To the friends and family of people with fibromyalgia

To the friends and families of people with chronic pain conditions and/or fibromyalgia:

I would love to spend some time addressing just what exactly fibromyalgia is. Fibromyalgia is a central nervous system disorder that branches off from an even broader condition called dysautonomia. Firstly, because fibromyalgia can be a consequence of dysautonomia, we should learn what that means. Dysautonomia is a general disregulation of the autonomic and sympathetic nervous systems. The sympathetic nervous system controls everything that you have no conscious control of (eg., breathing, heart rate, body temperature, vasodilation/constriction, digestion, and much more). When the central nervous system enters a state of disregulation, chemicals become imbalanced, the signals get confused, and it becomes, more or less, stuck in the state we would call dysautonomia. Having dysautonomia may often lead to developing fibromyalgia. Now, this means that people with fibromyalgia would also have dysautonomia because this is where it stems from. Although scientists are not exactly positive about the cause of fibromyalgia, current studies point to a central sensitization component. Studies on this show that the brains of people with fibromyalgia interpret pain in a much different way than people without. The signals that are sent from our bodies are misinterpreted by the brain as pain. This does not, in any way, mean that the pain is not there, or that it is not real. The nervous system just seems to forget how to turn those pain signals off. The brains of people with fibromyalgia also show physical changes, such as shrinkage in some areas known to be correlated with pain and the perception of pain. Other studies show that the quality of sleep that fibromyalgia sufferers have is under par compared to that of someone without. Our sleep has been proven to be interrupted by awake-like periods that keep us from entering the deep, restful sleep that is needed to heal the body. Many more studies are being conducted as well. Needless to say, fibromyalgia is a real disease, with very real symptoms, that should be managed by a medical professional.

The symptoms of fibromyalgia are extremely diverse, and everyone experiences them a bit differently and to various degrees. Because it affects the central nervous system, nothing is off limits when it comes to symptoms. The most commonly known, and most prominent symptom of fibromyalgia is pain, wide spread pain. The pain of fibromyalgia is not limited to one area, or even a few areas at a time. Often, it is usually prominent, and moderately to severely painful, in many areas of the body at once, compared to the other areas, which simply ache at the same time. It is almost an indescribable pain, one that encompasses every part of your being. On the best of days, everything only aches. The pains move rapidly, or they build up after one another.  Shooting pains, stabbing pains, aching pains, throbbing pains, you name it, we get it on the daily. The second most problematic symptom for me is the extreme fatigue. Many people with fibromyalgia also have a diagnosis of chronic fatigue syndrome. This causes debilitating fatigue that makes it difficult to complete everyday tasks. This is most often caused by the lack of restorative sleep that most fibromites experience on a nightly basis. It is much different from the being tired from a long day at work. The exhaustion that people with chronic fatigue feel is far beyond the point of just tiredness, and they feel it nearly constantly. Feeling tired is only baseline for us, so when we finally complain that we are tired it means we are exhausted. Irritable bowel syndrome (IBS) is also very common in people with fibromyalgia. This often causes pain in the stomach, alternating diarrhea and constipation, and sensitivities to food among other things. Fibromyalgia is also notorious for causing headaches, frequent ones. It is linked with migraines and tension headaches, but I seem to experience a mixture of both that come and go on a daily basis, often lasting for several weeks at a time. Sensitivities to stimulation are also a huge factor in fibromyalgia. Loud or repetitive noises, bright or flashing lights, or fluorescent lights can be interpreted as pain to fibromyalgia sufferers. Large groups of people, or being around emotional stimulation too long can be over stimulating for many people with central nervous system disorders. Overstimulation often leads to more or worsening symptoms. Twitching, muscle spasms, and spasticity are common muscle symptoms. Cognitive issues such as memory problems and speech disturbances affect many, as well as depression and anxiety. Heat intolerance, cold intolerance, exertional intolerance, chemical sensitivities, rashes, dry eyes, dry mouth, dizziness, malaise, and much, much more. These are only a few of the symptoms that are experienced by people with fibromyalgia.

As you can see, there are a significant amount of symptoms associated with fibromyalgia. Because of the wide array of symptoms doctors, family, and friends are quick to dismiss the many problems as being made up or of the psychiatric nature. After it was found that between 3 and 5 million people have this same kind of story to tell, the scientific community started becoming a bit more responsive about admitting there was a basis to these complaints. There is now scientific evidence proving the validity of the disease, formerly called a syndrome. The hard part is not convincing the scientific community, nor convincing the doctor that sees you, rather the friends and family that see you most often. Fibromyalgia is considered a "invisible illness" because it cannot be detected by just looking at someone. People watch you complete everyday activities all the time, but they do not see how much pain you are in while doing them. Fibromyalgia can create a great deal of difficulty with the simplest of tasks. A person with fibromyalgia cannot push as hard as a person without or their condition can escalate into a flare. A flare is a period of time where the symptoms and pain increase considerably compared to that of that particular person's baseline level of pain, fatigue, and other symptoms. Flares can be brought on by heat, cold, stress, exertion, or illness. This makes it more difficult for others to understand or sympathize because the sufferer could be "normal" for stretches, and then all of the sudden become tired, in pain, cranky, and depressed for another long stretch. Employers, although required to make adjustments to meet the needs of the employee with fibromyalgia, often brush the person off as lazy or unreliable and are quick to replace the individual. At least 1 in every 50 people you meet has fibromyalgia, but you would never be able to tell those who do from those who don't.

Those who do have fibromyalgia typically fall into a distinct "type-A" kind of personality. They have big dreams and a lot of goals to meet. They have a "get er' done" kind of attitude about them, but they also tend to have a high amount of stress in their lives. Some point to this as the cause of their ailments, but studies have not proven it. People with fibromyalgia are strong, some of the strongest people you will ever meet. They tend to hide their pain from their loved ones and often suffer in silence. They try their best to look and feel as "normal" as possible, but often struggle at keeping up with work, kids, the household, and a social life. Friends are often cancelled on last minute because the sufferer is not feeling well or is hurting. Many people with fibromyalgia cannot hold a steady job because of the unpredictability of their illness and must rely on assistance for income. Others can work with difficulty if the work conditions are favorable enough. Either way, fibromyalgia affects everybody differently. Because their is no cure, people with fibromyalgia are expected to live the remainder of their lives in pain.

Because sufferers face the harsh realities of knowing that the rest of their life will be lived in pain, a huge number of people with fibromyalgia also are affected by depression and anxiety. Who wouldn't feel hopeless and miserable knowing that their lives are be to lived in a massive amount of pain with no end? Luckily there are a few treatments that may improve these symptoms, but there is nothing that can cure fibromyalgia. Please help us to raise awareness so that one day there might be hope for a cure.