21 still not Diagnosed...

sunnyhours Member Posts: 151
edited 27. Jun 2011, 14:37 in Young people's community
Hi everyone!
I wanted to introduce myself to the Young people's forum.
Since I'm 13 I've been living with more pain than most people in my age category...starting with chronic migraines and very bad cystic acne that would keep me from enjoying my favorite activities.
My dad has always had knee problems and so did I since I thought it was hereditary and nothing could be done about it...
My friends never seemed to experience the level of pain I would experience daily but thought I was just weak or as my friends used to say a "****"...
Its not until recently that I've been having pretty intense flare ups and swelling in my knees, neck and lower back...
I don't mind the pain I have everyday but sometimes I wish I could have a break from the flare ups since they eat away some of life's pleasures. I just hope it won't keep getting much worse as I'm only 21 and already experience pain on a daily basis, whether from Arthritis or from my the problems...
Anyways thanks for listening,


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Have you been referred to a rheumatologist yet? Inflammatory conditions are usually referred - get your GP to get on the case if he/she hasn't done this already. A rheumatologost may well be able to give you some answers. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,300
    edited 30. Nov -1, 00:00
    Hi Fred and welcome to the forum. Sounds like you are an old hand at this arthritis game. If the flares are getting more frequent/worse then maybe you need a meds review. As DD says - do you have a rheumy?

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • sunnyhours
    sunnyhours Member Posts: 151
    edited 30. Nov -1, 00:00
    No sadly I don't have a rheumathologist...my doctor is kind of a anti-depressant quack...all she ever wanted to prescribe me is anti-depressant, no matter how much pain I'm in...so I self medicate with ibuprofen and OTC muscle relaxant but I'm getting worried about my liver and stomach, since I "study" pharmacology...
    I already started looking for a rheumatologist in my area...I have to find one on my own since I don't think my gp would give me a reference...she'd say something like "you're 21 years old, why would you have arthritis already?"...
  • rachelj
    rachelj Member Posts: 121
    edited 30. Nov -1, 00:00
    Hi Fred,

    I am a bit older at 28, but had the same initial reaction from my GP, pushing me towards depression route, as it takes all kinds of horrid physical forms. I have had 2 lots of depression before so knew this was different. I like you felt stuck at a dead end, so I just booked an appointment with a different GP at the same practice.

    Might be worth doing the same, it amazes me how much GPs vary under the same practice!

    Hope you find someone to help you soon, I got my referral through to the rheumatologist and appointment is in a few weeks, it is just so frustrating being in limbo.

    Take care

  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I agree see a different gp in your practice as your not bound to see the one you are actually registered with. I'll be lucky to see the one we're with it's very pot luck.

    Also try and write a diary for 2 weeks just put when it hurts you, times etc nothing fancy just one liners. State if it's sore in the morning do you get stiff, if you do to many stairs your knees hurt if you rest to much or sat for long it feels like knees lock up etc etc. Then when you go admit how much ibuprofen you have been taking. They probs won't be happy but it's best to tell them so they get a clearer picture just how much pain you are in.

    The first time I took my daughter (who was 3) the dr took one look at her bent her toes right back and said it's nothing but growing pains she'll be fine. 3 months later she was refusing to walk (even in the house). I took in 3 A5 sheets of paper saw a totally different gp and one that i knew i could trust had to wait 3 weeks to see him, he read through it all didn't examine her but said based on what you've written and I can see from here how her joints look i'm referreing you now.

    I would def seek a second opinion as it doesn't matter how old you are you can get this :(

    good luck and I hope you get to see someone soon.

  • sweetprincess
    sweetprincess Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Sunnyhours,
    I can understand that living with pain never feels good.I am 17 years old and suffering from Chronic reactive arthritis.Pain has become a part of my life,if I tel lyou the truth now life seems boring without pain . I have got a habit of it.You must consult a good reheumatologist.There is nothing wrong in taking the opinion.You must also work upon pain management.I try to manage my pain in the best possible way.If I can help you in any way do let me know .
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Sunny hasn't been around for a while, he became a deal happier with life once one or two things got sorted. There is a thread on LWA, it's called 'My Story' and it was started by Kevin Wittering, he's an RcTA like you, it may be of interest to you. He updated it today so it is on the first page of that forum. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SaitenMar
    SaitenMar Member Posts: 24
    edited 30. Nov -1, 00:00
    Hello Fred,

    Sorry to hear that your struggling with so much pain, I know how that feels. 22 myself but was diagnosed when I was 11 with juvenile rheumatoid arthritis, unfortunately getting diagnosed can be an absolute nightmare. Took over a year before I was diagnosed going from hospital to hospital, thankfully a doctor at Birmingham's Children's Hospital took a look at my knees and within a minute diagnosed me. Sounds like your having an even tougher time with it, can be an absolute nightmare I know.

    Unfortunately your friends aren't exactly being 'friends' in my opinion, calling you a '****' for battling an immense amount of pain isn't much help at all. I can tell you something from experience, living with daily chronic pain makes you stronger then most, even if you sometimes feel helpless, useless and alone. Your friends can never really understand your pain without experience it themselves, and the best you can do is describe what you go through and hope they show some understanding.

    As speedalong as stated, if it's getting bad then you might need your medication checked to see if your getting the best treatment possible. One piece of advice I would give you, DON'T BE AFRAID TO SPEAK OUT FOR HELP! What I mean by that is don't just sit back and accept everything, in my years there have been times when I've needed to push to get the best treatment possible to both minimize my pain and the damage that RA might do.

    Stay strong mate, hope better days are ahead.