Hello!

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oliveleabridge
oliveleabridge Member Posts: 3
edited 28. Nov 2023, 14:05 in Living with arthritis
Hi all

I'm 43 and have just been diagnosed with osteoarthritis in my back, hips and knees. I'm normally really active, with lots of running, hiking and swimming, and I love being outdoors. Since March 2018 I have had 2 big bouts of severe fatigue, each lasting 3 months, leaving me confined to the house for large chunks of time, along with a lot of pain in my hips and legs. I also now walk with a crutch because my body does strange things when I walk and I get tired and run out of battery very quickly. It's completely changed my life. I'm trying to do some gentle exercise and I'm doing my 10 mins yoga every morning and physio. It's been very hard coping with the slowness of the medical system and the big changes in my lifestyle.

Can any of you give me any tips with diagnosis? I have a very good general consultant who is still working on things, and a rheumatologist who thinks it's reactive arthritis after a nasty virus (which would be great news, but the virus is unspecified and I have been tested for them all). However, I'm thinking about getting a second opinion because the symptoms seem to be progressive and also because I don't think the rheumatologist is taking the severity of my symptoms seriously. Xrays showed enough damage to diagnose osteoarthritis but I haven't been given any details of what kind of damage and where exactly it is. I'm also aware of gender differences, for example, in the treatment of ankylosing spondylitis.

Years ago, a GP got some blood tests done for me because she thought I had ankylosing spondylitis. I have also asked whether I have rheumatoid arthritis because of the long bouts of severe fatigue (about a year apart). Both consultants seem to be focusing on blood tests, which have been negative, instead of the full picture of my symptoms.

I'm just wondering whether any of you have advice re how to move along the diagnosis.

Thanks very much

Olive

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Oliveleabridge,

    Welcome to the forum, it’s lovely to meet you. For almost a year you’ve had bouts of pain in your back, hips and knees along with fatigue, and time when your symptoms have receded?

    I can really relate to the battery being unplugged, it’s amazing how fast the change can be from fine to zero energy.

    It is difficult to diagnose some varieties of autoimmune arthritis, especially the sero-negative ones, and reactive arthritis is tricky too since you can’t do a blanket test for viruses, there are so many viruses around and each needs a specific test. Asking for a second opinion is easy now though it can delay diagnosis a bit waiting for your appointment. In the past I have been for a second opinion privately (not an arthritis related issue) and then I joined his NHS list just to speed things up.

    It seems certain you have osteoarthritis of the back, hips and knees. That will be treated with anti inflammatory and pain relief medications with advice from physio and possibly a pain clinic.

    I’m adding our information from our website here

    https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-spine/

    You are doing the right things with exercise, you can self refer to a physio if you think it will help.

    Keep positive, use distraction to cope with pain, be nice to yourself, try not to be frustrated or stressed, that’s bad for any arthritis :wink::wink: Post on here for any help you need specifically, lots of issues have already been problem solved.

    Do look around the forum and post where you feel comfortable and keep us updated on your next appointment, there is good advice which we can share when the time comes

    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hello, Olive, and welcome.

    The very brief answer is a blunt 'no'. The longer one, which might be of a little help, is that your 'case' does sound complicated and often it's hard to get a clear cut diagnosis of a specific type of arthritis especially with reactive (ReA) and the sero-negative forms of autoimmune types such as ankylosing spondylitis (AS).

    GPs, all too often, seem to think a negative blood test means no autoimmune arthritis but rheumatologists know better. However, ReA is also sero-neg and can (though by no means always) morph into rheumatoid (RA). Plus (a further difficulty) autoimmune arthritis can co-exist with osteo (OA) as I know to my cost.

    I've never heard of gender differences in the treatment of AS but I do know that RA damage and OA damage show up differently on x-rays.

    What medication have you been prescribed?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • oliveleabridge
    oliveleabridge Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hi Yvonne and Stickywicket

    Thanks so much for getting back to me. It's great to hear, Yvonne, that I'm not the only one with battery problems! It's so frustrating because I 'look ok' to many people but I often get so tired even walking around the flat and definitely when I am out and about. Sometimes when things are bad, even the end of my street seems a million miles away.

    I've had these symptoms coming up 2 years now and if it hadn't been for amazing partner, sister, and friends, I don't know what I would have done. Every time I have a medical appointment, because I have been through my story so many times, it feels traumatic, and often I get a real low the day after even quite a good appointment. There's something about telling your story over and over again and not getting a diagnosis that can be really upsetting.

    Thanks for the info and helping me put things in perspective. I would love to get your advice before my next appointment, which is with my general consultant on 10 Feb. It's hard to get it right with reporting new symptoms and asking the right questions. Even though I'm normally quite confident, there's something about medical people that shuts me up and stops me from asking for explanations and clarifications. And I struggle with how much I should tell a consultant in each appointment because one consultant told me I was telling him too many symptoms.

    Stickywicket, I'm managing pain with yoga, hot water bottles, a fair amount of swearing, regular warm showers. Naproxen gave me gastritis over xmas so I have been off that, and occasionally taking co-codamol, but it wears me out. My rheumatologist mentioned pregabalin. I'll check on the Versus Arthritis website for info but has anyone had any experience with this one?

    I guess what's really getting me right now is that the way my body works has changed so much over the last two years but, as I said, I 'look ok'. This means people joke with me about whether I need my crutch, or they say I am looking good. I really worry that even the consultants just see someone who doesn't look as debilitated as I am. I keep a symptoms diary and I have tried to be as specific as I can about symptoms but I do now wonder whether they just see an ok looking woman in her early 40s and end up not believing me.

    Thanks for letting me moan!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Brief reply as, despite being 23 years in and on meds, my psoriatic arthritis (PsA) is in its fourth week of flaring, my OA is bad thanks to the weather and my muscles are sore thanks to fibromyalgia.

    I was born with auto-immune issues so for me no surprise is involved but I am wondering if auto-immune inflammatory issues affect others in your family? My parents omitted to trouble themselves with the junk they gave me, Ma supplied the eczema and asthma, Pa the psoriasis. There is a genetic link to the auto-immune inflammatory kinds of arthritis but they can and do start out of the blue. I've never been healthy so have no idea how it feels: this must be very hard for you.

    Don't repeat your story, print it out, laminate it, hand it to whoever needs to know. Rheumatologists know full-well that their patients are very capable of looking good whilst feeling anything but. I would like to type more but I am flagging. Read The Spoon Theory (it's online): I started today with five and two have already gone! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I'm not surprised you feel a bit down, tired and deflated after even a good medical appointment. Sometimes we invest so much emotional energy into them that they wipe us out whatever the outcome.

    Could you explain what you mean by 'general consultant', please? I understand rheumatologist and GP and even 'consultant' as a term covering all specialists but I've not come across a 'general consultant' before.

    To some extent I can understand the 'too many symptoms' attitude. Sometimes people come on here listing about 15 - 20 and only about 3-4 can be connected with arthritis. You might want to check out the symptoms of OA, R eA and AS on the Versus Arthritis website. Not all our symptoms are anything to do with arthritis or the meds we take for it. Sometimes we just get other things too like everyone else.

    Believe me, whatever 'blend' of arthritis you have, people won't understand though they'll probably think they do. As long as the one or two important people do that's enough. The rest you can just whack with your crutch :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright