My story so far

Hi everyone.

My name is littleladymai (It's not my real name :-p) , I'm 23 years old and this is my story so far...

It all started about 5/6 years ago, I made numerous visits to my GP complaining of knee pain. I always felt that the Dr's didn't really believe me, I was sent away with painkillers and a referral to physiotherapy. Eventually the Dr's 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 to myself. 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 of this week, 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 it's inflammatory arthritis. Am I understanding correctly that inflammatory arthritis is just another term for RA?

I just want to find out what's 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!

LLM x

8 Replies

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  • Hi there, before i forget the main thing I want to say: there are various types of inflammatory arthritis and RA is, I think, the most common one. It can be very difficult to distinguish between different types so a 'starting' diagnosis of inflammatory arthritis can be a good thing. the initial treatment for most types is the same and in any case if treatment doesn't work or suit you then you can expect to be given different drugs. Even if they are very, very certain it's RA then the 'try it and see' approach to drugs is usually how it is done. Other types of inflammatory arthritis are Psoriatic Arthritis and Spondyloarthritis (which I do not think I have spelled correctly!). There are other kinds too.

    Your frustrating story has some similarities to mine. 2 years on from diagnosis though and the irritiation and confusion I felt at first has nearly disappeared. I know my rheumatologist better and trust him more, I understand my disease much better and I've nearly forgiven all the bumbling idiots who got it so wrong in the beginning! And I feel very well these days. Look to the future because everyone says the early days are the worst.

    All the very best to you, hope things improve rapidly from here on. Luce x

  • And also, I'd advise you to very, very firmly ask your GP both to get your blood tested again for inflammation etc. and to refer you back to Rheumatology - I was a bit too comforting in my response I think as obviously you want further investigation and don't seem to have been offered any treatment yet. I quite understand why you are feeling confused.

  • Hi and welcome here. The answer to your question, as Luce has explained, is that there are over 200 types of arthritis. OA is the most common followed by RA - and after that many are in the Spondyloarthtiis family - which includes Psoriatic Arthritis (PsA) and Ankylosing Spondylitis. As you are young and obviously articulate I think it's important that you push hard for further investigation so ask for a re-referral for a second opinion. RA is most commonly picked up on when it shows in the small joints - hands and feet is where it usually starts and it's predominantly in the knuckles - and that is fairly specific usually to RA. There is another blood test called the Anti-CCP test which a rheumatologist should request because it is more specific to RA. However even if they rule out RA - they should still be looking at the Spondyloarthritis family for you as these diseases are just as serious and can affect the joints you specify as well as causing secondary OA.

    Keep pushing and have a look at Earthwitch's latest blog too. She often says how she wished she had pushed for further investigations harder when she was much younger. Luce is right - you should ask your GP to check your inflammatory markers (ESR and CRP) too - although inflammation doesn't always show up in the blood either. But also check out blogs from Litte Em, Tara and Soph Holmes who are all even younger than you and have had RA for many years already. Also if you go to Arthritis Care "Living with Arthritis" forum you will find many others who are young and have been diagnosed with OA too. It's like having an early menopause - it's unusual but it certainly does happen to some very unlucky people. Good luck at your next GP apt. Tilda

  • Thank you everyone. I've never heared of Spondyloarthritis before, I'm interested to find out more about that. My rheumatoid factor test came back as slightly positive (only a bit higher than the 'normal' range and I've had the anti-CCP test which came back negative. When I see my GP I will certainly push to have more bloods done and to be referred back to rheumatology. Things are becoming quite unbearable and I'm finding it increasingly difficult to manage at work. Thanks all so much for your kindness, I will let you know the outcome of my appointment on Thursday! X

  • Well done for being so tenacious and pushing for yourself littleladymai - it's a good sign and I feel sure you'll get to the bottom of things in as far as this is actually possible with rheumatology. If it's any help I am also RF positive (low positive at 24) and Anti-CCP negative. It's less usual with RA but quite usual with these spondy arthritis's apparently. I read this online yesterday on a lab test site when I was trying to find out about my backache and other stuff;

    "When individuals are negative for CCP antibody but have a positive RF, then the clinical signs and symptoms are more vital in determining whether they have RA or some other inflammatory condition. When someone is negative for both CCP antibody and RF, then it is less likely that they have RA. It must be emphasized, however, that RA is a clinical diagnosis and may be made in the absence of positive tests for autoantibodies."

    Hope this helps you in your search. Tilda x

  • Im so sorry to hear that you are suffering and and I hope you get some answers and relief soon x

  • Hi everyone, just to let you know I went to the GP appointment.

    He has made me an urgent referral back to rheumatology so hopefully I will get that appointment through soon and get things moving!!

  • Hi LLN,

    I'm 27 and have had arthritis since I was 17 and very much like your story I went round & round in circles to get a diagnosis I eventually had to go private to get it, but have since been on the NHS.

    I have in the last few weeks had my diagnosis changed to seonegative arthritis a type of inflammatory arthritis as it affects my larger joints similar to yourself. Mine started in my knees & ankles. Seonegative arthritis basically means it affects your larger joints but also rheumatic levels don't show up in my regular blood tests.

    It's nice to know there are people out there similar age to me as I only know 1 other person with it in their 20s.

    Jene x

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