The definition of fibromyalgia is widespread pain, and associated maladies. The difficulty with fibromyalgia is its variance in presentation. Not every patient or person is the same, and many individuals present with different amplification of disorders. The muscular pain which is so common, may be the primary complaint, whereas some others may say that the memory disturbance is their toughest problem throughout the day. To this end, we take fibromyalgia as a disease entity for sure, and a definition of difficulty. That's what medicine has problems with. Medicine is a science, it's an art, and sometimes it doesn't know where to be either. That is why many that treat fibromyalgia, or see fibromyalgia (such as primary care) have trouble with this label. It is unfortunately a label.
Recently, I was at an event where an attorney and I were talking and he is primarily in the disability arena. He had some unfortunate impressions of fibromyalgia, and he did not know that I am a fibromyalgia advocate. I just let him talk. The vignette goes as such.
"You know, fibromyalgia is a bunch of bunk, right? I mean, seriously, who has this level of disability and the 'I cant's' with something you can't see. We have a lot of trouble with fibromyalgia because everybody wants disability." Well, that's not true. Most fibromyalgia patients or people that suffer from fibromyalgia want nothing more than to be a 19 year old athlete that they once were. Also, they want to be that individual that is there, at work, for family, for church, for all aspects of life. Fibromyalgia is not a disease state that presents evenly, and therefore it can't be a medical diagnosis. Well, that's wrong too.
Fibromyalgia is a problem of perceptions. If perceptions were level, equal and obvious, we'd have had all of medicine figured out. Who hasn't suffered a headache? I could look at you, but I can't see it. That doesn't mean it isn't real. Who hasn't had the aches, and pains, and dysesthesias of neuropathy? You look normal. You have neuropathy, you have burning feet, burning hands, or other, but you look okay. Who hasn't had back ache that basically wants to put them in the bed? Well, you look normal. Don't act normal, but you're telling me you've got something that keeps you from doing what you want to do. That's the question mark with fibromyalgia. Why isn't it an accepted entity, and there may be some answers here.
Answer number one. Fibromyalgia is poorly understood, because it is not researched. We have some functional MRIs, we have some other information that fibromyalgia is real, and some data that goes back many years that shows certain treatments are very effective (ketamine), that show that fibromyalgia basically can be treated. Unfortunately, we live in a world of an opioid problem, although not patient centric. The opioid problem is fentanyl and heroin, it is not pain medication. Problem number two. Opioids are not recommended in fibromyalgia. Not recommended by who? I mentioned that there's very little research in fibromyalgia. A treatment paradigm that excludes something for relief, the most common problem reported to a physician, pain, should be available. It is not the opioid, it is the vigilance with the opioid, it's prescription, habitry, and the providers' familiarity. It is not the patient's problem. It won't be a problem if there is vigilance.
Number three. Fibromyalgia is associated with the fibral five. Irritable bowel, chronic fatigue, muscle pain, headache, and interstitial cystitis. They are all inter-related. Fibromyalgia is a central nervous system problem, functional MRIs have demonstrated this, the evidence could be more robust, but it's there. Next number. Fibromyalgia is primarily female. This is the sexist part. It doesn't matter if it's male or female that have problems, it matters that it is a disease state. Men don't have problems with reproductive organs as women do, and vice versa. Men don't have problems with breast health like women do (although they do have some), and men don't have problems with other organ systems. That does not mean that we should ignore fibromyalgia as a problem that should be ignored, simply because you cannot see, touch, feel or measure it, and it is primarily female. To underscore this, a provider should not see fibromyalgia patients if they do not believe in it. If you think it's entirely psychosomatic, refer it out. That's rule number three.
We are going to continue to development our fibromyalgia story, and it's going to be primarily medically related, but I will certainly entertain alternative theories. I will not run down a rabbit hole where the science is sketchy, or does not exist, or the fallacy of false generalization exists for the convenience of a diagnosis or to publish a paper. The methodology is key, and when a paper is published, or a hypothesis is developed, it has to be sound. Most are not.
All right. Let's get started.