I have Sjorgens SIcca, Raynauds, Ostoarthritis and Fibromyalgia X 13 years..All this came up after a bout of pneumoina..I just never got any better..The sjorgens is now severe enough by the recent labs of 4/9/09 that it has affected my kidneys and placed me in a stage 3 out of 5 for my kidneys.My labs fluctuated and docs were back and forth about actual cause..Finally I told them if it walks like a duck, talks like a duck it's gotta be a duck..So, labs finally gave everyone what was needed for proof they needed..Always Research is what I recommend you do..My eyes are so dry that I use a tube of eye ointment a week or my lids would stick to my eyebal and cause painful sores..(Which has happened beofre)..I see a Opthalmologist every 6 months and have a visual field as well to be sure vision hasn't deteoriated..My shirmers test is very positive for the Sjorgens plus I have no tear ducts..I lost all my teeth to the Sjorgens and due to bone loss am unable to have a plate that will stay in place on lower jaw..Thankfully can wear upper plates but even still am so dry the plate makes sores ..Due to the pain issue I tried to have a pain pump installed but ended up with a 24 hr. epidural headache and the trial had to end with a blood patch..Don't know if I will be able to try it again or not but something to think about..I have tried all the meds out there for this and I am so sensitive to meds that nothing has brought relief..I don't like meds but would love to find something that owuld work..Lidocaine patches help some with the topical pain and not so deep pain..
I guess what it all boild down to--DON'T GIVE UP, don't always accept what the doc says as gospel..Many times I have found the docs are over worked understaffed and working on short fuses..The docs jump for answers and it doesn't always mean they are right..A good doc will say they don't know but lets try to figure this out..
I have been told I have a little Sjogrens and a little Fibromylasia yet test negative in all areas in the Sjogren's dept. I do however hav a positive ANA of 1:160 from what I hear is a low positive. My Rheumy did perscribe Plaqunil, Ultram and Celebrex for the unbearable joint pain. I also hear Lyrica works well for some with the the joint/muscle pain. Basicly the Rheumy said we are just waiting to see what disease my body deciedes to come up with that will test positive. We are just treating the symptoms because even if it did test positive that's all they would do anyway. I've recently been diagnosed with Erosive Esophagitis, Gastritis, and Gastric Polyps, hopefully not because of the meds I"m taking for the joint pain but I'm seeing a Gasto soon to discuss that. Hope you find some answers soon, I had to go to 2 Dr. to find one that would even give me a Rx for the pain so don't be afraid to ask for another oponion. God bless
My Rhemy finally gave in and said I probably have Sjogren's and started me on a therapy of Plaquenil to see if it would help my joints. He's still puzzled by the muscle thing, and I don't think he comprehends (or thinks I'm exaggerating). I have begun the think that I may have something additional (and he does too, but don't know what), but right now it's just Sjogren's with no antibodies. I was blessed with a good month until recently when I started experiencing the more worse symptoms including the memory, more sore joints and the floppies. My challenge now is the see if the medicine provides any relief (hard to say yet if it has since I began it a month ago when I was in a "remission." My dry eyes/mouth are not too bad most of the time, although I have had mouth attacks in the past that involved swelling of the glands under the tongue. Still, I attacked those two problems pretty aggressively, so I'm careful. No crackers, no french fries (unless DRENCHED in ketchup), gummi bears sparingly - always carry water, and have bottles of eye drops all over the place. (SIGH) I guess I should count my blessings.
Thanks for responding. Dee
Odd...I've had chronic gastritis (they call is GERD now) for the last 10 years now, and chronic sinusitis for about 2-3. It was all of my "itises" put together that made me suspect a systemic illness to begin with. The challenge has been in identify it, and adjusting to the new symptoms. That's for the response.
I think your Rhemy is an idiot. I have Sjogren's and do not show antibodies to it. I do however swell very badly in my salivary glands and have terrible dry eyes and mouth. My biosy was positive. You symptoms sound just like mine....I have days where I wake up feeling like my legs are covered in sand or water. I would find a new doctor. You may have something else too. Sjogrens tends to be a piggy back disease. Your doctor needs to find out what you have. Don't be afraid to look elsewhere if you are not getting what you need. How is you Sed rate and CRP?
Well,I think I fell simillar. Dosn't matter how long I rest I fell even more tired.
I have chronic seborrea, gingivitis, and my dentist told me I have to chek blood. She even ask me do I have Sjogren? !!!
Well, I have been already checked in the past for all spectrum of illnesses but it look I'm perfectly fine (except chronic gastritis and chronic sinusitis).
They told me not to warry-but you probably did heard that story from many of them .Sorry for my English. Good luck