WE NEED A HERO

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It’s official. Fibromyalgia is real. How do I know? Because I just saw an ad for a drug to treat it. Lyrica (pregabalin) is now allowed to claim that it may help patients with fibromyalgia (FMS). When The New York Times ran the story on January 14, 2008, the headline was: “Drug Approved. Is Disease Real?” In clinical trials Lyrica has been shown to reduce pain by about 2 points on a scale of 10, compared to 1 point for a placebo. It has significant side effects, including weight gain, dizziness, and sleeplessness, problems that are already associated with fibromyalgia. Nevertheless, Pfizer spent $46 million dollars advertising the drug in the first nine months of 2007. Other drugs that have been prescribed for fibromyalgia and chronic fatigue include antidepressants, narcotics, sedatives, anti-anxiety drugs, drugs designed to control epileptic seizures, amphetamines, muscle relaxants, Botox®, and even a drug used for chemotherapy.

Fibromyalgia is a condition characterized by widespread pain in joints and fibrous tissues without the outward signs of inflammation (redness, heat, and swelling) that are usually present in rheumatic conditions. Insomnia, irritable bladder and irritable bowel syndrome, restless legs, dysmenorrhea, cold sensitivity, Reynaud’s phenomenon, hypoglycemia, tinnitus (ringing ears), headaches, and eczema, as well as mental confusion and the inability to concentrate (called fibro fog) frequently accompany the chronic pain and fatigue that characterize the condition. FMS sufferers also exhibit tender points all over their bodies—these are lumps of swollen or knotted tissue that are extremely painful to the touch. Pain medications, even powerful narcotics, offer little relief. Although the lumps can be felt, and brain scans have shown that the pain is real, there is no test to confirm fibromyalgia. It is the default diagnosis after everything else has been ruled out. It is estimated that 10 million adults in America suffer from the disorder.

Many health practitioners do not consider FMS to be a real disease but believe that these patients are hypochondriacs and whiners who are suffering from stress, anxiety, depression, mental illness, or just laziness. They are often told to suck it up and quit complaining by people who have no idea how it feels to suffer from chronic, relentless pain and debilitating fatigue. This attitude comes in part from the fact that fibromyalgia is often accompanied by so many other nebulous conditions, and 85 percent of sufferers are middle-aged women. (The same complaints that are labeled fibromyalgia in a woman are likely to be diagnosed as chronic fatigue in a man; it is the same disease. It may be called one or the other depending on whether pain or fatigue is the predominate symptom.)

Dr. Frederick Wolfe, who was the lead author of the 1990 paper that first defined fibromyalgia, has changed his mind. He now says, ”Some of us in those days thought that we had actually identified a disease, which this clearly is not…To make people ill, to give them an illness, was the wrong thing.” Dr. George Ehrlich, a rheumatologist at the University of Pennsylvania, observed that most people ”manage to get through life with some vicissitudes, but we adapt.…People with fibromyalgia do not adapt.” I think I see part of the problem; who wouldn’t be depressed, stressed, and anxious with doctors like these?

We need a hero. Dr. Richard Bernstein has been a champion for those with diabetes, working tirelessly to educate and heal patients while being ignored by mainstream medicine. Dr. Robert Atkins and Dr. Michael Eades continued to tell the truth about what constitutes a healthful diet while being marginalized and ridiculed by a misguided health establishment. Gary Taubes risked his own credibility and career to expose the lack of science that serves as the basis for much of modern medical practice. Fibromyalgia/chronic fatigue syndrome desperately needs such a hero. I think I have found one.

To be continued: We Need a Hero, Part 2

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  1. So called Fibromyalgia? (I’m a fan of Dr. Nortin Hadler – “The Last Well Person”.) Some thoughts: This “condition” might be chiefly deficiencies of vitamins A&D. Both should be of animal form or, perhaps, better said, source, for example: cod liver oil. (Or in the case of D, sun exposure.) And D needs to be obtained in quantities much higher than recommended now.

    I found my way to your site because I was searching for commentary on Gary Taubes. Pertinent to Taubes, perhaps “Fibromyalgia” is yet another unfortunate manifestation of the consumption of sugar and starch – especially in conjunction with a defiency of vitamin D for which itself we can thank the medical industry for disastrously making a bugaboo of sunlight. Just some thoughts.

  2. My wife suffers from fibro so I started a social networking site for Fibromyalgia Sufferers And Their Families. Would you mind giving it a mention.

    http://fibromyalgia.ning.com

  3. In response to Anonymous:
    Thanks for your comments; I’m glad you found your way to my blog.

    On the subject of FMS being the result of a vitamin deficiency–there may be something to this; I’ll be commenting more in future posts. I agree that most of us are lacking in vitamin D, especially those who live in the Northwest like I do. However, I have been taking a D3 supplement and my blood tests show that my level is perfect, but there has been no improvement on my fibro symptoms.

