A day watching cricket is not the usual start to a life-changing condition. But in 2012, I was queuing to buy some lunch at a match when I felt a twinge in my back; nothing severe, I hardly noticed it. But over the next few days my back became quite sore. After a couple of weeks, I went to the doctor, who thought I’d probably pulled something, and told me to keep taking painkillers. After about six weeks, it was no better, so I went back. Eventually, he decided to send me for an X-Ray, and the result was a surprise – I had at least two vertebral compression fractures. At the time, I was 49.
Now I’ve had health problems most of my adult life; mainly Crohn’s Disease, and latterly Chronic Fatigue. As I have spent years – cumulatively – on steroids, the doctor concluded that my latest problem must be osteoporosis. I was sent to see a rheumatologist and had a DexaScan to check the density of my bones (I’d had these scans every 10 years or so, with no problems showing). I was put on Alendronic Acid, one of the standard treatments for osteoporosis.
The scan results were curious; the figures appeared fine. If I hadn’t had the breaks, you wouldn’t think I had a problem. So I just carried on; bones heal, and the pain had never been severe.
Then a few months later, I was carrying a box of dog food when there was what I can only describe as an explosion in my back. I collapsed onto the floor in agony. I couldn’t move or stand up for about half an hour, and when I did, I was sweating from the pain. I could hardly move, and my back seemed frozen. Looking back, I should probably have gone to A & E, but I just went to the doctor the next day. Another X-ray, more fractures, more painkillers. And a referral to Orthopaedics.
In the meantime, life was virtually hell. The pain was constant and severe. I was uncomfortable in any position, couldn’t stand or walk for more than a few seconds without struggling to breathe, and sleeping was almost impossible as I couldn’t lie down. This led to me sleeping in a chair for a while, which brought on a DVT! We tried several painkillers; codeine – OK, but not strong enough; tramadol – better, but boy, they mess with your head; finally fentanyl, effective, and it was a while before I realised it’s serious side effects.
I had an orthopaedic appointment, and they wanted to keep me in to get the pain under control. Eventually, they agreed I could go provided I was fitted with a back brace (in reality a corset!). I was booked in for an MRI scan, which in itself was 25 minutes of agony because I had to lie still in my back.
The results showed that I had had at least six compression fractures (for those interested, T7, T8, T9, L1, L2 & L3) as well as probable damage to two other vertebrae, and possible damage to two more. Incidentally, I had also lost two inches in height. Fortunately, I had not sustained any real damage to my spinal chord which was a real possibility, so the plan was to go back to rheumatology and talk about treatment to prevent further fractures rather than needing to do anything about the ones I had already had.
Since then, my back has improved considerably, but it has been over this time that I have become much more familiar with osteoporosis and what it’s like to live with. I now know I’m very much in a minority group; not only male (it affects women far more than men), but also steroid-induced. These two factors mean that I can’t really get answers to anything.
Not that there are many answers. The basic mechanics of osteoporosis are reasonably well understood; in a healthy person, bone breaks down and renews at an equal rate. In osteoporosis, it decays faster than it regrows, and bone becomes less dense, more brittle. As we age, this deterioration increases, particularly in women after the menopause. There are some treatments available, but none are truly effective, and most have side effects. Most of the drugs used are technically only approved for use in women.
I came to realise very early that this was one of those health issues where sexism was in play; one of those issues which seemed to be seen as ‘women’s problems’. If men suffered from it in the same numbers as women, more resources and research would have been allocated years ago. I think it has been seen as one of those things women have to ‘endure’ as they get older, and I think in most quarters, it still is.
What information, advice and support there is, is based firmly on research around post-menopausal women. When I ask questions about the disease in men, I get vague waffle. When I ask questions about steroid induced disease, I get even vaguer waffle. I can’t get any straight answers to some quite basic questions, as there’s been little or no research in these areas.
The advice I get also differs depending on who I speak to, and sometimes, it’s laughable. The orthopaedic consultant even suggested I start jogging to strengthen my spine; the other professionals I related this to had a good laugh at that one, before advising me to tactfully ignore that advice.
The only person who has really helped was a specialist physiotherapist who, over the course of six weeks or so, gave me the confidence to trust my spine again, and throw away the brace. She gave me practical, logical advice about how to sit, how to lay down, how to walk, and a series of gentle exercises to keep my back supple and build up my core muscles.
I’m still restricted in what I can do; bending, lifting, laying down and carrying are all things that require thought and self-imposed limits. I can’t sit or stand in one position for very long and simple jobs like gentle vacuuming will cause some pain for at least 24 hours. I know the damage that has been done can’t be undone; I just hope I can stop, or at least slow down, any further deterioration. But who knows? The doctors certainly don’t.
If you are worried about your own risk of developing osteoporosis, either because of age, or because you take medication that makes you more at risk (especially steroids, but there are others), then please talk to your doctors about bone health. There are preventative measures you can take; believe me prevention is much better than cure – especially when there isn’t one!
You may also like to take a look at the website of the National Osteoporosis Society where there is much useful information and advice.
