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New to RA - what do I ask?

Posted , 10 users are following.

Littledog
Littledog

I'm a 39 year old single female and I think I have RA.  I have had joint pain specifically in my knees over the years, mainly when I have been particularly active (I do a lot of walking and karate).  I had swelling behind both my knees about three weeks ago and during an exercise warm up session had a lot of pain in my right knee - next day it was immobile and I could only limp and put no weight on it.  I told my GP about the swelling but anxious about the karate, they sent me for an xray (which showed small amount of wear and tear).  Due to tummy issues I was just taking pain relief.  Within a few days I had the same issue in my left knee and I became practically immobile.  I should add I have had chronic fatique for weeks but didnt know why.  Since my knee's started, this fatigue has only become more and more intense. I went back to my GP who gave me Celebrex and asked me to come back for bloods.  Within hours, the pain was spreading across all my joints and if I got a pain in my left elbow, it would follow in my right and my body is now riddled with discomfort.  I have had itchy dry eyes, constipation  there is that much clicking I sound like a xylophone.  Everything I have read sounds like RA.  I am going back to my GP tomorrow for the bloods and I amgoing to ask to be referred to a rheumatologist, even before the bloods come back asI know it will take weeks and honestly, you don't need me to tell you, this is a nightmare.  I am single with no parents and just a small family, the impact this is having already on work and home is just awful.  I need to think positive but I am struggling, I have zero energy and this is having an emotional impact.  Sorry for venting but I suppose the question is, what else do I need to be asking of my GP tomorrow?  Please help if you can..

2 likes, 34 replies

34 Replies

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  • Debkimly
    Debkimly Littledog

    Posted

    My experience with excercising was sore knees and my shoulder.  My RA came on overnight in my wrists and hands.  I am also thinking your symptoms sound like regular wear and tear.  I see a rheumatologist and my shoulder is still killing me........but not RA. I hope for you it isn't RA and maybe rest and hot/cold therapy might help.

     

  • tammierick
    tammierick Littledog

    Posted

    I agree u might ask your GP for some prednisone. It can b a wonder drug to help ease pain and swelling. My GP gave me prednisone numerous times before i was sent to my rheumatologist. Good luck. Keep us posted
  • Littledog
    Littledog

    Posted

    Thanks everybody.  Doctor wants to hang fire until my blood tests come in, so no referral onwards and just continue to manage current symptoms with co codamol and Celebrex.  I understand this is sensible, I suppose my anxieties are that I need to get things moving, particularly as I am aware bloods do not always show the markers for RA but its in the family.  On the plus side I am 6 days into taking Celebrex and today I noticed quite a reduction in the swelling of one of my knees.  One down, just ten other joints to go :0)
    • lrevenden
      lrevenden Littledog

      Posted

      Hopefully your knee getting a little better is a good sign, remember to take things slowly if you can and let us know how you get on
  • Littledog
    Littledog

    Posted

    Hello all.  My blood tests came back today and the receptionist said they all showed as normal.  I have asked for a telephone consultation with my GP to discuss as I know I can't rely on the blood test results only.  I was a perfectly able bodied and mainly pain free active person three weeks ago and whilst things are easing (I'm more mobile, less swelling, fatigue has lessened and hugely marked decrease in all the knee redness and general cracking noises), I just can't explain the sudden decrease in poor health.  I still have joint pain so am going to ask to speak to a Rheumatologist I think, although from discussions with my GP, I suspect my Doctor will make a clinical diagnoses of RA.
    • lrevenden
      lrevenden Littledog

      Posted

      Great that the pain and swelling is going down. Definitely push to see the consultant as there are many other inflammatory conditions like RA. I'm about 4 years in now and they're still undecided! On my hospital paperwork it has RA, polyarthritis and poss reactive arthritis and my blood work sometimes supports the diagnosis and other times it doesn't!
  • Littledog
    Littledog

    Posted

    Quick update.  Spoke to my GP today (a diff GP from the same practice and not the one who suspected I had RA).  Bloods fine and show no sign of infection or inflammation.  RF factor normal, less than 20 but wouldn't give me the exact number, just kept saying it was fine when asked but asked me to come back in for thyroid and liver blood tests.  Doctor did actually say it should have been the doctor who did the physical exam to review my tests and feedback as RA is more of clinical diagnoses.  

    Three weeks after this started I can today get up the stairs without pulling terribly and so feel in better spirits.  Still fatigued with pain in knees, elbows and muscles but to lesser degree.  It appears I'm going to be referred to a physio now although not sure why..

