Pain, Pain, Go Away: Dealing with Chronic Pain

I knew last week when I mentioned I live with chronic pain, I would receive a lot of inquiries. I heard from several fibromyalgia sufferers, people like myself, who seriously need the support of others who deal with this mysterious ailment and desperately want the compassion of others.

I also heard from the curious, the stoic, and, the cynical, those who believe fibromylagia is just the syndrome du jour of yuppie middle-aged women. And so it is when you reveal an uncomfortable truth about yourself. People have questions. Some have doubts. All need information.

So this week, I am going to address the innocent, yet frustrating, refrain: "You don't look like you are in pain."  Earlier this evening, I went in search of a pictorial depiction of pain. I wanted to see that which I obviously do not resemble. Here is what I found...the ubiquitous pain chart many hospitals give patients after surgery or other painful procedures to assist us in describing the undescribable.

Okay, so we all can agree, there is no resemblance between YaYa and the happy faces gone awry above.

The faces actually have some credibility; its the verbal descriptions that are an insult to anyone struggling to function with pain. Who is going to take seriously: "I hurt a little bit"? Who is going to prescribe a pain killer for: "It hurts a little more"? When does "It hurts even more" become "It hurts a whole lot"?

Years ago, my Mom, a nurse, taught her children certain words to help explain unpleasant body sensations. We learned terms to describe degrees of discomfort. I seem to remember words like: "soar, achey, throbbing pain, burning pain, and stabbing pain." All of which, by the way, can describe fibromyalgia, along with the phrase "electric shocking pain" which is my term for the neural pain that can accompany this disorder.

Pain is such a subjective phenomenon, and there does not exist a universally accepted chart that accurately depicts everyone's experience. I did discover a verbal explanation that sufferers could find helpful. This pain scale, designed by Andrea Mankoski, is considered useful in describing the severity, if not the quality, of pain.

(Whenever a medical professional  asks you to rate your pain from 1 - 10, ask for a pain scale so you can be sure you're speaking the same language.)
 
0 - Pain free
1 - Very minor annoyance - occasional minor twinges.
2 - Minor annoyance - occasional strong twinges.
3 - Annoying enough to be distracting.
4 - Can be ignored if you are really involved in your work, but still distracting.
5 - Can't be ignored for more than 30 minutes.
6 - Can't be ignored for any length of time, but you can still go to work and participate in social activities.
7 - Makes it difficult to concentrate, interferes with sleep You can still function with effort.
8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 - Unconscious. Pain makes you pass out.

Throughout the year, depending on such things as the weather, my workload, my level of physical activity, my weight, my mental health, the stress in my life, and the quality of my sleep, I fluctuate between six and eight on this scale. 

Since so many people are visual learners, I have made an effort to show you my pain levels. To do so, I solicited the help of a familiar cartoon character: Wile E. Coyote(WEC).

1. WEC reading a book = I feel fine.


2. WEC holding a  help sign = My head, neck, and shoulders are aching and burning; I am waking up frequently during the night due to the discomfort.







3. WEC with mousetraps attached to his
extremities = I am hurting everywhere;
sleep is painful and sporadic. I know my pain
will increase because the quality of my sleep is decreasing.

 

4. Boulder crashing down on WEC's head = Heavy fatigue has set in. I am experiencing "fibrofog"--difficulty thinking and concentrating.



5. WEC is crashing = So is YaYa. My hips and legs throb; I feel dizzy and nauseous from the fatigue and pain. A fibromylagic flare-up is in effect.

6. WEC experiences a complete crash and burn =  Unfortunately, once I have a full-fledged flare-up, I   do not know how long it will last--sometimes weeks, sometimes months.  Luckily, with a multi-pronged approach to treatment, I am able to keep my fibromyalgia in check most of the time. Some  patients must stop working if their flare-ups persist and worsen.  
                                                                               

Next week: Dancing to the beat of a different drummer.