Wondering if I have Lupus with my FMS?

Discussion in 'Fibromyalgia Main Forum' started by kalley167, Oct 17, 2005.

  1. kalley167

    kalley167 New Member

    Hello everyone . I am in such a state of confusion about all of this. I have been trying to find out what is wrong with me for over a year.
    I have a variety of symptoms. I have been diagnosed with Fibromyalgia, but with my positve blood work it seems there is more.
    I have on my last test a positive ANA 1:320 have had an ANA @ 1:640 ,RF 23 (has been higher). Have been having a poaitive SSB,SSA, C4, But CBC and thiroid are normal. One Rhumey mentioned Sjogren's but I don't present with very dry mouth and eyes. I have allergies they could be from that. But I am sensative to the sun, where I get rashes, and I never used to be, my cheeks get a small rash on them and are always red and across my nose even without the rash, I guess it looks like the butterfly I read about, but its not a sever rash. I also have a discoloration that appeared last year over my top lip , I hate it as it looks like I have a mustache whithout hair. I cover it well with make up. I have extreme fatigue at times, run a low grade fever and experience flu like symptoms often, IBS, fingers turn kind of blue and painful if exposed to cold even in cold hamburger. I feel sometimes as if I can't remember simple things or just can't think right like I am in a fog. Joint pain was the reason I went to the doctor in June 2004. I hurt everywhere, I am only 38 and felt alot older. Many more little things that happen to me.
    But I hate feeling so lost, I will be seeing my 3rd Rhumey at the end of October as PCP doesn't feel this last one is checking enough. It has been so frustrating. But I thought maybe someone could tell me if it sounds like Lupus? I know many people have asked this and I know you aren't doctors but I no someone has been where I am right now and you know it helps to hear from people who have been there. Thank you for your help and support. K
  2. Tigger57

    Tigger57 New Member

    I'm waiting right now to hear from my doctor on what my bloodwork looks like. I had it drawn, but haven't gotten the results back.

    I had to chuckle when you said about your hands in the hamburger... boy can I relate to that one. I couldn't even handle it when I was a teenager.

    I get the rashes from sun too and I just don't know what is going on with me lately.

    I hope you can get some of it straighted out soon and feel better.
  3. aquabugs

    aquabugs New Member

    I was diagnosed with Sjogren's Syndrome about 5 yrs ago. It started with fatigue, then aches and pain everywhere. I developed the cold hands and feet (Raynaud's phenomenon). I began to have a myriad of other odd little symptoms as well. My dry eyes were the last thing I noticed and only became extremely dry within the last year. Actually, my eyes have been slightly dry for years but they had been that way for so long I didn't realize it wasn't normal. I blew it off as allergies and such until it got really severe this past year. I am now on Restasis for my eyes and it has been an amazing drug for me. I still only have a very slight problem with dry mouth.

    Sjogren's is an automimmune disease sort of a cousin to and more common than lupus. Many of the symptoms can be like lupus or other AI diseases. It can be plenty serious itself and is hard to diagnose as lupus. Don't let any doctor blow it off as "just dryness." I've developed FMS and perhaps CFIDS on top of the Sjogren's, so it's hard to tell where my debilitating fatigue and pain comes from.

    I wish you luck with your rheumy and hope it isn't anything too serious.

    Take care

    [This Message was Edited on 10/17/2005]
    [This Message was Edited on 10/17/2005]
  4. JLH

    JLH New Member

    I have lupus, and it sounds as if you do too.

    Here is some info on lupus that you might want to read:


    Lupus Symptoms List


    Percentage Symptom

    95% Achy joints (arthralgia)
    90% Fever over 100 degrees F (38 degrees C)
    81% Prolonged or extreme fatigue
    90% Arthritis (swollen joints)
    74% Skin Rashes
    71% Anemia
    50% Kidney Involvement
    45% Pain in the chest on deep breathing (pleurisy)
    42% Butterfly-shaped rash across the cheeks and nose
    30% Sun or light sensitivity (photosensitivity)
    27% Hair loss
    17% Raynaud's phenomenon (fingers turning white and/or blue in the cold)
    15% Seizures
    12% Mouth or nose ulcers


    Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose.

    Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.
    Currently, there is no single laboratory test that can determine whether a person has lupus or not.

    To assist the physician in the diagnosis of lupus, the American Rheumatism Association issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.

