Discharged from Rhuematologist

So went for my appointment with rhuematology (she was the one who diagnosed me with fibromyalgia and didnt tell me) today and told her things were no better, infact my memory and concentration etc was getting worse and that I would like to be referred to CBT and some sort of pain management group. She said she would write a letter to my GP to get them to refer me again (I hadnt realised she had already requested this), and that maybe I need some adjustments to my meds. However as I left and handed over the slip to receptionist was surprised to hear her say I was discharged. I'm assuming this means theres nothing more the rheumatologist can do for me and I'm now back to my GP's who just sit there looking blank at me. Is this normal ? It seems I may have to refer myself to get anything .

17 Replies

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  • Sadly it sounds like it. I am in the same position. My GP received a letter with suggested drugs as treatment, but other than diagnose Fibro at the moment they can't do much else. It's a result of too many patients not enough doctors 🐸

  • same for me too!

    it sucks

    Jo x

  • I believe there is a cut off point but if you are unhappy with the decision you must say so, it is your health and wellbeing and you do sometimes have to assert yourself. Lou xx

  • Same happened to me to x

  • Me too, I was discharged by a new rheumatologist who said I now had Fybromyalgia when I'd been treated for twelve years for RA !!!!!! She took me off my medication and sent me back to GP 😮 I'm still in the same pain as before

  • I was told by a stand in Neurologist I had to ask if they had a diagnosis, His replied that yes i had fibromyalgia and that i would have good days and bad days. Then showed me out of the door.

    He didnt even send a letter to my GP. he had to request one.

    I was hopping by now that things might be different, but sadly it isnt.

  • That is awful for all of you. That just doesn't seem right that a non specialist in Fibromyalgia,like a GP, would tend to and oversee anyone's care that should be with Rhuemotologist. If that is not invalidating... I don't know what is. I'm mad for each of you that you're not treated with the care from proper provider and specialist that you should deserve. I made for you guys. I thought that some things are better there in the UK versus the US. Apparently this one is in reverse to the deficit of each of you. I hope something changes very soon. That is not right.

    Katherine

  • I'm sorry you're struggling so much. It's common re Fibro but not "normal" or remotely acceptable! Honestly if you report that rheumatologist for failure in communication, and ask for a second opinion, you'll have their backs againts the wall and have to help you. The rheumatologist is meant to help manage your pain. Reference to a pain clinic is good. If you're in London, St Barts hospital has one.

    Furthermore she failed to involve you in decision making. Very poor practice. Should anything happen to you, it will become malpractice. As an ex NHS staff, I advice you complain.

    And ask your GP why he is not communicating with you, ie I am not getting responce to what I say and any health education advice. My pain is 5-8/10. As a gp, what is your role please? What can I expect from you? This reminds him of his "Duty of Care". A bit difficult to ignore you then. You can also see any other gp of your choice in the practice. Or change practice. You deserve better care. They get paid for this. It's disgusting to me, those behaviours.

    I hope that helps.

    All the best sweetie.

    Blessings.

  • Hi there

    I've been a member of this forum for four years, and I would say that the majority of our members have been diagnosed by a Rheumatologist and then discharged directly back to their GP.

    Of course there are always exceptions to the rule as with anything in life. A GP can diagnose Fibro as well as a Neurologist.

    Is it possible for you to see a different GP in your practice? If not, perhaps you could take someone with you to your next appointment. Maybe a family member? Doctors tend to act differently when you have someone with you.

    If you still get no joy then you could look into changing your GP practice.

    It does sound as though there has been quite a lack in communication. Perhaps you could mention this at your next appointment?

    Wishing you wellness and peace

    Lu xx

  • I dont have anyone who could go with me and I've tried a number of gp's within the practice most are worse than the one I have atm. Apparently my rheumatologist had already reccomended that I be refferred to CBT and pain management, but nothing came of it. She is going to send me a copy this time too. Last time she discherged me I had nothing not from my GP or anything infact they ended up cancelling my repeat pescription for pain meds. I think its time to look for another but it's weird here I can only goto certain practices, ones that cover my area. I need to look into this.

    It just feels like no matter where I go or who I turn to no one can do anything to help other than the pain meds. I could use help I cant manage things on my own anymore, but there seems to be no help at all. I could have had adaptions to the house but they need my landlord to write a letter giving me permission for the adaptions, which he hasnt done even thought he said he would and that I could do whatever I wanted. He's not very good landlord unfortunately but it was either move in here or become homeless. I think I need to move, but there is a huge waiting list for council, hence why I'm here now.

    Ty

    Elle

  • I saw rhumatogist only twice. He diagnosed fibromyalgia on first visit did blood tests for sjogren's syndrome on second visit said test negative for sjogren's and discharged me to GP's care. My named GP is not sympathetic so I chose to see a young GP who is d6oin her year in practice dreading her leaving.

  • I am so genuinely sorry to read this but from what I can read from other members it is common place unfortunately. I would chase up your referrals with your GP and make a nuisance of yourself. I want to gneuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Typical , I believe some people are in the wrong profession . I hope you can get this all sorted as quick as possible . I wish you luck.xx

  • I only saw the rheumatologist once, she diagnosed me, gave me a leaflet, prescribed Amitryptiline, and that was it! So I've just been seeing my GP since then, no other help offered.

  • ELLENANNE, AFTER DIAGNOSIS OF ANY CHRONIC ILLNESSES, ONCE ALL INVESTIGATIONS ANDRECOGNISED THERAPIES ARE EXHAUSTED THE GP WHO KNOWS YOU BEST AND IS THE DAILY MANAGER OF YOUR ILLS CONTINUES THE MANAGEMENT THISIS PERFECTLY NORMAL. I MYSELF HAVE FM, AND WASDISCHARGED MANY YEARS AGO, IF CLAIMING BENEFITS IT WOULD BE WISE TO NOTE THEDAILY MANAGEMENT ISWITH GP NOT DUE TO ANY LESSENING OR IMPROVEMENT BUT THAT IS THE PROCEDURE IN ALL CHRONIC CASES IN NHS. MAKE NOTE [AS I HAVE UNDERSTOOD FROM MY SPECIALISTS AND DOCTORS] THAT FM IS A CHRONIC NEUROLOGICAL DYSFUNCTION AMONG OTHER THINGS AND OUR COGNITIVE DYSFUNCTIONS TOGETHER WITH [IN MY CASE]PAIN ASSOCIATEDWITH THE MUSCLE FLEXION IPON MOTION [IE, WHEN WALKING MUSCLESIN MY LEGS,CALVES, CONTRACT YET TAKE AN INORDINATE ANDPAINFUL TIME EVEN SOMEHOURS ANDDAYS TO RELEASE. HOPE THIS IS HELPFUL HAVEN'T FINISHED BUT WRITING THISISASWE KNOW PAINFUL AND CONCENTRATION NAFF.

    CARL.

  • In my experience, yes!

  • Sorry to hear you are suffering. It took some while for the letter from the rhumatogist to reach my GP, when I was discharged after only two visits to the rhumatogist. I was diagnosed last September, my symptoms have also increased since the diagnosis which I believe is due to the pressing on the 18 points causing a major flare of the condition. My GP has been monitoring me every 2 to 3 weeks since diagnosis. Yesterday she referred me back to the rhumatogist as a matter of urgency. Keep in close contact with your GP and try to be kind to yourself and rest when you need to.

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