Fibromyalgia
Fibromyalgia (FM or FMS) is a " chronic " syndrome characterized by diffuse or specific muscle, joint, or bone pain, fatigue, and a wide range of other symptoms. Recent research suggests that the underlying physical process to the syndrome is an inability of the central nervous system to properly process pain, with a tendency to amplify or even create pain signals such that an amount of pressure that would not elicit a pain reaction in the average person elicits a much more painful response in the person with FMS.
Research suggests it is not contagious, and that people with fibromyalgia may be genetically predisposed. The ratio of females to males diagnosed with FMS is currently about 9:1 (American College of Rheumatology) though this may be because diagnostic criteria are not consistently applied to both sexes equally. Fibromyalgia is seen in 3% to 6% of the general population, and is most commonly diagnosed in individuals between the ages of 20 and 50, though onset can occur in childhood. The disease is not life-threatening, though it can be debilitating, and the degree of symptoms may vary greatly from day to day with periods of flares (severe worsening of symptoms) or remission. The syndrome is generally perceived as non-progressive, yet that issue is still debated.
Significance
REDdimension Wiki Circle member Kevin McNulty was diagnosed with FMS in April of 2007 after suffering symptoms for more than six months. This article is written by him in order to attempt to explain to others what it is like to have FMS. For more information on FMS in general, please use the links at the end of this article.
Onset of FMS
The symptoms of FMS are so varied and so variable in each individual that there is not a universal onset or progression of symptoms in every person. For Kevin, with hindsight as his guide, he can see now that his first symptoms probably appeared somewhere around 2001. It was about that time that Kevin would occasionally notice a sharp pain in a random location, usually a muscle, that would seem to suddenly appear and within a few minutes just as quickly disappear. This would happen only once a week or so and it did not present any major difficulties, so Kevin chalked it up to getting older. After all, having "aches and pains" was something that just happened with age, wasn't it?
By 2003, he was having back problems and fatigue. Work was particularly stressful at that time, so the fatigue was attributed to stress and the back problems to a poor workstation. When Kevin changed jobs, the symptoms were significantly reduced, so even though FMS flares can be caused by stress and the symptoms can certainly be mitigated by them, there was no reason to imagine a larger underlying cause for the symptoms.
Then in the fall of 2006, the aches and pains started lingering on a more consistent basis. About this time, Kevin was learning to stage fight in order to perform on the chess board at the Sarasota Medieval Fair, so the increased joint and muscle pain was attributed to fighter practice. An increase in headaches at about the same time was easily explained by seasonal allergies with sinus problems.
By November, the palms of Kevin's hands had a nearly constant sting to them, similar to when one has a limb "fall asleep" and then slowly come back to life. His legs and feet hurt, and his back would ache even though no particular activity would have occurred to cause such pain. By December, the aches and pains had spread to include much of Kevin's body. Headaches were more frequent as well, and his ability to perform every day tasks was impacted. He finally went to his family physician to seek treatment.
Diagnosis
A battery of tests were run, all showing negative. FMS is a diagnosis of exclusion, since no tests have been developed for the condition yet, so everything else which could explain Kevin's symptoms had to be ruled out first: Rheumatoid Arthritis, Lupus, ALS (Lou Gherig's Disease), thyroid malfunction, etc. Kevin saw a pain specialist, a neurologist, and finally a rheumatologist. Eventually, the rheumatologist confirmed the diagnosis of FMS.
Most FMS suffers take nearly 2 to 3 years to get diagnosed, so by the time they receive the news and adjust to it mentally, their symptoms are as bad as they are likely to get (though recent studies do show a progression of symptoms with age, it is still generally believed the syndrome is not degenerative). Kevin actually got a fairly early diagnosis, so the syndrome is still surprising him with new symptoms and patterns. He still has generally more good days than bad, though he is sometimes still surprised at how bad the bad days can be.
What It's Like to Have FMS
FMS is different for every sufferer. Some people are barely impacted while others are completely disabled. About 30% of the people who contract it wind up unable to work. And one of the most frustrating parts of the syndrome for sufferers is that symptoms can change in nature and intensity from day to day. A "good day" with very light symptoms if any can be followed by a near-crippling "bad day" with little or no warning.
