Scared young person- advice appreciated!

I first went to the doctor 3 years ago (when I was 17) with pain in my fingers and hands, I had some blood tests but they came back clear and I was told there was nothing wrong. Since then the pain and stiffness and struggling has been getting worse to the point where I rang my doctor again for advice. Thankfully she has referred me to a rheumatologist and I am waiting to be called for an appt. But the thing is, my first experience with the doctor has left me terrified that I won’t be believed, or maybe I’m making it up, or nothing is wrong still. Can someone put my mind at rest? What is the first appointment like? Has anyone else had a similar experience? I seem to be dropping everything and struggle with the most random tasks at the moment. Thank you so much for reading! I’m glad to have found this place.


  • MoWW
    MoWW Member Posts: 74

    Hello @Soph45

    welcome to our online forum, I am sure you will receive plenty of information and support from our friendly and informative community.

    I appreciate it can be a difficult time waiting for a formal diagnoses and attending the Rheumatology clinic for the first time. Have you been in touch with our Young people and Families Service? Each of the four nations have staff within the Young People and Families service, (YPFS), who support young people living with any form of arthritis or musculoskeletal condition.

    You can get in touch with the local team by checking out 'In my area'. You do not have to have a formal diagnoses to engage with our services. Speaking to our YPFS team and hearing from other young people about their experiences may help reassure you.

    I have added a few links below to our website where you can find out more.

    We also have a free Helpline, if you wish to speak with someone from our Helpline team.

    Good luck with your appointment, I hope all goes well for you,


  • RadarsBear
    RadarsBear Member Posts: 9
    Hello 😁
    My RA started in a very similar way. I dropped everything, and anything. Then tha pain started, just in my right thumb. My GP told me it was a sprain, but 6 weeks later the "sprain" was no better, in fact it was spreading! Then came the blood tests, hospital visits and the diagnosis.

    Don't worry about whether the GP believes you or not. Trust me the Rheumatology team have seen and heard it all before. Even the oddest of symptoms. One of mine, that felt completely unrelated at the time, was dry and flaking skin. Just be honest and tell them everything, even if it feels unrelated.

    I suggest you ask someone to go with you to your appointments. It's a comfort to have the company and also they will likely pick up on things that you may have missed. I'd also suggest making a list of questions you'd like to ask, and trust me there are no silly questions, if it's bothering you then ask. You may find it useful to keep a pain diary and take it with you when you attend the hospital. Make a note of what hurts and when it hurts.

    I hope this helps a little. Remember we were all in your position at some point. Some many years ago others months ago. As for myself I've been on the RA road 2 years now. Everyone's RA journey is different but we are all in this together and we are here to help one another and offer support.

    Take care
    RadarsBear 🐻♥️
  • MarzMac
    MarzMac Member Posts: 47

    Hi @Soph45

    If you've not found the Arthritis Tracker for young people yet, you can download it here and and use the info you've tracked for your rheumatology appointment.


  • frogmorton
    frogmorton Member Posts: 29,236

    My advice @Soph45 is to take someone with you for support.

    Also make notes before you go so you can say what happens, when and for how long. How it affects your daily life etc and also any other 'odd' symptoms such as severe exhaustion or a fever...

  • deesa05
    deesa05 Member Posts: 3

    I was 20 when my symptoms of PsA started and for a year was told to take ibuprofen by the GP. When my symptoms didn't improve they referred me to a Rheumatologist.

    They are the people who will listen and see your symptoms in a different way. Don't worry..... just be honest with them about what your symptoms are how they are affecting you.

    Hope it goes okay :)

  • Hi Soph45

    Thank you for posting on the forum, and I’m so sorry to hear that your first experience with the doctor has left you ‘terrified’, which is understandable.

    I have read through each of the responses that you have received and can only reiterate what each has said to you.

    All the suggestions seem really helpful, and I hope that they relieve some of your fear, and you can make use of some of the practical advice too.

    So, really it just leaves me to say you are very welcome to call us on our freephone helpline: 0800 5200 520 (weekdays 9am – 8pm), here we can take our time to talk informally and in confidence, a listening ear can be really helpful.

    Best wishes

    Lynda 😊

    Helpline team