    TABLE 2


    Criterion Definition:

    • Malar Rash
    Rash over the cheeks
    Discoid Rash
    Red raised patches

    • Photosensitivity
    Reaction to sunlight, resulting in the development of or increase in skin rash

    • Oral Ulcers
    Ulcers in the nose or mouth, usually painless

    • Arthritis
    Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

    • Serositis

    • Pleuritis or pericarditis

    • Renal Disorder
    Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

    • Neurologic

    • Seizures
    (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

    • Hematologic
    Hemolytic anemia or leukopenia (white bloodcount below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    • Immunologic
    Positive LE prep test, positive anti-DNA test positive anti-Sm test or false positive syphilis test (VDRL).
    Positive test for antinuclear antibodies in the absence of drugs known to induce it.

    Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25:

  5. kalley167

    kalley167 New Member

    I go see my new Rhumey Oct 31 and I will discuss this over with her. I appreciate your help. I hope I will have some answers this year.
  6. lurkernomore

    lurkernomore New Member

    I am reading all this with great interest as so many of these things seem to apply to me as well and I have been thinking of asking my rheumy to do further testing. But one thing in particular has me puzzled so I thought "what better place than here to ask" in hopes of getting a better answer. So here's my question. Do any of you who have been dx'd with either Sjogren's or Lupus ever have eyes which will be dry for most of the time and then, on some days, just pour water for a little bit of time? To me, this seems more like allergies, and I'd rather think it is, but I have no other symptoms of allergies and have never been bothered by allergies at all. So can the eyes play tricks like that with Lupus or Sjogren's? Any advice is greatly appreciated! (I do have a lot of the other sx's listed for Lupus and this is why I am asking.)
  7. kalley167

    kalley167 New Member

    burn and water at times, but I also tend to agree that it is allergies. My PCP seems to think that if I had SS they would have repeated infections and be red alot and I don't have that. But I do believe from what I have read about SS on a support forum it can vary.
    But again I am in the same boat as wondering what it really is.
  8. lbok

    lbok New Member

    I was surprised when I was told I had chronic dry eye when the main issue (I thought) was that my eyes would start pouring when I went outside. The sun, wind or cold would hit my eyes and they would just run and it looked like I was crying. It was embarrassing when I would go the bus stop when my daughter was in Kindergarden - I would be talking to someone and my eyes would start running. I just had gotten so used to the dry eyes for so long that the redness and scratchiness was not that noticeable. It is dangerous while driving though because you can't see. I think it has something to do with the lack of oil so your eyes try to produce something like incomplete tears to make up for it. So - yes you can have very dry eye and have them run with tears - it's just not the right kind of mixture to keep your eyes moist.

  9. kalley167

    kalley167 New Member

    I have been standing outside talking to someone and the wind will cause mine to water also. I guess I always felt it wasn't because they are dry. But I can not wear contacts due to them drying out. I hate having to wear glasses but no choice. And I undersatnd feeling embarrased when they water at stringe times.
  10. lbok

    lbok New Member

    And I am very nearsighted. I wore them for years though when I was real young until I developed an ulcer. I tried a while ago to get fitted for them again but it did not work out. Besides major irritation I ended up with a big red blotch so that looked cool. I guess with dry eye and contacts its a matter of when an infection will occur - even if you are careful. There just isn't enough coating to protect the eye.
  11. aquabugs

    aquabugs New Member

    As I mentioned previously, I have a diagnosis of Sjogren's Syndrome. Even though I have extremely dry eyes without medication, I will on occasion have tears running from my eyes for no good reason, but not real often. The wind doesn't do that to me, it just dries me out worse, as does air conditioning. I have some allergies as well, and that probably contributes to the eye watering episodes.

    Whether it's lupus or Sjogren's or something else, your specialist is the only one that can make that call. The symptom list for Sjogren's and lupus are extremely similar and the two can even overlap. As a matter of fact, just looking at the lupus list above, at LEAST 10 or more of those are also Sjogren's Symptoms that I have. It's just that lupus is more well known than Sjogren's! I even have a rash that I would swear is a malar rash, but two rheumies and a dermatologist say it isn't. In addition, I am sun-sensitive and suffer odd rashes from time to time. So, it isn't so easy to tell. Just don't get alarmed and convinced you have a serious illness without medical confirmation. There are several things that can cause the symptoms you describe.

    Good luck and I hope all goes well for you.
    [This Message was Edited on 10/18/2005]

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