New hope for patients in pain

Patients with a type of arthritis affecting people from their teens and 20s are being given a new lease of life thanks to an intense exercise class run at Barnet Hospital.

The training sessions, which are run by physiotherapists, help people with axial spondyloarthritis, also known as axial SpA, which over time can cause bones to fuse together, resulting in severe pain – most often in the back. 

During the class, patients are encouraged to push themselves as they take part in a range of different activities, including using a treadmill, an exercise bike, steps and doing resistance training and stretching. 

And once the exercise course comes to end, patients are encouraged to continue the routines on their own.

The sessions are run by Nahid Islam, a specialist physiotherapist, who said that because the patients are engaged and enthusiastic, they often see really positive results. 

He said: “One of the aims of the class is to empower patients to trust their body again through exercise and to learn how to exercise independently learning what works for them and what doesn’t work for them. It also helps them learn how hard they can exercise without causing a flare up, as they learn about normal responses to exercise and when their body feels like it has done too much.

“It is really motivating for patients to see what other patients with the same condition can achieve with their bodies following effective treatment and management. All the exercise approaches chosen for the class are based on a literature review completed by our department.”

Shanice Gidigbi, 29, from Edgware, said she started experiencing excruciating back pain when she was just 20 years old and at university.

She said: “I knew the pain wasn’t normal, but I didn’t know what to do. I was away from home; my friends didn’t really understand and at the beginning I just tried to manage it with over-the-counter painkillers but the pain always came back. I did see a GP, but they referred me for physiotherapy and that had no effect. I didn’t push at the time, even though I was sure the stabbing pain wasn’t muscular. I was young and didn’t know how to advocate for myself.”

After finishing university and starting a new job Shanice experienced a bad flare up leaving her unable to even walk. Her father decided to use his private medical insurance to get Shanice help and that’s when she was finally diagnosed with axial SpA. 

Even armed with a diagnosis the last few years have not been easy, including her pregnancy. But Shanice, pictured below with her son, says the exercise sessions at Barnet Hospital have benefitted her.

She said: “Things are better. The classes were excellent, it was a very supportive community and I still do the exercises at home. My son Cruz is a huge driving force for my journey towards a healthy lifestyle as I need to be able to run after him!”

Paula Kopitko, 49, who has had axial SpA since she was 25 but was only diagnosed last year, says the exercise class has made a huge difference to her life. 

She said: "Being with other people who have the same condition has been a revelation. You don't feel so alone. I'm really excited because I'd stopped going to the gym because of the pain I was in but now I feel ready to go back as I know how to adapt the exercises.

"When I was in my 20s, the pain was bad even then, but it was put down to muscular issues or problems with my discs. I remember on my wedding day taking anti-inflammatories and feeling in a lot of discomfort on my honeymoon."

More recently, Paula's job as a make-up artist and beauty therapist had become a struggle as her symptoms worsened.

She said: "I put it down to just getting older. I had stopped giving people massages because it had got too painful for me, and I wasn't booking in clients first thing in the morning as I was struggling to even get dressed."

As Paula finally got her diagnosis so did her 17-year-old son Ben who had suffered from pain in his feet since the age of 12. Both mother and son are relieved that they finally have answers and a pathway of treatment.

As well as exercising, Paula also takes medication, which has also helped with her mobility.

Neil Rogers, 44, from Cheshunt, is another patient for whom life has improved following participation in the exercise classes. Neil suffered from severe back pain from his mid-teens but with no diagnosis he was forced to self-medicate and estimates he took six to eight Ibuprofen each day for 20 years.

This had dramatic ramifications for Neil, when in 2017 one of his kidneys shut down. Luckily, he made a recovery and was eventually diagnosed and referred to the physio team. 

Neil said: "I'm not a gym bunny but I still manage to do the set of stretches that Nahid gave me every day and I aim to walk 10,000 steps every day. I feel like I was pushed but at a pace I could handle. I think when you are in pain your default setting is not to move but it’s about changing that mindset to say I do need to stretch and move.

“The good news is you don't need to spend thousands on equipment either. I just use a rolled-up towel to help me with my stretching exercises! After being in constant chronic pain during my entire adulthood, it is just incredible to have an improved quality of life. But it does take constant work. If I don’t exercise one day I start stooping over again. The exercise also helps with my mood which can be affected by the medication."

An estimated 1 in 200 people are believed to have axial SpA but it often takes years for someone to receive a diagnosis, which means patients can spend a long time living with unnecessary debilitating pain.

Nahid added: “We’ve shown that these patients respond incredibly well to these exercises. They are relatively young and they are highly motivated and engaged. Patients are given an exercise pack at the end so they can continue to improve their stamina and flexibility. For many patients the classes have evolved into a community where they still meet up for a coffee or to exercise together.”

Sian Bamford, the advanced practice physiotherapist who initiated the classes, said: “Our new exercise group for patients with axial SpA is one of the ways we are working to improve the quality of care we give to our patients. We’re also working very hard with GPs and colleagues in our hospitals to improve the identification of patients with the condition as on average it takes eight-and-a-half years for patients to get a diagnosis and we want to speed that up.”

See here for further information available on our website about axial SpA

See here for axial SpA exercise pack