Any advice welcome

Hi all.

I'm new to all this so apologise if I don't use the correct protocol. For the past 5 months I've had painful stiff joints in elbows, wrists, fingers ankles and toes. I get a rash on my foot and fingers which blister every summer for the past few years,also extreme fatigue. All off these symptoms worsen after sun exposure and in the morning. I had me first rheumatology appointment a few months ago where bloods were taken, all came back normal. Psoriatic arthritis was mentioned as a possibility and I was prescribed Naproxen which has helped alleviate my symptoms. My next appointment is on Wednesday. After researching my symptoms it seems to fit with sle, but my blood tests aren't showing anything. I suppose what I'm asking is, has any of you had a similar experience? Should I mention my suspicions to the rheumatologist? Any advice would be greatly appreciated as I'm really struggling to cope at the moment, I'm desperate to know what has turned me from an active energetic person into someone who struggles to get out of bed, something which I'm sure you can all identify with and have much more experience than me.

Thank you all for an informative site.

8 Replies

oldestnewest
  • Forgot to mention that I'm also anemic, hahaha, brain not as sharp either.

    Thanks

  • Hi gwynedd,

    Welcome to the LUPUS UK community here on HealthUnlocked.

    Would you like one of our information packs? The pack contains a few booklets and leaflets on the diagnosis of lupus which may be helpful to you. Just send me your address either by private message, or email, and i will pop one in the post for you. hayley@lupusuk.org.uk

    If you need anything else please do get in touch and i will do my best to help.

    Best wishes,

    Hayley

    LUPUS UK

  • Hi Gwynedd, I'm new to the site also and to the world of Lupus. I was finally diagnosed September2014. I suffered for a couple of years with skin rashes - well, blistering of the skin and it's all over me. I really think you need to speak to the GP and Rheumatologist and ask about Lupus. I understand that there are a lot of diseases that are very similar to Lupus, but I am no expert. But I would strongly recommend you speak to the professionals and get to the bottom of all of this. Wishing you well! xx

  • Thank you for the advice Loopy,

    I've written a list of my symptoms for the rheumatologist, hopefully that will help. I'm trying to be patient as I am aware as to how long it can take to get a definitive diagnosis.

  • Good, stick to your guns & get answers! I was lucky with the quickness of my diagnosis but I am aware of others that have waited many many years!! All the best & post back with outcome. Take care xx

  • I agree there are a lot of conditions similar to lupus and many share symptoms however you can be blood negative, especially at the start. Do mention your fears.

  • Quick question - do you have a positive ANA (anti-nuclear autoantibodies)? If not, it will be very difficult to argue anything autoimmune, although it seems that your specialists are already considering psoriatic arthritis. Once your ANA is positive, anything is possible diagnosis-wise but it pretty much depends on your particular symptoms. For lupus/SLE the consultant would likely look to see whether you have some kind of organ involvement - be that pleurisy (lung), pericarditis (heart), seizures (brain) and so on. Without organ involvement it is harder to get to a lupus diagnosis, unless you have lupus specific autoantibodies appearing in your blood.

    Make a list of your symptoms and raise them with your rheumatologist - let's hope it isn't lupus, this disease is a b*** h!

  • Thanks for the advice purpletop,

    I'm not sure if I had the ana test, I intend to get a written list of tests if possible tomorrow. I am aware that you can have a sero negative result especially for psoriatic arthritis, to be honest I don't want either lupus or Psa I just want help with managing my symptoms. I'm not expecting a diagnosis tomorrow but fingers crossed I might get some extra help.

You may also like...