    A connection has also been established between carb consumption and FMS since hypoglycemia frequently accompanies the disorder. A low-carb diet is probably one piece of the puzzle. But here again, if I am typical, it is not enough to reverse the disease since I have been following a very low-carb diet for over eight years without much improvement in the fibro symptoms.

    I’m not familiar with Dr. Hadler, but I’ll check him out.

    Thanks again for the comment. Let;s continue the discussion.

  4. Please define your terms, i.e. “very low” carb diet. For me, Bernstein is “very low” at 30 grams per day.

    This is one of my frustrations with reading blogs, it is a little difficult to tell just what is being discussed. Thanks!

  5. To Anonymous.
    Point taken. I started at about 20 carbs a day a la Atkins/Protein Power induction. On maintenance, I don’t really count carbs, I just avoid the usual suspects like rice, potatoes, bread, flour, beans, sugar, pasta, etc., and sweet fruits like pineapple, bananas, and mangoes. After eight years of low-carb cooking I have found lower-carb replacements for most of the things I’ve eliminated so there’s no reason to cheat.

    Although I firmly believe that diet is responsible for all or most of the health problems that have gotten worse in the last 30 years, including FMS, my regimen has not eliminated it, which leads me to the conclusion that there is more involved than simply eliminating inflammatory foods, trans fats, fructose, and carbs.

    Thanks for your input. Stay tuned.

  6. I know that I have fibro with symptoms including IBS, gastritis, GERD, stinging, burning, aching, fatigue, lack of concentration, depression, tinnitus, hyperacusis, hearing loss, climate sensitivities, and more.

    Also, I am a male, 57, who has lived through horrible childhod dysfunction out of which the above symptoms began to emerge.

    So, I deeply believe that a body and mind subject to intense disruption and insecurity is another major factor in the cause of fibromyalgia.

    Many books I have read that promise improvement, and I’ve tried several. The longest regimen I was on was the Gauifenesin Protocol, for four months, which caused me absolute hell due to already existing ETD (Eustachian tube dysfuntion) and pre-existing high volume tinnitus which became even more tormenting. I had no choice but to set aside those pills that I purchased through the mail from the Marina del Rey pharmacy.

    A great decrease in the consumption of carbs, I also have tried, but because I am already very thin, 5’11”, 146 lbs., the lose of even more weight was out of the question. Due to IBS, I cannot eat high fat foods, red meats, coconut, avacados, and other fatty foods.

    Also, I saw a nutritionist for a few months, the sort of practice that asks the patient to lie down on a table and to raise his arm up, after which the practitioner forces the arm down while a substance in laying on one’s stomach. It felt like voodoo, and I was even embarassed to give so much attention to the food-based vitamins. Incidentally, the nutrients and visits are very costly.

    And so, today I take xanax and Lyrica, continue to work a fulltime job, although many days suffering in a quiet hell. All too often, I imagine myself leaping from the Sunshine Skyway, a tall bridge that spans across Tampa Bay.

    The Lyrica, by the way, is hit and miss, and I cannot take it but once (50 mg.) every other day due to an increase in tinnitus and hyperacusis that it causes. The xanax (2 mg. daily) I take to attempt some reasonable calmness and to deal with the ringing.

  7. To the most recent “Anonymous” poster:

    Your comment reminds me how lucky I am to be reversing without having such severe symptoms. The downside is that it will take me longer, as a high-dose/slow- responder, than it will for those who have such a horrific response to guaifenesin. I doubt that I could persevere in your situation.

    Have you tried telling your story to the administraters of the GuaiGroup? I explained about this forum in a recent post here: http://carbwars.blogspot.com/2009/05/new-birthday-we-need-hero-part-6.html. They might be able to give you advice about how to adjust your dose so that you are making progress without so much suffering.

    Here are the links to the group if you want to sign up: http://COMMUNITY.LSOFT.COM/archives/GUAIGROUP.html and click on “Join or Leave Guaigroup.” The “Guaigroup FAQs and Recipe Archive” link, and all Guaigroup information and instructions are at: http://www.fibromyalgiatreatment.com/guaigroup-links.htm

    In regard to the diet: I am surprised that the low carb diet did not eliminate your IBS symptoms. Is it possible that you can’t digest fat due to a gall bladder problem? (If that were the case, I think you could still eat fats like coconut oil because it doesn’t require bile to break it down.)I don’t know enough to give medical advice, but I hope you will check out the GuaiGroup to see if they can help you.

    I hope that faster, less difficult treatments will be available in the future, but for now, I believe that Dr. St. Amand’s protocol is all we have.

    I wish you luck. Please write to me again to let me know how you are doing.

    Regards,
    JBB

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