Living With - and Without - Pain

Tolerance vs. Addiction

Carter acknowledged that pain in neuromuscular disease may reach the stage of requiring narcotic treatment. He said that long-term medical use of narcotics can lead to tolerance, but not necessarily to addiction.

"There is 'tolerance' and then there is 'addiction,'" he explained. "All patients who take narcotic pain medication on a regular basis for a long period of time will develop tolerance. This is much like the guy who drinks a six-pack of beer a night for years. Soon, he feels no effect from the beer, and if he suddenly stops drinking he may have DTs [delirium tremens or alcohol withdrawal].

"Addiction really involves the psychological aspects of the drug," Carter further explained. "If someone is taking the pills for a feeling of euphoria, then they are at risk for addiction. If they are taking the medication to treat pain, then the risk for addiction should be minimal, although they will develop tolerance."

Carter emphasized: "Anyone using chronic narcotic medication needs ongoing medical supervision. If they decide to stop, they should be weaned off slowly to avoid physical withdrawal symptoms as noted above with our beer drinker."

Although they can offer tremendous pain relief and don't usually result in addiction, narcotic medications still have their caveats. A primary concern in neuromuscular disease is that they're respiratory suppressants.

Carter said, "There is a direct effect of the drug on the central nervous system breathing centers. That doesn't mean you can't take it if you have breathing problems, it just means you need close medical supervision."

In my situation, I found that starting with a low dose of narcotic allowed me to evaluate its effects on my breathing, which were minimal. Of more immediate concern was constipation, which Csuka called "a major complication of narcotics." Awareness and preventive measures can minimize this problem, as well.

Pain and Depression

Untreated pain in neuromuscular disease can begin a chain of events leading to depression. The pattern is clear: Chronic pain leads to sleeplessness, which reduces levels of endorphin (the body's natural painkillers). That increases pain sensation, which lowers serotonin levels, which leads to depression, which makes many of us begin to have "dark thoughts." There are no simple solutions to these issues.

That doesn't mean every case of depression or sleeplessness can be linked to pain. Those symptoms should be examined separately and may be treatable without pain medication. At the same time, antidepressants may not only lift your mood; in some cases they may also ease the underlying physical pain.

Michael McQuillen, who specializes in ethical issues in medicine, including quality-of-life and right-to-die questions, said, "Pain is a very strong determinant of depression and of the desire to do anything — even end one's life — to get rid of pain. The literature on assisted suicide and the hospice movement is rife with examples of this interconnection and how recognizing, respecting and relieving pain can make all the difference in the world."

"Some antidepressants have an analgesic effect," Peltier added, "because they also modulate neurotransmitters in the brain that may play a role in pain regulation. Many patients who are depressed also become more 'tuned in' to internal signals, and this may explain why pain seems amplified in depression. Some of the newer seratonergic medicines (nefazadone [Serzone], citalopram [Celexa]) may be better for musculoskeletal pain, and I have used them even in patients who do not have depression."

Csuka agreed. "It is only logical that controlling pain by whatever means will improve a patient's sense of well-being. However, in doing so, the approach needs to be broad, taking in all factors related to pain, both physical and psychological."

A Hard Pill to Swallow

For some people whose neuromuscular disease has interfered with swallowing, finding medication that will result in pain reduction is only half the battle. Getting it into your system is the other.

"There are a lot of different ways to take pain medication," Carter said. He listed pain patches (morphine, fentanyl, lidocaine); pain elixirs for under the tongue (morphine); and inhaled pain medication (morphine inhaler, marijuana smoked or vaporized). The cannabinoids in marijuana are analgesics, he said.

Carter explained that medicinal marijuana is very strong compared to the street variety and that "cannabinoids (active ingredients also found in chocolate) are fat-soluble, rapidly diffusing compounds. The cannabinoids can be 'vaporized' (as in aromatherapy) at a temperature much lower than combustion. Then, you simply inhale hot air, which eliminates the health hazards of smoking." It isn't necessary to hold the smoke from medical marijuana in the lungs.

Several states have enacted laws permitting medicinal marijuana use, including Washington, where Carter prescribes it for his ALS patients.

"It works well for pain, spasticity and loss of appetite," he said. "If used properly, it is remarkably safe with very few untoward side effects."

Although federal laws prohibit marijuana use for any reason, those states that have enacted laws permitting medical use of marijuana offer some legal protection against state prosecution.

Blessed Relief

Whether acetaminophen, morphine or marijuana, we all have a right to adequate pain relief — without guilt, shame, fear or begging.

McQuillen best summed it up: "Medicine and society at large are beginning to recognize the complexity of pain, with various medical societies taking a stand on the need for adequate recognition and treatment of pain; the federal government and the Supreme Court, as well. Sadly, a lot more remains to be done."  

Understanding NSAIDs

Nonsteroidal anti-inflammatory drugs (NSAIDs) are the class of drugs most frequently prescribed. The original NSAID is aspirin, which was first marketed in 1898. It wasn't until the 1970s that scientists began to understand how aspirin worked. We now know that aspirin and the NSAIDs developed to make a safer more effective aspirin in the past three decades inhibit the production of chemicals called prostaglandins. There are both "good" and "bad" prostaglandins.

The "bad" prostaglandins are produced in response to injury, and act as mediators of inflammation and, hence, of pain. Inhibiting the production of these prostaglandins has demonstrated a reduction in inflammation and pain in both animal and human studies.

The "good" prostaglandins help to maintain the integrity of the lining of the stomach, promote clotting by platelets to prevent excessive bleeding and maintain kidney blood flow. Until recently, all NSAIDs were nonselective. In order to inhibit the "bad" prostaglandins responsible for pain, one had to accept some inhibition of the "good" prostaglandins. Fortunately, most patients experience relief of pain without severe side effects, most commonly ulcers of the stomach.

In 1999, two new NSAIDs were introduced (celecoxib [Celebrex] and rofecoxib [Vioxx]), which, at least theoretically, were designed to inhibit the "bad" prostaglandins of inflammation, while sparing the "good" prostaglandins that protect the stomach. They seem to work as well as the older NSAIDs (e.g., naproxen, ibuprofen [Motrin], etodolac, diclofenac sodium [Voltaren], indomethacin [Indocin], etc.), and early studies have supported an improved safety profile with respect to gastrointestinal bleeding.

Decreased blood flow to the kidneys remains a problem even with the newer NSAIDs, so patients with impaired kidney function should not take any NSAID.

—M.E. Csuka, M.D.