Amy began experiencing pain her joints in her early 20s. When her GP on the Isle of Man mentioned it could be axial SpA, that was the first she’d heard of the condition – around 15 years after she first experienced symptoms. Now, she’s taking on Walk Your AS Off this May.Read Amy's story
Sarah waited for 33 years to be diagnosed with axial SpA. Since her diagnosis, she has started taking biologics, reducing her symptoms. Now, not only has she has signed up to Stretch-tember, but she is also taking on a virtual Kilimanjaro climbing challenge too – all to raise vital funds for NASS and awareness of axial SpA.
Here is her story.
I waited 33 years to receive an official diagnosis for axial spondyloarthritis (axial SpA). After repeated trips to the GP and various rheumatologists, I was tested for the HLA- B27 gene and given a full MRI scan of my spine I had to specifically request for this to be done after learning more about axial SpA from working on the .
“I’ve lost 3.5 inches in height over just a few years.”
Axial SpA has caused me horrific pain on most days. I’ve lost 3.5 inches in height over just a few years, and it’s had a brutal impact on my life. At times, I was so frustrated with my body and the pain it was causing me, I simply lost the will to be around anymore. But somehow, I held on, and I have now finally started my journey on biologics. They have helped to reduce the pain inflammation but I still have to pace myself and I am not quite able to do everything that I used to, and the mornings are slow and tricky. However, I hope that things will just keep on improving.
“I know and understand how valuable movement is, so I will be stretching with NASS for Stretch-tember.”
Fundraising to raise more awareness of axial SpA is something that I feel called to do. I know and understand how valuable movement is, so I will be stretching with NASS for Stretch-tember, as well as attempting to walk the steps that it would take to climb Mount Kilimanjaro in the space of a month! This would be wonderful to achieve on the mountain itself one day. But, for now, it’s just 128,263 steps and my imagination carrying me through.
“Without the helplines, information and support, I would have been lost.”
I know first-hand how valuable it is to have the support from both Versus Arthritis and NASS. They have both been a lifeline for me. To support them in return through even a small donation goes a long way. Without the helplines, information and support, I would have been lost. Just £10 helps to maintain this support. I am so grateful to the whole NASS team.
“There are certain movements that I just can’t do any more, and that’s ok.”
I am so thankful to have stayed active over the years, even when it has been extremely difficult to find the motivation to do so. The further damage that would have been caused to my back if I hadn’t kept moving would have me sharing a very different story today. Over the years, I have learned to change and tweak my way of moving to suit me better. I used to take spin classes, use the cross trainer and practise hot yoga. Now, I practise gentle walking, Chi Me, aquafit and Pilates. I have become very aware of my body; there are certain movements that I just can’t do any more, and that’s ok. I use a very holistic approach to managing my pain and fatigue. I focus on the support from my family and Jupiter (my cat). I meditate daily, practise deep breathing, use my infrared sauna, I have a heated back massage, and have tried cold water therapy. I have trained in Chi Me, and I love playing in a Karamba samba band as well as try to eat a balanced diet.
All this, along with visits to the osteopath, letting myself have a good cry when I need to, and running my pain support group in Cheshire for the past eight years, is the self-care I need to self-manage my pain. It has not been an easy journey. I have learned about the vast range of musculoskeletal conditions –often people have more than one and sadly, axial SpA is not the only one that I am affected by.
I would like to think that reading my story has given somebody else out there some hope and the motivation not to give up. I hope that you find the help and support that you need throughout your journey, listen to your body, get to know it, be kind to yourself and do what works for you.
Interested in joining Stretch-tember in 2024? Find out more here.
As a sixteen-year-old, Laura was crushed when she was told by professionals that her increasingly painful symptoms were most likely to be psychological. After three years of pain, doubt and fear she finally received her diagnosis.Read Laura's story