A confused Lupie

I ache, sometimes i really ache especially today my shoulders,upper arms and neck.

but my question is, if my bloods keep showing low esr and normal ck readings then why do i ache.

my doc takes my blood when i complain of hurting all over just to make sure i havent developed anything else and they always (so far which is good news) come back normal aprt from positive ana. can anyone explains please.

16 Replies

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  • Because the inflammation that causes your symptoms is at a level that is not registered by the blood tests. That generally means not that the disease is dormant, only that it doesn't attack as forceful. I hope you'll be feeling better soon.

  • But surely if your body is aching severely something should show up ?

  • hello

    yes thats what i thought too and this is soooooo going to be my first question when i see my rheumy next. i get a little panicky when my muscles really hurt as there is soooo many other conditions you can get along side lupus but thankfully my gp takes me seriously and sends me for blood tests straight away, but they have so far come back normal and he says im doing too much and to rest more. oh sorry i mean normal esr but always positive ana.

  • When I saw rhuemy (1st app)he told me he didn't know why I have muscle pain so is this not possible with autoimmune because I have not been diagnosed. I am also been treated with frozen shoulder but my physio isn't sure and has referred me back to doctor saying she doesn't think she can help me? X

  • Have you thought about going for acupuncture for shoulders? I have been twice in the last three years and it is magic. I have to admit that the last time the acupuncturist used more than needles and really dug into my joints - it hurt like you know what - but I was able to put my coat on by myself when I left office. I never would have believed it could be that effective but it is. Warning - he wanted to put UV lamps on me to warm up muscles, had to tell him twice that he couldn't. That was over a year ago and I think the Plaquenil has been managing it since.

  • thanks for your reply about my aches, my doc siad its because im doing too much and it won t take much extra pressure on muscles to start them aching, even though i am aware of this i do try to keep pretty active where i can, but the pain can stop me doing anything even walking can be a struggle when it effects my thigh muscles.

    Hydroxy doesn t agree with me i have tried taking it on three seperate times but it really upsets my stomach, im not on any steroids as my esr is too low.

    all i get offered is painkillers and plenty of rest. i would dredge to think what kind of pain u get if my esr were very high.

    its just that the docs see low esr and think you are fine but if you say you can still get very achy in joints/muscles with low esr then i will not worry too much.

    thanks

    and yes woke up after painful night still achying in shoulders/arms GRRRRRRR!! but least sun is shining YEAH!!!!

  • Good question Pinky and something I have thought of too. Thanks Purpletop that explains it:)

  • Hi,

    My bloods are like that too, I had a positive ana test but low esr, this doesn't mean a thing at the end of the day your symptons need to be managed and if you have them then something isn't right - you just have to keep going im afraid. Im on my second lot of steroids, previously had 6 months of hydroxychloroquinne, in continuous pain, stiffness, rashes as well as many other symptons too, keep going though, you could be negative for many years but a positive ana does mean that something isn't right. Google, google, google that's the best advise that I can give you, if you don't search out this illness then you will be left as a statistic for a very long time. Good luck with it and I wish you well. xx

  • my rhuemy said i could stay this way with low esr and mild aches (mild thats a laugh ha ha) for ever, which is good to know as i know some people get it real bad, i do have good days even good weeks but never ever a total pain free day never.

    i have been diagnosed now for three years but noone in all this time has explained why you still ache with low esr.

  • Let's not forget that there isn't yet a test for disease activity for lupus. There are only indicators and approximations but no specific test showing disease activity. ESR or CRP are inflammatory markers but so non-specific that they could mean anything. Positive ANA, low ESR, negative antibodies - all these help in the diagnosis but are no precise indicators of disease activity.

    Research is currently undertaken on the most appropriate test for this. The last thing I read the other day was a tentative look at the way C3/C4 complements bind to red cells as a marker of disease activity - not the way we currently get measured, i.e. whether the C3/C4 complements are low.

    I would not necessarily equate pain with increased disease activity - think about lupus nephritis, there is no pain despite the devastation that is taking place in the kidneys. Plus, in our lupus bodies, pain signals are not always conveyed the right way, so who knows why you are more responsive to pain at this stage.

    I understand your doctor's dilemma - the medication for lupus has so many bad side effects that he's thinking twice whether the current level of pain you're experiencing, in light of the 'mild' readings of the blood tests, warrant them being prescribed. The number 1 rule of medicine, "do no harm", makes him cautious.

    Has he checked you for fibromyalgia?

  • fibromyalgia???????? the reason i have put so many ? is because noone can tell me for sure weather i have this, one doc said possible, another said he won t diagnose fibro and my rheumy said maybe but noone has said yes or no.

    but i do know of someone who has fibro and they can bearly move on many days and she is in lots of pain. can there be a milder version??? sometimes i wonder if we ever have any answers.

  • yes, I think there are different levels of fibro, I don't see why not. If you have primarily muscle pain that responds to painkillers other than antiinflammatories and it is against a background of low inflammation markers in your blood, then I think fibro is something to look at. To get a diagnosis for fibro, you need to show x number of pain points on your body and if you don't have them all at this point, then that's probably why you didn't get the diagnosis.

    Bear also in mind that fibro does not respond to the lupus medication at all because it is a central nervous system issue, not an inflammatory one. If I were your doctor, I'd try you on a short course of steroids to see if you improve and if you don't, then I'd lean towards fibro but if you do, then it is mild lupus. I'm probably viewing everything too simplistic here but as there is no certainty with lupus and fibro, there's not much we can do but speculate.

    I hope all goes better, it is such a wonderful weather outside, it is a pity to be in pain on a time like this!

  • Purpletop, I think that my reumathologist does include in my blood tests C3/C4 complements. In fact last time I saw him, he said that my blood tests are steadily improving, adding that Ccomplements are low and that this is normal for this disease. I did ask what it means but the answer was not that clear, so frankly, I am still not quite sure. That is good if they are looking into this.

  • no, that's not what i'm referring to - the current blood tests only measure how low the complements themselves go. The new biomarker is different in that it measures the rate attachment to red cells, different to the current tests.

  • Aha, thanks. Would the decreased rate mean raised activity of lupus then...?

  • Hi All

    Your inflammation info has been really helpful as my Rheumatologist is not sure whether my aches are joint inflammation,or muscle pain and to answer it he wants me to reduce the steroids to 5mg daily from 8mg in 3 months and then I'm having a joint ultrasound scan. They're more sensitive to showing inflammation than X-rays. I've already said NSAID helps and I'm not sure he believes me.xx

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