Whats to come? pls

CreakingDyke
CreakingDyke Member Posts: 2
edited 24. Nov 2011, 06:43 in Living with Arthritis archive
Hi all,
I have bobbed on and off this forum being nosey lol while going through the process of finding out what is actually going on with my body and wondered if anyone could give me a bit of help pls. I'm 34yrs old and have now been officially diagnosed with Ankylosing Spondylitis and Fybromyalgia and although i know what the fybro is all about i hoped that maybe some of you could tell me what i've got to look forward to with the AS. Pls be honest i can take it on the chin lol I would just like to be prepared. Thanks.

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    that a hard question for any one to answer as we all react different to to the meds and arther its self what happens with one person does not with another glad you have found us val
    val
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi and welcome to the site. As Val said its a question no one can really answer. Some people with AS get on suitable meds and live a long, happy and full life, others take a while to find the right mix of meds and struggle.

    This forum tends to be populated by those seeking a diagnosis, newly diagnosed and those more severely affected. Therefore you don't get a fair representation, so please bear that in mind.

    I do believe that exercise is important in AS, have you been referrd to physio?? How are you doing on your meds?

    All I can say with certainty is that whatever path your AS takes, the forum will support you through it!!!! :grin:
  • frogmorton
    frogmorton Member Posts: 30,027
    edited 30. Nov -1, 00:00
    Hi There nice to meet you :grin:

    Glad you have decided to post.

    How long's a piece of string eh? :sad: seriously the sooner you get on some meds the better but everyone is different. Did you see that the lad who played Nicky on coronation street has AS??

    It's a funny time when they finally diagnose you isn't it? It's like relief that you have a name for it (or two in your case), but also sad as you want to rethink your life and future.

    I dont have AS, but some sort of sero-negative arthritis, and have to say that my worst fears have so far not been realised. l am on medication which so far suits me and has slowed stuff down no end.

    Hopefully some of the folks with AS will nip on soon and tell you how it is for them.

    Love

    Toni xx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi CreakingDyke

    Welcome to the forum. It is good that you finally plucked up courage to join in with us :grin: We don't bite. :lol: I hope you will stay.

    I am sorry that I cannot help you with the Ankylosing Spondylitis but I wondered if you have looked at http://www.nass.co.uk/ a charity which is specifically working for people with ankylosing spondylitis, their families and their medical teams. I notice they have a helpline and forum.

    I am sure others "in the know" will be along soon to help, support and advise.

    Look after yourself

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • nurseclaire
    nurseclaire Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi, I also have alkalosing spondylosis and have not yet seen the specialist, all I know is am thoroughly sick of broken sleep and back pain! At least now after nine months they have put a name to it. I am also not sure what to expect or what this means for the future, Good luck & hope you get the treatment that works for you. claire x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    hi CD

    welcome to the forum and they are a good lot with a few also having AS, sadly.

    like the others say nobody knows whats next cus it affects people in different time scales but its never too good to look too far ahead.... a friend of mine says one day at a time and she is right.

    hang in there and the future is never as bad as you fear i found. i ran scared of it for years but its still not as bad as i feared. nice to meet you and as Suzy says exercise is so important with AS. there are some on this site and also the AS site has some too. i don't have AS but my back is fusing its self up and with the exercises and a bit of help from the pain clinic, in my case its not too bad. Cris x
  • terri85
    terri85 Member Posts: 8
    edited 30. Nov -1, 00:00
    Hiya,
    I am 26 and just recently been diagnosed with Ankylosing spondylitis too.
    They are putting me on Anti- TNF, Humira in Jan, and I have heard this can really help, so talk to your GP. Are you seeing a rheumatologist?
    At the minute I am also on steroids, these too have helped a lot with the inflammation and pain.
    This is a life long condition, but managing pain well and the inflammation means we can live as normally as possible!
    Terri x

Categories