Has anyone else found it near impossible to get a diagnosis?

For the last ten years I have been managing some sort of arthritic condition. The closest diagnosis I've been able to get so far is "polyarthritis" but I'm fairly certain what I have must be in the spondyloarthritis family. It flares up in seemingly random joints and dies down and is usually accompanied by dactylitis. Until a current unusually bad flareup, however, I've been unable to persuade my GPs to look at it as an ongoing condition rather than a series of isolated incidents.

I've got, for the first time, a consultation with a rheumatologist next week and this is going to sound a bit strange but I'm feeling almost exam-type stress about it. What if I miss my once in a decade opportunity to find out what this is and more importantly get it treated?

Has anyone else found it this difficult to get treatment? And what happens after diagnosis, is it a battle every single time a flareup happens or is it easier once the condition has an official label on it?


  • Airwave!
    Airwave! Member Posts: 2,458

    Typically OA will ‘come and go’ and change according to weather conditions, following this can be time consuming whilst diagnosing and managing can Add to the workload. A diagnosis of arthritis may not give you want but result in a prescription for varied painkillers which your body will soon become used to and have little long term effect. Typically this chain of events may have a downside on how you see yourself and your hopes for the future, not what a GP is hoping to achieve for you.

    Finding out which type of arthritis you are suffering from may not make much difference to the treatment you receive since the factor that brings us together is pain.

    Our emotions follow the ups and downs of our illnesses and is as natural as our moods, we have to be aware and guard against our very powerful thoughts. There are many ways to do this, a referral to a Pain Clinic would be a good start.

  • stickywicket
    stickywicket Member Posts: 27,707

    People do, understandab,ly, tend to want a 'proper' diagnosis but it doesn't actually make a great deal of difference which is useful because many people go for years with a sort of umbrella term diagnosis before something happens to make things clearer.

    if you have an autoimmune type of arthritis - any autoimmune type - you'll be put on DMARDS. If you don't it'll be a matter of going back to your GP for pain relief, physio etc.

    To me (I've had RA and OA for years) 10 years sounds a very long time to have an autoimmune arthritis without deformity. if you've had no DMARDS.

    Don't stress about the appointment. Note any questions you want to ask (Don't take a thick file😉) and be sure to listen to the answers. Taking someone with you as a second pair of ears is useful.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Lilymary
    Lilymary Member Posts: 1,740

    I agree with Stickywicket, make a list of the points you want to cover, and take brief notes on the replies. I haven’t yet come across a doctor who had any problem with this. If you can, take someone with you who can take the notes, that way it’s easier for you to focus on what the doc is saying and raise any questions you might have there and then, rather than being distracted writing stuff down. I often accompany my Mum in medical appointments so we can do this, (at 91 she has a whole raft of medical conditions, and frequently gathers new ones), and it works well.

  • I believe Dr. Google does more good than allopathic doctors...Naturopaths and homeopathics too. I've lived with OA too too long and not many doctors have helped. Physical therapy can help keep joints moving. Cortisone does more damage than good, and often temporary help if any.

    Work with supplements to help ease joint issues...I have for years. And I can't stop the aging but it's all worse with aging.

  • pisica
    pisica Member Posts: 19

    My path to diagnosis was similar, although not entirely the same. I had general hand and foot pain and stiffness that varied in intensity, with different joints affected at different times, combined with a lot of tendonitis and tenosynovitis. I'm fortunate to have always had very good and helpful GPs, who all (5 of them over about 8 years) believed I had some kind of inflammatory arthritis. It took 3 rheumatology visits across 5 years to get a diagnosis of Psoriatic Arthritis. The first specialist told me I had early-onset osteoarthritis (I was still in my 30s at the time), the second time I saw him he finally agreed that I did have Joint Hypermobility Syndrome, and said that that must be what was causing the osteoarthritis, despite the fact that there was still no sign of it on X-rays and I was swallowing pain medication like it was going out of style. My third appointment was, thankfully, with a different specialist, who took one look at my dactylitis and tenosynovitis and diagnosed me on the spot.

    My advice would be research as much as you can. Some doctors hate it if you suggest "is it...? Could it be...? but others will relish that. If nothing else, they may be able to give you a definite no to questions like that, which is its own kind of comfort. If you really believe you have some kind of spondyloarthritis, ask your GP if you can have the test for (I think, but please check it before you ask) HLA-B27. If that comes back positive you'll have a clear indication that you are probably on the right track.

    I know how miserable it is waiting for a diagnosis, while worrying all the time that irreparable damage is being done to joints or connective tissue. I have everything crossed for you (I can do that now that I'm on treatment) that you get some kind of resolution soon.

  • Hellen
    Hellen Member Posts: 3

    So I went to the appointment, and he said "diagnosis: likely spondyloarthritis." Sadly you were right, this has not made a difference. My GP says it will take 7-10 days to process the prescription and mentioned nothing about the diagnostic tests he recommended. They were completely dismissive. I feel like garbage.

    My fear is that this is going to end up costing me my job. I had hoped at the very least a diagnosis might offer me some legal protection in terms of keeping my livelihood but there's not a lot I can do with "likely." My best chance is to stay positive but I dread having any contact with the GP practise. Every time I come away feeling like a nuisance and a waste of space. I feel guilty for bothering them, except that I have no choice whatsoever.

  • stickywicket
    stickywicket Member Posts: 27,707

    Presumably, your prescription will be for DMARDS (Disease Modifying Anti-Rheumatic Drugs). Usually some tests are done first and they necessitate regular blood tests as these are powerful meds which can, occasionaly, have unwanted side-effects though the blood tests will pick up on these before they become an actual problem. Test themselves, of any kind, might be conducted differently right now. Most things are. So it might be that you will be sent for later.

    With many arthritic conditions the diagnosis can be ;'likely', 'probably' or 'maybe'. There are many uncertainties in arthritis and any boss worth his / her salt should either know this or have access to someone who does. You can't be sacked just because your diagnosis, from a consultant, contains the word 'likely' but, if you're anxious about this, have a word with your union representative.

    You are not garbage but we do have to learn to do much of our own 'admin' so, if you were told there would be tests, you are perfectly entitled to ask about them. Equally, you are entitled to ask to be copied in to any report from any consultant so you (a) can read for yourself and (b)have proof of what was said. If you are unhappy with your GP practice you can always change to another. It's simple. Just go to the new one and explain. They do the paperwork. However, I'd wait until your prescription has come through to ensure you are written up for repeats.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @Hellen and a belated welcome to the Versus Arthritis Online Community 😃

    "Achieving a diagnosis" can feel like a big step but also a real let-down in that your treatments, condition and how you cope day-to-day doesn't seem change. We had exactly the same reaction of feeling that the consultant was dismissive and off-putting when we finally got this far and it took a little while to regain a more positive outlook.

    One problem that you have also come across was in finding out about tests and what they were for. A big advantage of this Community is that you can ask here and you will usually find someone who knows or has had the test and can relate their experience.

    Do keep coming back, ask questions and chat to let us know how you are getting on.

    All best wishes