MY HEALTH EXPERIENCE: Ankylosing spondylitis causes pain, stiffness, poor sleep and anxiety, says
DARAGH KEATING
WHEN I get a pain in my left eye, it’s like an early warning sign for me that a flare-up of my Ankylosing Spondolitis (AS) is on the way. The minute it happens, I have to go to bed to avoid getting run down and exacerbating the pain and stiffness that is coming.
It was after a holiday with the lads in Mexico in 1987 that I first started having a problem with my left eye. It was so sore that I flew the whole way across the Atlantic with my hand over it, I couldn’t bear the light. When I got home, I went to see an ophthalmologist who treated me for an eye infection. It went away but came back again twice over the next few months.
I had no other symptoms at this time, but after the third eye infection (also known as uveitis which is caused by AS), I was referred to the Eye and Ear hospital in Dublin. I had a special blood test for the HLA-B27 antigen which came back positive and X-rays of my back which were inconclusive.
At this stage, I was referred to a consultant rheumatologist who diagnosed AS and prescribed a course of bisphosphonates. When the pharmacist, who was a family friend, told me I would need ongoing liver function tests and would not be able to father a child while I was on these drugs, I made the decision not to take them. The way I looked at it, I was having the odd twinge of pain, but I wasn’t in a wheelchair so I did what most guys would do and just carried on.
A few years later, my then partner and now wife, Rachel, spotted an advert inviting people with AS to attend a public meeting in the Mater hospital and she put my name down. We walked into a room full of people who looked just like me. You can spot people with AS a mile off, everybody walks around like they have a plank stuck to their back.
After that meeting, I joined the AS master programme at the Mater, which I attended every six months over the next two years. The rheumatology nurses and physiotherapists at the Mater took baseline height measurements, showed me stretching exercises and prescribed a specific set of exercises for me to do at home.
With AS, you could have 10 good weeks and then four or five really bad days. The programme at the Mater is excellent, it’s good to feel somebody is keeping an eye on you.
Since we moved from Dublin to Cork three years ago, I have been trying to manage my condition myself. I have to be very careful not to get run down. When I feel a flare-up coming on and the pain in my back and neck getting worse, I have to go to bed and rest for a few hours. I have to lie on my side in bed and roll from side to side all the time, but I’m used to it now. I can never have a lie-in because I will pay for it in pain and stiffness the next day.
AS can be quite restrictive over your life, but you get inventive. Good shoes that provide really good support are essential. I usually buy slip-ons to avoid having to bend down to tie laces. If I’m down on the floor doing a jigsaw with the kids, I have to be very careful getting back up. If I’m out with the lads, I can only drink two or three beers because I wouldn’t be able for the physical effects of a hangover, but now that I’m married with kids, I’m not out drinking and burning the candle at both ends.
Since we moved to Kinsale and I changed jobs, my condition has greatly improved. When I was in Dublin, I was driving 500-700 miles a week and being stuck behind the wheel of the car for so long was not helping my condition. Now I drive about 20 miles a week at the most which is great.
I’ve been a keen sailor all my life and I recently launched a business in Kinsale, hiring out motor and fishing boats. I’m happier than I’ve been in a long time because I’m doing something I absolutely love, so it doesn’t feel like work. I’m constantly moving, and it’s not strenuous work. I lost weight over the summer, which also has a big impact on my health.
I know I am very fortunate compared with other people with AS. I have read some terrible case studies and I am not a serious case compared with some. I’m not a fool. I’m 45 years of age and I do feel twinges of pain. I will probably shut up shop for the winter when things quieten down and I plan on doing an intensive course in the Mater.
I try to keep myself moving and keep a positive attitude, but I know that’s easy for me to say and I would never tell somebody, who is in a lot of pain and feeling awful, to be positive.
In conversation with MICHELLE McDONAGH
ANKYLOSING SPONDYLITIS: WHAT IS IT?
Ankylosing spondylitis (AS) is one of a group of inflammatory rheumatic diseases known as spondylarthropathies. These diseases are characterised by predominant involvement of axial and peripheral joints and entheses (areas where tendons, ligaments or joint capsules attach to bone).
AS is much more common in men than women and they tend to be affected more severely. The mean age of onset is 26. The disease is highly debilitating and can reduce quality of life as a result of stiffness, pain, fatigue, poor sleep, anxiety or the unwanted effects of medication.
Reported unemployment rates are three times higher among people with AS than in the general population. About a third of people with AS may be unable to work altogether, with a further 15 per cent reporting some changes to their working lives.
Therapeutic intervention aims to reduce inflammation and, therefore, pain and stiffness, to alleviate systemic symptoms such as fatigue and to slow or stop the long-term progression of the disease, particularly the progressive loss of spinal mobility caused by ankylosis of the spine.
See explainmybackpain.ie or contact Arthritis Ireland, tel: 1890-252846 or the Ankylosing Spondilitis Association of Ireland, tel: 01-8316678
