| The Ultimate Fibromyalgia Recource Center |
| Are you searching for answers about Fibromyalgia? You've come to the right place. There is help and you are not alone! |
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| Why people with Fibro often suffer alone... ...I believe my story is similiar to most Fibro patients. For years regular MD's, without any support from the FDA, have viewed Fibro as a "mental disorder". I was told over and over..."It's all in your head." Finally, the FDA has recognized Fibro as a genuine disease, not a "syndrome" I first went to my MD in 2004 with printed research I had gotten from the internet, telling him that I felt I had Fibromyalgia. He just shook his head at me and then told me that I had Aluminum Poisoning and needed Chelation Therapy. He told me the reason I had stroke-like symptoms was because of the damage the aluminum had done to my nervous system. For three years, I repeatedly insisted that he reconsider a diagnosis of Fibromyalgia, hoping to get into some sort of trial program and find a treatment to ease my pain. (Also, a diagnosis would prove to my family that I wasn't just pretending or being lazy!) He refused. Gradually, the pain worsened, the stroke-like episodes became more frequent and my dementia worsened to the point where I had difficulty functioning in my work. In June, 2007 I suffered another stroke-like episode, went to the local ER and was told I had "Vertigo", (because the CAT came back normal). I was lectured by the ER MD that there was no way I could have ever have had aluminum poisoning and promptly sent home. Once again, I received no back up from the doctors and my family and employers assumed I was making it all up!) I immediately sought another doctor, who recommended first that I see a "Pain Specialist" for medications strong enough to control the pain and a referral to see a neurologist. While waiting for my first appointment to see the "Pain Specialist", I "Fired" my original MD and upon getting my records from his office I learned that he had in fact diagnosed me with Fibromyalgia, Chronic Fatigue Syndrome and Aluminum Poisoning back in 2004 when I first went to see him and suggested that I had Fibromyalgia!!! Why he never told me, I guess I will never know. Someone suggested to me that doctors do not like to be told by the patient what he/she thinks they have...perhaps he just resented my input. For three years he had known that I had Fibro and did nothing to treat it except offer pain medications that weren't even strong enough to lessen the pain, much less control it. He did not refer me to a "Pain Specialist". He did not refer me to a neurologist. He did nothing...and my friends and family continued to doubt the validity of my claims. The "Pain Specialist" who treated me put me on the Fentanyl patch, which is a very strong narcotic drug for pain and openly admitted that she knew nothing about Fibromyalgia. She referred me to a neurologist whom she felt was qualified to treat 1500 MS patients and 1400 Fibromyalgia patients, during my first office visit, he confirmed that I did have Fibromyalgia with Complicated Vertebral Basilar Migraines, (with aura). (This verified that all the times I had complained of stroke-like symptoms it had indeed been TIA's which do not show up on a CAT scan!) He immediately began my treatment program and although his diagnoses are not always good news, at least someone is taking good care of me, knows and understands the disease and confirms that my claims are legitimate!!! Due to the fact that my MD ignored my claims that I had suffered a stroke on at least four occasions, I now suffer Cognitive Dysfunction and have to take Aricept, an Alztheimer's medication and at age 44, have the cognitive skills of an 85 year old The "Pain Specialist" who treated me put me on the Fentanyl patch, which is a very strong narcotic drug for pain and openly admitted that she knew nothing about Fibromyalgia. She referred me to a neurologist whom she felt was qualified to treat me. As it turned out, she had referred me to a leading doctor in his field. With over 1500 MS patients and 1400 Fibromyalgia patients, during my first office visit, he confirmed that I did have Fibromyalgia with Complicated Vertebral Basilar Migraines, (with aura). (This verified that all the times I had complained of stroke-like symptoms it had indeed been TIA's which do not show up on a CAT scan!) He immediately began my treatment program and although his diagnoses are not always good news, at least someone is taking good care of me, knows and understands the disease and confirms that my claims are legitimate!!! Due to the fact that my MD ignored my claims that I had suffered a stroke on at least four occasions, I now suffer Cognitive Dysfunction and have to take Aricept, an Alztheimer's medication and from the age 44, have had the cognitive skills of an 85 year old woman. I cannot work and have fought for and won the case for my disability insuranc, without a lawyer in only 4 months time. I believe all of my problems gaining appropriate treatment could have been avoided had my MD treated me for Fibromyalgia from the beginning. Due to the fact that my MD was not trained to treat me and ER doctors ignored my claims, I am now divorced, disabled and very ill. (My marriage of 23 years dissolved, partly because my spouse did not believe me, not having the support of my family physician.) The pain worsened to the point where some days I could not even get out of bed. The dementia worsened to the point where I could not even carry on an intelligent conversation because I could not find my words. It seemed that no one believed me and I felt totally alone. Why do we suffer alone? Because regular MD's are not trained in the treatment of Fibromyalgia! If you think you may have fibromyalgia and meet the symptom criteria, yet get no support from your MD, ask for a referral to a Neurologist or Pain Specialist who treats Fibromyalgia. ***I have now been on disability for 18 months and although under the care of a very good neurologist, my pain persists FM IS A PROGRESSIVE DISEASE. I don't care what the doctors say. I've had it all these many years and it has gradually gotten worse. If a doctor tells you differently, he is wrong. This disease requires constant treatment and monitoring by a specialist in the field who is willing to treat each case individually and to deter from "the common opinion in the medical community" at any given time. I encourage everyone to continue their search, not to give up, to be strong and determined until you are able to find a physician who helps ease your pain and treat your various symptoms. |
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Why Those With FM Often Suffer Alone - About Me