Wish me Luck!

I just want answers. I have an appointment with my very unsympathetic rheumatologist tomorrow. I have been suffering for 6 years and have tried every treatment available to try and get rid of back pain. Morning stiffness that lasts until lunchtime every day. Joint pain and now after a scan I have been told I have fluid around tendons in my hands???? All my blood tests come back fine. So I am made to feel like this is all in my head. I am so tired of being sore and tired of being tired. If that makes senses. Sorry to rant I am normally an upbeat person but this is now getting me so down. I take ora morph an hour before I try to get out of bed. This can't continue. I just need a diagnosis please !!!!!

17 Replies

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  • Hi there

    Is it possible for you to request a second opinion from a Rheumatologist at a different hospital?

    If it's not a rude question - which I certainly don't mean it to be, why do you continue to see him if he is not helping you?

    It just seems to be prolonging your lack of diagnosis.

    You could also try seeing a Neurologist instead.

    Just a thought.

    Best wishes

    Lu x

  • Thank you , if I don't get a satisfactory outcome from tomorrow's appointment I will ask to see someone else. X

  • I hadn't thought of a neurologist. I get myself into a state before seeing the rheumatologist or any doctor. It is very daunting and I don't know why.

  • I do understand what you mean. I can get the same way myself.

    I was very unhappy with a doctor at a Pain Clinic who I saw.

    My GP suggested sending me to a Pain Clinic in a different hospital and the difference was amazing.

    It has made a real (good) difference for me.

    Write down what you want to discuss at your appointments and take your notes in with you.

    That's what I do. It helps me remember what I want to ask and something to concentrate on.

    Lu xx

  • I shoudve done that when i went to pain clinic. The doctor was awful. Didnt address my pain at all, was only interested in my weight. I know weight is important but i needed help with pain, not to be told i was overweight, which i already knew. 😤

  • Look at the size of some of the nurses and consultants in the NHS, some of them should take their own advice! Lol

  • I wish you luck Lizzy-m. It can be daunting and its always good to take someone that is generally assertive, so they can ask things that you may forget, write a little list of things you want to talk about. I do hope it goes well. As BlueMermaid3 says, you are entitled to a second opinion and i would tell the GP & ask to be referred to someone else.

    Luv Jan x

  • Thank you that is exactly what I did. Took my husband with me. I have now at least been diagnosed with Fibromyalgia. Hopefully I can start to understand it. All very daunting though. Take care x

  • Ah well done, I'm glad you finally got the diagnosis and as you say, you now know the problem and its now a learning journey for you to be able to understand it and manage it & come to terms with it. Like you say, it is very daunting at first.

    Although It is a relief when you finally get a proper diagnosis but when you get over that, its all about finding out all the information you need to help yourself and all the various treatments that help, alternative therapies are good &;gentle excersize like swimming, yoga, Thai chi etc. you will find your way.

    Luv Jan x

  • Thank you ♡

  • Hi Lizzy-m

    I am so genuinely sorry to read that you are unhappy with your Rheumatologist and as BlueMermaid3 says you can ask to see a different specialist. I want to sincerely wish you all the best of luck with your appointment and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you x

  • Yes you do need a diagnosis. Drs can sometimes get funny when you request to change one, but I'd try if I were you. Good luck xx

  • I get acupuncture with electric stimulant through pain clinic, with all 12 meds a day I take it has started to help

  • There appear to be two specific problems that need further investigation.

    The first is the Morning Stiffness - may I ask what sort of scan you had and whether it focused on your back? Are you taking anything else apart from the ora morph? Do you receive or have you been offered any physio, injections or pain management classes?

    The second is the swelling in your hands - Did you have the standard Hand Scan that most Rheumy's do to 'rule out' arthritis? Is that when they noticed the fluid in your hands? What's the cause and are they doing about this?

    It may be useful to address all these questions prior to your next appointment, 'get all your ducks in a row' as it were so you can ask very specific and pointed questions based on what has been offered, achieved or failed in the past.

    I agree with others about getting a second opinion but think it's also good practice to absolutely exhaust your current options before moving on - not to mention that I believe consultants should be encouraged to 'earn' their prestige and salary and shouldn't just 'fob people off'.

    One important thing to remember is that Blood Tests ONLY show up or dismiss whatever you are Specifically looking for! If you're Not being tested for Lymes or even High Cholesterol, it is very likely that it simply won't show up or if it does, it won't be recorded by those doing the testing if it wasn't requested.

    Being well-prepared (like going for an interview), will help you feel less anxious. All the best.

  • I wish you all the luck in the world. Please don't let this get you down. Perhaps you should ask for a second opinion, I know it will be a bit awkward but it is you body and no one knows it better than you. Good luck. Izzy

  • Thank you all so much for your encouragement and support. I have been diagnosed with Fibromyalgia today. I have been advised to change from Fluoxetine to Ampitriline. Let's hope I can at least begin to understanding what is wrong with me.

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