Test negative but feel really ropey. :(

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maxeen
maxeen Member Posts: 8
edited 19. Jan 2010, 15:23 in Chat to our Helpline Team archive
My thumbs hurt, my fingers hurt, my toes hurt, my knees, my elbows and wrists and ankles and now my shoulders hurt too. The shoulder pain is a new thing which is interfering with sleeping as both sides hurt when I lay on them. My hands fall asleep a several times during the night too, which I've only just found out can be carpal tunnel syndrome. Thought that was a just a peculiar thing that was unassociated till searching this forum for it.

I had a test for RA but it's come back negative. Over the past three days I've felt like I've got a fever (sitting here with a blanket round my shoulders) but I haven't got a cold.

I'm feeling quite depressed and a bit teary. What do I ask the doctor to do next please?

xx thank you.

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  • doverliz
    doverliz Member Posts: 16
    edited 30. Nov -1, 00:00
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    All your pains sound exactly the same as I had before being diagnosed. I know how awful it is with the shoulder pain waking you up in the night. I used to wake my husband up as well, because I would groan with the pain! Perhaps you need to ask for more blood tests. Failing that, a second opinion. No-one should ever be left to suffer pain.
  • helpline_team
    helpline_team Posts: 3,490
    edited 30. Nov -1, 00:00
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    Hi Maxeen
    It might be a good idea to check with your GP exactly what blood tests he did. People can have a negative rheumatoid factor and still have RA. Tests such as ESR (Erythrocyte Sedimentation Rate) and CRP (C Reactive protein) measure the level of inflammation in your blood but can vary and are worth repeating if you are still feeling so ill. Blood tests are only one indication of a condition - how you are feeling is more important. You have pains in so many joints you can ask for a referral to a rheumatologist who will prescribe medications for you if he thinks you need it. Also do ask your GP for something different for pain - you shouldn't be in pain like this.
    If you want to chat to one of us here do ring us on the freephone number.
    Best wishes
    Val
  • maxeen
    maxeen Member Posts: 8
    edited 30. Nov -1, 00:00
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    Thanks Doverliz, Colly & Helpline team xx

    I went to the GP today and she's referring me to a Rheumatologist, even though my blood tests look totally fine. So that's good.

    On the negative side (more negatives? Good grief!) it appears I've given myself a stomach ulcer (or the start of one) from taking too many anti-inflams, so now I'm being treated for that, which is dead painful. Now I can't take anti-inflammatories until that settles down.

    ::sigh::

    Currently on the settee aching all over like flu and only have co-codamol for relief. Trying not to take them though and get my tummy better quickly. Hard to cope with both things!

    Do feel a bit better having been taken seriously and about the appt with Rheumatologist though. Hopefully they'll be able to find what's wrong.

    Thanks for your responses. Nice to know I'm not alone and people have similar problems, it really helps.

    Doverliz...is that your location? I'm near Ashford. :)


    xx Max
  • helpline_team
    helpline_team Posts: 3,490
    edited 30. Nov -1, 00:00
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    I'm so pleased you've got this referral. Plan your appointment carefully, think what you want to say and ask. It can help to write down your questions and take them in with you so you don't forget anything.
    Best wishes
    Val
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
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    Hello, Its good that your doctor is doing the right thing. I have, I think, got OA, but the docs can't be sure and its taking a while to sort out. My bloods are fine, but I have similar symptoms to you. Its frustrating, but whatever we've both got, I think we need help with! :wink: I've been given amatriptyilne(sp?) for the night and they do help me sleep, maybe your doc would give you something. They are not sleeping tablets.
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