Case studies: Paul's story
County: County Durham
Diagnosed with Ankylosing Spondylitis 13 years too late
Simple tasks that became impossible because of rheumatic conditions:
· Holding and playing with his 6 month old son
· Playing sport
Paul grew up as a sport mad youngster, but from the age of 13 suffered severe pains which were misdiagnosed as growing pains for the remainder of his teenage years. After having to give up sport completely Paul struggled to make his way due to the intense pain he was experiencing until a pair of different orthopaedic surgeons who correctly diagnosed him with ankylosing spondylitis. After being put on the correct course of treatment Paul’s life has improved, especially now that he has a six month old son to look after.
Growing up as a teenager Paul experienced what doctors insisted were growing pains for many years, although they often left him bed-ridden for days on end. Paul was highly talented at both cricket and rugby, hitting a century aged just 13 for his school, and representing his county at all levels until he was 18. The ‘growing pains’, however, remained. “Sometimes I could cope by taking painkillers, but other times I’d be in bed for days, screaming with pain. At that point in my life, I’m not sure what was worse. The pain from my joints, or the mental pain knowing my friends were right outside my house throwing a ball around and I couldn’t join in. Over the next few years, my parents took me to see my GP several times. He sent me to various specialists all over the North East of England, and I was diagnosed with growing pains. Just what my parents had suspected. I remember clearly one doctor saying it was ‘something Paul would grow out of’.”
At 18, a consultant orthopaedic surgeon diagnosed with Scheurmans disease, a mild condition that causes a slight curvature of the upper spine, with the advice that if he lost weight (being 18 stone) by the age of 21 he would be cured. Paul had 3 months until he went to university, so set about a rigorous diet. By the time he left he had lost 4 stone and his clothes didn’t fit, and for his first month there he was pain free. “It was the 21st November 2002 when I travelled across the country to play a rival University Rugby Team. I bent down for the first scrum and remember feeling a dizziness in the back of my head. I can’t remember if I hit the scrum or not, but I woke up on the floor, struggling to breath, and in crippling pain. I was eventually carried from the pitch. It would be my last ever game of rugby. I spent the next 7 days in bed, and as I was a student, I could only afford 1 X-ray, and a local student Medical practitioner’s advice - which was to continue resting up in bed. I took their advice, and worked from my Study at home, but the pain became a living hell.”
Paul managed to complete university through intense pain and working from home, and soon after met his future wife. He tried to hide his pains from her for fear of driving her away, but they were able to move in together despite the problems. “The time came though when she moved in, and my pain was impossible to hide. For those early years when we lived together, we tried to have a normal relationship, but sometimes I would think she was my carer rather than my girlfriend. It was her that pushed me to continue with physiotherapy and to seek second opinions from new consultants.”
It was a pair of new consultants, however, that provided the breakthrough for Paul. “In the summer of 2008 I was referred to yet another orthopedic surgeon. I remember going simply to pacify my girlfriend, who had been so good to me. It was within 3 minutes of this surgeon seeing my MRI scan that he asked me to see a colleague of his. I followed him into the next room, and within 5 minutes they had taken blood from me, checked my x-rays and MRI scans together and diagnosed me with ankylosing spondylitis. I was to start treatment immediately due to the severity of the fusion.”
Living with a Rheumatic Disease:
After Paul’s diagnosis and onset of treatment, things markedly improved. “I finally had a diagnosis that I could believe in, and I was prescribed ANT-TNF blocker injections. Within 3 months my morning stiffness had lessened from 3 hours to 45 minutes, and my pain had gone from a 9 out of 10 to a 5. It has never been below a 5, and sometimes fluctuates back up towards a 10, but that is because of the irreversible damage that had already occurred. The difference now is that in the past when a flare up hit me I would lock myself away from people and somehow manage to get through it alone. I have no idea how I did it. But as I didn’t have a diagnosis I thought no one would help me, so I plugged away in excruciating agony alone. When a flare up occurs now, and the pain levels heads back up the pain scale, I ask those around me for help. I’m not afraid to do so. They know I need care. I rely heavily on my wife for physical and emotional support, and she is only too happy to support me. Asking for help is not embarrassing anymore. It is important not to feel helpless and shy away from support when it is on offer. Without that incredible support from my wife when she helps me put on my socks, brings me my painkillers, or washes my hair when a flare up arises, I wouldn’t be able to cope. Surround yourself with help if possible and don’t be afraid to ask for it in times of pain.”
Paul still struggles to live with his condition, knowing that due to its severity the pain will never go away. He undertakes a gentle physiotherapy routine involving massages, acupuncture, daily stretching, and light gym sessions three times a week. Paul is unable to lift heavy items or carry out any manual labour, but has been able to forge himself a career as a business development manager, but the future is uncertain. “Each year the pain worsens, the walking becomes harder and menial tasks seem like a marathon. I would admit that depression has crept in and out of my life untreated, but then I suppose that is to be expected and is something I will just have to deal with along with my physical pain.”
Paul’s Window of Opportunity:
Fortunately Paul has positives in his life to keep him going. Whilst Paul’s parents were unfortunately unable to understand and sympathise with him in the way that he would have liked, “My inspiration to succeed in life, and live as normal a life as possible comes from my family. My wife in particular, she is not only my rock, but also my inspiration. She has bundles of energy, sometimes too much to cope with, but also compassion when it’s needed. Everyone needs support in their life, whether that is through friends, family or carers.”
Paul has identified mental strengths that he did not know that he had when he was first diagnosed, and sets himself goals and targets every day to prove people wrong who doubt his illness and pain. His son has also provided him with an impetus to keep on going. “At present my goal is to raise my new born son and be the best father possible. It’s also vitally important that I am a good husband and give my wife the most normal of relationships possible under the strenuous circumstances. Keeping them happy and safe is my main priority. In fact it may be my only priority. Knowing I am successful at providing for them financially and emotionally gives me great satisfaction. I will strive to keep that going for as long as I can.”
Paul joined his local NASS (National Ankylosing Spondylitis Society) branch who have been a great support to him, and offer the availability of a hydrotherapy pool and gym equipment, as well as a trained physiotherapist and the ability to meet other sufferers with ankylosing spondylitis. “(This is) something I recommend everyone should try. Talking about your problems takes a weight off your shoulders. I was shocked at how people were interested in my weekly trials and tribulations, but I was also elated to hear tips and tricks of how other AS patients would combat their pain. I’m still learning today. This week I’m trying my first Starch free diet. It might not work, but I’ll still give it a go.”
Paul is sharing his story to tell other sufferers of ankyloing spondylitis and rheumatic conditions that they are not alone, that it is ok the feel depressed, sad, and lonely. Paul recommends people with rheumatic conditions surrounding themselves with good people, and to take each day at a time. NASS and other groups are able to provide support, and need their profile raised.
The window of opportunity is key in finding the right treatment for millions of people with rheumatic conditions.
*If you are inspired by Paul’s story, visit the "Take Action" section to learn about your window of opportunity to help.