What is it like for many to live with fibromyalgia?
Living with fibromyalgia can feel like you are blindfolded, bound, and tortured for unknown reasons without any real understanding of why and without any real hope for healing.
Lesson One. The delay in diagnosis lasts too long for most.
For most, the story of living with fibromyalgia has endured for many years before finally getting diagnosed. A recent Facebook poll I took on the What works for Fibromyalgia Facebook group asked how long it took for you to get diagnosed with fibromyalgia?
Sadly, nearly half have been living for ten or more years with a mystery illness with pain, suffering, and fatigue before ever getting diagnosed. Hopefully, the latency to diagnosis will be shortened through more education and awareness.
Lesson Two. Education
What do you see after the blindfold is removed? You can see and understand who or what is behind all the suffering. Just the awareness and understanding of fibromyalgia through proper education has been shown to reduce the FIQR (Fibromyalgia Impact Score-revised) by 25% in a study done in Spain. By clicking here, you can learn more about this study in my podcast episode from last year. The researchers did two-hour classes for seven weeks in a row discussing fibromyalgia and the concept of the central pain sensitivity of fibromyalgia and lifestyle changes that could be done.
Education is important because many operate with a medical model of understanding fibromyalgia alone, not the biopsychosocial model. The medical model looks at symptoms and tries to understand them from a clear cause and effect. Classic examples are found in microbiology, where specific germs, whether bacteria, viruses, or parasites, are causing the disease. The discovery has led to the very satisfying saving of lives for so many through very effective treatments. Other examples include removing an infected appendix or gallbladder filled with stones. Placing a stent in an occluded coronary artery has rescued countless from near death, allowing blood flow to the critical heart muscle.
In contrast, the biopsychosocial model of understanding is needed for problems like fibromyalgia and related problems because the contributors are complex and multiple. The model looks at the interconnection between biology, psychology, social, and environmental factors and their impact on health problems such as fibromyalgia.
Lesson Three: Hopeful Answers and Solutions
When the blindfold is removed, and there is understanding, then solutions can be implemented. The solutions for treating fibromyalgia need to be evidence-based. Many suffering with fibromyalgia have fallen prey to alternative medicine, offering solutions with little if any solid support for their effectiveness. However, they offer a sympathetic ear and validation that what they are enduring is a real illness deserving of real answers and solutions.
The hope I have for Conquering Your Fibromyalgia is to offer evidence-based solutions implementing the best of medical management and lifestyle medicine under the biopsychosocial medical model of understanding. The joy of helping people recover from fibromyalgia and related problems who have suffered their whole life, back to early childhood, is truly satisfying. Each person has a unique background, current challenges, and opportunities to deal with, but most have common themes and patterns shared by others.
How can you help remove more blindolds?
You can help by sharing this and the
with others who are struggling. You can also share it with their loved ones and those in the medical community.
A quote from the forward to my book from Dr. Joel Young, a psychiatrist who has done very valuable research on fibromyalgia and chronic fatigue syndrome, is poignant. "In the past, depression was often ignored as a "real" problem until the medical community acknowledged that this is a valid medical problem affecting millions and needs to be treated. Now it is time for physicians and the medical community to step up and realize fibromyalgia is a similarly debilitating medical problem that strongly merits diagnosis and treatment." -
I've suffered with Fibromyalgia for more than 35 years. I was 9 years old when I was diagnosed. I am now 47 years old. I have had fibro for more years than you have been a doctor. I held a Fibromyalgia and chronic pain awareness walk in 2017. It was the first walk of this kind that was held around the Allentown, PA area. We raised over $8,000 that went directly torwards research. I agree that society, physicians, nurses, etc. Need to be more educated about invisible illnesses. I would be interested in connecting with you if you would like to speak to a woman who has lived with Fibro (and other disabilities) for more than 35 years. My 17…