Scoliosis is a rare musculoskeletal disorder that causes the spine to twist into an ‘s’ shape. The idiopathic disease affects approximately 2% of the global population – largely women – and treatments can often be extremely invasive and aggressive. With the right type of training, however, it is possible to enjoy movement and exercise again, writes Niamh O’Donoghue.
I have been living with scoliosis – a debilitating disorder that approximately affects three or four in every 1,000 people in the UK and causes the spine to twist and contort – for almost two decades now. In that time, I’ve learned a great deal about the intricacies of movement. Prior to my diagnosis, I was extremely active and danced competitively, rode horses, swam, played football and ran races. I was happiest whenever I was active.
My diagnosis put everything on hold due to the aggressive nature of the high-risk treatment, which involves very technical surgery to cement two titanium rods on either side of the spine to support it. A further three surgeries fused my spine to my pelvis, rendering my torso into one solid mass of bone which left me unable to bend forward, backward, left or right. It took many years to build up the courage to go to a gym.
That reticence to train probably stymied my recovery, especially when we know that movement accelerates healing, encourages blood-flow and muscle growth, diminishes keloid and hypertrophic scar growth and rebuilds resilience against the negative impact of stress and inflammation.
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To add further resistance to my recovery, I was too afraid of going to the gym out of fear of hurting myself or not finding an instructor who understood the complexity of my body. Fuelled by ableism, gyms and fitness centres can be very toxic and intimidating spaces, especially for those who have visible or invisible disabilities, larger bodies or who are neurodiverse, but new research suggests that with the right type of movement and support, it is possible to enjoy exercise again, as well as improve your quality of life.
Here are the five tips I’ve learned about moving well with scoliosis.
Introduce manageable movement
“Movement is everything,” says Róisín Egan, a physiotherapist at Activ8 Physio specialising in scoliosis-specific exercises, who describes movement as like taking a breath but for your joints, muscles and tendons. “All the tissues in our body need movement to be healthy. If we are just sitting at a desk being sedentary and not moving, our body is stuck holding its breath, gasping for air.”
Through her practice, Egan helps her clients find a form of movement that speaks to them, in conjunction with some more ‘formal’ bespoke exercises called physiotherapy scoliosis specific exercises (PSSE), which are recommended by the International Society on Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT).
Egan likes to use what she calls a “trying on new shoes analogy” to help new clients identify what exercises they like. “I’ll say, ‘Let’s try out some exercises together and see which ones suit your body the best!’ Just like shoes, not all size 7s will fit me in a shop [and] it’s the same with exercises. It’s about trying different things out together, then picking the ones we think fit best.”
“The heart of the matter is that I want movement to become a part of this person’s life and help them to understand what feels good for their body, understanding why, and empowering them to have some ownership of this process.”
The official UK Physical Activity guidelines suggest physical activity for at least an hour a day to have better outcomes for scoliosis management. Finding a spare hour to focus on self-care, however, can be an impossible task in today’s high-octane world, especially for those who struggle to cultivate a routine or prioritise physical or mental health habits, or have family, friend or work commitments.
If you hard relate to this, Egan’s message is simple: “Don’t be afraid to break this down into more manageable sized blocks. Have a 10-minute stretch in the morning and evening, a 20-minute walk at lunch and 20 minutes of something else you fancy. It feels much more achievable than an hour of anything.”
Enjoy the weightlessness of water
My first post-op swim was truly restorative. It not only alleviated my discomfort (getting used to new internal hardware is no easy feat), but helped me to feel centered and strong during a period of instability and extreme change as I navigated the world in my new titanium body. While specific research and data on the benefits of swimming for scoliosis is lacking, it’s known that swimming reduces stress and boosts our levels of “happy” hormones (this study found that cold water immersion can actually increase dopamine levels by 530%).
I’m not alone in my quest for joyful weightlessness: Straight2Swimming is the world’s first swim programme for children and young adults with scoliosis and through the power of swimming, the group helps build confidence and overall wellbeing. Perhaps most importantly, it also gives children the chance to participate in a sport and activities they never thought they could. Although there is no adult-only counterpart, there’s nothing stopping you joining your local swim club or venturing to the nearest shoreline or lake.
Maximise core strength
Our spines provide all the support we need to carry out every single movement and rely on strong muscles, tendons and ligaments to provide the best support. Without a strong core, we would simply crumble into a kind of soup-like, fleshy mess. While pilates cannot reverse your curve, it can teach you how to release tight areas of your spine, improve your awareness of alignment and strengthen the internal muscles that support and control your spine.
At Build & Breathe Scoliosis, founder and trainer Emily Hale promotes movement and conditioning in a safe, relaxed and guided environment. Born from lockdown and a need to introduce specialised and personalised pilates training for people with spinal conditions, Hale, who underwent spinal fusion aged 15, wants to arm people with the tools they need to self-manage their symptoms and improve their physical and emotional health through movement. Build & Breathe Scoliosis runs a mix of live and virtual pilates classes as well as cardio classes, which are all adapted to be safe and effective for scoliosis and spinal fusions.
Hale starts by helping her clients rebuild confidence with their bodies: “Our journeys with scoliosis are all so unique, so any newbie starts with a chat with me or our lovely cardio trainer Hope. This helps us all to make sure we’re meeting you where you’re at, instilling confidence from the get-go and can understand any individual struggles you may have with your spine,” she explains.
