Rheumy thinks may be lupus or RA with my fibro??!!

Discussion in 'Fibromyalgia Main Forum' started by CanDo_Brandy, Sep 21, 2005.

  1. CanDo_Brandy

    CanDo_Brandy New Member

    Hi all! I have been diagnosed w/fibro for 4 years, had symptoms for 5, after birth of my daughter. Anyway, for disability appeal reasons, went to see rheumy for a current diagnosis of fibro, and he says he thinks I may have lupus or RA w/ my fibro. I'm kind of depressed right now. I've been through all this before when I was 1st diagnosed. I've accepted fibro, nowmaybe something differant? Arrghh! Please don't do this to me! The rheumy says I have inflammation in my feet and hands, knuckles, am getting xrays Friday, he tok bloodwork today. I see him again Oct.5th. He says I def have fibro, but other symptoms also indicate the other. I don'tknow.I mean, when I go in the sun, or am very active, I get a rash on my face, neck arms and legs. My knees are killing me, feet and ankles feel broken, so do my hands and wrists. Are these symptoms associated w/ fibromyalgia??? If anyone can give me some input, I would appreciate it greatly! Oh, am a stay at home Mommy of 2. Daughter 5yrs - Promise, son 8yrs - Tristan, they are the love of my life! Hubby is great too, but my children just have me wrapped around their little fingers *smiles*! I am 31 yrs old, first had symptoms at age 26. Thank you SOOOO much!!
    Brandy

  2. fivesue

    fivesue New Member

    I'm so sorry for all your health problems. I really pray that the blood test will be negative as that would create more problems. The rash in the sun on the face is consistent with lupus, but I don't know if it is something else...like a reaction to a med.

    How wonderful to have those two darling little tots! I'm so happy for you, and so happy also that you have a wonderful husband. Please let us know what happens?

    Take care of yourself, and enjoy each day with those darling children.

    Hugs,
    Sue
  3. JLH

    JLH New Member

    Hi Brandy, I am sorry that you are feely so bad, especially since you have 2 youngs ones at home to take care of!

    With all the inflammation in your body and the fact that when you are out in the sun that you get a rash on your face, neck, etc., it does sound a lot like Lupus.

    Here is some FYI Stuff about Lupus for you to read, if you are interested:

    SYMPTOMS OF LUPUS
    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


    Diagnosis

    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.

    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.

    THE ELEVEN CRITERIA USED FOR THE DIAGNOSIS OF LUPUS

    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:

  4. CanDo_Brandy

    CanDo_Brandy New Member

    Thanks for writing back, guys. I think somewhat for me, it's the thought that I've been thinking of all these symptoms I have had that I've chalked up to not meaning anything, and now after talking to rheumy, am thinking, hey, maybe it is lupus also, and then will come to find out I DON'T have it, and will be found out to be just a hypochondriac! I mean, I do have swollen ahnds and feet, my knees and several other joints have horrible pain, the light rash on my face, and when in the sun, the rash that goes on my arms and legs and neck. But, I've read about a fibromyalgia rash too? I do get where it hurts to breathe, where sometimes it feels like my chest is being crushed, I've always thought it was because my shoulders hurt so much, where it even hurt to breathe. Thought, oh that's the fibro pain there in my shoulders. So, we will see. I have x rays taken tomorrow, and see the rheumy again Oct 5th. I was going to the rheumy for disability reasons, and also to see about carpal tunnel syndrome surgery. My hands are absolutely KILLING me! Now, surgery is on the back burner because he wants to see if I have other things besides fibro. But, it's okay, God will see me through this. God is still good, all the time!
    Brandy
  5. cozykitten

    cozykitten New Member

    Hi Brandy,,
    I was DX with Lupus 3 years ago. My first symptoms were the terrible joint pain, especially in my hands. And I do swell a lot. You dont have to have all the symptoms to have Lupus. These autoimmune diseases all cross over so much, that it is hard to tell sometimes. I have never had the rashes like yours, but that is a very classic symptom. I have seen someone who has a Lupus reaction to being in the sun too long and they looked like they had been terribly burned! So stay out of the sun...plus it makes your joints hurt more. There is some pretty good medication for Lupus, so it does not have to go to your kidneys or heart. Mine are ok. The main thing I have found with Lupus, if REST. When you are tired, REST, dont continue to push yourself or you wont get out of bed the next day. LIsten very carefully to your body and it will tell you when you have had enough.
    Good luck and let us know.
    Kay
  6. tjlibby

    tjlibby New Member

    If you have you have it and at least you can get the correct treatment. TJ
  7. dononagin

    dononagin New Member

    Don't sweat it yet till you get the results back.. They have been testing me for Lupus for 10 years now! I was diagnosed CFIDS 10 years ago.. Now they just sent me to a new rhumie last week after my blood tests came back out of speck and he's like no.. you have cfs/fibro.. I have colitis, another auto immune disease and it effects my blood tests.. and I do have alot of the symptoms of lupus (including rashes.. me too..) but it's not.. The doctors have had me convinced over and over that I must have it.. I don't.. Patiently wait for the results.. if they do turn out positive, cross that bridge when you get to it.. I'll be wishing you the best..
    Hugs!
    dona
  8. hidlyn

    hidlyn New Member

    Hello. I've only been tested for lupus once by a family doctor who wasn't very helpful in the first place. That was about 6 1/2 years ago. I thought that it could be completely diagnosed with a blood test. Apparently from some of the responses that's not necessarily the only thing they need to look at. I too have developed photosensitivity over the last two years. I only have to have my arm in the sun while driving (through the window - not opened) for 20 minutes before it starts to form a splotchy red rash that burns and itches at the same time. I get it on my chest and face too. I had to completely stay out of the sun this summer and sunscreen barely helped.

    The swelling in my feet and ankle can get bad too and my knees haven't swollen for a long time, but they have in the past. I have a lot of pain in my fingers, elbows, wrists, back, and hips. I would have to say overall my feet have been the worst in some ways.

    I'm eager to see what happens for you and I hope you do not have it. I too had the worst of my symptoms hit at 26 and it just plain sucks to be young and sick. You've prompted me though to look into getting a rheumy who can try to take care of me. I'm not sure where to start though. We'll see.

    Take care and let us know.

    Heidi