Newbie!

Hi, I was recently diagnosed with RA or rheumatoid connective tissue disease (as the consultant didn’t want to pigeon hole my condition). It took me nearly a year to be diagnosed after multiple consultants, scans etc. It got to the point where I was in excruciating pain in neck and shoulders and was extremely fatigued constantly. My new daughter was about to be born in 2 weeks before diagnosis and when the pain spread to my jaw I went to urgent care as had researched and self diagnosed PMR. After breaking down In front of the (useless) urgent care doctor who refused to take me seriously I left without a diagnosis or help. Called 111 the best day who rushed me to a gp who immediately put me on a large course of prednisone. I felt like a new man the next day. I arranged a pvt consultation with a rheumatologist who gave me the diagnosis. I was put on 30mg daily of prendisone 2 months ago. My face has started to swell (moon face) of which I’m extremely conscious of and is causing lots of anxiety. Saw my consultant again 6 weeks ago who has now put me on hydroxycholroquine (typo) and started to reduce my steroids weekly. I’m starting to be in pain again but hope once the new drug kicks in it’ll clear up.

this has had such a detrimental effect on my life as the one thing I always had was my health and fitness and it’s knocked me for six. I’m praying hard the hc kicks in and makes me pain free (I’ve heard it can take at least 12 weeks).

Sorry for the long post but felt good to get off my chest.

Comments

  • Chris_R
    Chris_R Moderator Posts: 547
    edited 17. Sep 2021, 19:39

    hi @Stuartcooney

    Welcome to the online community , its always good to get things off your chest and you will find good listeners on this forum as everyone has a story to tell on their journey with arthritis sharing yours helps you and others who read it.You have indeed been through a lot of pain and finding the right drug for you is often a trial. I do hope it all settles soon .

    Here is a link that may help.

    Hope all goes well with you,please keep in touch and tell us how you get on.

    Christine

  • Lilymary
    Lilymary Member Posts: 1,613

    Hi Stuart

    I'm sorry to hear you're struggling so much. I don't have direct experience of PMR but my sister has had it for the last 18 months or so. She's a fitness instructor, so like you, she's found the limitations caused by the pain really difficult physically, emotionally and in managing the fatigue. She was also originally on steroids, which managed the pain but left her tired and moon faced. But she's now on methotrexate and the moon face is reducing. I know it's hard, but think of it as a necessary (if unwanted) phase of your treatment and recovery. I hope the link Christine has posted gives you some tips for manaing the pain meanwhile till the new drugs kick in. Distraction works well - ie do something engrossing that takes your focus away from the pain. Gentle exercise, even if it's stretching etc, will stop your body cramping up, which can happen when you're in pain. My sister also found mindfulness really useful. I hope this helps.

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