Living with Axial Spondyloarthritis
In this blog post I share my top 5 tips I’ve learned over the 50 years that I’ve had Ankylosing Spondylitis (AS). This also applies to Axial Spondyloarthritis (axSpA), Spondylitis, and any other form of Spondyloarthritis.
Contents:
- Don't be pressured into overdoing the stretching. Absence of injury.
- Practice yoga modified for your AS. Stretch not strain.
- See whether you can do something for yourself in the very long term. Develop regular practice.
- It feels great to practise moving with others with AS, your yoga buddies. Find your stickability.
- Why Yoga for AS can be so beneficial to living well with AS/ axSpA.
1. Don't be pressured into overdoing the stretching. Absence of injury.
Not moving, becoming sedentary, is harmful. But don't be pressured into yoga that is fast and furious, that goes too far, where you get injuries, feel under pressure to act as though you don't have a disease that limits your range of movements.
In a regular yoga class, I explained to the yoga teacher that I have ankylosing spondylitis and have been practising yoga for 26 years. Cued to start a yoga pose called Parsvakonasana, standing side stretch, the teacher announced “Geoff has practised yoga for 26 years so will be able to put his palm flat on the floor”.
This was a stretch too far but I tried to do it, and strained myself, triggering a flare.
I shouldn't have been asked to stretch so far. And I should not have let myself be pressured.
AS/axSpa/SpA Specialist Physiotherapists told me that their professional opinion is that stretching breaks up the inflammation. Over my many years with AS, I have found this to be true.
Aim above all else for safe practice, finding that middle path between doing nothing and doing too much.
See the range of options here.
It’s not just stretching that works, try some deep relaxation when you are in a flare or experiencing fatigue.
2. Practice yoga modified for your AS. Stretch not strain.
40% of members of Yoga for AS say they found regular yoga classes too far, too fast.
These are the kind of things people with AS say about the need to practise yoga modified for AS:
“I have done Yoga in the past but now, having axSpa, certain poses I cannot do, so I am looking for more comfortable poses to help ease pain and stiffness.”
“I find 'regular' yoga too difficult for my body.”
“I currently do yoga classes but find that while some postures help my pain, others make it worse. Being able to practise yoga specifically for ankylosing spondylitis would be amazing.”
You can maintain or improve your mobility. You may not believe it now. You may have had years of not moving or stretching much.
But you can get started with a Beginners Live Online Class or the Foundations Course.
3. See whether you can do something for yourself in the very long term. Develop regular practice.
AS is for life. When I was 24 in 1973 and getting my first AS pains, I wasn't thinking 50 years ahead.
It took me 17 years before I found yoga that helped my “bad back”, and two decades more to find regular safe yoga practice after I was diagnosed in 2009. Don't wait that long before you do something for your AS.
Check out My AS, My Life at the National Axial Spondyloarthritis Society,
To see the many ways you can act for your AS/ axSpA.
4. It feels great to practise moving with others with AS, your yoga buddies. Find your stickability.
A member of Yoga for AS said: “I would love to be a part of a group that has SpA/axSpa and is yoga based, as I don't have that anywhere local to me.” That is why we created this online community as a solution where you can connect with others with AS/ axSpA all over the world.
People don't stick to “exercise” programmes. There are good reasons for this. It can be lonely and depressing. People wait years for diagnosis and have retreated from active life because of pain, stiffness and fatigue and flares. They are fearful of exercise because they have tried and it has made it worse, they cannot do it, they are embarrassed, the “downward drift” seen in many long term health conditions continues. The images of exercise are not diverse and they often show one person on their own.
Most of all, people with AS are not shown what actual exercise to do, how much, how often. The research has not been done on this so health and social care professionals are reluctant to offer solutions.
You’ll exercise when it’s fun. It's fun when you are in a group. It feels great to practise moving with others with AS, your yoga buddies. Then you’re more likely to stick at it. And you need to stick at it. AS is for life. You’ll stick at it best with the support of friends and family, and with other people in the same boat as you.
Whether it’s a friend or family, practice with your yoga buddy. Meeting other people with AS is so empowering, especially when you are doing something about it together.
You can come along to a Live Online Class together, or you can both follow along to a tutorial from the Virtual Library.
5. Why Yoga for AS can be so beneficial to living well with
Axial Spondyloarthritis
The benefits are:
1. Relieving some of the pain, fatigue and stiffness. The number 1 wish.
2. Maintaining or improving your mobility.
3. Sync with your other treatments, you help them to help you.
4. Safe practice helps you develop a better attitude to your AS.
5. Encouragement to and from your family and friends.
When your loved ones see you making an effort to look after yourself, it helps them cope with the effects of this rheumatic disease too.
Overall
The benefits of keeping moving, of safe stretching, strengthening, breath-work, relaxation, finding your regular practice, being with others in the same situation, making new friends...
...they really are out there.
Go for it!
If you would like to practice Yoga for AS, you can explore a Live Online Class or the Virtual Library.
Both of which you can try for free below.