Update... Might Not be Sjogrens Syndrome... Might be FM, LOL...

Discussion in 'Fibromyalgia Main Forum' started by elastigirl, Feb 2, 2006.

  1. elastigirl

    elastigirl New Member

    ... I just got back from my follow-up appointment with my GP. My lab tests from the rheumy (for lupus, Sjogrens, etc.) came back normal.

    The rheumy wrote my doctor a letter (my GP let me read it) that stated he did not think I had FM, although that was still a possibility, and that I probably did not have Sjogrens Syndrome, although that was still a possibility, too. Aaarrgh!

    Oh, well. After a long talk with my doctor discussing many issues (including foot; still sprained, lovely, but at least not broken,) he told me he "agrees to disagree" with the other doctor.

    He still believes -- even more firmly, apparently -- that I do have FM. At least I don't have to wonder if he is riding on the fence anymore :).

    Good news! Though Medicaid stole away my Allegra and replaced it with something that didn't work nearly as well, my doctor insisted that the on-site pharmacy give me generic Allegra in the future. (Turns out this is part of the special coverage offered by my clinic.)

    Next: Even though I was tested for diabetes in mid '05 and came back normal, he wants to retest -- because of my excessive thirst -- and just because it runs in my family -- plus my thirst has worsened lately. Also, being tested for Hepatitis B. No reason for this really, just that they are encouraging adults to get the hepatitis vaccine in addition to children now.

    I forgot to mention to my GP how the rheumy only pressed on my trigger points as gently as you would a child. That really threw me.

    Not being on the worst side of the pain spectrum of FM, what would that prove? I'm sure my rheumy is just trying to separate the really sore FM patients (in active pain) from the would-be fakers, but I do not fake!

    He does not KNOW me. I am down and out with pain and flares at random -- and a flare can last for days! I cannot control when pain will appear and when it won't. I just happened to be having a 'low-pain' day on the day I visited his office. On a 'high-pain' day, a mere brush against a trigger point would hurt. Ugh.

    He should have applied at least a pound of pressure let alone the 9lbs pressure the test requires. Grr!

    Oh, well. I guess this is why people who are in pain part-time instead of full-time start faking it on doctors visits (aka my SIL). But I won't do that. I refuse :(.

    Back to square one? I'm still suspecting Sjogrens no matter what they say. At least what works for the treatment of Sjogrens would help, not hurt :(.
  2. lenasvn

    lenasvn New Member

    he test for Sjogrens? Did he only do the blood test? It can often come out negative, but a lip-biopsy will show a definitive positive- IF you have it. Just curious, I had the same blood test done, but want the biposy done soon.
  3. Alicensk

    Alicensk New Member

    ...my rheumatologist ordered a lip biopsy and that finalized the diagnosis of Sjo. Even lip biopsies don't always confirm it, though, because the bit of salivary gland tissue they snip from inside your lower lip may just happen to show all normal cells.

    I was diagnosed with dry eyes 11 yrs. before any other symptoms popped up in May 2001. I was diagnosed that November, but it takes, on the average, 5-8 yrs. for most women to be correctly diagnosed. I met a woman at a Sjo. conference in April '05 who went from dr. to dr. for 10 yrs. before they figured out what was wrong.

    Rheumies who are well acquainted with Sjo. are more willing to start treatment based on symptoms, without any positive blood test results. Not every Sjo. patient has all the symptoms and that makes the diagnosis tough.

    Dry eyes and dry mouth are the most common ones. I couldn't pass the "cracker test" either, but was diagnosed early and started on Plaquenil. Now I have a lot more saliva.

    Lack of saliva leads to all kinds of dental problems because saliva protects your teeth from bacteria, etc. BTW, I was never as thirsty as you are. I still keep a tube of Oral Balance (OTC gel) by my bed because I do sometimes still wake up with a dry mouth. Before treatment, though, I'd wake up with my tongue stuck to the roof of my mouth -- weird! Now a tube lasts a long time.

