Living with Ankylosing Spondylitis (AS) | Petal Wainwright shares her story

living with ankylosing spondylitis make time to exercise with Fish and Field biokineticists in Bryanston, Johannesburg

Living with Ankylosing Spondylitis

In November we did an overview article on AS, along with a follow-up article on safe exercises to do when living with Ankylosing Spondylitis.  With that in mind, we asked one of our current clients, Petal Wainwright, to share her story. This is her account of her journey from her diagnosis with AS, to where she is today.  Hopefully this will help and encourage others living with AS:

Petal Wainwright shares her story with Fish and Field Biokineticists

I was diagnosed with AS in October 2016. My life would change forever without me even realizing what my body was going through. I will take you back to the very beginning, and how I have managed to get to where I am today.

Being diagnosed with Ankylosing Spondylitis

I fractured my neck in 2000 from slipping in the bath. I had a lot of pain at the time and have had constant pain, headaches, and tingling down my arms ever since. I thought all the pain was still related to this, until I started getting pain in my fingers and my toes. It was only now that everything started to go downhill and I started connecting all the dots from the last several years. In the past 10 years, I have had plantar fasciitis, carpal tunnel syndrome, tennis elbow, hot sweats (not menopause), a lot of spinal pain, and iritis (inflammation of the middle layer of the eye).

Once the pain in my fingers and toes started, I found a Rheumatoid Specialist Physician, whom confirmed I had rheumatoid arthritis, but she was not convinced that the pain elsewhere was related. She sent me for x-rays and blood tests to confirm her suspicions. My blood results confirmed that I had the HLA B27 genetic marker, which is a chronic autoimmune disease and causes AS. I went for second opinions to other rheumatoid specialist physicians, who performed more blood tests, more x-rays, and a MRI scan. And again, the diagnosis was confirmed that I had AS.

Straight away I was put on methotrexate medication, which is a chemotherapy agent and immune system suppressant. I had to take 8 tables once a week, every week for the rest of my life. The tablets made me so nauseous, I could not even get out of bed, and the pain was not subsiding at all. I suffered from chronic fatigue and was not allowed to take anti-inflammatory painkillers to help with the pain. After experiencing the worst December in 2016, I started investigating some sort of support system of other people living with AS because I felt as though there was no support in South Africa, I felt so lonely and confused. The main problem I find with AS is that you do not look sick and therefore people think you are fine.

My journey to England in search of answers

Eventually, after a lot of research, I found a hospital in Bath, England. It has been the best thing I have ever done. The most amazing doctor, Dr. Raj Sengupta, accepted me into his AS program for July 2017 at The Royal National Hospital for Rheumatic Diseases, Bath.

During January 2017 to July 2017 I had four cortisone injections into my sacroiliac joint, and one into my shoulder joint. I was told to do yoga by my doctor in South Africa, which I started early January. The week before I left for England, my yoga instructor was preparing me to start headstands, which I later found out would have been the worst thing for me. I was doing very little on a daily basis because of the chronic fatigue and became very depressed. My new doctor in South Africa changed my weekly methotrexate tablets to the weekly abitrexate injection. This helped hugely with my nausea, but not my fatigue.

I was very nervous and scared to go to Bath, England alone and to see how bad the other AS patients would be. I expected the worst and was really worried about what I would find out from the doctors. I was completely amazed at how well the other five patients were coping with AS and they had all been to the AS program before, it was really encouraging listening and talking to them all.

Hydrotherapy for AS

When I arrived at the hospital and we started the program, my BASDAI (Bath Ankylosing Spondylitis Disease Activity Index) score was 6 (which isn’t good) and I had shrunk in height because I was already getting into the classic AS question mark shape. At the end, my BASDAI score was 1 and I had grown 2.5 inches in height. It made the biggest difference in correcting my posture.

The program ran for two consecutive weeks where we learnt many different things for coping and living with Ankylosing Spondylitis. We were given a daily schedule of our different activities. We started and ended each day in the hydrotherapy pool. We did stretching classes and mild gym exercises everyday. Each day we had guest speakers come to educate and talk to us about AS, namely a psychologist, Pilates instructor, tai chi instructor, yoga instructor, physiotherapist, podiatrist, and an orthopedic doctor. We had talks and were counseled about cranial osteopathy, sleep, bones, AS, balance, biologics and anti TNF blocker (a biologics medication). Every second week I do the Humira injection (anti TNF blocker), which takes up to 6 months to become effective, which has made the biggest difference on my body movements. The Humira injection took 6 weeks to be approved by the rheumatoid foundation and gets home delivered.

While I was in the hospital, it made me feel safe and secure because we all had the same condition and understood what each of us was going through and experiencing. I found out that all the symptoms I had experienced in the last 10 years was all related to AS. I did not want to leave the hospital after the two weeks, I even cried myself to sleep. I felt so emotional about how complete strangers could make me feel so safe and I was scared to leave. I had a new found motivation to get up every morning and make the most of my day and I wish to go back to the AS program as many times as I can.

Continuing my journey with Fish and Field Biokineticists

On my return to South Africa I have continued to do the hydrotherapy pool sessions, stretching everyday, and have a physiotherapist come to my house. I have ensured to keep my mornings free to make sure I look after myself and do whatever I can to make my day as normal as possible. Some mornings I wake up with a lot of pain and fatigue, but getting up to do my daily morning routine helps 8 out of 10 times. If it does not help, I will just spend the day at home taking it easy. The physiotherapist comes twice a week and works mainly on my ligaments and muscles. I go to the Off Nicol Rehab Center once a week, where I met Jenna, who helps me with biokinetic exercises in the pool. These mornings are the best for me as they help me carry on each week.

Going to England has been the most beneficial and life learning experience and I would definitely like to go back at least once every two years. I want to keep learning more about AS so I can educate other patients living with Ankylosing Spondylitis in South Africa, and make them understand AS better.”

Further Reading

To find out more about Ankylosing Spondylitis visit the UK site NASS.

To book your hydrotherapy pool sessions please Contact Us.


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