By Angelika Byczkowski.
Over the last few years, the accumulation of forces against opioid prescribing has pushed me over an edge, pushed me past my sense of self-preservation, and led to a fundamental shift in my expectations of life.
If the increasingly anti-opioid, anti-pain-relief, and anti-factual campaign succeeds, I will not die of old age. I may suffer a fatal accident or disease before I succumb to a more distant death but if I don’t, I’ll eventually have to take matters into my own hands.
At 60 now, there is simply no way I can live another 20-plus years in my deteriorating, increasingly painful body without powerful pain-relieving drugs. Opioids have kept me afloat so far, but I can see that the movement to deny these medications to pain patients will eventually claim me as its victim too.
I drained my savings in an extensive, expensive, decades-long medical search to find the cause of my increasing chronic pain, assuming that my pain could then be cured. Thousands of dollars later, I learned this would not be the case.
So I followed every lead and tried every non-opioid treatment suggested by any doctor I was seeing. This finally led to the disappointing discovery that my intractable pain can only be controlled by opioid medication.
This was difficult to accept. I don’t want to take these drugs. I don’t want to be dependent upon pills and our broken medical system to save my life. But I am.
My pain comes from the connective tissue defects of Ehlers-Danlos Syndrome. Because this is a genetic condition, there is no possible cure or remedy for the pain that arises from having flawed tissues holding body parts together.
With this incurable and untreatable diagnosis, I know my symptoms will only increase as I age. Fortunately, I found a doctor still willing to prescribe me opioids to control the inescapable pain, and this has allowed me to retain a relatively decent quality of life and functionality.
However, my access to these pain relievers is increasingly threatened by the current campaign to arbitrarily restrict all long-term opioid use. There is no differentiation made between addicts, abusers, and pain patients; all chronic opioid use is viewed as unnecessary and dangerous.
Sadly, there is no scientific evidence for the effectiveness of long-term opioid therapy for chronic pain and, due to ethical issues in pain research, there may never be. Yet the anti-opioid campaign twists this into a statement implying such research has already been done.
The anti-opioid zealots state, “There is no evidence that opioids are effective long term”, ignoring that the opposite is true as well: “There is no evidence that opioids are NOT effective long term”. The malicious intent of stating only the first half of the conclusion is clear.
Though my pain has worsened over the last few years, I don’t dare ask my doctor for an increase in pain medication. I fear any change could trigger outside scrutiny, which could result in an arbitrary decision by some bureaucrat to deny me these medications entirely.
The crusade against opioids overrides a doctor’s years of judgment, assessment, and treatment of their patient’s pain. There are no reasonable exceptions or limitations to the simplistic goal of preventing all long-term opioid use.
The anti-opioid campaign has no understanding, no sympathy, and absolutely no mercy for suffering pain patients. I fear it is only a matter of time before I am cut off and left to suffer untreated pain for the rest of my life.
Without opioids, my life will be an endless torment, and I cannot imagine allowing my pain to run rampant forever. The increasingly strident calls for a complete halt of opioid prescribing for chronic pain will be my doom.
Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.
When her pain allows, she spends her limited energy researching, writing, and blogging about Chronic Pain, EDS, and Fibromyalgia at https://EDSinfo.wordpress.com and writes poetry to sustain her sanity.