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“For those with scoliosis that haven’t been fused, or are one year post-surgery, you can get stuck straight in with our group exercise. Our classes are mixed ability, so you can always start with the base level and build up to make it harder when you feel more confident. For those who have recently undergone spinal surgery (between 3 months to 1 year post-op), or those wishing to build confidence in a more tailored setting, we run 1-2-1 sessions that are more personalised and in-depth.
“This is the safest way to get back to strength post-op as we can take things at your own pace, rather than throwing yourself into a group class that could leave you feeling frustrated. We’re determined to improve the long term outcomes of scoliosis and connect scolis around the world.”
For anyone in need of a quick release from desk-induced pain from long periods of sitting down (which we’re all doing a lot more of at the moment), Hale recommends two stretches:
- Lie on your side with your knees and hips facing forward. Slowly open your free arm and gently extend it away from your body. You should feel the stretch in your thorax (chest) and lower back.
- Lie on your back with your knees elevated hip-width apart. Gently drop your knees from side to side. Repeat as many times as you need to.
Stretch it out
A growing body of evidence suggests that improving or maintaining flexibility of the spine can reduce the rate of curvature and other symptoms, including pain. Yoga teachers who specialise with the intricacies of curved spines are few and far between, which often leaves people with spinal conditions feeling isolated, alone or misinformed in their practice. Christine Jauréguiberry of Yogaberry aims to open up the practice of yoga to anyone with scoliosis or scoliosis-related conditions.
Diagnosed in early childhood, Jauréguiberry soon experienced chronic back pain and sought help from all sorts of therapy, including acupuncture, physiotherapy, osteopathy and chiropractic care. Fuelled by self-advocacy, Jauréguiberry eventually found relief in yoga. The benefits she felt were almost instantaneous.
“Yoga was something that pretty much from the first session made me feel better in my body,” she says, noting the difficulty she faced early on in her practice due to lack of education or awareness of scoliosis. Then she came across pioneering scoliosis yoga teacher Elise Browning Miller, who transformed the yoga landscape in the 70s with functional classes and workshops focusing on back and sports-related injuries.
The main difference between a traditional yoga class and one that caters for spinal fusion or curved spines is the absence of backbends, Jauréguiberry explains: “We really think about intelligent movement. We don’t do back-bending or forward-bending, but we always bend forward from the hips.”
You might ask what are the benefits of yoga without twists and bends? To start, consistent breathwork is known to stabilise blood pressure, help boost our immune system and release stress hormones, to name a few. Drawing from her decades of experience, Jauréguiberry aims to open the practice of yoga to everyone and help restore balance and reduce pain with gentle movements: “We usually start lying down on our backs, which I think is a great position for anyone. Sometimes we use a few props like hand towels if you’re feeling quite twisted and rotated. We usually start with relaxation and breathing.”
Jauréguiberry’s method focuses on body awareness, alignment and posture, always bearing in mind an individual’s needs. Yoga, she believes, is for everyone – not just the fit and flexible! “We relax first and release any tension before we start any kind of movement or strengthening. Then we go into gentle movements and the back is in a neutral spine position. It is still an individual practice, right?
“So I always give people different options [of poses] because there might be people who want to do a little bit more. I think it’s really important to make sure that everyone feels comfortable and that they don’t feel like they’re a big failure because they can’t do the poses the way a teacher does.”
Step it up with strength and conditioning
“The most common complaint I hear from scoliosis clients is concern about doing particular exercises or sport for fear of actually damaging or injuring their back or making their scoliosis worse,” says personal trainer, ultra-marathon runner and former All Ireland Bodybuilding Championship competitor Eva Butterly, whose own journey with scoliosis is nothing short of awe-inspiring.
Butterly was first diagnosed with severe adolescent idiopathic scoliosis aged 12 and underwent spinal fusion to halt her curvature from progressing. In her late teens she discovered the power of weightlifting, which transformed both her understanding of the condition and the strength of her body and mind. Butterly trained five days a week, taking her body and mind from vulnerable to unbreakable.
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“I would say movement is probably the most important thing,” Eva notes of the importance of physical activity for someone with scoliosis or spinal fusion. “Out of any of the other treatment options out there, moving your body every single day is the best because it’s an amazing pain reliever; [it] strengthens the muscles, supports the joints, ligaments, tendons and, over time, is helping help keep your spine from degenerating any further. Exercise releases endorphins, so it’s great for pain management as well as your confidence and your mental and emotional health as well.”
Whether you’re taking your first steps in the gym or want to step up your fitness game, Eva’s advice is to start using your bodyweight (ie no weights). “What I would recommend is using your bodyweight for the first couple of weeks, and working in the different movement patterns such as a squat, a lunge, a push and a pull movement, as well as getting some core activation in there.”
For complete beginners, Eva’s aim is to help empower her clients about their bodies by introducing different muscles involved in supporting the scoliotic spine. She does this by introducing body waves and light resistance bands, adding that “a combination of bodyweight and a little bit of resistance bands” works well for many people.
In Eva’s case, her workout journey began slowly with small hikes, eventually building up her endurance and fitness to run a 5k trail, then 10k, a half marathon and then an ultra marathon. Through her work as a PT, Eva believes more people in her situation could have the same positive outcome if there was more emphasis placed on education and awareness of scoliosis and fitness.
“More research is needed in relation to the importance of movement for long-term recovery from scoliosis. I think more education is needed around the importance of movement too, and then you can drill home the importance of that and how it’s going to benefit their life and the condition. With more education, I think there’ll be a lot of better management for scoliosis too.”
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