Still no diagnosis

Having a rough time at the moment. Ache from head to toe with every joint being really painful which has been progressively getting worse since last week Friday. Got strange white patches appearing over torso (none of my face luckily) which I finally did go to GP about. He prescribed a steroid cream. This didn't work at all. Went back to see him yesterday. He is now arranging a biopsy and appt with dermatologist. I'm now off tramadol and on gabapentin as well as amitriptyline. Yet another round of blood tests to be done next week. Lupus has been suggested so many times the last couple of years but blood tests always negative. In many ways don't want a positive diagnosis but becoming increasingly depressed with simply not knowing what is wrong with me. Pain so bad am also taking solpadeine regularly - I can't take any anti inflammatories like ibuprofen as it affects my asthma. So utterly fed up.

4 Replies

  • Am vvvv much feeling for you Edina.  I can tell you're v experienced & know that a long drawn out road to diagnosis is travelled by many of us.  Am vvv glad you're here...the solidarity is fantastic.  

    Wishing you all the very best with everything

    Please keep us posted

    🍀🍀🍀🍀 coco

  • PS edina:

    Patients struggling with diagnosis do often benefit from referral to a specialising in immune dysfunction & connective tissue disorders. Are you satisfied that the consultants you're seeing have the indepth knowledge needed to diagnoses sero neg patients?

    have you seen this discussion here?  it's about diagnostic criteria & may be useful to you:

    And here is another popular discussion re prepping for appointments:


  • Hi EdinaClouds,

    I'm sorry to hear that you are struggling at the moment and have been unable to get a diagnosis so far. I hope that the biopsy and additional tests can help shed a light on what is going on so that you can start some treatment. 

    Have you been to see a rheumatologist for investigations? If not, if your latest tests don't get you any closer to a diagnosis it may be worth asking your GP for a referral to one. 

    If you would like more information about lupus and how it is diagnosed you can request or download one of our free packs at

  • Thank you Paul. I@m not in a good place at the moment. Every joint aches and very bizarrely today my voice is croaky but no sore throat. Taking the gabapentin now and have to increase amount daily so hoping that when full dose I will feel better. I have lots of info on Lupus so no need to send anything more. I'm not entirely sure what is wrong with me but definitely something isn't right. GP said dermatologists work closely with rheumatologists but he wants me to see dermatologist first for a biopsy and then see where that takes us. 

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