How Many Of Us Aren't Sure If We Have Lupus?

Discussion in 'Fibromyalgia Main Forum' started by moab341, Mar 29, 2007.

  1. moab341

    moab341 New Member

    My question is this.

    I am wondering how many on here started out with a diagnosis of FM who's test results did not warrent a diagnosis of Lupus, only later to develop the disease?

    I know so many on here have had FM for years without developing Lupus, but I was wanting to hear from those that had and how it developed.

    I am so hoping I don't ever develop it, but I thought asking some questions in here might help ease my mind.

  2. maee16

    maee16 New Member

    Hi, I go to a neurologist that tested me for Lupus and MS. I have blood work done regularly and had other tests to rule out others. My Mom had LUPUS, and other family members. Lupus is hard to detect also. It has alot of the same symptoms as Fibromyalgia, that is what frightens me.
    My Mom really suffered with Lupus, I miss her so. I had a spinal tap to see if I could have MS, I hope I NEVER have to have another one, I will refuse. Blood tests for Lupus does not always detect it. There are many things the doctor has to order for the blood test, and the patient has to be having a severely bad day, or relapse for the blood work to show the patients has Lupus. Also CAT Scans, or MRI's of the brain tell alot. I have had so many different tests and still the doctor is always ordering more, and blood tests. But so far I am told I have severe Fibromyalgia, CFS, RSD of the right side and A torn rotator cuff, that is inopererable. I live with pain everyday, but I keep going. I won't give in to this illness. I try my best, I had to learn how to PACE myself, its not easy, but I try. And I hope that someday, someone will come up with a cure or the right medication for all who suffer with Fibro. Take Care and Hugs to You. Maee
    [This Message was Edited on 03/29/2007]
  3. mgmarble

    mgmarble New Member

    I think I could have lupus because NO meds help me but predisone. My ankles and hands swell, I keep getting a weird rash on my arms and the list goes on. I go to my doctor AGAIN to see what my blood work shows on Monday.
  4. jodboga

    jodboga New Member

    I have Ra , Fm , degenertive disk disease , depression , injury to l-4 l-5 s-1 . I get mouth and nose sores on a regular basis , I thought a Dermatologists can tell if you have Lupus but mine said that is what I have a rheumatologist for .Pain all the time , I live on pain pills and sleep a lot .
    [This Message was Edited on 03/29/2007]
    [This Message was Edited on 03/29/2007]
  5. Engel

    Engel New Member

    I am ready to give up on DRs ... I don't think they even care to find out what is wrong with me :-( . One would think that a good DR would test blood for any possible disease ... order appropriate tests (MRI etc). I give up. I shouldn't have to telllllllllll a DR what to test for.
  6. liz52

    liz52 Member

    I have fibromyalgia my siser has Lupus and was told a few months a go she has fibromyalgia too.We have all the same
    symtoms.I have been tested several times for Lupus but it
    hasnt shown up in my blood work.I have cousins who have fibromyalgia but who hasnt got a diagnosis of Lupus.So it does make you wonder.

  7. jaltair

    jaltair New Member

    I was first dx'd with FMS then with CFS, and a year ago this past Feb. I had a dx of lupus after my ANA was elevated and I was positive for anti-DNA antibodies.

    FMS and lupus are separate diagnoses, and you can have FMS as well lupus, or lupus alone, or FMS alone. Those that develop lupus will have many symptoms similar to FMS before their diagnosis, but may never have the needed "tender spots." Some with FMS may never develop lupus as blood tests remain negative.

    One interesting idea is that FMS and CFS are the same but with different manifestations; i.e., CFS doesn't cause the muscle pain or demonstrate tender points. The tender points are the key for the FMS.

    Some with lupus never have tender points; therefore, they don't have and never have had FMS.

    The key for FMS = tender points / and lupus = blood tests showing positive labs for lupus or other autoimmune disorders.

    I know how frustrating it is to have a health problem with seemingly no diagnostic criteria other than tender points, and how frustrating it is to go to doctors who aren't familiar with FMS or CFS, and how frustrating it is to try to explain the problems to friends who roll their eyes at the acronyms of FMS and CFS. It's not much different after a diagnosis of lupus, believe me. In addition, with the diagnosis you have the worries of organ failure and effects of the devastating drugs needed to control the disease.

    Be glad that your lab work is normal if that's the case.

