Help! Having a lupus flare and blood work showing nothing, has anyone else had this???

I've been flaring badly for the past 3 days & feeling dreadful. Had bloods this morning & consultant phoned to say nothing in my bloods indicated a flare? She said my symptoms sounds like a flare & sometimes it doesn't show up in bloods & I need to see gp to rule out a viral infection & check urine for blood. My symptoms consist of, fatigue v bad, butterfly rash which comes & goes, headache, joint & muscle pain from head to toe, fever, night swests, sensitivity to light, nausea & lack of appetite. I'm so fatigued & achy everywhere I can barely walk the stairs. I would greatly appreciate any advice or if anyone else has experienced this. Thanks in advance & wishing you all well.

My current meds are, plaquenil 200/400 alternate days, prednisolone 5mg, tapered from 30mg recently, tramadol slow release & duloxetine for chronic pain syndrome. I forgot to add that my short term memory is very bad at the moment & what I intend to say comes out slurred and unlike what I meant to say, does anyone else suffer from this? & I also repeat myself all the time.

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24 Replies

  • I forgot to mention that since flaring I've had awful palpitations which have kept me awake. My heart has been pounding violently. Had my bp taken today and it was 180/80 which is very high for me & my pulse rate 120.

  • Sezzie..been feeling exactly the same this week had bad flrare up this week in shoulders and arms I was in I had the butterfly rash,all across my face I was really red infact today was the worst iv had it because it was burning..then it dissapeared after a few hours, im 39 diagnosed in may last year, not sure why your flare did not show in blood tests..worth taking up with ur on azathiprine 2mg prednisone but did top up with 400g ibuprofen on advised by my rhummy..please be positive and c ur go..t.c hope your better soon..xx

  • Forgot to add also had palpitations heart was racing very uncomfortable, Gaviscon worked for me.might be reflexes from meds

  • I take daily omeprazole perhaps I should look at doubling them. X

  • Hi jeevan05, Thank you for your reply and I'm sorry to hear your flaring too :( I am 38 and diagnosed last feb. My face like yours goes very red, cheeks only and burns. Do you flare as bad since being on tbe azathioprine? Theirs talks about starting me on methotrexate which im very nervous about. It is so lovely to speak to people who understand what your going through. I hope you feel better soon. X

  • Hi sezzie, yes I have had low bloods when I felt ill at the time. Sometimes they do reflect my symptoms, but I have had the reverse where I felt ok at blood test, then GP calls to say they are high. Just more weird stuff in our lupy world. Maybe steroids were reduced prematurely in your case. I must say I have had good bloods when on high steroids. Perhaps that is your link. Regarding memory, I repeat myself a lot now. It's family that point it out, as obviously I'm not aware of it. As for your speech, again family and friends that phone say they know how I am by my voice. Feel for you as I am not good at the moment. Went to GP tonight and have upped steroids again. Wish you better. Was just about to submit and see your 2nd note. I have had the heart thing going on before. Really scary but it just went away on its own.

  • Hi 6161, im sorry to hear your unwell too, what a vile unpredictable illness we have :( Are you feeling any better today? About 6 months ago my esr was 26 and i didnt feel that unwell and yesterday whilst flaring and in agony they were 4 and my crp 1. Nothing with lupus would shock me anymore! I hope we both feel better soon. X

  • Hiya. I suffer with the memory loss and inability to express myself at times. It is distressing and I avoid contact with people as I feel that I present as odd, especially when I have a torrential sweat with the stress and start tearing my clothes off! Oh the joys of lupus!

  • Hi lizzy60, So pleased you've mentioned the sweats as I get it too, my hair at the back is literally soaking and is so embarrassing. Ive heard about a "lupus fog" which is what I put my confusion down too. Have you heard of this? Thanks for your post and wishing you well. X

  • Hi Can fully relate to this. You just feel as though you are not thinking straight and that it's so obvious to everyone else. It's difficult concentrating and conversation is more difficult so it's easier to be on your own until it passes:( x

  • Hi Sezzie

    I have had the same normal bloods when poorly with a flare,makes Lupus such a hard condition to treat!. It's worth you pursuing a wee infection as it could be and they can make you feel very ill and cause confusion . It's good your Consultant wants to help and didn't dismiss you. I hope you feel better soon. Hugs x

