More About Fibromyalgia on Oprahby Karen Lee Richards Patient Advocate
My recent SharePost "Fibromyalgia Mentioned on Oprah," triggered some excellent comments and questions. Rather than just responding via another comment that few people would see, I decided to do another SharePost.
Your comments centered around two very valid questions:
Has anyone ever been "cured" of fibromyalgia by a change in diet - or any of the dozens of other products and treatments claiming to cure FM?
What can I tell family and friends who saw that Oprah show and tell me all I have to do is follow Dr. Oz's diet and I'll be cured?
Has anyone been cured?
Like most of you, I'm extremely skeptical whenever I hear someone who claims to have been cured of FM by some product, treatment program or diet. Generally they are promoting that product or program and stand to profit by getting you to purchase whatever they're selling. I even wrote an article to help you recognize the warning signs of these scams: "Let the Buyer Beware."
Another possibility is that the person claiming to be cured was misdiagnosed and didn't really have fibromyalgia. A number of other conditions can produce similar symptoms that may go away when certain deficiencies or imbalances are corrected. There's no way to know without full knowledge of their medical history.
Having said all that, I'll answer the original question - whether I know anyone who has been cured. I do personally know one person who has recovered from FM, largely through dietary changes. Yvonne Keeny suffered with real fibromyalgia for 13 years and her recovery has lasted for 10 years thus far. I will say, though, her recovery was not as simple as just trying a new diet. It was a slow process and took some pretty drastic changes on her part. (If you'd like to read Yvonne's story, see: "Yvonne Keeny - Turning 'Cope' to 'Hopeâ�™ for Thousands of FM/ME/CFS Patients")
To her credit, when Yvonne got better, she founded the Fibromyalgia Coalition International, a nonprofit that tries to "give hope to everyone suffering with Fibromyalgia and Chronic Fatigue Syndrome through extensive research and reporting of natural, proven and effective therapies that focus on the root causes." She doesn't profit monetarily from sharing what she's learned; rather, she gives her time and energy to helping others. And even though Yvonne has experienced a full recovery herself, she acknowledges that not everyone will necessarily have the same result. However, she feels that learning to eat better and live a healthier lifestyle will, at the very least, bring about some significant improvement.
After working in the field of fibromyalgia for 10 years and meeting thousands of FM patients, Yvonne is the only person I know who has experienced what I would consider to be a full recovery. Several have had significant improvements, usually attributable to a combination of treatments and therapies. Interestingly, every combination seems to be different. That's part of what makes this illness so frustrating. Every individual patient has to go through trial and error to find the combination that works best for him or her.
What can I tell family and friends?
This is a problem most of us face from time to time. Well-meaning family and friends hear of a product or treatment that is supposed to cure fibromyalgia and they rush to share the exciting news with us. It's an awkward situation. How do you tell someone who wants to help that the product they're suggesting may be a scam, that you're sick of trying new treatments only to be disappointed, that you can't afford to keep spending money for things that don't work?
If it's someone I barely know, I usually just thank them for the information and tell them I'll look into it. But if it's a close friend or family member, I usually say something like, "I really appreciate that you care enough to share this with me. I'll look into it and if it seems like something that might work for me, I'll talk it over with my doctor." If you think they will understand and not be offended, explain to them that there are dozens (possibly hundreds) of products and treatments being promoted as cures for FM, but because many of them are scams, you have to be careful and research them first.
Fibromyalgia and Oprah
While I'm on the subject, I'll take this opportunity to share some additional thoughts regarding the long-held hope that Oprah would do a show on fibromyalgia. Since Oprah did the program on which she revealed her thyroid condition, I've had second thoughts on whether doing a show about FM would be such a good idea after all.
I didn't see the thyroid program, but I've certainly read about the fallout from it. Apparently the only doctor Oprah featured on the show was Dr. Christiane Northrup, who attributes thyroid disease to emotional and psychological problems. On her Web site, Dr. Northrup says:
"In many women thyroid dysfunction develops because of an energy blockage in the throat region, the result of a lifetime of 'swallowing' words one is aching to say. In the name of preserving harmony, or because these women have learned to live as relatively helpless members of their families or social groups, they have learned to stifle their self-expression....It's no coincidence that so many more women than men have thyroid problems. Thyroid disease is related to expressing your feelings..."
If this is the way Oprah presents a disease she has, I'm afraid to think how she would present a disease like fibromyalgia that has had such a controversial history. In one short hour, she could send us back to the dark ages. I think for now, I'm going to be thankful for the progress we've made and hope that Oprah ignores us awhile longer.
If you'd like to read an interesting blog about Oprah's thyroid show, see: "An Open Letter to Oprah's Viewers About Thyroid Disease: Your Thyroid Condition is NOT Your Own Fault"