I'm back ... Might be Sjogrens Syndrome (lab results back)

Discussion in 'Fibromyalgia Main Forum' started by elastigirl, Dec 30, 2005.

  1. elastigirl

    elastigirl New Member

    Christmas went off without a hitch afterall, so I came back home and had my first appointment with my rheumy on the 29th. I was having a low-pain day and was even alert having gone to bed extra-early just for this appointment.

    I went in with an open mind. I didn't tell the rheumy of my suspicion of CFS, nor my doctor's suspicion of FM (that was on the fax-over records though.) I told the doctor upfront that I have good days and bad. Today was a low-pain day, but on a high-pain day, everything hurts.

    He questioned me then gave me an exam. This guy was so shy! I put on the extra-long hospital gown they provided. It basically went down way over my knees and then my socks covered the rest. Yet he still asked me to put a piece of paper over my knees, LOL! My undergarments were on, too! (But he did do a quick check to verify my c-section claim, ugh.)

    Any way, he didn't put pressure on the tender points the way my GP did. In fact, he pushed as gently as you might on a child. I wondered silently what that could tell him, if he wasn't applying nine pounds pressure, etc.? But he's said to be good with FM patients, so I kept my thoughts to myself.

    He told me after the exam that I didn't "look" like a typical FM patient. He said something did surprise him, though. He had asked me if I could eat a saltine without water, and I said no. (It's virtually impossible for me to eat anything without water.)

    He had asked more questions about thirst and dry eye symptoms, and I told him how I have to drink water all day long, and how I had to stop wearing contact lenses because my eyes were so dry and itchy all the time. Drinking all that water means I have to constantly hit the bathroom, no matter how inconvenient.

    I did have some pain at some tender points, plus I explained my typical regions of pain, and that I've had endless dental problems since this all started.

    At the end of my appointment he said, he suspects Sjogrens Syndrome. He said he thought I had "spasms" of pain, but not probably not FM.

    Because my clinic messed up and forget to fax the labs with my records, he said he would need to review those then get back with me.

    So there you go. It might not be FM afterall. I'm thinking Sjogrens must share some symptoms of CFS/FM. But in a way, I think I'd be happier knowing the definite condition underlying my symptoms. Then we could really start a treatment plan, if there is one that is.

    The rheumy did say he wanted me off Elavil because it's drying to the mouth, and he wants me to try a different med. I can pick up the script on Tuesday (my clinic is closed till then.)

    Do many members here have Sjogrens?
    [This Message was Edited on 02/01/2006]
  2. roseylisa

    roseylisa New Member

    Sounds to me like you have both fm and sj many people do. If you don't go into a rhumey in alot of pain they will dismiss fm even though we know how it flucuates even the tender points. I would get another opinion. I went to four drs before my fm was diagnosed two were rhumeys.
    [This Message was Edited on 12/31/2005]
  3. toronto133

    toronto133 New Member

    I have similar symptoms to yours, including the red eyes and difficulty swallowing and the rheumatolgist thought that I had it. However blood tests did not support Sjogrens.

    In reading back through some posts, somebody said that their blood tests also did not show Sjogrens but that their rheumatologist diagnosed based on clinical symptoms not just blood tests.

    Good luck with your treatment.

  4. IntuneJune

    IntuneJune New Member

    Again, you have to weigh the pros and cons of meds. The popular one out there now has GI side effects and of course like many FMSers, I have irritable bowel disease and choose NOT to mess with that, because I have it under fairly good control.

    The rheumy was not pleased I would not try the med though, (???? why).

    Fondly, June
  5. lbok

    lbok New Member

    Some diagnosis are based on clinical observation - not just antibody tests. Like some people will have every symptom of RA yet say they were negative for the antibody so they don't have it. Antibodies tell only part of the picture and can be helpful in the determination, but don't tell everything. My mom is RA negative but has had it for years.
  6. elastigirl

    elastigirl New Member

    I just received a note from his office that he reveiwed my labs and wants me to have further testing. I know that this is probably nothing to be worried about, but after being brushed off and having to !beg! to get labs done over the past few months, it's a little scary having a doctor say I !want! to test you.

    Is Sjogrens a serious condition? I looked at the website, but it was very brief. Mentione organ damage, but just mentioned it, no real insight to why it happens -- or how serious this might be. Then I clicked on a link to an article about someone with Sjogrens -- they were confined to a wheelchair! Scary stuff.

    I'm a little less thirsty since he switched me from Elavil to Trazodone (sp?), but if I still have to have water by my side every minute, especially if I'm trying to do anything physical like housework.

