Jacqueline Smith, 58, from St Osyth, shared her experience of living with Complex Regional Pain Syndrome (CRPS) and fibromyalgia on the Hidden Voices podcast, in the hope of raising awareness of these misunderstood pain conditions.
The Hidden Voices podcast, produced by Healthwatch Essex, explores health and social care issues that often go unheard, so that the public and the healthcare system can understand them more fully. This is part of the charity’s wider vision of ensuring everyone’s voices can shape health and social care services for the better.
Prior to her diagnosis, Jacqueline spent 15 years working in the NHS and worked as a physiotherapy assistant. She went from supporting patients in their recovery to needing physiotherapy treatment herself. Her pain started following a hip replacement for osteoarthritis. Initially, she was told she was just experiencing post-op pain, but her experience of working with patients meant she knew this was something more. Eventually, a physiotherapist identified that she had CRPS. She was diagnosed with CRPS and fibromyalgia at the same time, although she suspects she had undiagnosed fibromyalgia prior to the surgery. It was never shared with her that CRPS was a potential risk of the surgery, even though it should have been.
CRPS is a nerve disorder that usually occurs following an injury or operation. The pain is what leads to disability, with symptoms including burning, nerve pain, stabbing feelings, electric shock pain, painful skin, hair and nail growth, and sleep issues. There is no known cure. While medications, meditation, and gentle exercises can offer some relief, stress and physical activity often worsen her symptoms. Tasks as simple as climbing stairs can leave Jacqueline bedridden for days.
“I’m a very different person from what I used to be…” Jacqueline says, “It takes your confidence away a lot.”
These conditions have had a big impact on her lifestyle. They affect her sleep, she cannot drink anymore, and she is not as sociable as she used to be. One of her oldest friends drifted away, unable to cope with her new limitations.
“It doesn’t reduce your life span as such,’ Jacqueline reflects, ‘but it definitely reduces your life.”
Jacqueline feels awareness of CRPS in the UK is poor compared with other countries such as Australia, where there is greater awareness, faster diagnosis and more specialists. Even the specialists she was able to see in the UK told her that ‘the pain is all in your head’ or ‘you’re too complex’.
The problems go beyond the NHS. Jacqueline reflected on a terrible experience in a private hospital during an overnight stay for surgery. Her crutches were left on the other side of the room, confining her to her bed, with no commode or food. She begged for tea and toast at 5am. Even after all of this, the treatment did nothing to help the pain.
The pain has had a drastic effect on her mental health. One day it became too much for her. She paid her bills, recorded a video for her family, arranged her bed, and lined up her medication. As she was about to take an overdose, her supportive GP rang, simply for a catch up. “If he hadn’t phoned me,’ Jacqueline says, “I wouldn’t be here today.”
Like many chronic pain sufferers, Jacqueline was prescribed liquid morphine, but over time, it stopped providing relief. She found herself taking more and more until she became addicted. Despite the drug being monitored, Jacqueline felt it still was not enough—her escalating use was often excused as her needing more for pain management. With the help of her GP, she devised a slow tapering plan, enduring weeks of withdrawal symptoms like shaking and headaches.
“That was awful, because that was like coming off cold turkey. That was not a nice time. But that wasn’t doing anything for me, for the pain, and I was just taking more and more… I think you slip through the net a lot.”
Despite the excruciating pain she experiences, Jacqueline is determined to make things better for other people experiencing chronic pain conditions. She is keen to volunteer, to share her story and take part in further research with the charity.
“It’s amazing to come on a forum and actually say what you want to say, get it out, off your chest. If one person listens to this and it resonates and they get some sort of help from it, then that would be amazing to me.”
