Hello from another newbie

littlemissmai Member Posts: 28
edited 13. Jan 2013, 11:25 in Say Hello Archive
Hi everyone.

My names Claire, I'm 23 years old and this is my story so far...

It all started about 5/6 years ago, a made numerous visits to my GP complaining of knee pain. I always felt that the Drs didn't really believe me, I was sent away with painkillers and a referral to physiotherapy. Eventually the Drs ordered some X-rays after I began complaining of hand and neck pain too. The X-rays didn't show anything so yet again my symptoms were dismissed. The physiotherapy wasn't helping, in fact it was making the pain worse, so on visiting my Dr again I eventually got a referral to a rheumatologist. The rheumatologist wasn't interested in looking at my hands or neck for some reason and only concentrated on my knees. He ordered an MRI of my right knee. The MRI showed severe wear and tear behind the knee cap and inflammation but my actual knee joint itself appears fine. I was told it was osteoarthritis rather than rheumatoid caused by a mechanical problem. My rheumatoid factor test came back slightly raised (but apparently not enough for them to be concerned about). I was advised to seek the opinion of an orthopaedic surgeon if my knee problems get worse.... So that was that.

I was left wondering why on earth I have arthritis in my knee, and wanted this question answering before I considered knee surgery! After all, I'm only 23 and don't have any family history of arthritis. Why on earth do i have arthritis at my age i wondered. I returned to my GP who then referred me to a musculoskeletal specialist. The specialist examined my knees, hands and neck. On examining my hands i was told I have the beginnings of Bouchards nodes on most of my fingers and along with the other symptoms such as pain and stiffness he told me my symptoms are consistent with inflammatory arthritis.

He examined my neck but couldn't see anything obvious. He did notice tender points consistent with fibromyalgia. He said its likely I have inflammation in my neck and fibromyalgia causing me to get headaches every day (my GP told me it was tension headaches).

I have made yet another appointment to see my GP on Thursday, where I hope to get some answers. Although I'm not very hopeful!

Rheumatology told me it wasn't rheumatoid arthritis, the musculoskeletal specialist told me its inflammatory arthritis. Am I understanding correctly that inflammatory arthritis is just another term for RA?

I just want to find out whats going on and I feel confused when I'm getting conflicting information from different professionals.

My symptoms are getting increasingly worse, I'm struggling to do everyday activities such as write and walk my dogs because of the pain.

I've come here to share my experiences, get advice and just meet people who understand!

Claire x x
x X x


  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hello Claire,

    I am sorry to hear you are having so much pain. I am sorry I can't realy answer your queries as I am the parent of a young person living with JIA. but I wanted to say hello and good luck with your appointment on Thursday.

    You don't say what medication you have taken or been prescribed, if any, do you take anything for the pain?

    Have you tried ringing the help line on here, they might be able to help you sort out the right questions to ask at the GPs on Thursday, and hopefully move things on quicker for you.

    Good luck and kind regards.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello littlemissmai, it's lovely to meet you but I am so sorry you have had to seek us out. I hope I can help with answering some of your questions but I am not a doctor, just a practising arthritic.

    Arthritis can start at any age and in any form (some of our youngest 'members' are as young as eighteen months). There are fundamentally two sorts, osteo (which is sometimes termed the 'wear and tear' arthritis as a way to explain its onset) and the inflammatory sorts which are auto-immune based. Of the latter there are many types, each affecting one differently but all caused by the immune system going into overdrive thus making the body attack itself. I have a creaky foot in both camps, I began with what was eventually termed an 'inflammatory' arthritis then, when my skin helpfully obliged with a bout of psoriasis that label was changed to psoriatic arthritis (PsA). The joint damage from that has led to OA.

    For OA there is not much to be done in terms of treatment, it comes down to pain relief (and perhaps anti-inflammatory tablets) and exercise to help keep the muscles supporting the affected joints as strong as possible. For the auto sorts drugs can be given with the aim of suppressing the immune system to stop the cycle of attack. These bring their own problems. The auto sorts are far harder to diagnose - if you do not present with the classic symptoms (as I didn't) it can take some time. I was first turned away by rheumatology but I got the last laugh on that one. :wink:

    A measure of rheumatoid factor (RF) obtained via blood tests is not necessarily reliable for diagnosis because there are RF negative forms (of which my PsA is one). What gave the game away for me as an inflammatory sort were very high levels of inflammation, my CRP and ESR were massive until the right combination of meds brought them under control. Seven years passed from my trouble first starting (with a swollen left knee) to the first med I tried. I began that in January 2002 (I think), crikey, that's eleven years ago! Strewth.

    I can't think of anything else to say right now but the only answer to 'Why me?' is 'Why not?' I used to think that stuff only happened to other people then suddenly I was one of those others. It may be interesting for you to Google The Spoon Theory and There's a Gorilla in my House - both explain how difficult in can be to live with (and to be living with) someone who has long-term health conditions. I wish you well and hope to see your name here and there around the forum. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Hello and welcome from me, too, Claire. I think the other two have covered all the points I'd have made but you might find the following helpful.
    I think this will clarify that the info you've been given isn't contradictory. It's just that a firm diagnosis can take some time.

    I hope the GP's appointment will be helpful. They can be very good at explaining clearly what the consultants have said and what that means. Do let's know how you get on.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
    Hello and welcome

    I was really sorry to hear what you're going through. I also have been diagnosed with fibromyalgia and have osteoarthritis, particularly in my hands. This forum is an excellent place to get sympathetic and impartial advice and support. Keep in touch and all the best,

  • littlemissmai
    littlemissmai Member Posts: 28
    edited 30. Nov -1, 00:00
    Thanks everyone for your replies. I will let you know what the Dr says next week. I'll be much happier once I get a firm/ clear diagnosis so I can accept it and learn to live with it. It's just so confusing being given different information from different professionals.

    I've only just started my first time proper job since qualifying from uni so I'm worried about the impact it's going to have on my ability to work, im already struggling a lot but managing. I guess I'll cross that bridge when I come to it.

    Thanks again for all your lovely replies.

    x X x