As a working mother, I tend to be exhausted towards the end of the week’s end, but on the days that I am dealing with symptoms related to RA and FMS, I start to feel weary and numb. The physical and mental fatigue and the lack of emotional response are typical for people who live with extreme pain and exhaustion.
For the last couple of days, I been consumed with vertigo and you would think all their years of living FMS, I would get used to this feeling considering it comes as often as once a month. Usually, the vertigo brings with it a massive headache and pain that appears to be radiating around my spinal cord, on my neck, shoulders and back. I would take joint pain over this any day. Vertigo is a feeling of spinning while you are stationary. Other symptoms include nausea, perspiration, unsteadiness, blurred vision, difficulty speaking, and a lower level of consciousness. Vertigo is a symptom consistent with central nervous system disorders.
I have read a lot of information about fibromyalgia (FMS) and one of the themes that seems to stand out is that fibromyalgia is its link to the central nervous system. The first time I read about this connection, it sent shivers down my spine. With so few answers and so many questions about fibromyalgia, sufferers generally feel alone. For me, it feels like a private battle. How can I expect those I love to understand when the medical community doesn’t understand fibromyalgia, a condition that has most likely been around for centuries? The more I learn about FMS, the more I feel like I have stumbled upon Pandora’s Box.
Fibromyalgia affects between 6 million to 10 million Americans, the majority of them women. The research available does not point to a specific cause and the only real answer is what FMS is – a pain-processing disorder that affects and arises from the brain and spinal cord. The response is the body’s altered and miscommunication of pain at an amplified level.
Of course, it is 2010 and after decades of research, acknowledgment of FMS, as real illness, has happened. With criteria for diagnosis, relief and acceptance are coming. Right now, the only prescription that specifically treats FMS is Lyrica. It is quite an expensive medication, but now that other pharmaceutical companies are working towards other treatments, patients will more access to medications that properly target FMS. It is also believed that the federal government is funding nearly a dozen studies of the disease.
All this is promising and for the millions of patients who have been told nothing is wrong with them, there is a sense of hope. However, there is a misconception on what type of condition FMS is. My medical experts look at FMS as a muscle condition or an autoimmune disease because the source of pain is unexplainable. Further, in some instances, people struggling with the reality of FMS are looked at as emotionally troubled.
FMS patients spend years looking for answers and seeking help for their symptoms, and even after diagnosis, the prospects make a person feel weary and numb. There really are no answers to why, and even on medications, there are days where FMS consumes all my energy and forces me, like others, to live an abnormal life. Simply having a diagnosis means nothing without answers. I have simply accepted the cards I have been handed but I haven’t given up. While I am definitely a long ways from being pain and symptom free, I am willing to do what I can to feel better. People like me are like a blueprint for a future cure. We accept this because we know the answers will eventually come, and if not during our lifetimes, perhaps in our children’s.
The Journal of Rheumatology looks a theory called “central sensitization” wherein miscommunication among nerve impulses in the central nervous system arises. Neurons that send messages to the brain become excitable and exaggerate pain sensations. In response, FMS patients feel intense pain instead of feeling fatigue or a minor discomfort without any cause to account for the pain. An account for the pain would be something like an injury or inflammation of muscles and joints, as we see in arthritis. However, there is something wrong with the workings of the central nervous system in FMS patients that results in an abnormal pain response.
The perception of FMS in the medical community has been mixed and the response is one that reaches a contention between those that deny the existence of the disease and those that are specialists in FMS diagnosis and treatment. A little bit of understanding can go a long ways and as difficult as it can be to treat FMS patients, improvements can come through well-managed treatment plans and lifestyle changes. Unfortunately, however, there are millions of people who suffer and are not getting the treatments they need.
Weary and numb is really the only response I have after all these years. A diagnosis only means one answer and so many more questions.
SHIR, Y., & FITZCHARLES, M. (2009). Should Rheumatologists Retain Ownership of Fibromyalgia? The Journal of Rheumatology, 36 (4), 667-670 DOI: 10.3899/jrheum.081073