Saturday, April 10, 2010

One Sentence--A Sign of Change?

I hate watching commercials on TV for fibromylagia drugs. For starters, none of the women in the ads look like they have fibromyalgia. Plus, do you see all the things these women are doing? The latest one is working (standing up no less) in a bakery, while others have been giving a lecture in front of college students, spending all day touring New Orleans on foot with her husband and the final one was seen gardening, handwriting in her journal and creating art in her studio, all in one day. Let's see, could I do those things? No, no, no to the first three and handwriting is definitely out too. I can do some gardening and art and crafts, but not on the same day. Definitely not arts and crafts like painting that require a lot of fine motor skills over extended periods of time. So I can do two (modified) things out of the six things. That TV portrayed level of activity is not a great representation of my life with fibromyalgia.

These commercials also give the impression that these drugs can produce marked improvements in functioning, almost to the point where someone with fibromyalgia could return to their normal, pre-fibro life. I wouldn't know, because none of these drugs helped me. They only gave me side-effects. Other people I know with fibromyalgia aren't achieving this level of improvement while they are on these medications. I can only conclude that since there is a whole spectrum of severity of fibromyalgia symptoms, perhaps these women on TV started with less severe symptoms.

After months and months of seeing these ads, I almost always tune them out when I hear them. That is until I heard something the other day that caught my attention. I heard just one sentence:
Fibromyalgia is thought to be the result of overactive nerves that cause chronic widespread pain.

This statement is not news to me, but to hear it in a TV commercial? Granted, the medication advertised works on nerves, which is probably why this statement is included. But is it possible that these TV commercials will educate anyone who watches them about the true cause of fibromyalgia pain?

According to the
National Fibromyalgia Research Foundation:
While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of Fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.

Translated, this is science-speak for:
fibromyalgia is a neurological disorder in which pain signals from the body are amplified by the brain, causing the sufferer to live with chronic, wide-spread body pain from head to toe. So if you say to me, "Selena, your fibromyalgia is all in your brain." I'd reply, "Why yes it is. It's a centrally mediated chronic pain syndrome."

Because fibromyalgia is a centrally mediated chronic pain syndrome, every drug manufacturer on the planet will try and see if their drugs that work on the brain and brain chemistry will work to relieve some fibromyalgia pain. This includes drugs for pain, epilepsy, depression and other mental health disorders. Touting these kinds of drugs for fibromyalgia pain may give some the impression that people living with fibromyalgia are depressed or have mental disorders, but it is clear from the research that
mental disorders do not cause fibromyalgia.

I am hopeful that if researchers and doctors continue to follow this line of inquiry and treatment they will stumble across some real and powerful treatments for fibromyalgia. That said, my optimism is tempered by the fact medical science still doesn't know everything there is to know about the human brain and neurological disorders can be some of the most debilitating and difficult to treat conditions. So in the meantime, I will continue to employ the
self-help techniques I have learned to manage my symptoms and maintain a modicum of quality of life until the science and medicine of fibromyalgia catches up to me.

But still, I wonder if that one sentence is a sign of change in the perception of fibromyalgia as a medical condition. Perhaps instead of arguing about whether or not fibromyalgia exists, there can be scholarly debate about which area of the brain is responsible for fibromyalgia symptoms. I, for one, would welcome such a change, even if it comes as a result from watching fibromyalgia drug commercials on TV.

What do you think of fibromyalgia commercials? I'd love to hear what you think, so please leave me a comment.
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Knytrose said...

I think you hit it right on the money! I can't possibly do all those things in one day! I was so excited to hear that same sentence included in the ad - but also have not had any relieft from two of the three meds. Hoping to try the third one soon. But I don't expect it to change my life to where I am a superwoman.
As far as I'm concerned - I am already functioning as a superwoman. I still work fulltime - with some modifications to my schedule and the fact that I'm able to work at home some of the time. And that I can usually plan and participate in something I enjoy once a month - like an outing to a restaurant and a movie. If I save up all my 'spoons' carefully, I can even do something more involved like a 'vacation' with a few days of fun. But I have to plan extra days off after that to recooperate!
I have tried for years to explain that the way I feel pain is more than what 'normal' people feel pain. I finally explained it to my dad (I think he had seen the commercials.) -- if you accidently hit your fingers on the door frame as you walk through and hit stings, for me its' as if I slammed my finger in a car door. He looked very thoughtful and said oh - that's would really hurt! To which I replied, that's how my body feels most days. I just have had to adjust to that level of pain. So maybe those commercials are helping some with the education.
Now if we could just find something that would specifically work for FM!

Sharon Stevens said...

Again, I agree w/you regarding how the commercials portray fibromyalgia.

I don't doubt that the brain is effected by the neurotransmitters. As they research the brain they are going to find out alot more about all kinds of disorders and hopefully discover something to treat them. ie depression, bipolar, etc.
Our family has been passing on depression for years. I believe alot of it is because of the lack of vitamins and nutrients in our food, not to mention all the chemicals they pump into us.
I'm sure years ago (1800's) they dealt w/depression, however I do believe there will be a great discovery in this century of brain disorders etc. At least I hope so.