Leukocytes in urine, muscle twitches and night time shakes

I'm struggling with feeling rotten at the moment. I feel really unwell, but different from the usual lupus unwell. Blood tests and ECG all ok. Leukocytes in urine though. Test sent off. I am getting random twitches, almost flicking sensations, all around my muscle system. I am also being woken at night with shivering/shuddering, although I am not cold. It's exhausting. Even my fatigue is fatigued. Anyone else had similar?

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  • It will be interesting to see the culture result. I have the rigors you mention when I have a UTI.

  • Doc thinks it may be a UTI

  • Oh my gosh! Yes .. Leukocytes are very high and I get like internal shaking .. been feeling very unwell ... also crushing headaches .. I ve put it down to Methotrexate injections .. but Ive never experienced this before ... its like I could drop and have no energy. Muscles have been really sore like they are bruised and painful ... I havent slept very well for about 3 months now .. ive tried goin to bed late, going to bed earlier ... drinks to help with sleep ... but nothing curbs it ... Ive been diagnosed with Liver and Kidney disease so maybe its because of this? I dont get told anything about symptoms .. I think we are meant to google it all ... Hoping you find some relief and answers ... xxx

  • Oh my, yes, the internal shakes. It's awful. Occasionally it can be seen on the outside and I do shake but most often it's internal. People think I'm crazy when I say I'm shaking. It's almost like I swallowed a mobile phone on vibrate at times. I'm told this is a chemical reaction in my body but really not sure. Just know that it is extremely unpleasant especially when trying to get to sleep.

  • Oh My!!!!!! Yes that is me too! People think I am going mad! You describe the feeling very well when you said it feels like you have swallowed a vibrating mobile phone. I have had these internal shakes for about a year now, 24hrs a day, Please can someone tell me what is causing it??????????????????? I am on Pred, Myco, Hydroxy, Ramipril, Sertraline, Amitriptyline and Levothyroxine.

  • Same drugs as me! Will let you know outcomes.

  • We're not alone then! Hopefully get some answers soon. Don't know if Lupus Uk know anything #Paul Howard

  • Hi lupie46 and maybehope,

    I'm afraid I'm struggling to find any information about this particular symptom. It could potentially be linked to nervous system involvement from your lupus. Have you been investigated by a neurologist?

  • I thought about that. May speak to rheumatologist. Thanks 😊

  • nervous system involement makes some sense to me....i am being investigated for brain and spine iinvolvement with sle......i have clonus,which causes my shakes....

  • Yes had that a few times but not got any answers from anyone I'm afraid, it's a bit like when you get sun stroke if you have ever had that .

  • I do get uti also so maybe there is a connection, do you have lupus nephritis?

  • Hope not, but maybe

  • Yes. Just had two ITU's in a row. Two lots of antibiotics but have had the tremors for a year with no ITU's. SOOOOOOOOOOOOOOOOOOOOOO weird!!!!!!!!!

  • My Renal consultant did blood test to check for a couple of things when I told him about my shakes etc , I had a night with shaking and sweating , I wake up wet through sometimes . The tests he did came back negative so I guess they are as confused as us about the cause .

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