The Pain/Prescription Problem
What happens to patients experiencing chronic pain when treatment options are limited by the medical community’s lack of understanding regarding their condition? How can patients best communicate regarding a symptom that cannot be objectively measured? When is pain medication the right treatment option? How much medication is too much? Who can fibromyalgia patients trust to take their medical struggle seriously, without leaving them over- or under-medicated?
FightFM.com editor Ashley Morgain takes a look at the ongoing controversy faced everyday by fibromyalgia patients, their physicians, and their loved ones regarding the treatment of chronic pain.
Part 1:
Facing the Pain
If I had to find one positive thing about the experience of being diagnosed with and treated for fibromyalgia…well, it would be a challenge. One thing I can say with certainty, though, is that I am grateful to have been diagnosed with FM well into the 21st century rather than, say, medieval times. True, the current medical community leaves much to be desired with regards to understanding Fibromyalgia Syndrome or its associated conditions; but at least we have finally passed beyond the point where we need to discuss whether the condition exists (it does), and have moved on to the more helpful discussion about the nature of the disease and how to treat it. (*Note - if you are a fibromyalgia patient seeing a doctor who is uneducated regarding the condition, please see our post on How To Find The Right FM Doctor For You.)
Let us be clear about this - Fibromyalgia Syndrome is not a bed of roses. No one who has the condition can honestly say otherwise. There is very little to be loved about an illness that causes regular exhaustion (we’re talking the post-marathon kind); hypersensitivity to touch, light, sound, and nearly everything else; and of course, widespread pain. Fibromyalgia is a debilitating condition that often leaves its victims jobless, friendless, and suffering both physically and emotionally. That is the bad news.
Fortunately, there is also some good news accompanying the frightening diagnosis of fibromyalgia. The condition in and of itself is not progressive, meaning that patients are liable to get better rather than worse over a matter of time. And although it is sometimes associated with more dangerous illnesses such as major depression, fibromyalgia itself is not fatal. Unlike other auto-immune and neuro-muscular conditions, fibromyalgia does not cause a breakdown or death of any human tissue. (Or as nearly every doctor who has evaluated me in the last five years has put it: “At least it’s not lupus.”) So. Slim as that silver lining may seem, especially to the newly diagnosed, it is an important lining to consider. It means that although the battle might seem uphill, FM patients do have a chance to adjust their lives and regain much of what the illness has taken from them. The process of learning to accommodate and compensate for symptoms is frustrating and it may take years, but as FM patients we have nothing but time - and for once, time is on our side.
Undoubtedly the first step in regaining control over one’s life after the diagnosis of FM is to learn to understand and manage the condition’s multitude of symptoms, and by far the most debilitating symptom for most FM patients is widespread, chronic pain in the joints and muscles. The severity and sensations of pain caused by the condition vary from patient to patient, but all FM pain can be characterized in the same way; it is chronic, neuropathic pain. It is important to understand that the chronic pain faced by FM patients is different from acute pain–the type of pain that anyone might feel during and after an injury such as a sprain or a broken bone. Acute pain signals the brain that there is potential or actual tissue damage. It generally starts out intense, is localized at the point of injury, and resolves itself as the injury heals over time.
However, what FM patients experience is different from acute pain. It is chronic neurological pain–pain that is not a result of any particular injury, but is rather a misfiring of neurons in the central nervous system (the brain and spinal cord). In other words, the central nervous system neurons are telling the brain that pain exists and persists where it should not. Because the pain is not associated with any particular tissue, neuropathic pain is generalized, meaning that it seems to spread out across large portions of the body. It is not localized like acute pain–FM patients often have trouble identifying one point of contact where the pain is worst. And it is chronic–it does not resolve itself over time as tissue heals, because it is not caused by damaged tissue. In essence, the mechanism that exists to warn the brain when tissue may be damaged has somehow, itself, become damaged. So FM patients are feeling pain without observable cause. This is why FM patients may sound oddly vague or have trouble describing their pain. They may be feeling a variety of sensations such as aches, burning, numbness with “pins and needles,” or even inexpressible sensations which are caused by neural misfiring. By way of example, I often experience a particularly infuriating sensation which I refer to as “snakeyness” because the closest I can come to describing it is to say that it feels as though snakes or worms are crawling through my muscles. Before I had first experienced the sensation, I could not possibly have imagined it. So trying to describe it to someone without FM is like trying to describe colors to a person who can’t see. At some point, you just have to take our word for it. FM hurts.
Many FM patients and physicians seem to get stuck at this point in the discussion. While it is generally agreed that pain accompanies the condition, and that the pain is neurological in nature, there is little to no consensus in the medical community regarding exactly how to treat such pain. Because the experience of pain and other sensations varies from person to person, many physicians have trouble simply trying to evaluate the degree of pain a particular patient feels. Without any objective measurement, physicians are left to rely heavily on the patient’s self-reported experience of pain.
Unfortunately, a combination of issues can cause this reliance on self-report to go from helpful to harmful. The nature of chronic pain is to be incurable. Although FM patients may experience periods of “remission” from the pain, there is always a likelihood that the pain will return. The severity of the pain also differs due to conditions such as hormone levels, the amount of stress the patient is under (usually considerable, for obvious reasons), or even due to changes in weather. In order to effectively treat the pain, both the patient and the physician need to establish some kind of baseline to which they can compare more painful days. This requires a relatively long-term treatment relationship. Unfortunately, many FM patients are uninsured or underinsured, meaning that they have little a choice regarding which physicians they can see, and how often they can see them. As a result, physicians are often left in a situation where they must try to evaluate and treat chronic pain without a clear understanding of the patient’s needs or situation.
Another inherent risk in relying on self-report to evaluate pain is that of potential dependence or addiction to prescribed pain medications. Again, it is the nature of chronic pain to be incurable. So while the pain certainly needs to be treated, patients must be continually re-evaluated for dependence behavior such as taking more painkilling medication than prescribed, constantly asking for early refills, or seeking pain medications from several different sources. Unfortunately, with so little understanding of the root cause of the pain, patients may find themselves in a Catch 22 situation; in order to avoid the issue of dependence many physicians refuse to prescribe painkillers altogether or treat patients seeking relief from pain like drug-seeking criminals. The result can be devastating, especially for patients who do not have the resources to find another doctor.
While the controversy regarding the nature of treatment continues, we can be certain of one thing - FM pain MUST be treated. The National Centers For Disease Control (CDC) state that FM patients report nearly the lowest quality of life when compared with other chronic illnesses, including those that are usually fatal. This is likely due in part to both the amount of pain patients experience, as well as the difficulties they face in attemting to find effective treatments for the pain. However, until the medical community has a better understanding of the causes of fibromyalgia, both patients and physicians will continue to have to make tough decisions while seeking the most effective course of treatment for the pain.
