Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie
Hi all! We have been experiencing an issue on site where threads have been missing the latest postings. The platform host Vanilla are working on this issue. A workaround that has been used by some is to navigate back from 1 to 10+ pages to re-sync the thread and this will then show the latest posts. Thanks, Mike.
Hi there,
There is an issue with role permissions that is being worked on at the moment.
If you are having trouble with access or permissions on regional forums please post here to get access: https://www.boards.ie/discussion/2058365403/you-do-not-have-permission-for-that#latest

Ankylosing Spondylitis Sufferer Looking for Support

  • 04-03-2015 5:17pm
    #1
    HenryChinaski
    Registered Users Posts: 118 ✭✭


    I'm 32 years old and was diagnosed with AS around 3 years ago. I have a whole host of other problems too, such as fibromyalgia, chronic muscle pain, arthritis in both shoulders, and a severe cough and chest problems.

    I'm on Remicade and Celebrex and it does pretty well for me. For the most part, the pain is pretty manageable, but it's always there at the same time.

    Like the cough is pretty constant and my shoulders (the left side in particular) are always at me.

    Anyway, recently I've been struggling a bit more with the mental strain of it. The pain has been worse than normal of late and I've just been feeling a bit more emotionally strained than usual.

    I live in Korea and between health insurance costs, the costs of my Remicade treatments, and trying to save the money I need to eventually be able to leave Korea, I'm stretched pretty thin financially and can't afford to get into the costs associated with finding English speaking councillors out here.

    Neither do I want to be bothering the people around me about it. (A) I don't want to be throwing a pity party or be seen to be looking for attention. And (B) while my girlfriend has been very supportive, and was incredible during that first year before Remicade, when I was in a lot more pain and was struggling to come to terms with my diagnosis, I now feel like she got a bit sick of hearing about it, so I generally prefer to avoid overt displays of neediness around her. I can't hide when I'm pain, but it's also not fair to use her as my sole medium for venting my pain and frustration.

    In any case, I feel like I'd rather try to hear from people who also suffer from chronic pain diseases. Basically, what do you do when it's getting the better of you? How do you live with chronic pain without bitching and moaning about it? For the most part, I've gotten good at just getting on with it, but at times like this, it can be pretty hard to feel so worn down while not having anyone who could really understand it, even if they wanted to.


Comments

  • #2
    LorMal
    Closed Accounts Posts: 3,372 ✭✭✭LorMal


    Henry

    I am an AS sufferer - diagnosed about 6 years ago but I have had it since my early 20's (I am late 40's). Sorry things are so bad for you. I used to suffer a lot but not since I went in Embrel - life saving drug for me.
    Are you sure you are on the right meds for you? I think sometimes its trial and error until they get the right fit.
    i dont know if you hae ever visited the KickAS.org website - it's great for a chat about AS with other ASers and they are a mine of info and opinion!
    Keep well - its tough - I understand


Advertisement