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Unravelling rheumatology lingo HELP

JodieMJodieM Posts: 5
edited 1. Feb 2013, 11:09 in Living with Arthritis archive
Hello!

So I have received a copy of the letter sent to my GP following my last appointment with my rheumatologist and I am soooooo confused. I can't even imagine how much time I have spent doing internet research about diagnosis words and illnesses etc in the last 3 years, but this latest one has me totally stumped.

Basically it says that the diagnosis is:

- Enteropathic Spondyloarthropathy
- Fibromyalgia

Disease characteristics:

- Enthesitis
- Pre-Achilles bursitis


Now I understand the fibro and am currently testing different combinations of pain meds for that. I also know that 'enteropathic' means it's secondary (to my ulcerative colitis) and I know that Spondyloarthropathy is a term used to describe a bunch of conditions including AS, reactive arthritis etc. But I can find no mention of the two words together so I don't really understand what this means. Also, 'Enthesitis' is inflammation of connective tissue (i think) and this is sometimes a precursor to AS as is (possibly) achilles involvement.

Basically I was wondering if anyone else knows what this could mean or has anything similar?

I'm worried that this means I'm developing AS. Especially because it's linked to UC and every time I see my rheumy she asks A LOT of questions about my back. Though no one has come out and said that this is what they think so I don't know if I'm just overreacting.

Can somebody please help me unravel this web of lingo?

Thank you :)

Comments

  • stickywicketstickywicket Posts: 26,000 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Jodie. It’s nice to meet you. I think you’ve done pretty well in translating from ‘medical’ to English :wink: though I’d beware googling as there’s a lot of misinformation out there unless you stick to the reliable sites.

    Well, you’ve taught me a thing or two already. Thank you. I can’t answer your questions, I’m afraid. Maybe our Helpline people could.

    All I do know is that, as you say, ‘spondyloarthritis’ is an umbrella term and it seems they’re not yet sure which kind of auto-immune arthritis you have but, because they know you have Ulcerative Colitis, which is also an auto-immune disease, they are fairly sure there’s some connection. I don’t think you’re over-reacting by being concerned about the attention paid to your back but they’re probably just keeping an eye on it as a possibility. Are you already on meds prescribed by the rheumatologist? If so, which joints are currently affected?

    None of this takes you any further but the one good thing is that, if you have an auto-immune form of arthritis, whether AS or some other kind, the meds are basically the same. You do sound to have a good, thorough rheumatologist who will keep on top of any problems. I hope so.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • barbara12barbara12 Posts: 20,945 ✭✭
    edited 30. Nov -1, 00:00
    Hello Jodie and welcome
    Sorry I am rubbish at medical words...but whatever it is I hope they find you some help very soon x
    Love
    Barbara
  • JodieMJodieM Posts: 5
    edited 30. Nov -1, 00:00
    Thanks Barbara :-)

    I just think that, if I am developing AS, or am even in a high risk group, I would rather know about it now so that I can do as many crazy things that I have on my 'things to do in life' list now before I become any more ill.

    I've done a lot of amazing things and I'm so glad that I did them all between the age of 18 and 22 because since then I've been constantly sick. If I'd have gone to university in that time and then this happened to me I would be much more upset about it.

    I just think it's good to be aware so you can make the most of what you have. I don't understand why doctors keep you in the dark the way they do. It's not at all helpful.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Jodie, it's nice to meet you. I've read your post and I think you've answered your question. For the ES I think that decodes as a secondary condition which is showing similarities to spondylosis (which is as yet undetermined), you have inflammation in connective tissue rather than a joint and the bursitis is another type of inflammation. Everyone's conditions are unique to them and just because you haven't found those two words together anywhere else is not that significant: people's medical notes are not generally published are they? I hope that they can soon start you on some meds to try and combat all of this, are you taking anything at the moment apart from the pain relief? I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JodieMJodieM Posts: 5
    edited 30. Nov -1, 00:00
    Hi Stickywicket & Dreamdaisy (if those are your real names :) ). Thanks for your input, it's much appreciated.

    I generally do the whole university PROMPT check on websites as if I was doing research for an essay. There are quite a few out there which appear to be total codswallop but I think I'm quite good at sniffing them out now.

    My rheumatologist keeps changing unfortunately. The last one I saw was brilliant and very thorough and thoughtful but the others have been sporadic at best and have mostly had different opinions so I feel like I'm on a bit of a merry go round.

    At the hospital the clinic (gastro / rheum and dietetics) specialists call me 'the complicated patient'. It's not the most inventive nickname but it's pretty apt.

    I'm taking Asacol for the UC (after finally stopping the steroids) and that's working a treat. I was confirmed as in remission last January and that was the first time in 3 years :D so that's meant to help with the joints. When my UC is in flare my joints are far worse but it's my knees, ankles, fingers and lower back mostly. Then I have nerve pain on top which is from the Fibro and I'm taking Amytryptaline for that plus Co-dydramol if I need it. They've suggested switching to Azathioprine or Sulfazalazine to combat both UC and joints better together.

    I'm not sure if these are medications that people are prescribed for inflammatory Arthritis anyway? I've also had steroid injections in the past.

    I'm not allowed to take NSAIDs because I have chronic dyspepsia.

    So essentially I have UC with a spondylitis-like secordary arthritis (most active when UC is active), ongoing connective tissue inflammation as well as Fibromyalgia and a lovely new rheumatologist. :roll: mmmmm, complex!
  • lizzy100lizzy100 Posts: 235
    edited 30. Nov -1, 00:00
    I have enteropathic arthritis and UC. yay a fellow friend! not that its much fun!
    if you have any questions about that i know afair bit about it, so your welcome to PM me, and i can give u my email add.
    You were lucky to get a diagnosis, had mine for 9 months and still not properly confirmed, its suspected. good luck.

    O btw enthesitis is inflamation of tendon insertions, commonly the achilles tendon which is back of heel area. You can also get patella tendon in knee and they thought i could have it in my hands and feet. basically any tendon insertion point. Again its common with IBD :(
  • JodieMJodieM Posts: 5
    edited 30. Nov -1, 00:00
    Ahh Hi Lizzy!

    Ha, no I know what you mean; it's always nice to know that you aren't a complete odd ball. :-)

    Damn IBD! It's such a nightmare. Strange thing is though, only 10-20% of people have any kind of peripheral inflammation when they have UC. Normally it is just the bowels. I guess we are just special!

    How do I PM? That's a good idea.

    Mine actually took years. I have just been diagnosed now but I've had UC for over 3 years. They couldn't work out my rheumatology issues until I had stopped taking steroids, because they can cause joint pain, and until my UC was under control, to see if it was secondary or not. If you aren't in remission it may be the same for you?

    The hardest part was decoding the fibro from the inflammatory arthritis. I had to trial anti-epileptic drugs for nerve pain and then come off them to see if the pain returned in order to get this diagnosis. I've now been put on Amitryptaline for fibro but they take weeks to kick in so it's off work and on the sofa for me.

    That's wacky that enthesitis is common with IBD. I definitely didn't know that. :| bummer! It's definitely in my feet and I do have knee pain all the time so that would make sense.

    Thanks for the help :D I feel reassured :)
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