Chronic, intractable pain is challenging to treat. Doctors may identify a known cause, but the pain's location can shift throughout the body, proving them wrong. Drug treatment may work for a while and then, for unknown reasons, abruptly stop. Excruciating pain episodes may increase in frequency and intensity and then slow down on their own accord. The pain sensation may change from intense burning to stabbing to shooting pain. There are so many variables to address when dealing with intractable pain. There are no diagnostic tools available to reliably determine where the pain is, where it is coming from, or the intensity of it felt by the patient. Nor is there any ability to predict its frequency or intensity.
I have tried countless therapies, both drug, and physical treatments. Each one held promise when I began them, but each one consistently failed me in the end. The cautious hope and optimism of each one led to hopelessness and despair. The mental anguish was every bit acute as the physical suffering.
One example was acupuncture. I did try acupuncture at the suggestion of a friend. I was lucky to find a graduate student who was doing a study on acupuncture and peripheral neuropathy. I went to see her twice a week for six weeks. The treatments were very relaxing in a calm atmosphere with soft music playing. She would insert the needles in different places all over my body. It was not painful at all. Then I would quietly lie there for 30 minutes. During several treatments, I fell asleep. Oh, how greatly I wanted this to work. Unfortunately, it did not lessen the crippling pain. I recalled feeling sad for several weeks afterward.
Months later, I read an article about TENS units. TENS stands for Transcutaneous Electrical Nerve Stimulation. It uses low-voltage electrical current through pads placed on your body. The goal is to use the electrical current to disrupt pain impulses from your brain, possibly by blocking or scrambling them; medical researchers aren't quite sure. The electrical stimulation is mild and unobtrusive. Doctors suggest placing one pad on each side of your spine just above your buttocks for chronic pain. It did provide me some relief, and it was essential to start using it prophylactically before my pain got too intense.
The TENS unit seemed like a non-invasive treatment that held promise. It was, it did, and then it didn't. It felt like my nerves eventually overrode any pain management treatment, and the pain found new pathways. Not exactly a scientific answer, but it's the best I can describe.
Like many others, this treatment worked for a period and then stopped. Unlike other treatments, I discovered I could return to it in the future, and it would be effective again, albeit temporarily.
A drug company released a new drug called pregabalin (brand name Lyrica in the United States). Pregabalin held promise for people with fibromyalgia and diabetic neuropathy (similar but not the same as mine), among other diseases. My doctor prescribed it, and the drug was expensive, but the pain relief was miraculous. For the first time in years, I felt hope that I could return to normal life. Within a few weeks, I developed severe mouth ulcers caused by an allergic reaction to the drug, and my doctor took me off it immediately. It was tough to accept, and I cried hard over it. And my intractable pain returned with a vengeance.
The State I live in decriminalized the use of marijuana for medical purposes. I navigated a bureaucratic maze with my doctor's orders to purchase some. My medical insurance will not cover its use, and it wasn't easy to justify it financially. The experiment did not work. Different types of marijuana gave me only slight reductions in pain, and some made me terribly nauseous.
In the 1990s, one drug company introduced Oxycontin, a time-released form of morphine. Physicians started prescribing it for many pain types that would not have required morphine. My doctor convinced me to try it, and I started on a low dose, and it worked when no other drug would.
Oxycontin is part of my pain management regimen and has been for many years. As expected, I built up a tolerance for it. My doctor slowly increased the dosage until he reached the maximum allowed.
The tragic story of oxycontin addiction and overdose deaths is sorrowful. No question about it, and the culpability of the drug company and irresponsible medical practitioners is shameful. Unfortunately, most people view all oxycontin users with suspicion and stereotype them as "addicts" that abuse the medication.
Medically speaking, I am probably "addicted" to oxycontin. Yet, I have never abused it, used it to get "high," craved it, never "doctor shopped," nor committed a crime to get it. It is medically necessary for me, and that is a fact of life I had to accept, and I need it to have some semblance of a normal life.
The medical, legal, and political worlds have shifted their perspectives on Oxycontin as a viable pain reliever to a toxic, addictive substance. Doctors and the government began to look at people like myself, who needed the drug to manage intractable pain, as drug seekers looking to address an addiction rather than pain relief. I struggled to get my prescriptions filled, was swept up in regulatory oversight, humiliated with wrongful stereotypes, and, in one case, forced to go without it. The psychological toll on me is heavy.
And then the world went crazy, and the oxycontin world crashed. The goal became getting people off the medication, but for many, like myself, there are no viable alternatives. The government was watching, too, especially physicians, for how much "oxy" they prescribed.
Watching a medical professional's demeanor change when they read my chart and see the amount of pain medication I must take is interesting. To me, it's like watching a switch flip in their brain, and their attitude and demeanor to me becomes darker. I'm immediately viewed with suspicion, an addict who must be seeking more medication. Little do they know how far from the truth that is.
The medical community has all sorts of outdated beliefs when it comes to pain. For example, if you are genuinely in pain, your vital signs, such as blood pressure and heart rate, must be very high. That is an inaccurate way to assess pain because vital signs do not change during a pain episode for many people. Such is my case.
The intensity of my pain has increased over the years due to the continuing nerve destruction. Neuropathy is a progressive disease for me. Currently, there are no other paths forward for pain relief: no drug or physical therapies.
I am in a seemingly hopeless state of body and mind. And like millions of people who suffer from intractable pain, like me, the future looks dark, and I don't know what to do.
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Next week: Surviving Life
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