    I'm including information from the American College of Rheumatology's criteria:

    Criteria for Diagnoses of Lupus

    The American College of Rheumatology have developed criteria for diagnosing lupus - just as they have for diagnosing fibromyalgia. To have a definite diagnosis of lupus you must have 4 or more of the following features:

    Malar rash: Fixed erythema over cheeks but sparing nose-cheek folds

    Discoid rash: Raised red patches with scarring in older lesions

    Photosensitivity: Skin rash as a result of unusual reaction to sunlight

    Mouth ulcers: Oral or nasal ulcers - must be observed by a physician

    Arthritis: Tenderness and swelling in at least 2 joints observed by a physician

    Serositis - Either:
    1. Pleurisy on examination by a physician or Xray changes or
    2. Pericarditis noted by a physician or ECG changes

    Kidney disease:
    1. Persistent protein in the urine of 0.5 grams or more or
    2. Cellular casts (maybe red cells, white cells or hemoglobin)

    Blood disease: One of the 4 following:

    1. Hemolytic anemia with reticulocytosis
    2. Leukopenia with a white cell count of less than 4,000/mm2
    3. Lymphopenia with a lymphocyte count of less than 1,500/mm2
    4. Thrombocytopenia with a platelet count of less that 100,000/mm2

    Brain disease - Either:
    1. Psychosis or
    2. Seizures.
    Both must be without other causes

    Lab Tests to Verify the Diagnosis:

    1. Positive ANA

    2. An abnormal titer of an anti-nuclear antibody (ANA) test in the absence of other diseases or drugs known to cause a positive ANA.

    3. Other antibodies - Any one of these 4 tests:

    a. A positive LE cell preparation
    b. A positive test for anti-DNA antibodies
    c. A positive test for the Sm nuclear antigen
    d. A false positive for syphilis

    I hope this clarifies things a bit.


  8. JLH

    JLH New Member

    I have fibro as well as systemic lupus. Lupus has many of the same symptoms as fibro, but also has major organ involvement--such as in the kidneys, brain, heart, etc.

    I was ready to provide the same info that jaltair just posted in her reply!

    If you think there is a chance that you may also have lupus, talk with your Rheumatologist on your next visit, or have your GP make an appt. with a Rheumy for you.

  9. bunnyfluff

    bunnyfluff Member

    I started out with FMS, now have CFS ( I have auto-immune problems), now I have Pericarditis, and an immune system out of control. I think it will be a few more years before I know for sure.
  10. moab341

    moab341 New Member

    I am not alone.
    I don't have Lupus or Mixed Connective Tissue Disease now as the only things that came back positive were my ANA and the RNP blood tests.
    There's a chance the ANA could be drug induced as I've been on a high dose a Neurontin for 6 years and was having bad side effects.
    I am off of it now, and can't tolerate Lyrica either, so basically I'm not on anything.

    My Rheumy convinced me that my symptoms are that of FM, not Lupus.
    I am all too happy to except that diagnosis, as I surley don't want an autoimmune disease on top of FM.

    I am having a Lupus anticoagulant blood test next week.
    It actually is not a test for Lupus, it tests your blood to see it you are likely to develop blood clots. They really don't even know why it's called Lupus anticoagulant, and think the name can be decieving.
    Seems to me, that should be a standard blood test with yearly check-ups since blood clots are serious stuff.
    People with Lupus CAN test positive, but so can people without Lupus.

    We will watch my blood tests to see if changes occur and I am doing all I can to help my FM by eating organic food, exercising as much as I can and reading as much info as I can find on it.
    I've also started a vitamin regimen and probiotics.
    I'm feeling better than I have in a while and I'm wondering if it's because I'm off the neurontin or I'm just going through a good time. With FM, time is the only thing that tells.
    We start believing we don't really have it until the next flare and then we don't think we'll ever feel good again.
    It's a vicious circle.
    Thank you all for your input....I love this board!! I don't know what I did before my boyfriend discovered it....I was in the dark about a lot of things and had a lot less support! God bless, Roni
  11. tandy

    tandy New Member

    but never comfirmed.
    I've had Fibro for many yrs.(14)

    at times things indicate something more than FM.
    I'm kinda in the "lets wait and see what happens" for both Lupus and RA.
    High sed rate alot,... and one time an odd rash on my back. Mild swellings of feet & hands.(especially in mornings)
    and too many nose sores and inside my mouth occasionally.
    I have severe dry mouth too.

    Wsih I had more answers~
  12. moab341

    moab341 New Member

    I wish we all had answers:(

    I am learning through all of this though.
    Learning how precious each good day is, and to not take good health for granted.

