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Thread: Re-diagnosed - Feeling Deflated and High at the Same Time

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  1. #1
    Join Date
    Dec 2007
    Edinburgh, Scotland
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    Default Re-diagnosed - Feeling Deflated and High at the Same Time

    So, 5/6 years ago I landed myself in A&E (ER) due to being unable to walk due to extreme pain in my hip which had been building up over a few weeks. I also had a horrible rash which appeared on my face after being sunburned one not so summery UK day. This began the investigations which led to me being put on hydroxychloriquine and a diagnosis of Lupus even though my ANA has always been normal. My Vit D levels were dangerously low at the time and they said way back then that a couple of my other levels were indicative of Lupus.

    So here we are, 5/6 years down the line of living with Lupus and having also been diagnosed with Rosacea, Sleep Apnoea and Tinnitus I went to see my Rheumy on Monday for my 6 month check (although it's actually been about 10 months and I've given birth since I last saw him). Anyway, I didn't get to see him right away but had to explain everything to his 'minion'. I told her about my sore hips, sore pelvis, sore elbows. She asked me if my face is always this red, she bent me this way and that and she pressed all sorts of places around my joints that almost called for a team to come peel me back down off the ceiling ~lol~ She then left the room to discuss my case with the main Rheumy and they both then came back in for a chat with me.

    They've decided now that I haven't actually had Lupus all this time and have now diagnosed me with Fibromyalgia instead. They're still questioning Lupus with one last set of bloods and an appointment to see me again in one years time but for the most part I was given an information leaflet, told that I would be given an appointment for Physio, that my treatment would all now be GP led instead of Rheumy led and sent me on my completely confused, merry way.

    I feel so strange. A part of me feels completely robbed... like I've been living a big lie for the past 5/6 years and also kinda like I've had my membership to this amazing club here revoked suddenly and then the other part feels as though I was handed a get out of jail free card.

    Anyway, I really just wanted to drop in and let you all know what's happening with me in my neck of the woods. I've been very quiet as of late as my 10 year old has been diagnosed with sensory problems, my 8 year old is being assessed for ADHD and I have a 9 month old baby all keeping me highly stressed and grey haired!

    Hope I can still come hang out with you guys even if they do fully retract my Lupus diagnosis ~lol~

    (aka. Numpty)
    Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
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    quite a few of us have fibro..... whilst it is not life threatening.......... it is definetally life changing. I have quite a bit of information is you are interested. pm me and I can send it your way.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    I want to add something to this thread. Many of us go through this issues of new doctors "undiagnosing" which is a pain in the %#}. Because there is no test for Lupus each doctor diagnosis it differently. Add to that the fact that our meds, when doing at least part of their job, change our test results, leave us open later down the line to a new Dr. Wanting to change a actually just happened to me.

    I am on enough meds to kill a horse ( lol) and the new rhuemy wanted to see certain bloodwork that was no showing up because I have been on meds for so long. She wanted to take my diagnosis away. I was terrified. Honestly I don't care what you call what I have but I am sick enough and I don't want to come off of them and get sicker. I went back to my primary who has been treating me for the last few years due to my lack of insurance and although I can't repeat his response here c the clean version is that no one was going to kill me because they call themselves a specialist but don't understand my disease.

    i don't want you to have Lupus. I am just telling you this because it happens often when docs only want to see blood work. I actually got a copy of lab work from a hospital about the number of lupus patients that test positive for each rest and was astounded! These doctors rely solely on these tests and the highest % was 40-60%! my advice is trust your gut. Fibro can be very dibilitatinf and painful but the good news is that the meds are not near as dangerous. If you feel the doc is right or could be give it a try. If you doubt then know you have every right to! Sadly too many don't understand this disease and we have no real test to determine who has it and who doesn't.

    More money MUST go into research or too many of us will fall through the cracks one or more times

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  4. The Following 2 Users Say Thank You to tgal For This Useful Post:

    Sammy (04-17-2013), steve.b (04-18-2013)

  5. #4
    Join Date
    Mar 2009
    Dallas, Tx
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    If it was for sure, you could consider yourself lucky, but we all know, that just because a doctor said that, it doesn't mean that it is true.
    My first Rheumy had diagnosed me with Lupus, but I had to fire him, because he turned out to be a money hungry Jerk ( long story). I did find another Rheumy and he right away said, that we don't have to do another blood test, because we already know, that I have Lupus and we also know, that Lupus is incurable.
    He also checked for fibro, which he thought I had as well, with the Lupus, but the 11 tender points turned into over 40, before we stopped counting. My whole body is tender and painful, my joints, muscles, skin, tissue, tendons and cartlige.
    I was also diagnosed with RA and Sjogrens.
    Maybe you could find a different Rheumy.

    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    tgal (04-17-2013)

  7. #5
    Join Date
    Apr 2013
    Melbourne, Australia
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    Hi Claire,

    I also have been diagnosed with both Fibro and now Lupus. My Rheumy says they pretty much go hand in hand. As a Nurse i see and deal with many doctor's and one thing i have learnt from them is that they will inject their opinion into diagnosis. I think it's just impossible not to for some of them. Of course they will look at your blood results but as we all know our results can change on any given day and we are all taking medication to try and normalise them. Concentrate and look after yourself, you know how you feel and you know your body. Don't worry about labels, your here because you need to be.

    Sam xx

  8. The Following User Says Thank You to Sammy For This Useful Post:

    tgal (04-18-2013)

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