My Informal Disclaimer: Let me begin by saying I am not a doctor, nor am I trained in any medical profession. I do not pretend to be an expert; I am simply a person who is trying to make sense of her own experience. I am sharing what I learn and experience here because I know how lonely the road from diagnosis to recovery can be, and if I can help even one person, the time I spend writing these words will be worth it.
One theme that comes up time after time on the SCTA (Spinal Cord Tumor Association) Facebook page is pain management. Since opioid pain medications play a role in pain management, there is a lot of discussion about the proper use and distribution of these medications. While some of the members of the SCTA seem to be able to cope with the pain without opioids, there are others who report taking these medications for months or years without improvements in their pain levels. So, when I heard a report on NPR (National Public Radio) about opioid induced hyperalgesia, my curiosity was aroused.
The author of the report, Clayton Dalton, is a resident physician at Massachusetts General Hospital. In his report, he presents research that suggests long term use of opioids leads to hypersensitivity to pain. Going back to 1870, Dalton cites evidence of the pain magnification that accompanies opioid dependence. What does this mean for spinal cord tumor survivors and others with chronic pain? Well, it seems to be a clear message that the opioid based drugs that appear to be an elixir in the early days following surgery can quickly become a major part of the problem.
“This could be a major factor in the opioid crisis,” Arout says. “People have worsening pain, and so their dose is often increased because they are thought to be tolerant.” But the result is that some patients may find themselves taking dangerously high doses while their pain continues to intensify. – From Clayton Dalton’s NPR report on opioid use.
There is no doubt that spinal cord tumors (and the spinal cord injuries that often result from the surgery to remove them) cause pain. And now, this report suggests that opioids intensify that pain if taken for an extended period of time. Suddenly bells and whistles are going off in my head. This explains so many of the posts that I have read on the SCTA Facebook page. Many of the members of this page experienced pain for years before getting their diagnosis. They might have bounced from one doctor to another searching for answers, and in the interim, the puzzled doctors may have prescribed opioid medications to numb the pain. This would have been okay in the short run, but as the patients migrated from one specialist to another, days turned into weeks, weeks turned into months, and months turned into years – while well meaning doctors prescribed increasing doses of these medications thinking the patient was just developing a tolerance to the pain medication. The patient was, unfortunately, being made more sensitive to the pain they were trying to control.
Now we have large numbers of people whose years of opioid use have, according to the information in this report, lead to hypersensitivity to pain. The pain is not imagined, and they are not weak. They need alternatives to opioids that will cut through the pain and allow them to get on with their lives. What are those alternatives? Some people report that physical therapy can help. Others rely on non-opioid pain medications, massage, meditation, acupuncture, or other non-traditional treatments. For those who live in states that allow the distribution of medical marijuana, that seems to be a promising option. However, once a person has developed hypersensitivity to pain due to prolonged use of opioids, how long does it take to retrain the nerves? Are these alternatives able to stand up against heightened pain? Or are they more helpful for patients who have not experienced long term opioid use? There are so many implications and so many questions that need to be answered because SCT survivors desperately need tools to help them cope with their pain.
Hopefully, researchers are aggressively working to find answers to these questions, so people living with chronic pain can find some relief and get back to the business of enjoying a life lived without pain.
If this topic interests you, here are some articles you might enjoy:
Would be interested to hear what you have to say on this topic. I know it is something many SCT survivors have strong opinions about.