Every few years someone, somewhere, announces that “it won’t be long before we have a treatment to rid the world of persistent pain.” And there’s a hiss and roar to celebrate this momentous finding, and much ado about how wonderful it will be.
I’m still waiting. BUT I thought it might be an interesting thought experiment to wonder what might happen if a “cure” was available for fibromyalgia.
As readers will know, I have lived with what eventually was named “fibromyalgia” since my early 20’s, and probably longer. I’ve dabbled in various treatments over the years but sadly, nothing but good clean living has helped (by which I mean early to bed, good diet, maintain healthy movement, manage stress, have good friends to connect with, play, have fun). So I would dearly love a treatment that would remove the constant aching, reduce the prolonged DOMs, keep a lid on delayed recovery after injury, and generally offer me a life relatively “normal.”
I am definitely pro-pain reduction and pain treatment. I just haven’t found anything that changes mine.
We have had some spectacular developments in therapies over the past 25 years – particularly in the inflammatory rheumatological diseases like ankylosing spondylitis, rheumatoid arthritis and ulcerative colitis. Treatments with anti-TNF alpha biologicals means that my partner who lives with anky spond now has normal C reactive protein levels, no pain, the disease activity has stopped, and he’s tickety-boo.
So why am I just a tad reserved about the notion of a “fix” based on new discoveries about mechanisms associated with neuropathic and nociplastic pains? Why am I just a little skeptical of a new psychological study showing outstanding results (Ashar, Gordon & Schubiner, 2021)? Am I just worried I’ll be out of a job if there’s an effective treatment?
Nope.
You see, even though some people like my Manly Jack have had a wonderful response to treatment for inflammatory disease, there are many more who have not. Or, who have significant reductions in inflammation – but not to “normal” levels, and accompanied by complications/adverse effects, and, in many instances, continued pain. Why is that? Well – I think it’s because while treatments target mechanisms, people are enormously variable in both biology and more importantly, psychology and sociology.
And it’s these last two that have been identified as amongst the most important contributors to ongoing disability and limited participation.
Now the social deserves a little attention. Drug developments are not cheap. The medication my partner uses is extremely expensive – NZ$1200 every two weeks. Luckily for us, this drug is fully funded by the NZ Government. There’s an economic argument for having meds like these publicly funded – without this drug, it would have been very difficult for my man to carry on working. He was having trouble rolling over in bed at night, had trouble coughing, couldn’t inhale fully, and walked like a little old man. He’s now fit as a buck rat and pays his taxes because he’s working.
The problem is, as we can see from the Covid vaccination roll-outs world-wide, people and countries without resources have less access to effective treatments. Even in NZ where we don’t have the “vaccine hesitancy” of other countries, the people who are least likely to be vaccinated right now are those who have trouble traveling to a centre, who don’t feel “at home” in healthcare, who are hard to reach, perhaps not very literate, don’t speak English or te reo Māori. The NZ government is working incredibly hard to ensure the vaccine is given to these people, and I’m proud of the variety of ways they’re doing so.
But spare a thought for countries where there is no relative affluence. Where other countries don’t have the will to help. Where infrastructure is poor. Where women, children, and people from different cultural backgrounds or religions are discriminated against. In these countries, vaccinations are very slow to reach those in need.
So one risk from a fancy new treatment is that people who need it but can’t afford it, don’t trust healthcare (who would after the stigmatisation so many people receive?), and people who are from countries where the rest of the world doesn’t help out – they risk missing out.
Another risk is that while pain might be reduced or even eliminated, these address only the biology, and people are people, and pain is multidimensional. People remember what it was like to be in pain. People have their own narratives about what’s going on to create their pain. We all learn from our experiences, and beliefs, attitudes, emotions, the influence of others around us, the communities and families and workplaces we come from, all of these have an effect on “what it is like to be experiencing pain.”
We know that people who have completely successful joint replacements without pain, don’t resume the activities they were doing before their joints became painful (see my last blog post). People successfully treated with biologicals still hold fears about future harm that developed before they got their treatment. We know that many people take years before being diagnosed and treated successfully – and that’s a long time to develop beliefs, habits, routines and relationships that don’t support recovery. We also know the trauma of unhelpful and stigmatising healthcare interactions can live long, even after successful care.
Resuming daily life and valued activities is integral to pain rehabilitation. Helping people safely do what matters to them in their life contexts is still needed. In the enthusiasm for applauding treatment advances, we need to remember that people are more than the sum of their diagnoses, more than their biology, and our societies are not fair.
Ashar YK, Gordon A, Schubiner H, et al. Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial. JAMA Psychiatry. Published online September 29, 2021. doi:10.1001/jamapsychiatry.2021.2669
h ttps://jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694?fbclid=IwAR23strMuoUXYs_Ae9EmTVz9eNAzYxgxAR1IBj64SePpbWeLQL_M_DOaXr8
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