There are two major components to FMS: the pain, and the fatigue. They are frequently connected and as one increases, so does the other. But some days one dominates. There are days with relatively high energy where pain interferes with daily function, and days when relatively low pain levels are overshadowed by an all-encompassing exhaustion.
For example, on the day this article was written, Kevin had to call in sick to work because he simply had to sleep some more. Despite going to bed at a reasonable hour, he slept until nearly 2:00 p.m. By 3:30, he felt like he could have taken a nap. The exhaustion can strike suddenly and with no warning, like someone just "pulled your plug" and you suddenly feel as if all you want to do it curl up in a ball and go to sleep. Other times it comes on gradually but lingers for days. The energy to do even the most mundane things is just not there, and despite having an overwhelming desire to get up and do something productive, all you can do is lay there.
The other major component to FMS, pain, is nearly a constant companion for Kevin, though the location and intensity of the pain is widely variable. Imagine waking up on a day after you have seriously "overdone it" physically. The first thing you move reminds you that everything hurts. You start a mental inventory of body parts, trying to catalog which ones really hurt and which ones are relatively unaffected.
That is every morning with FMS.
Kevin has pain medication, but its effacy varies with his symptoms. Sometimes the medication keeps everything "below the radar" and the good day is that much better. Other days, the medication seems ineffective. Bad days can be really bad, though fortunately they are much fewer. If you want to know what dealing with chronic pain is like, try the National Fibromyalgia Association's "Clothespin Challenge": place a clothespin on your fingertip and see how long you can tolerate the pain. People with FMS can't take off the clothespin when they've had enough.
Living with FMS
The most important thing for Kevin has been learning what activities today will lead to FMS consequences tomorrow. Not overdoing it becomes a key life skill, and the definition of overdoing it for an FMS sufferer can be significantly different from the average person's. A great explanation of what life with a chronic disability like this is like can be found in an essay called "The Spoon Theory" which explains that people with chronic illness only have so many "spoons" to get through the day, and that everything you do and each decision you make can cost you those spoons. When you are out of spoons, there are no more, and suffering ensues. Kevin encourages everyone unfamiliar with chronic illness to read the essay.
Life with FMS means planning ahead. For instance, when Kevin goes grocery shopping, he could walk the whole trip without too much difficulty. But later that day or even the next he would pay for it with pain and fatigue, so he rides the electric cart provided by the supermarket. He feels ridiculous, but he finally understands that he has to do it if he doesn't want to suffer (and by extension make his family suffer).
But You Don't Look Sick
This brings up a point that many FMS suffers have to deal with on an ongoing basis: the fact that they don't "look sick." Kevin has a handicapped parking permit because if he had to walk a great distance from his parking place to the store, the amount of time he could spend in the store without suffering later would be reduced. But when he gets out of the car, he doesn't look handicapped to anyone, so he often feels "guilty" for using the parking space. He wonders what others think when he walks in and takes the electric cart, or when he has to ask for help in lifting or carrying what used to be an easy load for him.
The evening this article was written, in fact, Kevin went to Wal Mart and started to get in one of the courtesy carts to shop. The greeter stopped him and asked him if he was taking the cart to someone. He said he was using it, and the greeter actually asked him, "Well, is there something wrong with you?"
Prognosis
As of 2007, there is still no cure for FMS. This means a great adjustment for FMS suffers and their families and friends. Social commitments have to be much more flexible, and hopefully friends understand that you may have to cancel at the last minute because you simply don't have enough "spoons" left that day to go out and do something. Though there may be an increasing number of things you can't do, you must start focusing on what you can do in order to keep some semblance of an optimistic outlook on life.
Research into FMS continues. The FDA recently approved a new drug, Lyrica, specifically for the treatment of FMS, a first in itself. Kevin has gained some relief from the Lyrica, but it is not a cure. Daily management of activities and energy expenditures are still the most important factor in managing the syndrome. You never get better, but you can manage the affect of FMS on your life. It is learning how best to do this that Kevin is now engaged in. He appreciates the support of his family and friends as he learns to deal with this. He knows he could not do it without them. It is difficult, though, for anyone without FMS to understand what it's really like to have it, and he wishes he could adequately explain it...but by the same token, he hopes that no one he knows will ever have the common frame of reference necessary to truly understand.