    Our bodies may seem weak and broken, but inside I believe we are some of the strongest people there are because of what we endure.

    I will never give up hope, and I wish that for everyone on this board also. ROni

  13. roge

    roge Member

    someone mentioned CFS doesn't cause muscle pain??, maybe for some but it certainly does for many others and why as i have stated prior that I believe CFS and FM are one in the same with different manifestations.

    anyway, I have always suspected I might have Lupus. I have Lympopenia (900 well below 1,500 cut off), just found out positive anti - cardiolipin although in 2003 low values though so not sure how significant this is (I am going to post this separately later), get rashes from sun, sores/cracks in my nose (dont know if they are ulcers), have myoclonic jerks that certainly feel seizure like), and of course the pain and fatigue. ANA was negative, last time tested was 1.5 yrs ago. I believe with what I listed I should see a Rheumatoligist again cause last time was 2003 and I have had a lot of new symptoms since late 2004. I definitely will get another ANA soon and I am going to ask for another anti cardiolipin and other anti- dna and anti-ena tests and a lupus anticoagulant.

    Of course I hope I don't have Lupus, but I need to know.

  14. dononagin

    dononagin New Member

    I've been tested over and over as so many of my symptoms fit.. but my ANA is always negative, my RH is slightly high.. The rest of my labs are pretty normal. I've had though I think either 5 or 6 ANA tests though. Pretty much everytime I go to a new doctor thats the first thing they think as of course "fibro and CFS" are syndromes....

    Jaltair- Hi Neighbor! Great explanation!

    Hugs to all..
  15. Sandyz

    Sandyz New Member

    3 or 4 doctors have told me I possibly have lupus. It hasn`t showed up on any tests yet however. Predisone is really the only drug that helps me too.

    [This Message was Edited on 03/31/2007]
  16. Bunchy

    Bunchy New Member

    I recently had bloodwork which showed positive ANA and positive RF - will be re-tested this month and if still positive, doc will do further tests!

    Also had high sed rate for 3 years (almost normal now I am in a better phase) and several years ago, had a positive anti-smooth muscle antibody test (doc said "not significant" - well why test then?...LOL)

    What does all this mean???

    Well the docs don't have a clue and neither do I.

    Love Bunchy xx
  17. moab341

    moab341 New Member

    Yes, I've had other blood tests.
    The C3 and C4 were fine, and I don't have any Lupus rashes, nose or mouth sores, etc.

    I'm having a Lupus anti-coagulant blood test tomorrow, but have a feeling it will be negative which is fine with me.
    It was like my Dr. just thought of one more blood test to run, but I don't mind. Some people have a rough time getting their Docs to run them.

    I have actually felt SOOO much better since I went off Neurontin. It was rough for a couple weeks, but for two weeks now I've been continuously improving.

    It might have been drug induced Lupus, and if so my ANA will always be positive. I was on heavy doses of Neurontin and even took extra sometimes. (not smart, I know)
    I've never been addicted to any drug, and I don't know if I was or not but I think this was a case of the cure being worse than the disease.

  18. Skyemberr

    Skyemberr New Member

    I have FM, and have been trying to get my Dr. to test me for Lupus. I had a ANA test in 2005 and it came back negative. I want to be tested again.

    My FM has continued to be more pronounced over the last 2 years, and then I started having bad problems with my urinary tract, which include blood and protein in my urine and high fevers. I did not have an infection. My Rheumy has tried to tell me it is probably just a FM symptom.

    I had 2 episodes of that, and have started up over the winter with the swelling hands and feet, joint pain and face rashes.

    My Rheumy is reluctant to redo the tests and I worry that I will just get tested on a good day and will test negative.

    I kind of figure that if I do have Lupus it will take me getting sick enough to be in the hospital again and then maybe somebody will figure it out. =(
  19. darude

    darude New Member

    I also have a positive ANA and it's been climbing BUT all other tests are negative so they say NO LUPUS!! I also have brain lesions and they say NO MS? It's all very weird isn't it?
  20. moab341

    moab341 New Member

    I have confidence in my Dr. even though he is one of those that believes in lots of studies to prove things. I'm not sure that's a bad thing.

    I am ok with taking it one day at a time.
    I have been getting continuously better since I stopped the neurontin.
    Two good weeks in a row...I know it could be just a fluke, but I'm soooooo hoping most of my issues were due to the medication.

    I've got a lot of good things going on in my life right now....I'm getting married next month! AHHH!!!
    Never thought I'd say those words again:)

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