I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.
I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.
My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.
And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain.
I’ve tried massage and acupuncture. They help, but I cannot afford a massage or acupuncture every day, which is how often I would personally need them in order to function. Even if I could, massage and acupuncture are not available in my bedroom in the middle of the night, when I often have the most pain.
I’ve tried the strongest anti-inflammatories there are. I’ve tried muscle relaxants. I’ve tried steroids. I’ve tried topical pain-relief patches.
I’ve tried over the counter remedies and I’ve tried homeopathic remedies.
I’ve tried mindfulness. I’ve tried yoga. I’ve tried diet. I’ve tried a different bed.
I’ve even tried CBD oil and cannabis.
None of these treatments have been effective in treating my pain, but the low-dose opioid pain pill I tried as a last resort has made a big difference in my life. I take hydrocodone/acetaminophen (Norco) when my pain is the worst it can be and I take it to prevent the pain from reaching that “worst it can be” level, which is almost daily. I began taking Norco several years ago and my dose has remained the same since then, except during particularly severe flares when I increase the dose for a short time.
My doctor agrees that Norco is the most effective sustainable method of immediate pain relief for me:
When I can’t fall asleep because it feels like shards of glass are being rubbed inside my joints, Norco is my only option. Just so I can sleep.
When I somehow bend in the wrong direction and an explosion of pain shoots through my spine so intense that it takes a half hour to inch my way to my bed, actually screaming in pain the whole way, Norco is the only thing that will reduce my pain enough to be able to even talk again.
When I need groceries but I can barely turn my neck without grimacing, I take a Norco so I can do my shopping, then come back home.
I just took a Norco to finish writing this because of the increasing joint pain in my wrists and fingers from using the keyboard.
I do not take an opioid to feel high or drugged. I actually do not like having to take it; but I do because it is the only effective option to manage my pain just so I can function. The pain never goes away completely, but I cannot imagine having a sustained high level of pain without immediate access to an effective treatment that reduces that pain. I can imagine that I might not want to live with that pain.
It is difficult for many to imagine that trauma-level pain could possibly be a permanent part of someone’s life, so sometimes I refer to chronic pain as a series of lifelong short-term pain events. Sometimes that helps people understand.
Legislation proposals across the country would (some already are) forcibly reduce and in some cases completely remove access to prescription opioids in the name of reducing deaths by addiction, but without putting in place equally effective pain treatment options for chronic pain patients.
Some legislation mandates additional funding for recovery treatment for people for whom addiction is a problem. I agree – there will always be people who are addicted to something, so this funding is needed.
I also agree that prevention is important, and that programs should also be in place to keep addiction from happening in the first place.
I also realize some people become addicted to opioid drugs after using prescription opioids for pain after injury or surgery, and I agree that finding ways to manage temporary pain with a well-monitored tapering dose of medication is important. I also agree there should be consequences for doctors who prescribe recklessly. It is a no-brainer to look at ways to address such abuse of medications by both doctors and patients whose pain is truly short-term.
But Chronic Pain patients who rely on a well-managed, consistent treatment plan that includes opioids are not addicts. Many of us need long-term pain medications to function, to keep us out of the emergency room, to reduce our need for additional medical care, and, often, to keep us from becoming more disabled.
By restricting access to pain medications across the board, many chronic pain patients and our doctors – who agree we need these medications to function long term – are being targeted unnecessarily.
Much of the legislation that I have read proposes cutting access to prescribed opioids without including a provision for how to adequately address lifelong pain management needs for people whose pain will never improve without adequate pharmaceutical intervention.
Is it ethical for chronic pain patients to be effectively punished, and possibly die medically or by suicide as a result of loss in treatment? If the goal is to save lives by cutting access to opioid medications, a strong message is sent to the chronic disease community that our pain and our lives do not matter.
What would help?
Here are some ideas:
- Legislate funding for the expedited creation and approval by the FDA of pain medications that treat pain in the same way as opioids, but without the same addictive properties.
- Mandate insurance companies as well as Medicaid and Medicare to cover complementary treatment options like massage, acupuncture, medical devices, physical therapy and water therapy at an equal level to pharmaceutical treatments. Often doctors and pain management specialists prescribe these treatments, but many patients who live with chronic pain cannot afford them. If patients who rely on pain medications are expected (and physically able) to take them less, the alternatives must be just as affordable and accessible.
- Create provisions for certain types of doctors to be permitted, perhaps through a series of mandated Continuing Medical Education (CME) courses, to bypass opioid restriction clauses through a formal process with the intention of expediting the delivery of opioid medications for chronic pain patients and others who need them long term.
- Create the infrastructure and mandate universal digital medical records nationally.
- Fund research at a much higher level to create better treatments and future cures for people living with severe, incurable diseases.
- Create a healthcare system that provides more incentive and an intentional framework that allows doctors to spend more time with their patients, thus safeguarding mistakes that are made when 5, 10, or 15 minutes is not enough to gauge a patient’s actual pain needs (whether that is remaining on opioids or not).
These approaches will not halt the need for pain medications to exist, but they will reduce the need while providing access for the millions who legitimately need them. Restricting access across the board will only encourage those who are addicted to seek different substances – often more dangerous, while creating an environment where chronic pain patients who need opioids will either find unsafe alternatives or a way out of the pain by attempting or completing suicide.
Targeting people who struggle with addiction is one thing. Helping those who are addicted without also having a plan in place to continue to adequately treat people who live with incurable, severe chronic pain is inhumane and frankly dangerous. We cannot trade one life struggle for another.
If the country moves forward with legislation that restricts access to pain medication with the intention of saving lives, it will be a mistake. Because it will also be restricting access to the same medications that keep millions of chronic pain patients alive and functioning. I agree that we need to address addiction – it is indeed a problem. But we need to find a way to prevent and treat addiction that that does not also restrict chronic pain patients’ access to the most effective treatments for our pain.
If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on and make me smile.