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My RA consultant is a bully.

Hello. I'm new here so please forgive any mistakes. I need some advice. I have been stuck in my bedroom since February as I can't manage the stairs. My consultant has DEMANDED that I attend an appointment at the hospital or "i will no longer treat you" even though I explained the situation. My GP is no help and regularly reduces me to tears. I am in CONSTANT pain. I have a morphine patch that is useless. I take tramadol which might as well be Smarties. They stopped my Oramorph which was the only thing that helped. I am on so much medication i must rattle! I take Amitriptyline, Baricitinib, tramadol, iron, folic acid, vitamin c and prednisalone. I cant cope with the pain. No one listens and they all bully me into doing what they want. I am so fed up. My RA is ruining my life. How do I get my consultant to understand that I have pain everywhere. I also have fibromyalgia and he blames that for everything. I tell him I get symptoms A,B and C and he says thats not a side effect of the medications. But if I'm getting them what do I Do? I always feel like a naughty school pupil when I've seen him.

Answers

  • EllenEllen Posts: 150 mod

    Hi @RadarsBear

    I know you are wishing to speak to the Helpline Team, but after seeing your post felt I wanted to at least welcome you to the Online Community tonight.

    You sound as though you are having such a rough time and it's possible that one of our members will see your post this evening and have some experience to share with you.

    I also thought you might want to have a look at this information about PALS:


    I am sure you will get some excellent support tomorrow from the Helpline Team.

    Best wishes

    Ellen.

  • Thank you so much for the lovely welcome Ellen. I felt a bit better just being able to "unload". Thank you too for the PALS link. I shall check it out. :)
  • Mike1Mike1 Posts: 454 ✭✭✭

    You need to speak to PALS like suggested but I would also recommend that you contact Adult Social Care at your Council as they may be able to send an OT out to you to see what help they can offer, they mat also be able to help get a stair lift put in for you. I sympathise with your pain issue, I am on MST and Oramorph myself yet am still in constant pain throughout. I would, however, recommend that you find something to do to help take your mind off things. Do you have a hobby that you enjoy? Can you get down stairs by "bum-shuffling" from one step to another then sit outside? I know it isn't easy but one has to make a bit of an effort, even if it increases pain in the short-term, to reap some benefit. I hope things improve for you soon.

  • Dear RadarsBear

    I'm so sorry to hear of your situation. When you have a complicated pain problem you may start to feel as though the specialists are frustrated with you as much as the problems you are bringing. But sometimes you may find it helpful to see a specialist pain management clinic - as their approach can be a holistic one, and might be of benefit.

    The doctors are all very concerned about some of the long-term implications of the opioid medications and they are under pressure to reduce the use of these drugs. I'm attaching a link to a BBC story about this later.

    If you'd like some support on the phone, you'd be most welcome to ring us at the Helpline on our freephone 0800 5200 520 (9am - 8pm Mon-Fri)

    Best wishes

    Guy Helpline Team

  • frogmortonfrogmorton Posts: 25,114 ✭✭

    @RadarsBear

    I am so sorry to read your post. Bless you it sounds pretty awful😕 if offloading helped why not come and join in with the rest of us I'm sure it will help you to chat to people who understand and won't judge.

    Sending some ((()))

    Take care

    Love

    Toni xxx
  • Hi Mike1 and frogmorton,
    Thank you both for your messages.
    Yes it helped a LOT to unload and nice to realise I'm not alone or going crazy!
    I was diagnosed with RA late 2018 and Fibro late 2019. To say the diagnosis changed my life is an understatement. It's changed my whole families lives as well as mine.
    I can cope with everything except the on going and cosistant pain.
    To answer your question, yes, I challenge myself every single day. I'm always pushing myself. I've not given up yet 😁
    Thanks again for your kind thoughts and words. RadarsBear 🐻
  • stickywicketstickywicket Posts: 25,867

    Radarsbear, I hope you've managed to action some of the really useful suggestions which people have made.

    Just a heads up. Very many years of RA and OA, new joints etc have made me realise that the job of a rheumatologist is, essentially, to get our disease under control. If our blood tests show that our DMARDS (in your case baricitinib) is doing this then the rest is, for better or worse, up to us and our GPs. GPs can only, really, prescribe physio, pain relief and a Pain Clinic. The ball's in our court for the rest.

    I think most of us acknowledge that physio and distraction are our main weapons. Even when flaring we need to take our joints, very gently, through their paces daily. If we don't then muscles weaken and pain increases. Distraction is a more personal thing. One man's meat is another's poison. It's a matter of what absorbs us and helps us to forget about pain albeit briefly. Focusing on it only – literally – makes it worse. Or, at least, FEEL worse. And, as you've discovered, pain relief is not a solution because we simply become tolerant of the meds and require more and more to achieve less and less. To physio and distraction I would add at least one good belly laugh per day. Can't beat 'em.

    As Mike suggested, getting in touch with your local Adult Social Care Dept. (Look them up on your council's website) might set a few things in progress to make your life easier and your options greater. I do hope so.

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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