New AS diagnosis and lost
Hi. I recently have been diagnosed with AS. I don’t have another appt until April. However I was given Diclofenac as a pain killer and it does not work! Does anyone else find that NSAIDS don’t work?? I try heat and it helps a little. It feels like everything only ever helps a little. It feels like this pain is endless, like it will always be there no matter how much I try to taper it. I also have not had any capacity for stress lately. Which is hard as my job is a nurse at a jail. It feels like every little thing is bringing me to my knees in impending doom and sadness as well as intense anxiety and panic attacks. Has anyone dealt with this?
Hi, hugs to you! It must be so hard trying to function and dealing with this “stuff” as I call it. I guess the best advice I can give is to understand when someone looks at us they don’t see we are in pain, fatigued, scared etc. I find trying to tell folks abut one’s “stuff” does not make sense to them and they totally never have heard of Ankylosing Spondylitis, Inflammatory spondylitis etc that we are diagnosed with. They think “arthritis” and everyone has that. So hang in there and keep in touch with these groups! And hopefully the word gets out so support is easier to find.
Such encouraging and supportive advice,
! It’s hard to explain something like AxSpA to people who don’t have it, especially to those who’ve never even heard of it. Like you said, that’s why being part of a supportive community like this one is so important. It means a lot to be surrounded by people who truly understand what you’re going through. At the end of the day, we all need a little more grace when it comes to differences in ability. With more education and awareness, I really believe we’d see a more understanding world for everyone. Thanks for being here with us. Kindly, -Latoya (Team Member)
Read from reputable sources. Think about scheduling & streamlining, this latter where you can. As you learn about the condition, share with your family & friends what you have learned, what you can do, & what modifications you need to make life easier for you so you can be at your best. Lastly, do not forget to build in fun for yourself. Anytime we are hit with a new diagnosis & what that entails for the present & future, we can feel panicked, worried, angry, grief stricken, frustrated, or overwhelmed. That is part of assessing a new diagnosis, but don't that you need to smile & even laugh. This is a cornerstone of coping & healing; maybe that's going to a lovely park or getting some flowers or seeing a movie or having out with a friend or something as simple as getting an ice cream cone or a candy bar. Does it make the diagnosis go away? No, but it a momentary reinforcement that life goes on, we adapt, life can have pain, but life also contains joy.
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Well said.
Thank you so much for sharing your wisdom and helpful advice.
My best, Doreen (Team Member)
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Thanks for reaching out.
I'm sorry to hear how difficult it has been for you.
A recent diagnosis can certainly be overwhelming and may bring out a multitude of emotions. May you find a bit of comfort in knowing this community understands all too well what you are experiencing.
It's important to note when pain is out of control it not only affects one physically but mentally and emotionally as well. I'm including a few articles that may provide some help: https://axialspondyloarthritis.net/living/overcoming-anxiety-future and https://axialspondyloarthritis.net/living/pity.
In addition, there is no one-size-fits-all when it comes to treatment and AS.
For many it may take time to find the right treatment for you. This article may provide some helpful information as well: https://axialspondyloarthritis.net/treatment
I would recommend reaching out to your healthcare provider to discuss your treatment and elevated/changing symptoms.
All my best, Doreen (Team Member)
