What I Have Learned From Working With Hundreds of People With AxSpa
Last updated: October 2023
At this point I have worked indirectly with thousands of people with AxSpa and directly with hundreds.
Through this, I have noticed patterns amongst the students I have worked with
I thought I would document some of them and below are the points, which are not exclusive by any stretch. The other thing I have tried to do is present some issues people face but also some positive solutions I have seen time and time again help people.
It takes years for people to get a diagnosis, this is common knowledge!
Patients have to really advocate for themselves, not just to the point of diagnosis but continually and many feel like they are not supported by their healthcare professional as much as they would like to be.
When you meet one person with AxSpa...you meet one person. Everyone has their own unique experience of the condition and it is generally unhelpful to generalize an approach to try to help patients to find relief. As a consequence, the more holistic and personalized any approach to managing AS, whether that be through medication, diet, lifestyle, etc., the better.
There is no one diet for AS
What affects one person will be different for another, there are some common things that most people can identify affecting their pain levels with such as excessive alcohol intake but for the most part it is pretty unique to that person.
The changes in season and also general weather changes such as damper weather conditions can affect pain levels.
One of the most challenging symptoms for people is fatigue
Sometimes the fatigue feels worse than the pain or stiffness and is harder to manage.
Deep relaxation practices such as Yoga Nidra can help people with fatigue.
There is a lot of deep rooted fear around the condition, and this is usually perpetuated by the internet. Those who spend less time deep in forums and constantly hearing other people's stories tend to feel less emotionally impacted by AS.
There is a strong connection between chronic stress and chronic pain and fatigue
The more tools patients have in their AS management toolbox the more likely they are to be able to handle a flare or high pain day.
There appear to be differences between biological sex and the presentations of AxSpa
For example, the women I work with experience higher levels of peripheral symptoms compared to men, such as Achilles tendonitis or wrist pain. However, both men and women nearly always have experienced SI joint pain at some point.
Finding a safe and enjoyable exercise regime really helps with symptoms
When someone commits to a regular and safe movement practice they experience less pain and stiffness and their range of motion generally improves.
Those who involve their family, friends and or partners with their self care (ie. joining in with a yoga class) are more likely to stick to self care in the long term.
The power of community is immense
Having others you can connect with helps people feel less overwhelmed and a greater sense of control and improved mental well-being.
If you enjoyed these quick fire points, I have many more and am happy to do a part two. Just let me know!
Do you notice worsening flares in colder weather?