Chronic pain and tragic irony…
Paul: “For three years I kept my faith that relief had to be just around the corner, but my disappointment is now as chronic as my pain. Hope has become a distraction.”
Paul Ingraham is quite important in the Science-Based Skeptics movement and in my becoming involved in it. He emailed me after a long spell without contact. He wanted to explain how he had been out of touch. His life had been devastated by as-yet medically unexplained pain and other mysterious symptoms.
Paul modestly describes himself at his blog site as “a health writer in Vancouver, Canada, best known for my work debunking common myths about treating common pain problems on PainScience.com. I actually make a living doing that. On this blog, I just mess around. ~ Paul Ingraham (@painsci, Facebook).”
Some of Paul’s posts at his own blog site
Paul’s Big Self-Help Tutorials for Pain Problems are solidly tied to the best peer-reviewed evidence.
Detailed, readable tutorials about common stubborn pain problems & injuries, like back pain or runner’s knee.
Many common painful problems are often misunderstood, misdiagnosed, and mistreated. Made for patients, but strong enough for professionals, these book-length tutorials are crammed with tips, tricks, and insights about what works, what doesn’t, and why. No miracle cures are for sale here — just sensible information, scientifically current, backed up by hundreds of free articles and a huge pain and injury science bibliography.
Paul offered me invaluable assistance and support when I began blogging at the prestigious Science Based Medicine. See for instance, my:
I have not consistently blogged there, because my topics don’t always fit. Whenever I do blog there, I learn a lot from the wealth of thoughtful comments I received.
I have great respect for Science Based Medicine’s authoritative, well documented and evidence-based analyses. I highly recommend the blog for those who are looking for sophistication delivered in a way that an intelligent lay person could understand.
What’s the difference between Sciencebased medicine (SBM) versus evidence-based medicine (EBM)?
I get some puzzlement every time I bring up this important distinction – Bloggers at SBM frequently make a distinction between science-based- and evidence-based- medicine. They offer careful analyses of unproven treatments like acupuncture and homeopathy. Proponents of these treatment increasingly sell them as evidence-based, citing randomized trials that do not involve an active treatment. The illusion of efficacy is often created by the positive expectations and mysterious rituals with which these treatments are delivered. Comparison treatments in these studies often lack this boost, particularly when tested in in unblinded comparisons.
The SBM bloggers like to point out that there are no plausible tested scientific mechanisms by which these treatments might conceivably work. The name of blog, Science-Based Medicine calls attention to their higher standards for considering treatments efficacious: to be considered science based medicine, they have to be proven as effective as evidence-based active treatments, and have to have a mechanism beyond nonspecific, placebo effects.
Paul Ingram reappears from a disappearance.
Paul mysteriously disappeared for a while. Now he’s reemerged with a tale that is getting a lot of attention. He gave me permission to blog about excerpts. I enclose a link to the full story that I strongly recommend.
A decade ago I devoted myself to helping people with chronic pain, and now it’s time to face my ironic new reality: I have serious unexplained chronic pain myself. It may never stop, and I need to start learning to live with it rather than trying to fix it.
I have always been “prone” to aches and pains, and that’s why I became a massage therapist and then moved on to publishing PainScience.com. But that tendency was a pain puppy humping my leg compared to the Cerberus of suffering that’s mauling me now. I’ve graduated to the pain big leagues.
For three years I kept my faith that relief had to be just around the corner, but my disappointment is now as chronic as my pain. Hope has become a distraction. I’ve been like a blind man waiting for my sight to return instead of learning braille. It’s acceptance time.
Paul describes how is pain drove him into hiding.
… why I’ve become one of those irritating people who answers every invitation with a “maybe” and bails on half the things I commit to. I never know what I’m going to be able to cope with on a given day until it’s right in front of me.
He struggled to define the problem:
Mostly widespread soreness and joint pain like the early stages of the flu, a parade of agonizing hot spots that are always on the verge of breaking my spirit, and a lot of sickly fatigue. All of which is easily provoked by exercise.
But there was a dizzying array of other symptoms…
Any diagnosis would be simply a label, not an explanation.
Nothing turned up in a few phases of medical investigation in 2015 and 2016. My “MS hug” is not caused by MS. My thunderclap headaches are not brain bleeds. My tremors are not Parkinsonian. I am not deficient in vitamins B or D. There is no tumour lurking in my chest or skull, nor any markers of inflammation in my blood. My heart beats as steadily as an atomic clock, and my nerves conduct impulses like champs.
Paul was not seriously tempted by alternative and complementary medicine
I am not tempted to try alternative medicine. The best of alt-med is arguably not alternative at all — e.g. nutrition, mindfulness, relaxation, massage, and so on — and the rest of what alt-med offers ranges from dubious at best to insane bollocks at the worst. You can’t fool a magician with his own tricks, and you can’t give false hope to an alt-med apostate like me: I’ve seen how the sausage is made, and I feel no surge of false hope when someone tells me (and they have) “it’s all coming from your jaw, you should see this guy in Seattle, he’s a Level 17 TMJ Epic Master, namaste.” Most of what sounds promising to the layperson just sounds like a line of bull to me.
Fascinating how many people clearly think Paul’s story was almost identical to their own.
All these seemingly “identical” cases have got me pondering: syndromes consist of non-specific symptoms by definition, and batches of such symptoms will always seem more similar than they actually are… because blurry pictures look more alike than sharp and clear ones. Non-specific symptoms are generalized biological reactions to adversity. Anxiety can cause any of them, and so can cancer. Any complex cases without pathognomic (specific, defining) symptoms are bound to have extensive overlap of their non-specific symptoms.
There are many ways to be sick, and relatively few ways to feel bad.
Do check out his full blog post. http://www.paulingraham.com/chronic-pain-tragic-irony.html