first CFS/FM, now Lupus - Anyone Else

Discussion in 'Fibromyalgia Main Forum' started by tulip922s, Jun 18, 2003.

  1. tulip922s

    tulip922s New Member

    Just got back from the doctor's and found out I have lupus. The PA I saw wasn't at all surprised with the lupus diagnosis,,,said CFS can wreck havoc on the immune system. Still don't know a whole lot, additional testing will probably be ordered by my doctor when I see him tomorrow or Friday.

    Was curious if anyone else has had this happen. Thanking you in advance for your anticipated responses. Tulip
  2. tandy

    tandy New Member

    We are rowing the same boat!!For years I've had FM and endometriosis.I just two weeks had a possitve ANA which can be indicative of Lupus, so i'm going (went the other day)For further tests~ I hope they're wrong about both of us and maybe my other tests will show evrything fine!!Its scary for about you?are you nervous? I'm 40,and a mom of 3 boys! Hope to hear more from you~ take care:)
    What are some of your symptoms?? Mine seem alot like FM,some rashes that come&go,hip,rib pain.Sore neck and shoulder to name a few~
    Warm regards,
  3. tulip922s

    tulip922s New Member

    Hopefully that boat doesn't capsize!

    I had a rash on my chest and back which was biopsied last week, when I got the stitches out today,,,the PA told me the lab findings were Cutaneous Lupus Erythematosus.

    I also had an elevated ANA awhile ago, but, the doc I was seeing at that time wasn't too concerned about it. Hhhmmmm, maybe he should have been.

    I suffer from SEVERE fatigue, sore throat, swollen glands, headache, fibro fog, IBS, and terrible body aches to name a few.

    Nervous,,,,me? Are you kidding me,,,I'm spazzing! However, I must admit I take things much easier these days,,,no sense working myself up just to suffer a setback.

    Please stay in touch and let us know how you make out. I too am a mom and single at that as a result of my illness. Not only did I lose my job to CFS/FM,,,I lost my home and my marriage as my EX didn't want to live with an invalid.

    Things are better now,,,I can now get 4 or 5 hours a day out of bed, my daughter is doing well in the new school (finally), I met a WONDERFUL man who is everything I could have ever asked for and totally accepting of my illness,,,and to frost the cake,,,,my SSD came through last Friday.

    Best of luck to all and hope to hear from others as well,,,am truly curious if CFS/FM can lead to Lupus. Tulip
  4. abjessop

    abjessop New Member

    Greetings from Ottawa, Canada. I was dx with carpal tunnel first, then lupus, then fm, but in retrospect, I probably got the fm first.

    My lupus is systemic (mostly kidney disease). I never had any of the fatigue problems until I started prednisone etc., so as far as I was concerend, the drugs were far worse than the disease. Then, when I was off pred and the fatigue didn't improve, I started to change my mind. THen I was finally diagnosed with fm, and things started to make more sense.

    This was all while I was at university, and unable to write, so things weren't fun. It took me 5 years to complete what most people do in 3 year, with really poor marks, if that gives you an idea.

    I think that compared to most people with systemic lupus, I've had a fairly easy ride.

    Now, 10 years later, My lupus is in full remission (has been for 7 years now), but the FM is closer to CFS and I've mostly stopped working becuase of it in the last year. I'm currently trying to get disability.

    Ironically, even though the lupus can be life threatening and fm/cfs isn't, i wish my current probs were lupus, since at least that's more treatable!!! My doctors think I'm nuts, for thinking that of course.

    Anyway, if you have questions on lupus, I'm probably not a bad source. There's also an excellent lupus forum called "Lupus Around the world". Try typing that into a browser.

    [This Message was Edited on 06/18/2003]
  5. ohmyaching

    ohmyaching New Member

    by Dr. John Lee and feel that I have found the "how" for nearly all of my symptoms of chronic estrogen dominance can lead to extreme estrogen dominance can lead to estrogen dominace can lead to endometriosis, etc. This is what he had to say about lupus:
    from the book “What Your Doctor May Not Tell You About Menopause” by Dr. John
    Lee page 258.

