What are your top tips / advice for newly diagnosed members?


Patients Ankylosing spondylitis

2 replies


Topic of the discussion

• Community manager
Posted on

Hello members,

The goal of this discussion is to provide members who have been recently diagnosed with ankylosing spondylitis with tips and advice, from members who have been diagnosed for 5 years or more, on how to cope and better accept the diagnosis of ankylosing spondylitis.

Members, if you have been diagnosed for 5 or more years with AS, please join in on this discussion and share your top 3 advice and tips for newly diagnosed members to better accept the diagnosis, cope with the condition, and live a fulfilling life.

Members who have been recently diagnosedPlease join in on the discussion, ask questions, and feel the support.

Beginning of the discussion - 3/19/19

What are your top tips / advice for newly diagnosed members?

• Community manager
Posted on

Hello members, I hope you do not mind me tagging you but I encourage you to participate in this discussion and to share your advice and wisdom with others.


What are your top tips / advice for newly diagnosed members?

Posted on

I was diagnosed in 2002. The best 3 things I can tell you are

1. Don’t freak out too bad. Your daily routine will change and you won’t be able to do things as well as you are accustomed to, but you can still do them. Just don’t over do it or you’ll pay for it tomorrow. Get off your ass and move. The longer you don’t move, the more painful it will be when you do. 

2. Find a GOOD rheumatologist and get a base set of range of motion numbers so you and your Dr can monitor your progression. Including x-rays, MRI, bone density, etc. Then discuss and start a treatment regimen and stick to it. Yes it includes exercise and diet modification. A lot of foods cause inflammation. Others reduce it. If something isn’t working, talk to Doc and fix it. 

3. Get your family involved. They want to help. Just don’t start using AS as an excuse. Trust me, it’s easy to do. Go ahead and accept that you have AS and it’s not going anywhere cuz there is no cure. It WILL get worse. It’s a progressive, degenerative condition but you can slow it down and you CAN live with it. It’s tough for a while but it does get easier. Hope this helps. 


Oh yeah, don’t forget to GET OFF UR ASS AND MOVE🤡🤡

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