    Sjo. is a chronic condition, not a fatal one, and there are varying degrees of severity. I have some aching joints and muscles, but my rheumy says that's from the Sjo., and that I don't have Fibro. Right now I'm taking one Aleve in the morning and one at night to help the aches. I drop the dose when the aches ease up, as they did late last summer, and increase it when they get bad.

    There are all kinds of things you can do to be more comfortable. There are medications, such as Evoxac and Salagen, that stimulate saliva production, for example. As with all medications, some work better for some people than others, of course.

    Whoever suggested you get that handbook from the Sjogrens Syndrome Foundation was right on -- I got it when I was diagnosed in 2001 and found it very helpful. I found the older edition more helpful (by Steven Carsons and Elaine Harris).

    There are a couple of other good ones: "A Body Out of Balance" by Nancy Carteron and "The Sjogrens Syndrome Survival Guide" by Teri Rumpf. I got mine online at Amazon. If you only want to buy one, I recommend the one by Teri Rumpf to start with.

    The handbook I mentioned from the Sjo. Foundation has a chapter of daily living tips. Those alone were worth the $20 I paid for the book.

    You're not alone -- there are lots of us around. I encourage you to do a bit of research and take it to your G.P. Some women get more help from them than from a rheumatologist, sad to say.

    I usually post mostly in a Sjogren's group on Yahoo and check this site only occasionally, so this is a LONG post because I wanted you to have the information. Hope it helps you.

    Alice N.
    [This Message was Edited on 02/04/2006]
  4. elastigirl

    elastigirl New Member

    msmoody -- Thank you for your response. My symptoms have been going on since my son was born in '01. I had no explanation for many years, then I thought I had CFS. However, that did not account for all of the pain I had over these years -- endless days of writhing pain. My GP first suggested Fibromyalgia. Very scary diagnosis, but at least he's helping me instead of ignoring me :).

    lenasvn -- he only did the blood test, not a lip biopsy. If my diabetes test comes back normal, and if my thirst continues to stay this bad, I will press for further testing when I see my GP for a follow-up in April. However, he doesn't seem to think it's Sjogrens. Let us know if you get the biopsy :).

    alicensk -- "Lack of saliva leads to all kinds of dental problems because saliva protects your teeth from bacteria, etc." So true! I've already had to sacrifice one of my two largest chewing molars, now the second one has to go, too. Five years straight of serious dental problems and procedures. I'm afraid I'm going to eventually lose all except my front teeth to this illness, whatever it is :(.

    My excessive thirst seems oddly enough to precede (weird!) and follow any physical activity, no matter how slight. Get up to put a load in the wash -- nope, cannot even think of doing that till I drink 8oz of water. Okay, all set, do a little laundry. Oops! Dying of thirst again, must drink another 8oz before my mouth glues up.

    Very frustrating because I'm wondering what kind of work I could do where I'd be permitted to have 100% access to several water bottles round the clock -- and the same for immediate and round the clock access to the bathroom as a result. I am sincerely disappointed that my GP (although he's very kind and empathetic in most respects) did not take this symptom (excessive thirst) more seriously.

    Thank you for the advice on the books. I'm borrowing some from the library first (they have a great share program with other libraries and colleges) to see which one might help me the most. Money is very tight right now, of course :).
    [This Message was Edited on 02/03/2006]
  5. Alicensk

    Alicensk New Member

    You may be one of those who have both Sjo. and Fibro. The dry mouth could be Sjo. Symptoms of both Sjo. and Fibro are achy muscles and/or joints, and fatigue, though Fibro patients have more 'tender spots.' Treatment is different, however.

    Your excessive thirst does need to be solved. Just keep going back and telling the dr. there's something wrong. If you keep a log for about a week and show it to them, it might help, because you'll have specifics for them rather than just saying you're tired. Example: on a scale of 1 to 10 (with 10 being 'extremely' tired), rate your tiredness in your log each day. It sounds like your thirst is always a "10", however. I hope they can help you soon.

    Alice N.