a diagnosis for medical problems i have benn having for almost 3 years.  they have not been able to give me any definate diagnosis.  they thought it may be autoimmune but i have never had a positive autoimmune test.  then they thought it was MS but i have no lesions.  

generally my symptoms are neurological (numbness, tingling, weakness, fatigue, pain, muscle spasms and twitching, vision probs, etc).  a few months ago i had a very weird "bout of something".  i got a really large swelling behind my left ear and had what i guess is dry mouth.  the inside of my lips were sore and raw because they were sticking to and rubbing against my lips.  my tongue would be stuck to the bottom of my mouth in the morning and literally be painful to pry off.  i was also having swallowing problems. these lasted for several weeks.  i have had dry eyes for years which i was told was allergy.  i also have a skin condition hidradenitis suprativa that started about a year ago that is often seen with sjogrens.  i have alot of joint pain but i have a connective tissue disorder that can explain most of that.  

i guess i am wondering if maybe sjogrens could explain my other symptoms. could i have it and not test positive in a blood test? right now i am doing ok but have had 1 other short bout of dry mouth and swollen glands.  

mostly i am just looking for answers to my condition so i can get the right treatment.

thanks

[krndhn]

I don't think the symptoms are the same for everyone.  Mine was diagnosed about 4 years ago and what I was feeling then , along with dry and dry mouth, was a strange feeling in my heels.  When I'd get up in the night I could hardly walk because I felt like my heels were numb.  Mayo clinic drs. tested me and came up with Sjogrens and prescribed plaquenil.  I didn't like the way it made me feel, so I didn't take it.  The heel  problem eventually went away and I wasn't that concerned with the dry eye and dry mouth - it just meant not being able to wear my contacts and using liquid tears and sucking on hard candy.  It was nearly 2 years later that I began having pericarditis attacks every month - very painful and a little frightening - that the cardiologist did an ANA test and sent me to the rheumatologist.  He said that the pericarditis attacks are one of the first serious signs of Sjogrens - dry eye and mouth aren't the only things that dry out - that the lining around the heart was  being affected.  He insisted on me taking plaquenil, ( turns out the diarhhea and gas doesn't last that long) but also put me on prednisone for nearly a year.  In the meantime I have had several other symptoms of the disorder.  Because the fluids dry up, you may have painful joints, - just an unwell feeling a lot of the time in my case.  And I'm extremely fatigued a lot of the time. Plaquenil is apparently the typical treatment, then on to others if that doesn't work.  It is an auto-immune disease and you may feel a lot of the typical symptoms of lupus, fibro, and other AI diseases.  

Write me if you have more questions - I'm not an expert... only someone who has been there and still am finding new symptoms everyday.  Just take your meds and try to deal with it - it's not always bad..... I go for periods where I don't even remember I have it except for the dry eye.  Good luck and keep in touch.
   Karen