The Nothing Disease?
Updated: Aug 11, 2022
You have heard of fibromyalgia described as the invisible disease, but you may have never heard of it called the "nothing" disease. However, many of you suffering or have a loved one enduring it may have felt it. I am referring to the all too often scenario of someone who has gone to their doctor who ordered a battery of tests for widespread pain, fatigue, and cognitive difficulties. This battery often includes a thyroid test, CBC, sed rate, and comprehensive metabolic panel. The results and exam are normal. The doctor makes a special note that the joints are not swollen. The person may or may not have tender points. They get referred to different specialists and may have more tests done, and they also come back normal. This story may be familiar to those of you who are living with fibromyalgia.
Trying to assure you that you are fine, they tell you, "the tests are normal. You are healthy. You have nothing to worry about." A recent patient went through 3 years of this before seeing me. The doctors she had seen did an extensive medical workup, and all the tests were also normal. The doctors told her after all the workup that she needs to see a therapist. She was not given any reason or medical diagnosis for what was wrong. She felt her problems were dismissed and chalked up to her having purely psychological issues.
Unfortunately, if this sounds familiar to you, it's not reassuring. You can't have "nothing" wrong with you. You have something. You have to have some big something because it sure feels like it. "I am not imagining all these symptoms. How can all these doctors not find anything wrong with me?" Each referral diminishes your confidence in the medical system to help you. You may seek alternative medicine with marginal improvements at best. You are resigned to learn to live with it. You think, "I will continue to suffer and learn ways of coping without any confident, hopeful professional medical guidance."
Or, finally, after years of frustration, you get diagnosed with fibromyalgia but are not given a lot of hope that it will get better. Perhaps, you are offered some medicine and told to rest and exercise without an in-depth explanation of what is wrong and how to battle it. You may be told, "Since we could not find anything wrong with you, you have something called fibromyalgia, which we don't really understand that much about, and there isn't a lot that can be done for it."
You may feel like you are nothing to the doctors. They don't care much about what you are going through. You get the impression that they think you imagine it all like you are a hypochondriac.
I want you to know that you have something real, and there is a lot that we do understand about it. FM is a legitimate disease that has real solutions and there is real hope. The suffering is more than just the pain but includes fibro fog. Fibro fog is often more frustrating than the pain. There is also fatigue which adds to the frustration.
The plight of those enduring fibromyalgia has inspired me to write the book "Conquering Your Fibromyalgia: Real Answers and Real Solutions to Real Pain." I heard stories from many patients about the frustrations that they have had for years before they saw me and were diagnosed, and I was able to treat them. I have significantly reduced the suffering of fibromyalgia in my patients through a comprehensive approach, with many bringing their fibro suffering to the same levels as those unaffected by fibro. I realized that fibromyalgia management has been neglected for too long and wanted to share the positive message of hope. The goal of the book was to inform, inspire, and equip those battling fibro.
This book is meant for you, for your loved ones who don't understand what you have endured, and for your doctors to help them learn about fibro and partner with you.
In the past, depression was ignored as a "real" problem until finally, the medical community acknowledged this mood disorder as a valid problem affecting millions and needs to be treated. Now it is time for the medical community to step up and realize the fibromyalgia and fibromyalgia-like disorders are similarly debilitating medical problems that strongly merit diagnosis and treatment.