Ankylosing spondylitis: Jamie's story

Ankylosing Spondylitis is often looked at as a purely physical condition that affects the spine and other joints, causing pain, stiffness, and fatigue. However, what is often neglected is how it affects the whole person: their identity, relationships, self, and much more. In this vulnerable conversation, I sit down with a good friend of mine, Steffany Moonaz, the founder of Yoga for Arthritis. We talk about my own experience of AS that goes way beyond the physical symptoms. This video is not meant to share advice but to simply share my own journey. Putting out this video is really vulnerable for me, but if it can inspire and help just one person, then it is worth it.
#ankylosingspondylitis #ankylosing #spondylitis #autoimmunediseases
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Disclaimer:
When participating in any exercise or exercise programme, there is the possibility of physical injury. If you engage in this exercise or exercise programme, you agree that you do so at your own risk, are voluntarily participating in these activities, assume all risk of injury to yourself, and agree to release and discharge Yoga for AS LTD from any and all claims or causes of action, known or unknown, arising out of these videos.

[@Wylie.P1]

Thank you for posting this. I am 24 and was just diagnosed with AS this past month. This gives me a lot of hope.

[@yogaforas]

My pleasure, glad it helped. If you ever want to chat and learn more about Yoga for AS reach out, [e-mail] we are happy to help!

[@johnnydough6244]

Currently 37 years old. Diagnosed at age 34. Symptoms started as early as 14 years old.
Disease went untreated and undiagnosed for nearly 2 decades.
This resulted in a slow but gradual fusion of my entire spine, SI joints and neck. Has begun to creep into ribs more recently. No longer can move my head as it’s in a fixed downward angle and protrudes a solid 4-6 inches past my centerline if looking at my profile from side. This leaves me staring at the ground and an off centered posture. This leads to a cascade of problems all the way down to my ankles and toes due to weight imbalance of head over shoulders which domino effects the rest of my thoracic and lower back into my hips.
Have been working physical labor jobs and struggling with a drug addiction since around the age of 16-17 years old. Didn’t realize I was self medicating my undiagnosed disease for the longest time. So of course addiction has been a journey through hell all on its own let alone having this curse of a disease. I have experienced withdrawal countless times before getting proper treatment and God only knows how that accelerated my disease as well.
Doing a fair bit better now but everyday is still chronic pain. Some days worse than others. Always the worst in mornings when first waking and towards end of day or after any moderate amount of physical exertion to attempt to stand as straight as I can, particularly in public as I don’t think I’ll ever accept how I’ve come to look at the age of 37. More OK with and have accepted this is my life now and that my once not disabled, healthy body was a thing of the past.
In the end it is what it is.

[@yogaforas]

thanks for sharing your journey

[@zanalinjakovic9503]

Thank you so much for this! Do you mind answering are you on any meds?

[@yogaforas]

Pleasure! Im personally not on meds.

[@The_Milkywayy]

I have just been diagnosed with AS and have a good range of motion. I have pain in SI joints which reduces with excercise. I want to know if I can keep it under control with good flexibility with just excersise and good diet ? Or do I have to necessarily take the medications ?

[@yogaforas]

It all depends on the person! Some people need both - some don’t. It depends on the level of disease activity. Happy to talk through, reach out to [e-mail]

[@majeeddar9447]

U r talking only but when do exercise not tell anyone wasted time only

[@yogaforas]

We have many videos on our channel for exercises