Waiting for diagnosis

Tigerfeet
Tigerfeet Member Posts: 8
edited 19. May 2017, 04:29 in Say Hello Archive
Hi everyone, I'm Anya . I have been suffering widespread joint pain for 6 months now which has turned my life upside down and caused a lot of pain & stress. I have been silently following this forum and have been picking up lots of tips and ideas. I have finally had my rheumatoloy appointment today. She feels my symptoms do not obviously fit with inflammatory arthritis (bloods ok & no inflammation) or osteo (symptoms appeared within a week or two and in lots of joints). I have had some x rays and more bloods taken and am hoping for a diagnosis soon. Nice to meet u all xx

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Anya,
    I am glad you have decided to speak out on the forum as it were, and delighted that you have been picking up some useful tips and ideas. Having followed us for a while you will know the community here is very friendly and helpful.

    Getting a diagnosis is often one of the most difficult parts of living with arthritis and it can take a considerable amount of time sadly. It is very stressful not knowing what is happening with you body and is a natural reaction to such uncertainty. You will know from others accounts on here that it is about being persistent. It may also help to keep a bit of a diary of your symptoms as this can help the Dr in their overall understanding of your condition.

    We do have a little booklet that you can download to help you here is the link https://www.arthritiscare.org.uk/about-us/news/607-my-plan-for-life-book-launches
    You can also contact out helpline on 0808 800 4050 if you would like to just talk things through so you feel clearer in you head about what is the next step for you.

    Our community here will be very supportive so feel free to ask lots of questions that is what we are here for. The best place to post questions is the "living with arthritis" forum
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello Anya and welcome from me, too.

    No-one likes uncertainty and sometimes even a diagnosis of arthritis can seem preferable to no diagnosis at all.

    At least you have seen a rheumatologist who is taking your pain seriously.

    I hope you don't turn out to have it but, as you clearly have something, do stick with us and join in on any thread here. We are good at supporting each other :D
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Anya
    You sound a bit like me (don't obviously fit anywhere! ).
    My pain is widespread but migratory and comes and goes, blood tests were normal ( last November ). This has been going on for nearly 18 months.
    I've been to rheumatology but nearly 6 weeks on still haven't had a letter or report so only partially know what might be happening.

    I assume the blood tests are checking vit D and thyroid.

    I've found that constant badgering of anyone and everyone, where we live anyway, is the only way to get heard.

    Good luck Mazx
  • Tigerfeet
    Tigerfeet Member Posts: 8
    edited 30. Nov -1, 00:00
    Thank you everyone for taking the time to reply to my post. I am feeling down & frustrated at the moment as I am not able to do a lot of things I used to and it is nice to speak with people who know how I feel.

    Sharon - The 'Plan for Life' booklet will be very useful. I've not seen anything like this before and I am going to use it to try and gain some control over this illness (whatever it is!).

    Sticky - You are quite right about diagnosis. I would much rather know which beast I am dealing with. It would help with acceptance and stop me consulting the unreliable and worrying Dr Google.

    Outdoor Maz - Your symptoms do sound very similar to mine. These last few weeks I've had throbbing/burning pain in my spine, knees & hips. Then before that it was my wrists, elbows and ankles. Sometimes they all join in at once if I'm really unlucky!! I just hope we both eventually find a cause and effective treatment.

    Again thank you. I will contine to follow the forum. It really is a great source of comfort and good advice.

    Anya xxx
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
    I totally understand how you feel, frustration with a capital F is one of my all consuming feelings through this saga. That and anger and abandonment at times. I totally agree with Sharon though, shout loud and hard and keep badgering. I got the hospital PALs people to get my appointment brought forward by months. Every hospital has one I think.

    Also, in my case I am tall and slim (ish!! ) and work outside so I've caught the sun. Therefore I get people constantly telling me how well I look which is good but slightly ironic.

    Anyway I spoke too soon because my long awaited letter from rheumatology arrived yesterday when I was in mid moan. I have OA in my lumber facet joints and hands. My knees are next in the queue with reduced joint space all over the shop and thin cartilage and I have degenerative change at the ankle. I have been discharged but the letter includes a line saying I might develop inflammatory arthritis at some point in the future ( not sure how to take that ).

    It's taken 18 months to get this far and now I'm left wondering what to do next.

    Maz x
  • Tigerfeet
    Tigerfeet Member Posts: 8
    edited 30. Nov -1, 00:00
    Oh Maz I really do feel for you. It's so impersonal receiving all that information in a report. It would have been so much better if you could have had a follow up appointment to discuss results in more detail and ask questions. But we know only too well how busy these Rheumatologists must be (seen as it takes so long to be seen initially). And I suppose as its osteo, they don't get involved anyway. I will psych myself up for receiving something similar as I am sure mine must also be osteo as my joints have suddenly become crunchy (crepitus) and like yours, the pain flits about.

    I suppose your next port of call must be your GP. I hope you have a sympathetic one. Have you had any physio? I had some for my back when all this nonsense began but when it started moving into more areas they discharged me until I get a diagnosis.

    I suppose like me your main worries are pain, work and the future. This is where this forum has been of help to me as I see there are many people on it with seriously debilitating arthritis and pain who manage to lead active and rewarding lives despite their limitations. If I'm in this for the long haul I hope I can achieve this too.

    Please let us know how you get on Maz, as I will when I eventually get my results.

    Good luck and best wishes

    Anya xx
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Anya

    It's a lot to take in and yes, wouldn't it be great if everyone had time to explain all this. The rheumatologist was lovely and I didn't feel rushed to be honest but they were clearly very busy. She did a joint injection into my frozen shoulder as well and took time to do it sympathetically and went and got a nurse to help because I'm a fainter but all my questions popped into my head after I'd come out. As you say though, it's the GPs who take it on now I've been discharged.

    I've been referred for physio and I've started Pilates which has been a great help. I also see an osteopath privately once a month but it gets pricey.

    GP wise I have some sorting out to do. I'm with a tiny 2 GP practice currently. One is great, very sympathetic and hugely popular so it's tough to get an appointment with her. The other is totally non plussed about pain, budget obsessed and wouldn't write a prescription if his life depended on it. His refusal to refer me has been part of the problem. Guess which one I got lumbered with and now I discover the great one is retiring. This leaves me with the one I don't like and a series of locums so quietly and without fuss I am applying to join another practice.

    I hope you get some answers very soon. No one wants this diagnosis but if you know what you are dealing with it makes things easier I think and lots of information and company is out there. Well here in fact!! When I read what other people on here are going through I feel guilty moaning about my issues but I also see as you say that a lot of people lead rewarding lives despite it all. stickywicket...if you are listening I have tuned into your sense of humour as well!!!

    Please keep posting and keep us up to date and good luck

    Maz x
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    OutdoorMaz wrote:
    stickywicket...if you are listening I have tuned into your sense of humour as well!!!


    I'm always listening 8)

    OutdoorMaz, if that's true you're on the slippery slope to destruction :lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
    I knew you'd be listening stickywicket but if I'm going down a slippery slope I may as well go down laughing :lol:


    Sorry Anya I've hijacked your thread and you might not feel like laughing.

    Maz xx
  • Tigerfeet
    Tigerfeet Member Posts: 8
    edited 30. Nov -1, 00:00
    Feel free to hyjack away Maz, we most definitely need humour to help us cope with all this arthritis nonsense :D