Delight as back pain finally given a name

Jewish Telegraph, February 2017

Ankylosing spondylitis. It’s only two words, but it changed my world totally.
For close to 10 years, I had suffered debilitating back pain, so I was delighted to hear the doctor tell me around three years ago: “The MRI scan showed you have ankylosing spondylitis.”
I had no idea what it meant or how it would affect me, but just hearing that it had a name was a huge relief.
The doctor explained it to me, but I was still processing the diagnosis to take in what he said.
Eventually I read about it, visited internet forums, joined Facebook groups . . . and panicked about my long-term future.
When I first started suffering back pain, I put it down to pulling a muscle or aggravating something by carrying my then-baby daughter around.
I lived on painkillers before finally going to see my doctor.
He confirmed it was nothing too serious and that I should see a physiotherapist for treatment.
I first went to see a chiropractor. After three sessions — the most painful hours of my life — I stopped going and sought out a regular physio.
I was paying £25 for each hour-long session with my new physio. The treatment would bring me close to tears each week, but I had to believe that it was doing me some good.
After each session, I’d be in agony but then my pain would improve for a couple of days before, once again, I’d return to the painful state before the physio.
My therapist was getting frustrated by my lack of progress as was I.
She kept telling me I needed an MRI scan to see if that would uncover the cause of my pain.
I went back to my doctor, who launched into a rant about how my physio obviously didn’t know what she was doing if she couldn’t diagnose the cause of my pain.
But not wanting to take no for an answer, I made an appointment to see one of the younger doctors at the practice.
After I explained the problem, the first thing he said to me was: “I don’t understand why you haven’t had a scan yet.”
Finally progress! The diagnosis also showed that physio was never going to cure my condition.
So what is ankylosing spondylitis?
According to the NHS’ website, “AS is a long-term (chronic) condition in which the spine and other areas of the body become inflamed.” To put it in layman’s terms, my spine is fusing.
To my wife’s dismay, I wear velcro-fastening shoes because it is so difficult to tie shoelaces with the condition.
Cutting my toenails or putting on socks becomes a complicated process too and I need to give myself at least a week’s notice if I plan on turning over in bed.
I feel sorry for anyone sitting near me in a cinema or theatre, as I spend the duration of the film/play shuffling around in my seat as it’s impossible to get comfortable.
To relieve the pain I am on high doses of slow-releasing ibuprofen — along with pills to stop an ulcer.
Late last year, pharmacies had difficulty getting hold of the ibuprofen so I had to change to Naproxen. It helped with the pain, but within two days I was covered in a full body rash and itching constantly.
I started taking a different anti-inflammatory which had no effect at all and my pain just seemed to worsen.
Fortunately, my original pills came back on the market, so I am able to manage my pain to a certain degree.
During my weeks on different medication, I started to suffer from another symptom — incredibly bad chest pains.
A quick visit to one of my Facebook groups told me that this is my rib cage fusing too.
It meant also that after I ate, I would experience breathlessness easily as my stomach would be pressing on my lungs which would have no way of expanding fully due to my fused rib cage.
This pain has also subsided since I returned to my normal pills. I am also on a diet and have started pilates — and walk more.
AS has a number of other symptoms, including iritis (inflammation of the eye). Everytime I get a new ache, I look on the forum and see that many other AS sufferers have the same symptoms.
One of the worst symptoms is extreme exhaustion. After work, all I want to do is lie down, but when you are married with a young child, this is quite an impossibility.
It’s hard for people to take you seriously when they can’t see that anything is wrong with you. I can do a lot of things, able-bodied people can do, but there are plenty of things I can’t do.
There are other things I shouldn’t do, but call it male pride. I’ll still carry heavy objects around the house — and suffer badly later.
Every time I see my rheumatologist, I take the latest list of horror stories I’ve read online.
The long-term prognosis includes osteoporosis, spinal fractures, cardiovascular disease, chest infections and kidney disease. Most sufferers continue to live painful, yet independent lives, while others end up with severe disability.
There are plenty of others out there suffering in a worse way to me (and considering the pain I am in 24/7, I can’t imagine how they are feeling).
I have no idea what the future holds for me. It’s quite worrying, but hopefully with my lifestyle changes, I may be able to ease the pain and live a normalish life.