    • cheria
      cheria Littledog

      Posted

      Fatigue, muscle pain, and what feels like joint pain..sometimes hard to differentiate as everything hurts so much sometimes, is very much like fibromyalga. If tendons in hands, fingers and wrists, as well as tendons in feet, toes, ankles equally on both sides of the body, have throbbing, bone crushing kind of pain, and an inability to bend them, and sometimes other joints, equally on on both sides of the body (rather than one side) this is what RA looks like..Many have RA and also Fibromyalga, which for me was( fibromyalga) induced by methotrexate as well as the biologic injections. I no longer have the muscle bone pain and stiffness from the fibromyalga, but remember the way it moved from place to place at multiple places in my body near joints, which was extremely fatiguing. It is very possible to have only fibromyalga, without RA. For some reason, 95% of those diagnosed with fibromyalga are women, which makes me wonder if hormones, regulated by the master adrenal glands are connected in some way.
    • Littledog
      Littledog cheria

      Posted

      It is hard to differentiate, and difficult to stay positive too, was so much more mobile this morning and now can't stand for more than a minute.  Driving me potty this, cue hot bath I think.  Thank you for the reply.
    • donna82193
      donna82193 Littledog

      Posted

      Hello

      Try and push to get referred. My rf was 18 so showed no signs of ra. Like I said before it doesn't matter u are negative. Im so glad my doc listened and referred me. The longer u wait the more damage is caused. Mentally it ishard and Iim still struggling adapting my life.

      Stay strong amd keep pushing your doc. X x x

    • Littledog
      Littledog donna82193

      Posted

      Thanks Donna, the damage is my concern and of course the effect on my life, I've been indoors for three weeks now, I can't stand for long and exhausted.  I don't feel like I'm being listened to.  I can see I don't meet all the criteria for an RA diagnosis but I meet most of it so if it's not RA, what is it and how can we get to the bottom of it.  I feel practically disabled at within three weeks of this starting and I feel like I am the only one concerned about this. I don't want to have something that is left untreated and could damage  me but there is a reluctance to refer on.  I will push or change my GP .  I wish you the best x
  • eileen11130
    eileen11130 Littledog

    Posted

    Sorry to have read this a few days late.   I have had RA and OA For five years now.   The PMR for two.    I live in the Us where I do not need a referral with my insurance.  I did not show RA with the blood tests but my RA TOld my 30% of test are negative even though you have area... The other blood factors count also and there is a new Vectra something test of an MR I.  For Ra and mine lit up all over the place...if is done on the hand.   My sed rate is high whenever I have a flare-up and try to STAY  AWAY FROM PREDNISONE!  It is a killer......the side effect are horrible....weight gain or loss depending on the person, hair loss, dry skin, dry mouth, dry eyes, fatigue.   It is not good to be on it long.   Unfortunately it us the only thing that help PMR and I have been on it for three years....10 mg is the lowest I can get down to with out having terrible pain and stiffness again.   I have a few nodules on my fingers and wrists.   But they are not considered the tell all of RA.  I know many people whO have none.   You also can get the same thing from OA.   But RA  is genetically and OA is from age and use or injury.b. RA a is also symmetrical... Both sides.  Where OA can be unequal.   Just one hand , one knee.etc.   I have taken infusions and injections if various Biologics to find one that give relief and the first one does not always work.....Patience is a definite virtue.....and prayer .....Right now u am on ORENCIA by infusion and I still get flare ups and still have pain for which I take meds also.   I am starting a new RA diet to see if that will help.      So good luck and keep up the Faith, do not give up looking for that answer and don't be so complacent.   This is your life and only YOU know how your body feels......let your doctor know......take care.....
  • Rowbirdie
    Rowbirdie Littledog

    Posted

    I hope you manage to get back to your gp and ask for a referral to a rheumatologist as you will see that people have different experiences of how ra starts . For me it was shoulder tendinitis 18 months ago. While having physio other joints, thumb and knees began to give terrible pain. My blood tests were positive so I was referred quickly, but many have ra without positive blood tests. You rightly say it is clinically diagnosed and the das score someone referred to is the numbers swollen or tender joints - knuckles, middle joint of fingers, base of thumb, wrist, shoulders, elbows, knees and folk often have pain in feet too. The pain in my shoulder felt like my whole arm was aching,including muscles,but it's the synovial joint affecting the whole arm.i took a lot of painkillers those first weeks. The physio said it might take a year to get the right medication for me. I m glad she warned me.as you say it is so difficult to understand how you can move from good health to such a thing. At diagnosis the consultant arranged for a steroid intramuscular injection which really helps the pain and inflammation. It s to tide over while other disease modifying meds have a chance to work.there is light at the end of the tunnel. A year later my ra is well under control thanks to modern meds. If it is ra you ll have to go down a few gears and make adjustments. In the uk their aim is early identification, aggressive treatment to hold back joint damage and the aim is for remission. I kept that in mind when a treatment didn't work as well as hoped so that I kept reporting back as to how things were. Keep a diary of symptoms, try to get plenty of rest while very fatigued. Just take the pain killers while you are waiting.If it turns out to be something else there s nothing lost in getting a rheumatologist opinion. Do hope you get further help soon.
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