Diagnosis??

Hi, I'm new here...looking for some support and advice I guess.

I saw a Rheumatologist yesterday after over a year of generalised pain (which has been getting increasingly worse and more frequent since the Spring) - he diagnosed me with Chronic Pain Syndrome. I tried to question what this meant as I have never heard of it before; he just said it was an umbrella term and he was telling my GP to prescribe pregablin and these would also 'help my mood.' I told him my mood was fine, he just nodded and looked at me sympathetically. I thought, 'oh well at least I have some sort of diagnosis - the internet will have loads of info and advice' but no, I can't find anything official on UK websites. So, I'm feeling really down as everyone was saying how much better I would feel once I have a diagnosis/know what I'm dealing with. I feel like I have been fobbed off or that my transparency about my mental health has been used against me (I have suffered with depression in the past and do still get anxiety sometimes).

After my last bout of depression, I really turned my life around - I returned to study, I felt happy and positive, I kept active, socialised more etc. but this pain is stopping me doing just normal day to day things.

I do have an appointment with an Endocrinologist next month due to low calcium levels, but the GP has already said it is highly unlikely I'll get a diagnosis from them and it is more just to rule a rare condition out.

Anyway, I've been up all night, in pain, mind racing.....I wasn't prepared for such a 'non-diagnosis' and I don't know what the future holds for me.

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6 Replies

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  • Hi

    I find that terrible that a consultant told you you had this but didn't give you an explanation or advice......quite shocking.

    I'm wondering whether he meant myofascial pain syndrome. It is quite similar to fibromyalgia. There is a lot on the Web about it. Like fibromyagia, it may be a case of ruling everything else out. Have you had much in the way of investigations? Tests etc

    Hope you get sorted soon

    Judi

  • Hi Judi

    Thank you for your reply.

    I thought I was being a bit dramatic, but no, there should have been some discussion and opportunity for questions. I was the first patient of the day and the Dr came in late; I waited almost an hour to be seen and think he just wanted me out asap! The consultant seemed nice enough, but he had a very strong accent and was quiet spoken so maybe I misheard.

    I've had lots of blood tests, RA and Lupus have been ruled out. I have been taking Vit D for about 4 months. Hopefully my GP can go into it further - he's really good and I see him in 2 weeks so will just have to get on with it for now. I will ask for a second opinion if he can't offer me any sort of explanation I think.

    Best wishes

    Kookee

  • Maybe discuss and suggest seeing a rheumatologist too as they diagnose fibromyalgia and MPS I think.

    It's a long and frustrating road when you are going through test after test trying to rule things out to ultimately reach a definitive answer and diagnosis.

    Good luck

    Judi

  • Hi Judi

    Yes, it was a Rheumatologist I saw! Never mind, hopefully if I keep pushing I'll get answers. And maybe at the end of it all it is going to be something I have to work out for myself. I guess I've learnt not to have any expectations from doctors.

    Thank you for your support.

    Kookee

  • I wouldn't worry about the exact wording of Chronic Pain Syndrome, It can also be called Central Sensitisation and other things too, but the bottom line is that it is Chronic pain which is different from acute pain.

    This website might help ouh.nhs.uk/oxparc/informati...

    There is a lot about it on the internet, and you might want to explore the Pain Tool Kit too:

    paintoolkit.org

    Pregablin is the first line but it doesn't work in everyone, so you can work with your GP to try one of the others if this one doesn't work. One of the things they have found is that some drugs which in high doses were thought to work on mood disorders like depression, didn't actually work very well, but at very low doses they worked much better on pain.

    You could also ask for a referral from your GP to a pain clinic, as they are the ones that are likely to be able to help the most.

    I know it can be hard to not have what feels like a satisfactory diagnosis, but medicine is a messy business, our bodies don't read the text books and follow suit, they do what they want. That is why doctors get their degree in the art and science of medicine. Medicine is as much an art as a science!

  • Hi cyberbarn

    Thank you for your very helpful message - it was much appreciated.

    I think if I had more time to talk it through (not the 2 mins they gave me at the end of the examination!) I may have not been so paranoid/worried. I also think I'll feel better once I talk things through with my GP.

    I'm feeling more positive now and I know there are a lot of people who are much worse off than me. I plan to take things day by day...that's all we can do.

    Thanks again, take care

    Kookee

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