Throughout life, the skeleton continually renews itself through a process known as remodelling or bone turnover. In healthy bone, the rate of bone breakdown is linked to the rate of bone formation so that bone strength is maintained. As we get older, the rate at which bone is broken down increases and exceeds the rate at which bone is formed. This results in loss of bone and may lead to osteoporosis and an increased risk of fracture.
Osteoporosis is sometimes referred to as the ‘silent disease’ because you cannot see or feel your bones getting thinner and more fragile and prone to fracture.
People usually become aware that they have the condition after they break a bone or start to lose height. Osteoporosis is difficult to pinpoint until a bone is broken. Measuring bone density by way of a test called dual x-ray absorptiometry (DXA) is the most accurate and reliable way of assessing the strength of bones and diagnosing osteoporosis (see also DXA scan and other tests for osteoporosis). Here people talk about how their diagnosis of having osteoporosis emerged.
We talked to people who were diagnosed with osteoporosis several decades ago and those who had been recently diagnosed with the condition. Elizabeth remembers that she was diagnosed in 1978. A few, didn’t remember the exact year of their diagnosis. Tom for instance is 85 years of age and said that back in the 1960’s osteoporosis was ‘mentioned‘.
Several of the more recently diagnosed men and women said that they got their diagnosis reasonably quickly. The entire process from visiting their GP to obtaining their diagnosis took two to six months and in a few cases, only several weeks. Their GP requested a DXA scan or sent them to see a consultant following a fracture and/or suspecting osteoporosis due to risks factors. Also, a few were already in the care of a consultant for another condition and therefore able to request and get a DXA scan without much delay.
In a couple of cases women were advised by the hospital doctor or nurse to go to their GP and request a DXA scan. For example, while Christine was in hospital recuperating from a recent fracture, a ward nurse alerted her that she could be osteoporotic through her poor mobility caused by her hemiplegia.
In several cases women requested a DXA scan after noticing they had lost height or because they were concerned about osteoporosis due to their age after the menopause, maternal history of the condition, hysterectomy or other risk factors (see also Who develops osteoporosis
). Some hospitals run an osteoporosis screening programme which invites patients for screening after having had a fracture.
Osteoporosis is less frequent among men. Keith’s GP sent him to a breast clinic after finding a lump on his breast. Further investigations ruled out breast cancer but showed a low testosterone level which can contribute to the onset of osteoporosis.
What some people told us suggests that having a ‘classical’ osteoporosis fracture, meaning wrist, hip and spinal bones fractures, does not guarantee a quick and unproblematic diagnosis. For various reasons some people had to wait months and even years to find out that they had the condition.
Some men and women interviewed felt that their GP or by A&E staff had not taken their back pain seriously – in most cases it was back pain due to spinal fractures. In a few cases the GP referred them for an x-ray or MRI scan but requested it as a non-urgent case and so people had to endure severe pain while waiting for their appointment.
Another reason for a delayed diagnosis, particularly among those diagnosed ten or more years ago, was the lack of a DXA scanner in their local hospital or even in their home town. A few people were diagnosed after an x-ray but wanted to know about their bone density to get a proper assessment and treatment. Margery was one of them:
The results of Sarah’s first DXA scan when she took part in a clinical trial got lost in the system and it wasn’t until 6 years later when she had another fracture that she was ‘officially’ diagnosed and treated for osteoporosis.
Some people thought it unnecessary to seek medical attention when experiencing pain, and so their diagnosis was delayed. David, who has rheumatoid arthritis, said that because he has pain almost every day he initially found it difficult to distinguish between his daily pain and fracture pain. A few people in their 70’s and onwards said that they have lived with pain for a long time and did not go to their doctors because they thought there was nothing their GP could do to alleviate their symptom. A few women had acupuncture, osteopathy or physiotherapy to manage their back pain.
Osteoporosis mostly affects older women, but younger women and men can also develop it. Young adults can face particular difficulty when trying to get a diagnosis even with a maternal history of osteoporosis in the family. At the age of 32 Jane requested a DXA scan following a neck injury but her GP told her she was too young to have one. Four years later and after the birth of her son, Jane’s back ‘collapsed’ but she had to live with what she recalls was ‘an excruciating’ pain for six weeks before she was finally diagnosed with osteoporosis through pregnancy. The DXA scan showed three spinal fractures. She thinks that being a new mother led everyone to believe, including A&E staff that she most likely was suffering from post-natal depression or worse ‘faking’ the pain.
Some people were told by their GP that their pain was due to sciatica, slipped disks or trapped nerves. And so the correct diagnosis took longer, sometimes up to five years to get. These people were usually prescribed painkillers, in two cases morphine patches (see also Pain and medication in osteoporosis
Rose and Robert were referred to an oncology unit for further investigation after bone cancer was suspected. Rose had an x-ray which revealed her osteoporosis without much further delay. Robert, however, had spinal surgery to try and stabilise his back before a definite diagnosis was reached. Multiple myeloma was suspected but Robert wonders why no one thought of testing him for osteoporosis. He was eventually referred to a bone metabolic specialist and diagnosed within a week with severe spinal osteoporosis (see also Surgery for osteoporosis
Feelings about delays and misdiagnosis
A few people felt disappointed with the care they received as outpatients in Accident and Emergency (A&E’) departments. These people think that their diagnosis was delayed because they were not given an x-ray the first time they went there experiencing severe back pain, as did Jane and Sarah.
Jane, Sarah and Robert feel let down and sidelined by the healthcare system. Their personal experiences have shaped their perception of health professionals. Jane for instance has been left with a profound mistrust of health professionals and finds it difficult to relate to them. Robert thinks that there is still a lot of ignorance amongst (non-specialist) health professionals about osteoporosis because the dominant idea is that osteoporosis is an ‘old people’s disease.’ He acknowledges that much has improved since his experience or at least he like to think it has. Sarah thinks that she should have been a bit more assertive and pushy. Some other people we interviewed shared this sentiment (see also Communicating with health professionals