I am flabbergasted that my doctor asked me why I have trouble sleeping – pain, or sleep apnea – she asked. I had to explain to her that sleep disturbance is a symptom of fibromyalgia, and that we don’t get the deep sleep, the restorative sleep, and that is why we are exhausted all the time. SHE DIDN’T KNOW THIS! How can I trust her to know anything else? Should I take the medicine she prescribed? I don’t know what to do. She said she knows a lot about this illness, and she did not know that basic fact. It is in the literature, and I know about it. Why doesn’t she?
I wrote the above paragraph on my Face Book page last evening, in my frustration to find answers to my health problems and to find someone who understands, or at least has some knowledge of the disease. This disease now has been identified as a disability. A person so identified can receive disability benefits, such as Social Security. As such, it has received recognition in the health community as a legitimate disease. And there is recent research identifying it as an immune disorder; there is a blood test to identify it. It also is called a disorder of the central nervous system. However, it is still called by some doctors a “waste basket” of symptoms, and I still find articles on the Web that says it is likely a familial disease and stemming from mental illness. I assure you that to my knowledge no one else in my family has fibromyalgia, and there is no family history of mental illness. That is a dangerous and unprofessional statement, with no truth in it.
Do not believe what you read in the articles listed on the side of your Face Book page. While some information may be factual, the articles are written by people with little medical knowledge and an ulterior motive. That is why they appear in the advertising side of your FB page. I am infuriated that these people get their stuff printed as fact, for millions to see. They do not identify themselves, and you have no idea who they are or where they get their information. I will say that the FM Face Book page is helpful.
Back to my doctors. I changed to this medical practice because a previous primary care physician treated me and my symptoms with such dismissal that I could no longer go to her. I found my current practice with the assurance that they indeed know “all about” fibromyalgia. In my misplaced zeal, I gave the owner of this practice the name of a scientific book written by a physician on this subject, in which all up-to-date research is presented in great detail. The title is “Figuring Out Fibromyalgia,” which is reviewed in a previous post, in case you want to read it. Newer research is available from legitimate sources, which anyone can find if they are interested. This practice is not.
From here on, there will be a quiz presented to a prospective doctor. Here are some of the questions. I know the answers to these questions, and if the doctor does not, he or she cannot adequately treat the patient. I may think of more later.
- Are there symptoms other than pain?
- Where is the pain located?
- What is your view on sleep disorder as it relates to FM?
- What medications are generally used for this?
- What is new in research?
For the time being, I will remain on my current medication that is working quite well, and I will not add anything. Just because you go in with discomfort, does not mean they have to add another medication. I find it daunting to search for another physician, so I will bide my time in doing so. I will have to tell the current doctor that I am not taking the new prescription, and I will cancel the six-week appointment. When I feel up to it, I will find a rheumatologist who can oversee this whole thing. Not today. I have other things to do that are much more fun, and the sun is shining.