    Autoimmune disorders are those disease states in which your own antibodies attack some
    gland or tissue in your body. Normally your antibodies protect you from harmful invaders,
    but in this case they go after normal tissue, The actual cause is generally never found.
    Autoimmune disorders, in general, are more common in women. Why should this be? It is
    natural to suspect estrogen, the one hormone that is more plentiful in women than men
    over the course of a lifetime. After follicle depletion or menopause, some women make
    less progesterone than men of the same age. The onset of autoimmune disorders is often
    middle age, when estrogen dominance becomes common. Hashimoto’s thyroiditis,
    Sjogren’s disease, Grave’s disease (toxic goiter), and lupus erythematosus are all not only
    more common in women, but appear to be related to estrogen supplementation or
    estrogen dominance. Recent studies have shown that women who use hormone
    replacement therapy containing estrogen are more likely to get lupus.
    Many of my patients with autoimmune disease who began using natural progesterone to
    relieve menopausal symptoms reported that their disease symptoms also gradually abated.
    This is a clinical question that haunts my mind: Is this an unrecognized symptom of
    estrogen toxicity, or the fact that progesterone itself may “tune down” the
    antibody-modulated disorder? Further research would be nice. "

    Reading about Abby's remarks about progesterone as well as other people's remarks about progesterone use I can't say that progesterone is the answer to estrogen dominance, but I'm thinking that the answer may have more to do with hormone (all of them) balance. I'm going to do some testing to see that my hormone levels, estrogen, cortisone, progesterone, testosterone, etc. are within normal range. I think I'm on to something here that might help me if I can figure out what to do with it. Up until now I've looked for something to explain all of my symptoms and this finally does.

    [This Message was Edited on 06/18/2003]
  6. JLH

    JLH New Member

    I have fibro as well as systemc lupus (SLE).

    My lupus primarly affects my skin and heart. I have had many heart problems and last year had to have a pacemaker installed. I'm 52 now and was diagnosed with lupus around 7 years ago but have had it (and fibro) a lot longer but just had not be properly diagnosed.
  7. Lynda B.

    Lynda B. New Member

    Be vigilint. Get a second opinion. I have heard of people getting diagnoised off and on with Lupus for years. Some docs do this too quickly wihout much proof. They often do this just because your ANA is high and auto-immune tendancies show up. Almost all of us have auto-immunce tendancies. Tons of people have a high ANA at one time of another. The question is how high and its consistency. I am not saying your diagnosis is wrong. I was just more than pleased that no other doctor agreed with the Rheumatologist that first diagnosed me. As they say, all docs are not created equal and even the best of them can get it wrong.

    Hope it all works out for you and you find your answers.

    Lynda B.
  8. dghoover

    dghoover New Member

    Hi Tulip,

    I was DX with endometriosis first, then Lupus(SLE), then FM. But I wonder if I didn't have the FM first. I really think that it is all connected some how. Maybe some day we will know.

    Sorry you have to go through this too. I will be Praying for you. LOL Debra
  9. ~Cel~

    ~Cel~ New Member

    ... mostly due to the hives I guess, and some symptoms like joint pain (arthralgia) and fatigue that are present in lupus. But my ANA test came back negative. The rheumy ordered more lupus tests but said he thought it was unlikely that I had it since the ANA was neg. BUT - he also said that he is not ruling it out completely because it can take a while to show up in blood tests. I have to call the clinic to get my other test results, my next appt isn't until September. And I dropped by the rheumy's office yesterday to drop something off, and he looked at me and said "Oh, you had test results coming in, didn't you?", so I know he hasn't looked at them.

    Another good place for lupus info is The Lupus Site Message Board, run a search for it and you should come up with it easily.

    Take care,

  10. tulip922s

    tulip922s New Member

    I will be running the estrogen dominance theory by my doc when I see him tomorrow. I had very bad endometriosis (probably as a result of CFS/FM) and had a hysterectomy 8 years ago and have been on Premarin every since.

    Hhhmmmmm, got me wondering.

    Thank you again for your responses. Tulip
  11. jka

    jka New Member

    i was diagnosed with lupus 16 yrs ago.7 yrs ago with fibro.the symtoms are alot also dependes on what type of lupus you involves only the skin-the other your whole body.make sure you remember to stay out of the sun.this sets the illness of.i can't go out with long sleeves,long pants and a hat for any more then 15 min. and my skin begins to feel like someone has poured acid over it.there are some great lupus sites on the internet.also some great books.i can tell you which ones i've read and have helped me if you would like. just let me know.if you need someone to talk to,i'd be happy to.i've talked to alot of women after they have just been diagnose.sometimes you need someone to listen who has been there!

    kathy c
  12. tandy

    tandy New Member

    i've followed this post because it pertains to my situation also.(I posted above too) Its amazing how many have mentioned the two lupus and Fm....and Endometriosis!!! I have had FM for 11 yrs now,Endo for 6 yrs now.....and now the drs. are thinking possibly Lupus too!!I feel like crawling into a dark closet and hiding!LOL
    Take care all!