  • Hi misty14,

    I'm comforted to know that you've had the same with the bloods as I was starting to doubt if it was lupus at all although I tick all the boxes but I guess even a year into my diagnosis I'm still in denial! My consultant specialises in lupus and said sometimes we can only have a positive ana and symptoms alone which is what im presenting with. Thanks for your advice and I'll get my urine checked on Monday. X

  • Me too....ana strongly positive....and the rest symptoms with raised CRP on occasion but not always when I am in the worst flare up. Good that we can all relate x

  • Hello sizzle

    I was reading what you said about positive Ana which I have but low esr which goes up and down but lately been in a lot of pain shoulders,knees thigh muscles upper back, but low esr only 12 so why the pain? Am I in a flare it's so confusing.your rhuemy said you can have low esr but still have pain. I would be interested to knob if that's what she meant. Thanks

  • Sorry miss spelling I meant interested to know not knob ha ha

  • Hi pinky56,

    last year I had an awful flare & was admitted into hospital for 3 days. I had awful pain and swelling in my knees so bad I couldn't walk. Again my bloods came back "normal" I don't know what my esr levels were. When the rheumy came to see me on the ward he said I was having a "pain flare" I thought he was making it up as id never heard of it but when I saw my own consultant at a later date he confirmed it. Perhaps that's what your having? I hope this helps.

  • Thank you all as it is so helpful to find that I am not the only one who is getting sweats and palpitations and just about every thing else that has been described .,The letter saying how you forget things and the slurring I quite often say the wrong word, so this makes me lacking in confidence ,I am so glad that I have your letters to read I find them a bit of comfort to know I am not slowly going round the bend ,you can take painkillers for the pain ,but there is nothing you can take for forgetfulness and the slurring . All of you have been of tremendous help thank you so very much I wish you well take care and rest as much as you can . xx

  • I'm not sure how I'd cope without this site, all the answers my consultant may not know or have time to discuss I can find on here and your right it's a great comfort to know that your not alone with all of our crazy bizarre symptoms that they don't enclose in the sle leaflet! Wishing you all a pain and fatigue free day. X

  • Hi sezzie, still crap today but hopefully not for long as pred has been upped to 40mg to be reduced over next few weeks. Annoyingly I am having bloods done next week for rheumy appt on 23rd. As I will have high dose in my system, my bloods will look ok. My ESR used to range from 19 -25, now it's always in the high 30-45mark. Lots of my treatment has been "stopped/started, over the last 2years. I have been continually flaring since. Drs say ESR rate now must be my new normal.!!!! These 'experts' should join should this forum. They may get a better insight to what we have to put up with. Hope you are soon on the mend too.

  • I am often flaring and my rheumy says my bloods are ok. I just say to him, I wish someone would tell my body that because I feel like crap. Feeling like crap is a general default mode for me.

    I often wonder whether there is such a thing as being in remission whilst on drugs, surely that is suppression, which is a false remission, This false remission might explain why so many of us still feel in flare even though our bloods show ok. just a thought.

  • Hi field,

    That definitely makes sense! Like you I always feel like crap and waiting for this so called "remission" which might I add most of the time my bloods show I'm in! If only rheumatologist's could have an hour feeling how we do all the time then maybe they would be a bit more understanding. Since getting sick a year and a half ago I've not had one day that I've not battled pain and fatigue, some days better than others but with lupus always rearing it's ugly head in the background. Sorry for my rant im just so frustrated and like us all would like some quality of life back. All the best and wishing you well.

  • Hi field,

    Just re reading your analogy on remission and suppression, that should be on the cover of the sle booklet they have in rheumatology clinics, so bloody true!!!

  • Hi 6161,

    Omg 30-45 that is high. Bummer re the bloods, be sure to remind him that you've increased the steroids. Sometimes I get frustrated that they focus more on blood results than how we are feeling. Lupus is a very complicated illness, hell it's got me baffled! I hope the steroids work their magic and you feel better soon.

  • I don't mean to sound like I don't care but it all sounds so funny to me.This is me right now omg I can't remember anything at all I forgot how to spell forgot lol.Our lives are complicated enough the last thing we need is stupid lupus to annoy the hell out of us eveday so we have to make fun of it and kick some lupus butt.When you have a flare up take lots of vitamin D and believe it or not I know some people find this rather wrong but shark cartilage Rheumatologist recommended it to me, it eases the pain of flare ups it also helps your bones and joints.Good luck

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