What is happening?

I had a major op at the end of March and the next month to six weeks I spent recovering, including being treated for a UTI. I then felt quite bright and the sun came out big time so I enjoyed three weeks of good weather (although I was careful to wear a wide-brimmed hat, etc). Then my husband caught The Cough, which has been sweeping gradually across the UK, I believe. I came down with it a week later and I haven't been well since. I haven't had a bad cough since my teens and this was a real humdinger. As a precaution, given I have Lupus, Hughes, other things, my GP put me on antibiotics for a week although he said he thought I had a virus. Anyhow, five weeks on I have finally stopped coughing but other things are now rearing their heads. Around a week ago I started to hurt, and hurt. I have pain through my shoulders, up my necks, down my arms, my arm joints ache on and off, my legs have occasional pain. Plus I now feel so cold, despite my body temp showing as normal ish on my thermometer. I was at the hospital at the weekend and they did bloods. Normal CRP, ESR of 6, a WBCC of 5.5 (I'm normally <4) but nothing of note and declared me fit and well. I assumed from the three results I've listed that this meant no Lupus flare but that my body was still fighting off a viral infection. I've been feeling very down for a while now, normally a sign of infection or something amiss physically. Then today I started to get a very high pitched whining in my ears (my INR is normal for those with Hughes) and I feel dizzy. I'm so fed up. Just what is going on? Could this be a Lupus flare, despite the normal ESR and body temp on the thermometer? Thanks for any ideas.

13 Replies

  • Sorry to hear that you have had such a bad time since March, you must be exhausted! I too have had THE COUGH and have been left aching all over for several weeks. I lost my voice and had a sore throat, and mild temp. My GP started me on antibiotics too for the same reasons as you and I started coughing gross stuff up off my chest. My bloods came back with a raised WBC and an ESR of 6. My Dr said that I was probably having a lupus flare related to the cough virus/infection. He said if it looks like a lupus flare, sounds like a lupus flare and feels like a lupus flare then it probably is a lupus flare. He even said that "we treat the patient and their symptoms, not just their blood results. The medical profession understand very little about lupus." This is why I trust my Dr. He is honest about what he does and doesn't know.

    In my opinion, anything that triggers my immune system will trigger a pretty substantial flare. My lupus is not under control at the moment. Any infection or stress on my body causes joint pain, chest pain as I suffer from recurrent pericarditis and fatigue. The only good thing is since being on Azathioprine my daily malar rash has gone. Woop!

    Sound to me like you need to rest up and have plenty of TLC. What painkillers are you on? Is the pain manageable or do you need something stronger? Are you certain that your UTI has not returned? I had recurrent UTI for 3 months last year and I didn't know as my regular pain meds were masking the pain, my gp did a routine test and discovered that I had another UTI and it was fuelling my lupus. Just an idea. Maybe send a culture?

    I do hope you feel better soon. Totally understandable that you feel low. It's a tough ride. We're all here for you, stay strong. Let us know how you get on. Much love and sending best wishes. Also, BRILLIANT use of the word HUMDINGER!!xx

  • Thanks for your input, happytulip. I don't think it's a further UTI, in that I took a sample in to my GP last week for one of these strip/dip-stick analyses. Nothing showing.

    Re pain control - I just don't know really what works. I can't tolerate Naproxen so I've been using Mefenamic Acid, which certainly does something but not everything. Paracetemol is useless. Tramadol isn't the right drug. Lyrica/Pregabalin also seems to do something, but I can't tolerate it beyond 25mg a time. So I'm thinking muscular/inflammatory/possibly nerve and tendons?

    I am not confident that approaching my own surgery would yield much in the way of further clarity. Probably best for me to contact my rheumy's secretary and hopefully get some proper input that way. It sounds like you have an excellent GP, by the way.

  • Hi Mrs Mouse

    Sorry to read you have had a tough time since March , you must feel very down and fed up. I agree with happy tulip that your symptoms could well be a flare from the virus or UTI. Is the UTI being treated?. Has a culture been done. Signs of a flare don't always show in bloods so is your GP willing to treat you without this evidence.?. It's difficult to suggest extra steroids if you've a UTI as they can make symptoms worse . If UTI gone then I'd suggest a short course to see if you get better. Hope you improve soon. X

  • Hi - I have nothing to add to the other two comments, but just wanted to offer sympathy and say I hope your Lupus flare, or whatever it is, abates very soon. X

  • Me too! I'm just fed up of one thing after another - as you must be!

  • Thanks misty!

  • Sounds like a flare to me MrsMouseSJ. You've had a lot going on what with an op and illnesses. My GP won't treat my ongoing symptoms unless I get positive bloods but luckily I have found a good dermatologist who can see that bloods aren't everything and is listening to me. So my answer would be yes you can have a flare with normal blood results. I hope it's all under control soon and you start to feel better. I haven't heard of The Cough, sounds awful. Best wishes.

  • Yes, I think approaching my rheumy is probably the way to go, rather than hoping my GP will be able to sort it easily without clear bloods. I was diagnosed in late 2013 and I am still very much on a learning curve re my Lupus.

  • Definitely a learning curve. I guess that never ends really. I was diagnosed by bloods and GP in October 2013 and confirmed by rheumy November 2013. Still a newbie lupie!

  • Am v much feeling fur you. My experience fits with all the great replies above. I've had a lot of inner ear involvement...and would suggest you get the vertigo & noises logged on your GP records...especially if these don't clear or at least damp down within a few days...please let us know how you get on...

    🍀🍀🍀🍀 coco

  • Hi Coco. Ah, ears; so useful but also such a damned nuisance at times!.... Usually tinnitis and vertigo means that my INR (blood clotting time) has fallen and I need to up my dose of warfarin. But clearly that's not the case here as I right near my target of 3. I don't know about you but sometimes I feel like one of those people spinning multiple plates on poles...

  • So sorry to hear of your health issues, myself went to the doctor did some blood tests have to be doing more even a DNA blood test says that looks like lupus but I'm praying God's healing because he's a miracle-working God and I'll keep you all in my prayers. Much love and blessings

  • Thank you!

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