Any advice for a family member of an AS sufferer?

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My 18yearold brother was diagnosed with AS back in Jan14 and from then I have seen a HUGE change in his mood (as to be expected). The pain he experiences is often chronic (Mostly legs/feet but also back, shoulders, hands, pretty much everywhere). He is currently trialling different types of medication which haven't really worked for him and has only had 6 sessions of physio since his diagnosis.

As it stands he does not leave his room, he does not go out with friends (or will have them come over), he will not even attempt to work part time/look for a suitable position just to trial, his sleeping pattern is awful (I understand he has huge trouble sleeping however he makes no effort to to look into what is out there for him to ease this problem). 

I have tried talking to him and I have tried backing off completely and everything in between but he will not open up to anyone. I think he needs to talk to someone in the same position as him or a professional, focusing on quality of life/depression or 'low times' but I dont know how to encourage him to do so. 

Are there any AS sufferers who have gone through this state of depression that could share their experience and how they got through it? Or perhaps a proffessional that could offer further advice? I would grately appreciate it!

Thanks!

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5 Replies

  • Posted

    If he wants to talk to me Kendall I can impart what bit of knowledge I have, I can relate to the pain side when I started I was working out of town doing 14 hour days and nights, never knew what as was not 100 percent sure now. all I can say the pain is awfull and draining but he needs to snap out of it it can wear you down if you let it. I have the pain for about five years only got my diagnoses 2013, hardest part was getting the medical people to listen to me.
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    • Posted

      Thank you, I think it would be a huge help to him, I think its easier for people to confide in strangers sometimes because family and friends will worry and 'faff' its just trying to convince him to actually talk to people in the first place. Hopefully i will be in touch (or he will). Thank you again for taking the time to reply and offering your help I really appreciate it!
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    • Posted

      Never a problem always here , just a shame he is so young always think it's a older person thing, but my reading up states otherwise if he as any hobbies try and get him out to do them, mine is golf ok when playing after that pain time, what I'm saying is if he really likes something he will except the after pain and look forward to his hobbie. Hopefully then fighting to enjoy it more,  and not let the pain  his life
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  • Posted

    Its hard I know I've suffered for 12 years now and only got my diagnosis 7years ago.its frustrating at first to understand what's happening and why you?to be able to do the things you once did and struggle with now.I had two young children to look after and the pain and frustration made me so angry and left me feeling useless.but as time goes on its got better I still find it hard to ask for help and hate people pittying me.

    Patience understanding and time once he accepts and understands and gets the right meds things will change.forums can help for advice or even to chat

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    • Posted

      Yeah you're right, he hasn't found the medication that is working for him just yet so i'll take your advice and not push him into anything, thanks for the reply!! It's encouraging to hear that things changed for you, and others.
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