Confused

Hey.. Feeling a little confused.. I've been having painful finger joints for about a year then randomly woke up and my knees and feet killed the pain was different after 2day in pain I had a fall I get told by hospital that they think I have RA gp to doctors she agreed she said I need bloods ASAP spent two days in pain with my neck have a blood test next day they call to say I have high cholesterol? Nothing was mentioned about RA what do I do now?

16 Replies

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  • Also everything I do wipes me out body feel like been hit by a bus

  • Go back and ask to be reffered to a rheumy at the hospital.xxxxx

  • Thank you I will x

  • It doesn't always show up in the bloods at first you need to see a doctor who knows something about RA , hope you get the help you need 🌹

  • Thank you xx

  • You should really get at least more tests to find if you have RA as the symptoms you describe remind me of mine when i first contracted RA and even tho the neck pain has all but gone all the others are still there. To be honest it sounds as though they have messed up on your tests. All the best

  • That's what I thought I'm going to call them back now thank you x

  • The cholesterol test is a bit of a red herring at this stage!

    I would go back to the GP, ask for the results of all the tests and a referral to a rheumatologist.

  • I've called them back and I have a phone call booked for next thurs .. Can already tell this is gonna be a long process X

  • Maybe they didn't actually do the tests. When I first had tests done, I was told my tests results were all OK apart from one kidney one which they wanted to double-check. I breathed a sigh of relief, thinking my fears of having RA were unfounded. What I didn't realise was that the test results were only ok because they had failed to actually request any rheumatology tests. So it was a shock when I rang for the results of my second kidney tests and was told that my RF test was positive. They never did manage to arrange the other tests I was supposed to have.

  • Maybe that's what they've done then .. Ive not been recalled for other tests either my doctors are useless I've read up a lot now and I should have been treated for border lineDiabetes as well as border line thyroids and this is a year later!! I hope your getting proper care now

  • Hi Kelb,

    This does indeed sound like an inflammatory arthritis going on.

    Mine started with two fingers on my left hand aching a bit for a few years ( which I ignored and put down to injury)

    Then wham, sudden huge swelling of both knees.

    The docs put it down to over exercise and damage to my hamstrings.

    I hobbled off and within a few days was completely incapacitated with what my Consultant called explosive polyarthritis.

    It was in both hands, every finger, both wrists, both knees, my feet and back of my skull and what was one of the most uncomfortable places- my jaw. I couldn't walk, eat, sleep, wash etc etc etc.

    I was given huge rescue doses of oral steroids which gave me steroid induced Diabetes. At one point last year I was on over 20 pills a day.

    Anyway, this isn't about me but about what you need to do.

    A phone call from the GP is a start but it isn't enough.

    You need to have your Rheumatoid factor checked and ask for an ESR test this is something called an Erythrocyte sedimentation rate test and though not specific for a particular disease tells the GP/Specialist what level of inflammation is coursing through your body.

    Plus it's good to have a base line and know and memorise your results.

    There are two other tests used and I know this will sound confusing but you do need to get used to it.

    One is called Anti CCP and this is a more accurate test for RA or similar and also CRP which is a C reactive protein test and again a more accurate representation of inflammation.

    What I'm going to say next will sound confusing but even if you don't show as positive for Rheumatoid factor and Anti CCP this does not mean you DONT have RA or similar.

    I have been diagnosed with what is called Sero negative rheumatoid arthritis. This means I do not have RF showing in my blood but this can develop over time and I am diagnosed currently through the symptoms I show.

    I am treated by taking DMARDS, ( Disease modifying anti rheumatic drugs) and anti inflammatorys ( Naproxen) and a Biologic drug ( Etanercept)

    I have been on treatment for just over a year now since the awful disabling onset and am back at work after months and months and at my last hospital appointment at the beginning of this month they said my Disease activity score indicated remission.

    NRAS which is the National Rheumatoid Artritis Society have amazing information which has helped me and countless others.

    I really wish you the best of luck and if I had one piece of advice it would be to strike up as good a relationship as possible with your GP and ask them to explain your test results.

    Let us know how you get on with it all.

    Mx

  • cdn't agree more with theothers esp oldtimer and Em13 and Mandalou - clear explanations and comments to help you. I had to pay a tenner for acopy of my blood testsas told 2 by clevr daughter n twas worth it. NRAS also has clear info on all the tests and is working up a bklet for us all. 1 fingr typing still but steroids n ibuprofen keep me going with 3 hr siestas lol till and feet up 4 the swelling n icy cloths 10 mins per hr when resting. Hope to get back on methotrexate injections soon.

    so get back to gp, get copies 2see right tests done and ask for a referral asap - good luck. xx

  • Wow thank you all so much I really appreciate all your advise and I will definitely keep all posted .. I'm a nail tech and these hands are refusing to let me work properly without pain Ice works wonders and hot water bottle for my neck then by 4 it's bam I feel like I've been hit by a bus literally thank you again xxx

  • Please see a reputable Rheumatologist. If you don't get answers, see another...and so on. Eventually you WILL get answers. May not be the answers you want, but at least it'll be an answer. ❤️

  • I think cholesterol would show up pretty quickly and if very high would trigger immediate action, however RA tests can be a slower process and often show conflicting results, your symptoms sound very like some that indicate RA but i would hope your gp would be asking for you to be reffered to a rheumy specialist, if not i would be asking why not.

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