The Pain of Fibromyalgia

It’s summer time, and like everyone else, I can’t wait to have a holiday.  Mine is starting today. It’s time to get away and relax. But what am I really getting away from?  Not my family or my friends – I love those guys and worry about them wherever I am. I need to get away from work, but I love my job. I love what I do and I am proud of what I have accomplished. So, why do I need a holiday?

My job stress is from performing daily in a professional manner, from sticking to a schedule trying to meet deadlines for reports requested by lawyers and insurance companies, from being depended upon by others to feel better, from advocating for patients and from trying to make a difference in people’s health by blogging. 

But not all stress is emotional. Stress is a biological response, triggered in the brain by many other things, including pain. Pain is highly prevalent and a common cause of every day stress. This is why pain relieving medications, as a group, have the highest sales among over-the-counter (OTC) drugs, taken by approximately 20% of the population in a given week. 

Which gets me back to my holiday…. 

I have had a chronic pain disorder for years. Mine is due to structural decline in my back. I am lucky because most of the time I am able to manage my disorder successfully, without drugs. But in the days leading up to my holiday I had to work longer hours to meet my obligations before going away. The day before, I worked for 14 hours in the hospital, came home and answered emails, went to the bank, organized the few work items I had to take with me and pack. I went to bed at 1:30 and woke up at 5:15 to catch my flight. On the plane I was cramped in a seat not made for people with short thighs like mine, and I arrived at my destination in severe pain, experiencing awful fatigue and feeling spaced out. I woke up this morning after 13 hours of sleep, had a massage, exercised and spent time in a whirlpool, I’m feeling somewhat rejuvenated. But yesterday evening, I felt what most of my patients feel. People with fibromyalgia have significant pain, fatigue, and the feeling of being spaced out, every day- for many months to years before I get to see them in my office. I tried to imagine what it would be like to feel that way every day. Consider how awful it must be. It will help you to understand why thoughts and risk of suicide are higher than normal in these people, especially if there are higher levels of anxiety, more day dysfunction due to sleepiness, and a higher impact on quality of life. The more severe the fibromyalgia, the greater the risk.

When I ask my patients to describe their pain, they often tell me that they feel like they have been run over by a Mack truck. I tell them that I can’t understand this – that those people are all dead. So, how do we assess the level of someone else’s pain that we’ve never experienced?

Knowlegable physicians and pain researchers use various scales. For example, people are commonly asked to rate their pain on a scale from zero to ten. Almost all of my fibromyalgia patients rate their fibromyalgia pain as eight to nine, out of ten. Surely, there is no comparison. I brought this observation up with other doctors at a workshop on chronic pain. One doctor stated that when he sees this, he tells his patients that a “ten” is having your limbs removed with a chain saw without an anaesthetic. His patients then wince and subsequently change their score to a two or three.

So, why do all these people score their fibromyalgia pain level so high? Because the pain is relentless. Chronic pain is linked to poor sleep, more fatigue, poor concentration and mood changes, which are seen in fibromyalgia. As a result, the quality of life in these people can be abysmal. This is why most valid measures of chronic pain evaluate its impact on quality of life. It is how we measure fibromyalgia. We also use these measurements to assess responses to therapies in scientific studies, and to assess the level of disability.

Pain is a biological stressor, made worse by other stressors, such as poor sleep and emotional stress. Studies prove repeatedly that people with fibromyalgia do not get good quality sleep. We don’t understand why, and drugs to sleep don’t help. While the most consistent form of emotional stress endured by these people obviously comes from how they feel, the second most common source of stress is the bias they endure because their disability is not accepted, understood, or respected. The bias comes from ignorance. It comes from those who lack empathy and are judgmental of others.

Unfortunately, there are still many doctors who believe that these illnesses are psychiatric, despite the growing scientific evidence stating otherwise. By the time many patients get to see me in my office, many have explored a variety of alternative health care options. Some have paid exorbitant amounts of money to practitioners who sell what they claim to be effective treatments for these conditions, without any evidence to support their claims except for testimonials on their own websites.

When doctors deny the physiological symptoms in patients with fibromyalgia, they are hurting patients by not being supportive of their conditions. Other practitioners are hurting these people by making false claims and taking their money.

Because I love what I do, I’ll still be doing some work while I’m on holiday.  But I’ll be exercising, eating well and taking time to relax. After this change in scenery, time off from my busy work routines, and more time for exercise, my biological and mental stressors will be reduced enough to ease the pain caused by my back issues – until I need to get away again.

Unfortunately, people with fibromyalgia don’t get a holiday from their chronic pain.

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