Advice needed- could I have lupus? Worth paying to get tested?

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Hello,

I have had health problems for 3 years now. It all started with fatigue and a rash on my face- the rash was extremely painful and persisted for 6 months until I went gluten free and it disappeared. I still get regular rashes on my face, neck and upper chest. The rashes I get now are different- they are always itchy but not as painful as that original face face, cover more skin and tend to last a day or 2 but can last for up to 2 weeks. The fatigue has remained- the severity can vary and I still struggle with daily living and have had to make many changes to my life (I now work part time as a result). I have also had abdominal issues but these have mostly resolved. Over the past year, I have been experiencing increasing joint pain- it is mostly in my left hip but can be both and I also get pain in my left finger and thumb. I also get lower back pain which seems to be related to my hips. I have been seeing a physio for this for about 6 months and despite religiously doing my exercises, my pain has increased and I'm getting it more across both hips. It's painful to walk and the physio pointed out my left side is extremely weak.

I basically avoid seeing my GP now- I've been tested for so many things I just think they see me as anxious (coeliacs, endometriosis, arthritis). I know stress can make my symptoms worse but I also know it's not soley due to stress. My lifestyle now is pretty ridiculous in terms of managing stress- I practice yoga daily, meditate most days, see a therapist, I'm vegan and eat a very nutritious diet, I've done all I can to remove and manage all the factors in my life that could cause stress or be harmful to my body. But I'm still struggling. I feel as though there is something else causing me to have these issues.

I was wondering if Lupus was something to cosider. When I read the symptoms, I do feel it fits with my experiences but I also feel I've been here already with several other autoimmune diseases. I don't wantt o be stucj in an unhelpful search for something that may not even exist but at the same time, I would like to know what is making me struggle so much and hopefully find some ways to help.

I was thinking about paying privately for a blood screen for Lupus. I did this recently for Hashimotos and it was worth it to just rule it out. Plus it meant I didn't have to try convince the GP- I hate going to my GP! Has anyone used private testing to screen for Lupus? I would be interested in any experiences/opinions.

I would really appreciate any advice.

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6 Replies

  • Posted

    Hi bettybetter

    Have you had an ESR,CRP and ANA blood tests which tests for inflammation in the body these tests along with a dsDNA test will indicate lupus if levels are high and if you are positive fo dsDNA......also the pain in your forefinger and thumb could indicate carpal tunnel syndrome...get it checked with a hand consultant......best wishes...

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    • Posted

      I've not had those tests. Do you think it would be with paying for the to be fine privately? It weeks cost about £150.

      My GP has referred me for an x-ray of my hips as she feels she has ruled out arthritis so is looking for something mechanical. She said once she has the results of the x-ray she'll refer me but it wasn't rheumatology it was something else but I can't remember.

      To me, it feels like my left hip isn't sitting in the right place but I also get pain that comes and goes, like an aching growing pain. Like toothache. That's usually at night and disturbs my sleep. It's not all the time and seems to be worse when I'm struggling with other symptoms more.

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  • Posted

    As a general rule, Lupus doesn't target the hips (although there are always exceptions and overlap conditions).  Ankylosing Spondylitis springs to mind as it does target the hips (and back) and doesn't tend to show itself in bloodwork - imaging is needed.  Your physio might be able to advise?

    Most people with connective tissue disease will have positive antibodies to something but not all!  I've had lupus/uctd for nearly 30 years with no antibodies to anything.  It makes diagnosis a challenge but a good Rheumy will see the general picture.  Good luck x 

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  • Posted

    My dermotologist started the bloodwork and when they got the positive ana and some other crazy stuff they referred me to a rheumatologist. I haven't been to my gp in years...they are useless when it comes to this disease!

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    • Posted

      I saw a dermatologist who was really dismissive. She just said my rash was 'non specific' and discharged me. I took loads of photos of it because I didn't have it at the time of appointment.

      I feel my rashes are a sign of something else going on with my body, that is struggling with something. I just don't know what!

      I'll try get this ANA blood test done.

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  • Posted

    Hi bettybettet

    I would drfinitely get those three tests done and the dsDNA test also....if they are positive results your doc will refer you to a Rheumatologist...which you can

    pay for at a private hospital which will cost approx £150..also you can have a gene test HLA-B27 to test for ankolysing spondylitis..although not all people who test positive for the HLA-B27 gene gets ankolysing spondylitis......best wishes...

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