    My dentist said I didn't have the typical gum problems with people with dry mouth -- but that didn't suprise me -- I'm drinking water non-stop ;).
  7. pepper

    pepper New Member

    for several years and she functions at a much higher level than I ever have with CFS/FM. Her FM is mild and the Sjogrens seems to just cause her the discomfort of dry eyes and dry mouth.

    I suspect that it is like the other autoimmune conditions in that the range of severity is great. Hopefully yours will not be that serious.

  8. springrose22

    springrose22 New Member

    that I probably wouldn't count on this rheumy's opinion too much. There was a post on here last week or so, and the general consensus was that rheumies were, for the most part, useless. Marie
  9. lbok

    lbok New Member

    It varies (or has a spectrum) just like many other disorders. Some people may be only mildly affected and others have more serious involvement.
  10. rockinrobin

    rockinrobin New Member

    I was diagnosed w/ sjogrens approx 8 yrs ago, but I know I had it a while before that, just didn't know what it was. I have had fibro about18 yrs. It's very common for fibro patients to also have this. You may develop GERD due to no moisture in your upper GI tract. It is a progressive disease in that the moisture producing glands are degenerating. You may have not only dry eyes, nose, skin, hair, mouth, vagina, etc, it can cause internal organs to also "dry", however this is rare, so do NOT become freaked out! You are more at risk for dental caries. It's mostly an inconvenience because you need to have water w/ you always along w/ sugarfree candy/ gum. this will help stimulate the saliva. Use saline spray several x a day up nose, & use a humidifier at night, drops for eyes. A good one is GenTeal Gel, get the severe formula. keep the humidifier on during the day . I developed interstitial cystitis because my bladder lining was thinning due to the lack of moisture, so you could get this, however, that is also common in fibro people. Go to the Sjogrens syndrome foundation on web & order their book. Very helpful, & tells you what to look for as far as complications, symptoms, etc. & how to deal w/ it. It gives great advice, & about products.Hope this helps. Good luck! PS you do NOT have to have positive ANA to have this, because all my tests were negative. They went off symptoms, but my eye test did come out positive.
    [This Message was Edited on 01/06/2006]
  11. Kacjac

    Kacjac New Member

    Is it a blood test?
    This is very intersting!
    I want to find out about it, my dry eyes, skin, and mouth, are driving me crazy, but I wish my sinus/ post nasal drip would dry up. TIA~Karen
    [This Message was Edited on 01/06/2006]
  12. rockinrobin

    rockinrobin New Member

    There are blood tests they can do, checking for ANA, sed rates, & others. Just can't remember all the technical names. Your opthamologist can do an eye moisture test-they put drops in the eye, then see how dry the test strip of paper is, & how often you blink. A normal eye should be around 5-6 for moisture, mine was a 1 or 2, which is considered severe dry eye. I have punctal plugs in (they keep what moisture you DO have in the eye), & I also use Restasis, a prescription drop for imflammation. Works well, because I had bright red sore blood vessels in left eye till I started on it. your Rheumy can also do a lip biopsy. I didn't need one. They can also put a tongue depressor in your cheek & see if it stays put on it's own. If you have dry mouth, it will. They also ask if you think you could eat a cracker w/out having a drink afterward. This is called the "cracker sign" test. S.S also causes joint pain & severe fatigue, which has bothered me more this year than before, & I'm not even working outside the home. Just doing housework does it for me, but my hubby is great about helping out when I need it. Any more ?, I'll try my best to answer :) Later! Oh, almost forgot. They do have 2 new meds out that can help produce saliva. I can't remember the names. I tried it, & couldn't tolerate. Causes severe sweating, & stomach pain/cramping.The dryness was better to deal with!
    [This Message was Edited on 01/06/2006]
    [This Message was Edited on 01/06/2006]
  13. elastigirl

    elastigirl New Member

    These are the tests from his lab slip:

    anti-SS-A (Ro)
    anti-SS-B (la)

    I have no idea what the last two are about. I had the ANA test done before -- I tested positive at 120, but apparently 120 is the lowest number for testing positive -- at least that's what the nurse on the phone told me. Is this correct?

    My errands ran late on Friday, and I did not have time to call the Physicians Group before they closed. Will call back on Monday to set up my lab appointment and follow-up with any results.

    My eyes are dry most of the time, that may account for why sometimes it feels like a hair or an eyelash has fallen into my eye -- but upon inspection, nothing is there. My mouth gets very dry, but I don't just live with it. I drink lots and lots of water. It's not uncommonn for me to have to visit a bathroom twice in one trip when I'm out shopping. So -- I wonder -- will all that hydration affect dry mouth tests?

