Unknown numbers of New Zealanders with a little-understood chronic pain condition are not getting the help they need. Dr Bronwyn Lennox Thompson argues it’s time to create a national registry of those with complex regional pain syndrome to understand how many Kiwis are affected and how we can better treat it.
Comment: When Jenny* had hand surgery for a hand tendon problem just over a year ago, she never expected that she would still not be able to use her hand today.
Since August last year, Jenny has seen her surgeon, a neurologist, a pain specialist doctor, psychologist and hand therapy occupational therapist many times about her painful hand and wrist.
She’s not working, having lost her job, wears a glove on her hand all day every day because it is exquisitely painful when it brushes over clothes, can’t drive, and has to ask her husband for help with household tasks and even getting dressed.
Jenny is not alone, but feels like “no one knows about it” and she has “no more tears left”. Jenny has complex regional pain syndrome (CRPS), an uncommon chronic pain problem that is what the name says: complex.
New Zealand researchers and clinicians are calling for a national registry to collect information about CRPS to help understand this problem better, and provide guidance for treatment pathways.
CRPS is only one of many chronic pain problems experienced by New Zealanders. One in five in Aotearoa live with pain that has lasted for three months or longer. This is on a par with mental illness, but public awareness and access to treatment for chronic pain is far below that for mental illness.
As an invisible health problem that is often stigmatising, chronic pain disproportionately affects women, Māori and Pasifika, those with comorbid health problems, and people with socio-economic disadvantage. While we are starting to recognise the need for better management for people with long Covid and chronic fatigue, we must also do better for those with chronic pain because the same issues of suspicion, stigma, few treatment options, and inequity apply.
It’s hard to study people with CPRS because it is relatively rare with between five and 26 in 100,000 people developing it, based on international statistics. We don’t know how many people in Aotearoa/NZ have this diagnosis as the research has not been carried out here. This means that research examining long-term outcomes to treatments, particularly for Māori, Pasifika people and those in rural New Zealand is limited. A national registry would pool information from around the country, making research much easier to conduct.
Complex regional pain syndrome is an uncommon pain problem that develops after what seems like a minor injury. It’s characterised by intense burning pain to even the light touch of a sheet at night. Usually in the hand or foot, but often spreading much more, the person will also have colour changes, swelling, perhaps more hair and nail growth, and difficulty coordinating movement to use that part of the body.
University of Otago PhD candidate Grace Griffiths, an occupational therapist hand therapist, has just completed an analysis of the treatments specific for upper limb CRPS.
She says the impact of upper limb CRPS on what people can do in daily life is enormous.
“While there are studies looking at treatments for the lower limb, because of the additional demands and meaning that the arm, hand and shoulder have, treatments need to be tailored to target what matters most. Unfortunately, from our research, very few treatment studies measure function, and none looked at psychological impact,” she says.
Jenny agrees that understanding the stigma and psychological impact of CRPS is vital.
”My social life is completely cut off, I’m afraid of going into large groups because it’s embarrassing, like being a kid - I have to check with my husband to see if it’s okay to go out because I need his help, and my confidence has gone. I’ve lost my job, my career, my freedom.
“No one is in charge in CRPS rehabilitation, I don’t know who is meant to tell me that this is what I have. Even health professionals have made out that it’s ‘all in my head’ and I shouldn’t be acting like a wuss.”
CRPS can affect people at any age, including children. Dr Ross Drake, Paediatric Pain Anaesthetist at Starship Children’s Hospital, supports the call for a national registry.
“We need to know whether the diagnostic criteria for adults are sensitive enough to diagnose CRPS in children. We need to know what happens to children over time because it affects their schooling, friendships, siblings and parents,” he says.
Dr Debbie Bean from Auckland University of Technology and her collaborators have just won a prize at the International Association for the Study of Pain World Congress for their CRPS outcomes research.
She points out that most improvement in pain and impact on daily life occurs in the first six months after onset, while there is little change after the first 12 months. The value of Dr Bean’s study is that it is one of very few to follow people up over eight years.
This means they have been able to find out factors that predict both positive and adverse outcomes. Studies like this give insights into factors that might be prioritised early, offering hope to those with this challenging pain condition. A national registry would facilitate this kind of research.
Jenny said it has been exceptionally difficult to get a consistent idea of what she should do for her CRPS. She’s received conflicting advice, mainly from health professionals who lack knowledge about CRPS and how it should be treated.
“When one specialist says I should have aggressive exercises for my hand, while my pain doctor and hand therapist both say this will flare my symptoms up, I’m left not knowing who to believe. My treatment has been fragmented, and I feel like I’m trying my best but I don’t know who should be in charge and what my next step should be.”
While there is much to learn about diagnoses like CRPS, chronic pain health professionals and researchers agree that common non-pharmacological therapies such as physical activity and movement practices, attention to mood and worry, and focusing on helping people return to what matters in their life are fundamental.
Jenny believes that a national treatment pathway built on data from a CRPS registry would enable her get back to a life worth living. A CRPS registry requires funding. Specialised team-based services, greater attention to chronic pain in health professional training, and equitable access to treatment also require funding.
As a community, we lose when we fail to understand chronic pain and its impact. Can we afford not to address one of the most common chronic health problems in our community?
*Jenny is not her real name.
