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Thread: Lupus or Fibromyalgia?????

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    Default Lupus or Fibromyalgia?????

    Well, I finally went to a Rheumotologist after being treated for lupus for the past 2 1/2 years. After telling the Rheumotologist all my symptons, he says he's not convinced I have Lupus. He said I have all the symptoms of Fibromyalgia....ok, so back to square one...this is really frustrating. After two years of the doctors increasing my meds...with no improvement. Now this doctor is slowly taking me off the imuran. I have to admit it would be nice to get off all the meds...but he told me that there is basically there is nothing they can do for fibromyalgia either. So WHAT DO I HAVE>>>> I'm so frustrated. I go back in October.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

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    I was told by my rheumy that Fibro does not respond to the Lupus meds so that may explain the no improvement part. She also mentioned that exercise was important with fibro.
    That's my 2cents worth

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    AWWWW, im so sorry Maryjane that this has happened to you Drs ARENT GOD and they DONT KNOW EVERYTHING, so who knows if he even KNOWS what he is saying to YOU. A good example is my rheumy,he told me my last visit that HE DOESNT KNOW anything about Fibro! WOW, Carl and i looked at each other in shock! Rheumys are SUPPOSED to KNOW about IT! Its a problem THEY specialize in! Fibromyalgia is one of those "piggyback" illnesses that follow Lupus. What you need to find out with your own research(because the dr WONT put in the extra time to do it thats for sure) is EXACTLY what ALL of your symtoms are. BECAUSE, fibro DOESNT have ALL of the symptoms that lupus has. You should write down EVERY symptom YOU have experienced (no matter how small OR big) in the past 2 or so yrs. Then compare YOUR list to the list of symptoms for lupus and fibro. YOU are going to have to do MOST of the footwork unfortunately,MOST drs DONT want to (or CANT because of their patient OVERLOAD), my husband and i GOT US TO where we are by doing MOST of the work and educating ourselves through the past 3 plus yrs. When we left it all in the drs hands we got NOWHERE FAST and i was getting more and more symtoms by the day. And to top it all off, my old GP was writing in my charts "Hypo" and "has high anxiety", "needs to rest more". HUH???? Are you kidding me! If she was actaully LISTENING to us, i WAS RESTING MORE than i EVER have in my life and THATS exactly what was concerning us (along with EVERY other symptom) because i have ALWAYS been a VERY ACTIVE person who WORKED HARD in ALL aspects of my life! And to all of a sudden have NO ENERGY and feeling BAD all over, well, it was a shock to myself as well as all of my loved ones who KNOW me.

    Please be your own advocate in this hun,( MORE than EVER right now) to get what you NEED and DESERVE from a GOOD dr. GOOD LUCK! XXXXX
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    That's harsh! There seem to be a lot of rheumys like that in the world, "Its not lupus, is fibromyalgia, so we're going to take back the diagnosis after you've been treated for lupus for a few years". If this is your first rheumy, maybe go to another for a second opinion?

    Lucky7's right about symptom tracking. A few years ago when I was still floating around between doctors trying to figure out what I had, I kept this symptom journal (still have it). It's a good idea for when you're going to new doctors, 'cause in my experience they really just can't be bothered to investigate things for themselves.

    I'm keeping my fingers crossed that you get this all sorted out. Having a diagnosis retracted is frustrating to the highest degree. But we're all here to support you. <3
    Medications: CellCept, Plaquenil, Prednisone, Naproxen, Tramacet

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    I can relate to your frustration, Mary Jane. My PCP did not agree with my Rheumy's diagnosis of SLE and Sjogren's Syndrome although my labs were positive and I had symptoms of both..

    I would seek a second opinion. I see Nancy Carteron in SF. Yes, it's a 2.5 to 3 hour drive from Sactown, but well worth it as I only see her a handful of times per year. Although she will bill your insurance, she's not contracted with any insurance companies, so the out of pocket is a bit spendy. Again, she's very knowledgeable and thorough. I have an incredible amount of respect for her. Also, she encourages holistic treatment as well as conventional meds/treatment.

    My husband's cousin was diagnosed with SLE and fibro several years ago and was on some heavy duty meds. She is now in remission. I find it interesting that since the SLE remission, her fibro symptoms have all but disappeared?????

    Anyway, since it was your first consult with a rheumy, I would get that second opinion, but that's me. Are your labs abnormal?

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    hi mary jane.

    so glad you are back, but i am sorry you are so frustrated. I am not surprised by your drs. response to fibro....my first rheumy told me that he did not "recognize" fibromyalgia....i walked out and never returned....i looked until i found a rheumy that did "recognize" fibro, and i have been with her every since.

    also, there are some meds that people have tried and got relief from. I tried lyrica and cymbalta....neither of which worked for me.....

    so, find another rheumy....fibro is a real thing and it is extremely painful. there are drs. out there who will help you.
    Phyllis

    share a smile today

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    My last Rheumy said poss "skin Lupus and Fibro"...lol I have more physical symtoms than skin Lupus would present with.(my GP says Lupus) I have been to 3 Rheum's and gotten 3 different opinions. I have another appt in Oct with a new Rheum..my last shot in Jersey..if he too is a half wit, it's into NYC for a 'real' doctor. So frustrating
    Andrea

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    Thanks everyone for your thoughts and input. I've been reading about fibro and I definitely has most if not all the symptoms...even more than the lupus symptoms. I'm wondering if I have both. My blood tests have never been a real positive...so I think he is also looking at that. The one thing that does puzzle me, is that when I go into a flare, I run a low grade fever, and get a rash on my thigh that spreads across my buttocks and to my other thigh. I'm not sure that is a symptom of fibro. I dont get the butterfly rash though. However, lately, I feel as if I'm in a constant flare, my whole body aches from head to toe, and the smallest tasks exhaust me. I just want to know what I have and be able to treat it with the least amount of medication. I feel like I have a pharmacy in my cabinet right now.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

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    hi mary jane.

    yes, most definitely you can have both. I was diagnosed with fibro in 1996, even though my ana count always came back positive, i did not have enough criteria for a lupus diagnosis until 2008....

    i understand about the body aching....sometimes i thing my fibro is causing more pain than the lupus....and sometimes the boundaries are so blurred, that i can't tell which one is acting up....i also think that the fibro pain sometimes sends me into a lupus flare.
    Phyllis

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    Default hi

    Oh im sorry to read this.Like you ive had the lupus label taken off me due to bloods coming back negative.My rheumi said it must be M.E Chronic fatigue syndrome.Then i swelled,it was my gp who diagnosed me with fibro a few weeks ago,not the rheumi.I have too many symptoms that for me do say ive got LUpus.I hope you get proper help soon.So very unfair on you.I'll be thinking of you.

    love Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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