Some days I just get mad. Today is one of those days. Hell, I’m not mad; I am pissed. I need to stop censoring myself just because I don’t want to offend anyone reading this. I am pissed!
I’m pissed that I still have hope – hope that somewhere inside me there is still a vibrant healthy person, but everyday I feel myself slipping further and further away from her. I am pissed that I cannot just wake up in the morning and take control of my day. I am pissed that I can’t always finish the laundry when it needs to be done or scrub the damn toilet. I am pissed that my head and neck hurt so bad I’m half expecting an alien to rupture out at any minute. I am pissed that my dog has so much unreleased energy he is becoming neurotic and I can’t walk him. I am pissed that I have so many damn limitations in my life. I am pissed because I don’t believe my life will be like this forever, and yet I have no idea how to change it. I have hope; hope with no place to direct it.
And then I see on the local news that there is a Chiropractor who claims to have the cure for Fibromyalgia. He has the cure, and if you give him your life savings to come to his clinic for treatment you will no longer suffer from FM. So she does it. A lady here in San Diego, at her wits end because she cannot live another day with the pain and fatigue of FM, she gives him her life savings and she goes to his clinic for weeks of treatment and guess what? She still hurts! She hurts and now she is broke and more stressed which will lead to more pain. She placed her hope in him and he let her because he is trying to capitalize on a condition that is misunderstood and under-researched. He is a snake oil salesman!
Dr. Whitcomb claims he “figured out a long time ago what was causing it and how to treat it.” Well great! Then why not share it with the few researchers who are actually trying to discover a cause and treatment for Fibromyalgia? And why not make all of the information on your website simple and easy for everyone to access? Why not share your miracle cure with the world if what you are truly after is helping people and healing people? Why? Because you are not, because what you are really after is the $7,000 – $12,000 you charge for treatment.
And you have plenty of testimony from people you have helped. Well sure, daily massage and chiropractic adjustment can help alleviate chronic pain and reverse chronic symptoms, and I am sure the patients you did help suffered from those aliments, but that is different from Fibromyalgia. You cannot take five minutes to diagnose someone with chronic pain as having Fibromyalgia, and then help their symptoms, and then declare you have found the cure to Fibromyalgia. How can you have the cure when just last month legitimate researchers proved there are blood flow problems in the brains of people with Fibromyalgia. Does your great cure address this? Did you already know this and decide not to share? Do you even realize that you can have chronic pain and not have Fibromyalgia? You are a charlatan!
And now I am even more pissed! I am pissed that you took her hope and capitalized on it. What does she do with her hope now if she has any? How will she know where to place it, and whom she can trust with it? You took that from her. You took her hope and deposited it your bank account. Great! Now you can advertise your “cure” even more. Buy yourself a soapbox and a covered wagon with your profits. And don’t forget the damn top hat!
There is hope, so don’t despair. I don’t know anything about the chiropractor you’ve mentioned, but there are some fibro patients who’ve found relief through adjustments. There is no “cure” as you know.
I too have fibromyalgia and thought five years ago that I was doomed to a life of canes and heating pads. No more. I live a full and active life. It can be done. Start by respecting the body you have and feed it well and move it regularly. That means a healthy diet and exercise. Yes, I know it hurts to move, but you must move. Every day. Even if just a little. Start small.
I’d send you a hug if I could because I’ve been there. I remember those days and I want you to know that good days are ahead.
Thanks for the words of compassion Sue. I think only someone who suffers from chronic illness can understand the kind of rant I went on. Most days I manage fairly well, but some days it is simply too much. I am happy to hear you have learned to manage your FM so well and you did it naturally. Thanks for the great advice.
I myself have benefited temporarily from chiropractic care, so I do believe in its benefits. I just don’t believe that Dr. Whitcomb should be selling the false promise of a cure and profiting off peoples desperation. It makes me very angry.
The California Board of Chiropractic Examiners is now moving to revoke his license. If you want to read more about him click on the link in my post above, and here is another: http://abclocal.go.com/kgo/story?section=news/iteam&id=6507206
I too have fibromyalgia and I have been doing well for almost a year now but it took a lot of work and it still does. I can see both sides of this coin. I started a website to help others but it costs money to do things like this so you have to sell things. I give tons of info away for free, even tell exactly what I used and did for free because I do want to help people but again the more people you try to reach the more it costs. I know the desperation so I feel very sorry for this woman (I myself have spent thousands on things that didn’t work) but not everyone is a Dr. Whitcomb and you have to research everything before you even try it to see if it makes sense to you. Every illness requires a leap of faith when you want to get well and it doesn’t matter if you are getting treated for cancer or fibromyalgia sometimes things don’t work, sometimes they do but you still have to pay for the treatment and it is up to you to whether to take that leap or not and for how long.
I agree with so much of what you say Mary. I do a ton of research which is why I am so mad that he offered a “cure” and not simply “relief.” But should she be blamed for trusting him? No, the blame lays with the expert for his false promise.
I am glad to hear you are doing well living with FM and that you have found a way to share your experience and expertise. I hope you continue in good health. FH
I agree, he shouldn’t have used the word cure or even claimed it, actually I think it is illegal to use words like cure. I do feel very sorry for that woman. I wish I could help her. I feel so sorry for everyone with fibro especially those who feel suicidal sometimes because of it. Thanks to people with blogs who can educate people hopefully, before they get duped by those who wish to prey on them. Now I would like to see if anyone knows how many people have gotten taken by that woman that claims to have cured her fibro with five items from the grocery store. Have you seen that one? If I had some extra money I would see what she did and expose that one if it is not sound. If anyone has bought this and tried it I would like to know the results. It has given me a good idea though to maybe put a fraud watch page on my website to expose such things maybe some good can come of it.
To the AP editors:
The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience. By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this “set of symptoms” and to point fingers at the usual “villains” (i.e.: pharma and the nonprofits who accept money from them), than to focus on the millions of desperate, patients who deserve to have a voice in the discussion. The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day—and to look forward to some sort of quality of life in the future.
This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn’t yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?
Why would AP print information that is simply not true—i.e.: people with fibromyalgia are “more likely to have a history of mental illness and are economically disadvantaged?” That is totally false, as is the writer’s statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw’s functional MRI study. The money for all of the NFRA’s funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a nonprofit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)
How can we allow the system to fail millions of people whose only “fault” is to have developed a devastating illness? Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.
Now that would be news worth printing.
Sincerely,
Lynne Matallana
President, National Fibromyalgia Association