Painsomnia: When pain causes insomnia
“It’s like sleeping on rough-edged rocks. My body is trying to kill me from the inside out. Night after night.”
Every morning we see post after post just like this one, made by thousands of people facing chronic diseases, who have joined one of our 29 different patient social networks. It’s an epidemic that doesn’t get as much attention as it should. When we take a closer look at conditions such as lupus, endometriosis, rheumatoid arthritis, spondyloarthritis, migraine, psoriasis, Parkinson’s, hemophilia and fibromyalgia, the inability to sleep is a top symptom impacting quality of life — with 45% to 85% of members dealing with insomnia and a majority citing pain as the primary reason for the inability to sleep. “Painsomnia” they call it.
The National Sleep Foundation estimates that chronic pain disturbs the slumber of one in five Americans at least a few nights each week. Bad enough on the surface, the insidious thing about painsomnia is the undertow-effect. People are pulled under by the compounding impact of sleep deprivation. Depression. Cognitive dysfunction. Worsening of other physical symptoms. Inability to complete necessary tasks at home and work. Strain on relationships. The vicious cycle repeats and intensifies.
Painsomnia is one of the most talked-about topics in peer-to-peer conversations within condition-specific social networks. People are struggling, and they’re seeking support from others who get it.
Overlooked Problem, Underestimated Impact
In research we completed in partnership with Bioverativ among members of MyHemophiliaTeam, people reported they are equally concerned about the depression they experience daily (65%) as they are about controlling bleeds. Digging into this a bit deeper, we found that 57% deal with pain so severe they find it hard to move comfortably and 71% say they can’t even escape the pain in their sleep. These issues are clearly linked, but healthcare providers and pharma companies too often overlook or underestimate the undertow effect of unchecked pain. In our study, 76% of respondents did not feel their pain is adequately addressed as part of their current treatment. That’s a problem as well as an opportunity.
There’s a real opportunity for biopharma companies to address unmet needs like this. The first order of business is to understand the real-world patient experience by exploring the symptoms that most impact quality of life. So many times, we see that the priorities of people living with a disease differ from the priorities of KOLs or the people working to treat it. The understanding that comes from an initiative such as our hemophilia study can help guide the approach providers and pharma co’s take to address unmet patient needs and better fight the undertow of an issue such as painsomnia.
The Innovation Imperative
Tackling painsomnia is no small undertaking, of course. And the previously accepted practice of throwing more pain pills at the problem is clearly not the answer. The opioid addiction epidemic in the U.S. is staggering — with more than 115 Americans dying every day from opioid overdose. There are lots of individuals and groups working to stem this tide. That’s a good thing.
But it’s not enough. In parallel, we need to create positive alternatives. The reality is that 1 in 2 Americans now lives with a chronic disease, and the numbers are only increasing. Severe pain — pain so bad you can’t sleep — is common among people living with a wide variety of chronic diseases. That’s not something we can ignore. As an industry, we must actively work to develop better pain management therapies and protocols, as well as fight the underlying causes of that pain — be they physical or mental, structural or inflammatory. We need to ensure patients feel heard — by actually listening to them. And we need to aggressively educate and empower patients with the tools to tackle painsomnia and avoid its dangerous undertow.