I feel ashamed to be a member of the medical profession when I hear from my fibromyalgia (FM) patients that they left in tears from a doctor’s office after being addressed in a rude and abrupt manner.
For doctors who are skeptical about the diagnosis of FM this article is for you. Perhaps you have assessed a few (or many) patients with generalized pain. This pain is either steady or episodic and defies any common structural or mechanical cause. You are then faced with the absence of any laboratory and diagnostic testing to confirm the diagnosis of FM. You find that the typical FM patient seems to overdo the crying, whining and complaining of a pain, which to them is often seen as incapacitating. You likely have tried various medications without any beneficial response.
When you really don’t know what else to do, you might just give up on the patient and the whole concept of FM. However, medicine is full of unknowns and processes yet to be determined. As doctors, we should still try to practice good clinical medicine despite and amid various uncertainties. But, for the patient who complains of FM-related symptoms, have you ever felt perhaps a tiny bit concerned about the psychological impact you may have on her, should you respond with any of the following statements?
It’s all in your head.
Buck up and fight through the pain.
There is no such thing as fibromyalgia.
Do you want to get addicted to painkillers?
You are wasting my time.
Whenever a patient with FM hears any of those statements it surely goes against the famous dictum from Hippocrates, “Divinum est opus sedare dolorem” Divine is the work to subdue pain.”
FM is the orphan syndrome. No one wants to deal with it and too often, the rheumatologists feel stuck with it. In the 2003, 2nd edition of Pain Medicine: A Comprehensive Review, Dr. P. Raj devoted very limited space to FM. From the very last paragraph: “This common chronic pain syndrome will obviously be a continuing source of medical and economic problems until the pathophysiology is better delineated and subsequent improved treatment methods are formulated. Furthermore, understanding the neuropathophysiologic basis of FM may have broader applicability towards an understanding of chronic pain per se.”
It is interesting that Dr. Raj suggests that besides FM, chronic pain by itself is still a great challenge to medical researchers and clinicians. Then again, while FM is still a hotly debated topic, there does exist a recent, comprehensive review of FM in the Nov. 4, 2003 issue of Journal of Musculoskeletal Pain. The entire issue, all 118 pages was devoted to FM: The Fibromyalgia Syndrome, A Clinical Case Definition for Practitioners.
Perhaps in the very near future, basic science research will likely find that FM could have a neuropathic pain pathophysiology, similar to diabetic neuropathy, multiple sclerosis pain or phantom limb pain. While Dr. Raj struggles in his textbook for a neuropathophysiologic basis for FM, from Archives of Neurology, November 2003, neuropathic pain is reviewed: “A simple focal peripheral nerve injury unleashes a range of peripheral and central nervous system processes that can all contribute to persistent pain and abnormal sensation.
Inflammation, reparatory mechanisms of neural tissues in response to injury, and the reaction of adjacent tissues to injury lead to a state of hyperexcitability in primary afferent nociceptors, a phenomenon termed peripheral sensitization. In turn, central neurons innervated by such nociceptors undergo dramatic functional changes including a state of hyperexcitability termed central sensitization.
Normally these sensitization phenomena extinguish themselves as the tissue heals and inflammation subsides. However, when primary afferent function is altered in an enduring way by injury or disease of the nervous system, these processes persist and may be highly resistant to treatment.” I can easily see FM fitting into this description of neuropathic pain.
Even if the exact cause of FM continues to elude researchers or turns out to have a predominantly psychodynamic or psychiatric basis as a somatoform or depressive disorder, these patients will continue to need our support and compassion.
Yes, the FM patient can sometimes seem demanding. It’s true the office consultation is usually time-consuming and not very productive. Remember, the FM patient is often facing considerable stress from her insurance provider, her family and her workplace.
You always have the option for referral to a chronic pain clinic, regardless that the waiting period is sometimes close to one year. Or, solicit the advice and help of your regional psychiatrist and/or rheumatologist.
Over the years, with my FM group therapy sessions, I always began with a creative writing exercise.
The patients handed back one page with the title, “Why I need pain relief?” without adding their names. Out of the hundreds in my binder, I would like to present just one. I feel it clearly sums up the entire FM experience. I hope it might be helpful in swaying some FM disbelievers to at least be a little bit more supportive and compassionate with the next patient complaining of FM symptoms.
“Why I need pain relief?”
“I desperately need pain relief to feel and act approximately in the same manner I did before I was stricken with osteoarthritis and fibromyalgia a few years ago. I know that I have to get used to the fact that this type of chronic disease changes a person physically and mentally, but the hardest part is to adapt and accept the fact that it is here to stay for the rest of my life unless a miracle should happen.
“I don’t recognize myself and neither do my family or my friends. People just assume that because I don’t look sick, I am not sick. Some people even insinuate that I must probably enjoy being sick. Do they honestly believe it is my choice to stay at home all day and depend on others to do things for me when I feel sick and depressed?
“I feel angry and hurt for having lost control over my body and my brain, although I know that I am in no way responsible for what has happened to me. Before I was cursed with fibromyalgia, I took more or less, many things for granted. Although my life has never been a bowl of cherries, I now take nothing for granted. The future looks bleak and scary. Fear has become part of my everyday experience.
“I am afraid to lose the independence I have managed to salvage. I’m also scared of getting worse. Will the pain become unbearable? Will I be unable to walk? The dark and obsessive thoughts provoke my depression and frequent anxieties. Until now, these could only be controlled by medications that unfortunately all have side-effects.
“It is humanly impossible to explain living with pain and fatigue to someone who does not have it.
“Pain and fatigue make me irritable and tired. They make me cry and send me into a deep despair. Pain becomes more prominent in the quiet hours of night when the rest of the world is sleeping.
“The pain can drive me crazy even in small amounts because it is always there. While distraction is great and essential, pain and fatigue always get the last laugh. “Pain is exhausting. It is an overwhelming feeling of incapacity, of being spaced out all the time, of being neither awake, nor asleep. “People tell me to stop focusing on pain. They tell me to relax and pull myself together. Obviously, these are people who don’t have fibromyalgia.”
Dr. David Saul is a family doctor in Toronto with a practice focusing on Fibromyalgia and Chronic Fatigue Syndrome. This piece was reprinted by permission of Dr. Saul.