Fiona’s story

“Walk Your AS Off has given me a target and encouraged me to keep positive.”

Fiona has experienced pain in her legs, hips, elbows and wrists since she was a child. She has only recently been diagnosed with axial SpA and is still awaiting the treatment she needs. Last year, Walk Your AS Off gave her a target and something positive to aim for.

Here is her story.

WYASO 2023, Fiona Hughes and Lester

Before my journey with axial SpA began, I was always a keen runner. I enjoyed an active lifestyle, running cross country with friends a few times a week. I completed a half marathon in March 2019. Running was never easy, but I loved the outdoors, the feeling of achievement and ran with a great bunch of ladies.

I have only recently been diagnosed with axial SpA after suffering unexplained pain in my hips and back for nearly a year. However, examining my history it became obvious to the specialist that this condition had been creeping up on me for many years.

I am 48 years old. As a child, I can remember having the most awful leg cramps and this was always put down to growing pains. However, I was always very active.

Later, there were numerous cases of bursitis in elbows, hips, and wrists. Then I had unexplained stomach issues. I also have thyroid disease, so I had assumed this caused my bouts of fatigue and aches. After having my daughter 14 years ago, I developed calcific tendonitis in both shoulders and had surgery – this was particularly hard with a 6-month-old. When I asked doctors why I had it occur in both shoulders, they just said I was unlucky.

Then in March 2020, before vaccinations, I caught Covid and was very ill for 8 weeks. After a period of rest, I developed a painful lump on the top of my foot – this turned out to be a cyst attached to tendons. Then a few months later, just as I returned to running regularly, I developed another on my other foot. These were removed via surgery. After weeks of rest, I returned to running again. I experienced a few aches and pains – my hips began to feel very painful – but I pushed through this.

The last time I ran was in May 2022 – I ran 5 miles. I had done this run on many occasions, but this time, I woke up the next day unable to walk and bear any weight. It was all quite scary. I visited an acupuncturist, a chiropractor, and a physiotherapist. The pain became unmanageable, and I had ultrasound guided steroid injections for bilateral bursitis of the hips. The pain was worse than childbirth. I’d had steroid injections before, so I knew something wasn’t right.

They say stress feeds the symptoms of axial SpA. Unfortunately, I had been suffering terrible stress throughout the pandemic.

My husband and I had lost our income overnight with no government support as we have our own company and work from home. I was also experiencing some unprecedented family upset that I was struggling to cope with emotionally. My world literally fell apart, and my main support network gradually disappeared.

After 9 months of being unable to see a GP and being referred for “mechanical issues”, I finally got the results of some scans. The pelvic scan showed bilateral sacroiliitis and axial Spa. The NHS waiting list for rheumatology is currently 40 weeks. I was in unbearable pain, so I paid to see a private rheumatologist. I was diagnosed with axial SpA in March 2022 and was put on the long NHS list for further treatment that is unavailable privately. I have been prescribed some drugs to help with the inflammation and pain, but I am still awaiting to see an NHS specialist to talk through my life-long treatment plan.

NASS have been the only people to advise and direct me during this time.  

It’s so important to me to give something back as I cannot think of someone else going through this without the help and support. I had not heard of axial SpA. When people ask about it, I try and explain but it’s so difficult – there is no cure. Movement does help but I am unable stand or sit for any length of time making it a difficult condition to understand. It’s invisible. It hurts like no other pain. It’s relentless. I hate it and for what it has taken from me. I have two choices – to sit in a corner and cry or to move to help slow progression and to stop fusion.

Exercise and stretching are the main things above medication that can help. Not running though. Right now, I am unable to run, cycle or walk long distances. So, I’ve had to settle for gentle weights and cross trainer. I have joined a lovely local gym who I have explained my condition to and they have been very supportive.

During Walk Your AS Off, I’ve had tough reminders that I can’t socialise like I used to – otherwise, I will go into a flare of symptoms. I cannot fit into a day what I used to.

Walk Your AS Off gave me a target and encouraged me to keep positive.

WYASO 2023 Lester

I want to help others and educate others about this awful, invisible condition. It’s early days and I’m not sure of my future but I am determined to keep moving! Since I currently cannot walk long distances, I am converting my time on a cross trainer, as well as my weight training, into steps.

WYASO 2023 Lester

This week I have called in my dog, best mate and nurse, Lester, who has been with me every step of this journey. He doesn’t like axial SpA either as I can no longer take him on 2-hour walks like we used to, where we would get lost in the woods. Instead, I have to stay near a bench. He is clocking up steps too for me!

I’m lucky to have amazing people by my side on this journey. One thing I have learnt is to have the right people by your side and that to keep stress to a minimum. It’s not quantity of support but the quality. I may still be waiting for further treatment. But, in the meantime, I know I have the NASS Helpline and forums for information and support on exercise and just general advice. Thank you.

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