At my wits end any advice?

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My symtoms started three years ago swelling stiffnes and spread from joint to joint. I initially saw a rheumatologist privately who did scans and diagnoised me with sero negative RA. I was on and off steriods when my problems began due to late onset asthma and am still on steriods today. 

I  had problems with methotrexate awful side effects and also leflunimde. I tried enbrel but after one shot I got infection after infection. I was referred to more of a specialist hospital who then decided after one ultrascan of my hands I do not have arthritis but fibromyalgia

I felt this wasn't the case and also I did not meet the criteria for this condition. Due to the conflicting diagnoises I seeked a third who I am currently under now. The consultant is lovely and has said its not fibro alone that is there for sure something going on and I do not have the typical fibro symptoms. I had an ultrascan which should some synovitis in my hands and wrists. My bloods are normal and this has been blamed on my steriods. 

I had an apt yesterday for follow up which wasn't with my usual consultant it was his registrar. I was prescribed sulfasalazine booked follow Up apts for bloods and for nurse etc And disgnoised again with sero negative R/A. An hour and a half later I was called by the hospital who said they have changed their mind and feel they need a clearer diagnoises before starting treatment and how aggressive they need to be or if it may be pain from fibromyalgia. They want to re do the ultrascan and then do a follow up. I feel so messed around and yet again another kick in the teeth. It's my life which is on hold and I'm loosing faith. I don't see the point in re doing the ultrascan as his registrar said its likely the steriods are dampening the inflammation down. I just really don't know what to do next .....  Feeling like I'm getting fobbed off by the doctors once again. 

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5 Replies

  • Posted

    Hi anni,I feel for you I really do.I know what it is like to not know

    what is going on.I do have fibro and something else going on and

    still not sure.It took me 10 years for my fibro diagnosis and right

    now we are weeding through other symptoms similar to RA and

    Palindromic Rheumatisim.I am taking plaquenil which is a dmard

    and have been on it since April.It has settled my symptoms down

    considerably.My symptoms have fluctuated from pain in hands,

    feet, neck but no swelling and nothing in blood work then symptoms

    changed to mid arms and tops of shoulders,upper thighs and couldn't

    walk far with out pain.I've had many rounds of blood drawn and nothing

    shows, but with the Plaquenil working obviously it wasn't fibro.

    So hang in there these conditions take some time to figure out and

    I know it's frustrating to not know and to have Dr's changing course

    with the answers.I'm sure others will give their input as there are

    great advisors on this site biggrin

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    • Posted

      Thank you Tory for your reply, just feeling so lost and feel like giving up and accepting this is my life. I lost my job a year ago due to my illness I am a single mum to a 5 year old and struggling on benefits. All I want to do is get better and get back to work and get my life back on track for me and my child and I feel no one is listening and iv had so many problems with hospitals just fobbing me off as they can't get a definitive answer. It's easier for them to say oh it's fibro as there is no test which will positively diagnose it. I am so pleased you have found something that works for you. And I hope in the furture I can carry your story! Xx

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    • Posted

      You sound like a great mom and I know things are tough right

      now financially and you want to do more for your child,try and

      focus on that some time down the road things will get better

      they won't always be this way.Try to stay positive as stress

      has a bad effect on your immune system and increases

      chances of a flare.My rheumatologist recommends magnesium

      as it helps with stress.I hope you get the answers soon and

      thanks for your kind words.Hugs Tory

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  • Posted

    Hi Anni,

    Ouch! The study of rheumatic diseases covers more than 100 different diseases with some similarities Yes, it is so disconcerting, you just want a diagnosis and then a treatment.

    Fibromyalgia vs RA...both diseases respond to steroids, both like warmth, both hate draft, fibro does not deform joints, RA does deform joints (especially the small joints of the hand and wrist), both cause fatigue, RA causes swelling with heat and redness, both will attack just about any where in the body, rheumatoid likes biologics, fibro likes Lyrica...

    In the earlier stages of either of these diseases, diagnosis can be the correct church, but which pew.

    Sinovitis takes time to show up. You hang in there, I will wait with you. Has your sedimentation rate been checked?

    kind regards


    65, 54 with juvenile rheumatoid arthritis

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  • Posted

    Please know that you are not alone! I, too have been on the, you have this, no, you have this, merry go round for almost 20 years now!

    It's currently Seronegative RA, along with Fibro, being treated with Methotrexate and Prednisone.

    Hang in there!

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