Fibrowise

Soon, a new book on Fibromyalgia will hit the shelves.

Dr. M. Clement Hall is the author of the upcoming book “The Fibromyalgia Controversy.”

Though I have not reviewed the book, the reviews say it is an “unbiased view” of Fibromyalgia. Dr. Hall uses his clinical experience to create six “composite” characters with chronic pain complaints and also discusses the history of Fibromyalgia, common treatments and arguments.

Now, I know I haven’t read the book. However, I will say one thing about books that surround the Fibromyalgia “controversy.” I have yet to read one that is “unbiased.” Books written about the controversy are almost 100% guaranteed to disprove Fibromyalgia as a disease and discount the notion that it should be considered a diagnosable illness.

This seems to be the case with Dr. Hall’s upcoming book. Reviews mention that Dr. Hall reveals how the medical community “invented” the Fibromyalgia diagnosis.

I’m not sure what Dr. Hall’s take is on the “creation” of Fibromyalgia as a diagnosis. The reviews seem to indicate that his take on the diagnosis is a fairly recent even. However, Fibromyalgia, the collection of symptoms including pain, fatigue, brain fog and other symptoms, have been around for a long time under other names. But, this was not an “invented” diagnosis.

I understand Dr. Hall’s point. He argues that we are doing a disservice to pain patients by giving the diagnosis of Fibromyalgia to describe all chronic pain. However, we are doing a disservice to patients WITH widespread chronic pain by NOT providing a diagnosis.

As a patient, I was relieved to receive a diagnosis. This meant that I could create a treatment plan and have something tangible to grapple with when I went to the doctors. At the same time, now that Fibromyalgia IS recognized as a DISEASE, not a syndrome, insurance companies are MUCH more likely to cover costly medications, from muscle relaxers to pain pills to anti-depressants.

I’ve heard Dr. Hall’s arguments before. The “We believe the pain is real and not psychological but that doesn’t mean it is bad enough to need pain medication to manage.” The translation for this from me? “We don’t know what the hell is wrong with you and while we can’t say you DON’T have a disease, we can’t say you DO, so we would rather not risk treating your pain with actual pain medication because we don’t want to be held liable in the event you are actually faking.”

Dr. Trock’s book Healing Fibromyalgia takes the exact same approach and talks about these same arguments. Dr. Trock approaches Fibromyalgia the same way as Dr. Hall. “We believe patients are in pain, but there is no evidence that proves they are actually in pain.” What does that even mean? “We believe you, but we don’t really believe you.”

One frustrating aspect to these books is that Fibromyalgia treatment and diagnosis has actually come a long way in recent years, from brain scans to studies. And, many stereotypes of Fibromyalgia have been disproven, such as the fact that MANY MEN are diagnosed with Fibromyalgia. Just because women COMPLAIN more doesn’t mean that (as Dr. Hall states) 95% of those with Fibromyalgia are women. In fact, if you listen to specialists in the field, such as Dr. Daniel Clauw, who study Fibromyalgia in-depth (and are not just basing their opinion on patient anecdote) Fibromyalgia affects women and men practically equally in this country.

We are doing MEN with Fibromyalgia a HUGE disservice by making these incorrect and unsubstantiated claims. Especially when they come from medical professionals. We are also doing women a disservice, by once again implying that women in pain are merely “complainers.” When did we slip back into the dark ages of medicine?

Unfortunately, these books seem to serve one purpose – to confuse the general public on an issue that really isn’t THAT controversial. As I have said on several blogs, Fibromyalgia isn’t THAT hard to diagnose and does not actually mimic THAT many other diseases.

Dr. Hall says that we don’t know much about pain yet, just like we didn’t and still don’t know much about germs. Yet, every year we create a new flu vaccine for the comfort and protection of our population, even if we don’t know what strain will actually hit us come winter.

I guess those of use who are long-time sufferers of chronic pain are not entitled to the same courtesy. Instead, Dr. Hall wants to encourage doctors to do more research and not give a “wastebasket” diagnosis (there is a buzz word if I ever heard one. Doctors said the same thing about Lupus once).

Personally, I find it laughable that anyone would suggest that it is a “medical community made disease.” My doctors fought tooth and nail NOT to diagnose me with this illness until it became undeniable. I have not been diagnosed by just one doctor, but several, including a doctor who HAD fibromyalgia!

So where do these books leave patients? Currently, in limbo. Once again a doctor is trying to convince the masses that Fibromyalgia is something controversial. It isn’t. Or that because it requires individual treatment plans, it must not be a real disease – bull.

So what can patients do to counteract these “controversy books?”:

1. Blog, Blog, Blog! Write your own blogs about your experiences and treatments
2. Write reviews on these books, outlining the good and bad.
3. Set a GOOGLE ALERT for Fibromyalgia so you can stay tuned to harmful articles by commenting with your own experience and setting the record straight.
4. Raise Awareness: Check out the National Fibromyalgia Association, use Facebook and other social media websites to join Fan Groups that support Fibromyalgia sufferers and wear a Fibromyalgia ribbon on National Fibromyalgia Day.

Have any other suggestions? Please feel free to leave comments!