    I'm sensitive to some fragranced products, but not all. I notice that when I'm sick or fatigued, walking through the laundry aisle at the store can make me whoozy and my eyes itchy. However, I can use frangranced laundry products at home without a problem, though sometimes I have to put scented dryer sheets in to a ziploc bag.

    I'm thinking -- given the above -- that my symptoms are probably on the mild end. Either way, catching what's wrong with me early in the game (five years in!) would be better than just ignoring it and living with the symptoms as is -- like so many doctors wanted me too. I guess we'll see what happens over time.
  14. Scarlett65

    Scarlett65 New Member

    The only thing it really bothers me is my teeth. Apparently the secretions are not there that protect them so you need to have them checked like every few months.
  15. elastigirl

    elastigirl New Member

    My teeth went to heck after I had my c-section. I had my wisdom teeth pulled, two root canals, and much more. My teeth kept cracking apart! So I have part real teeth/part build-ups from different dentists.

    Right now, I need a bridge, another root canal, a filling, old fillings removed and replaced (they have open "contacts" so food is getting in there and causing more problems -- not something I can correct with burshing or flossing.)

    Basically, my mouth has been in virtually non-stop pain for nearly five years. I do get some relief from antibiotics, but it's short lived. Sensitive teeth toothpaste helps, too.

    So if my (most recent in a long string) dentist says I don't show consequences to my gums from dry mouth (I'm also high-risk for developing gingivitis -- have early signs) -- I don't know what planet she's living on :(.

    I am going in to see her again this week for a follow-up. I really want to hash out some of my feelings about this stuff -- especially the procedures she's recommending. Ugh, dentists.
    [This Message was Edited on 01/08/2006]
  16. rockinrobin

    rockinrobin New Member

    Hi, I forgot to mention that you might try a dentist prescribed fluoride treatment. I use the brand "Just For Kids", that I get directly from my dentist. It runs around $8 a bottle, but will last a couple months. It comes in several flavors like punch, grape, & bubble gum. It is MUCH stronger than the adult variety, & helps me immensely w/ sensitivity & gum pain. My dentist told me to use at night before bed, but I try to use in the AM also. I have not had a cavity in a year, which is great for me. My gums do not bleed anymore either. Hope you can try this. Wish you luck!
  17. elastigirl

    elastigirl New Member

    I know that there's been a lot of debate about whether fluoride might be causing some of our health problems. But I was a child that grew up on well-water (no fluroide) and had very infrequent fluoride treatments at the dentist.

    I had tons of cavities as a child -- despite moving to brushing my teeth three times a day (even after lunch at school) after a painful dental experience. No help, I had several new cavities at my next dentist appointment. My teeth seem to have no natural resistance to cavities. Not surprising given the history of my parents' teeth.

    Now I've lived for two years in a city that doesn't add fluoride to their water system. Thus, the open contacts? They weren't there on my last cleaning, but on my most recent cleaning, there they were.

    Will definitely ask about the fluoride treatment. Thanks for the tip :).
  18. kalley167

    kalley167 New Member

    I was diagnosed with SS last January, but they have since decided I have Mixed Connective Tissue Disorder or they think I am in the early stages of lupus, which can include SS. I am not the typical one I don't have the dry mouth and eyes but I test positive for it. Which the MCTD explains that. Anyways there is a wonderful forum on MSN for Sjogrens and also check out the Sjogrens foundation site. You can join for I think $35.00 and they send you a wonderful newsletter called moisture seelers that helps with the dryness. And I have rec'd samples also.
    Some of the symptoms do mimic chronic fatigue and Fms, I have definitly been diagnosed with FMS, which you could very well have along with the SS. They seem to go hand and hand at times. But get more than one opinion a mis diagnoses can be bad. It took me three Rhumeys before I got anywhere.
  19. kalley167

    kalley167 New Member

    for elastigirl
  20. elastigirl

    elastigirl New Member

    Well, it looks I'll be getting my labs done in the next couple of days. I'm almost glad -- in a sad way -- that I've been in such an awful flare since my dentist appointment. Maybe it will help my tests more accurately reflect how I am on a "high-pain" day.

    I'm really interested in pursuing research on Sjogrens -- but the same time hesitant. I felt a little foolish when the rheumy implied (come to think it, he didn't state it as fact) that I did not have FM. I've thought -that's- what I've had since my GP gave me an initial dx way back in September. Thank you for all of the great info, though. My labs should be back soon after I get the blood drawn this week :).