RA or not RA? - I just want to be pain-free

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speefts
speefts Member Posts: 3
Hi there - I'm new here :)
I'm 45 year old mum of 2. I have had years of arthritis pain at various levels - fingers, toes and base of my neck are worst affected. I have experienced the most notable flare ups in 1993, 1995 and 2002 when I was last seen by a Rheumatologist (my ESR was raised and my Rheumatoid factor was at 74). I had waited 3 months for the appointment and the flare-up had subsided - I felt fine on the day I was seen! The Rheumy had me x-rayed and told me that he really needed to see me having a flare-up and that I should go back anytime should it flare-up like that again. He said that he wouldn't treat it as RA unless my Rheumatoid Factor reached 100. I went away feeling like a fake. I've had no flare-ups since then that were worse than that one so I haven't bothered going back guessing that my RF hadn't reached 100. My GP told me that I probably have Palindromic Arthritis (which I don't really understand).
In 2006 I was sent for surgery to remove a ganglion. On the operating table the surgeon declared that it was in fact an arthritic bony growth and gave me a steroid injection into the joint that worked very well for about a year. Recently I've noted that my GP's pc screen says that I have confirmed Rheumatoid Arthritis - nobody ever discussed this revised diagnosis with me! Maybe this is to do with the surgeon's findings?
I'm now experiencing a full-on flare - every joint in my body is painful and stiff and I'm feeling very miserable and worn-out with it. My new blood tests show a slightly raised ESR and white blood cells, and surprisingly show that my RF is below 7! I don't understand it - I feel sure that I'm experiencing a bad flare-up. My GP is reluctant to send me back to the Rheumy and was willing to let me leave the surgery today with reassurance that my bloods were 'quite normal' but that I now probably have Palindromic Arthritis not RA . She sharply told me that I should not 'wish' RA upon myself!!! I suffered from work-stress 2 years ago and had a hysterctomy last year - her questioning of my pain constantly referred back to these in a way that left me convinced that she did not believe me - that I probably need a holiday from work, and that my ovaries kept after my hysterectomy mean that I still have a monthly cycle/moods, etc. She sent me away with some Mefenamic Acid and some further blood tests, but only upon my insistence. I feel so upset and let down by medics :(
I just want to know what's wrong with me - and I want proper pain relief and movement of my joints!
Any advice would be most welcome xx

Comments

  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Hello and welcome.

    I'm sorry to hear you've been treated so appallingly. I agree, you should insist on a referral to a rheumatologist. Is there another GP in your surgery who you could see? If not, I would definititley change surgeries. This has gone on for a long time for you and it's not fair.

    There's been quite a lot of talk on this forum about seronegative RA if you're interested in reading. However, with a positive RF, I don't think you'd come under this catergory. Basically, it means you can have RA even with a negative rheumatoid factor, so you can have RA with a low RF too. I can't understand why you've been treated so badly. It's really unfair. I'm so sorry.

    I hope you get the help you need and deserve.
    Take good care.
  • frogmorton
    frogmorton Member Posts: 29,638
    edited 30. Nov -1, 00:00
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    oh no!!

    This is awful - you poor thing :(:(:(

    You have to get some help for yourself - can you afford to have an initial private consultation with a rheumatologist??

    If not I wonder if you could see another GP at the clinic and get a second opinion???

    Will let the helpline gang reply properly just wanted to offer my support to you.

    Love

    Toni xx
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    You poor thing. It doesn't matter whether you have RA or Palindromic Arthritis (never heard of this one!) you are in pain, have stiff joints, mobility issues and need treatment. Go back to the sugery (preferably a different GP) and say you don't care what type of arthritis it is - but you need effective pain relief and treatment. There must be treatment for Palindromic Arthritis flare ups, just like there are for other types of arthritis.

    Keep at it,

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    as everyone else says here, you need to insist on a referral to the rheumatologist. It doesn't matter what your bloods are saying, they make a diagnosis based on involvement of the joints. Most of my readings have been very low, even when I was acutely affected. A good rheumy knows this and will treat your symptoms.
  • speefts
    speefts Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you all for your welcome, support and advice :)
    I will indeed insist upon a second opinion and a referral. If the other GP is as ineffective I will consider a private consultation. I just need to be able to move forward not backwards on this as I feel I am getting nowhere but with the aches and pains getting worse.
    I have learned much from the posts on this forum, and it's good to be amongst people who understand. Thanks again xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Welcome to the forum from me too :D :!:

    I agree with what others have said.....insist on being referred back to rheummy! your GP is not a specialist in arther and shouldn't be 'gate keeping' access to the appropriate treatments, pain relief and services you need in this way. :shock:

    Just how much 'proof' does she need :roll: you've already had surgery that confirmed arthritis. They are saying it's 'palandromic arthritis' which is a sub set of RA anyway.... and can develop into full blown RA. :shock: so it makes no sense whatsoever what your GP has said about 'not wishing yourself to have RA'. :?

    Go back and see her, or better still go see another GP in the practice, or register elsewhere....you are not a 'fraud' and have a right to be seen and have your condition properly assessed and get proper meds etc. Iris x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Speefts,

    Welcome from me as well. Its a good place this. I agree with the others, something is going on and it clearly isn't in your head! I think you do need to see a different doctor and get referred to another Rumo. I wouldn't bother to see that gp again but maybe you could a different one or else change doctors? Its not fair that she has not helped you more and like Iris I also think how much proof does she want?

    I really hope the helpline folk can help you, they are very good and good luck and let us now how you get on. Take care Cris x
  • helpline_team
    helpline_team Posts: 3,606
    edited 30. Nov -1, 00:00
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    Hi
    Welcome to the forum from us on the Helpline team.

    So many people have replied to you and said go back and ask for a referral to the rheumy and I have to agree with that. Sometimes you need to be assertive with GPs to get what you need so plan your appointment carefully and think about how you can best approach your GP.

    Palindromic Arthritis is joint pain which comes in cycles and after a flare the joints return to normal. It would be really good if you could have an'open' appointment with the rheumy and could go when you have a flare so he could see exactly how you are then.

    At this stage you might find the following link to our Factsheets helpful. Scroll down until you come to Palindromic Rheumatism
    http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets#cK45

    If you want to talk things through with one of us please do ring us on the freephone number.

    Best wishes

    Val