Note: This post isn’t about RA, but rather fibromyalgia. I don’t have it, but I know people who do. I’m curious about it.
I read a lot of medblogs out of curiosity and because I like to learn and enjoy expanding my knowledge and understanding. Some of these blogs are written by
doctors of various disciplines (emergency, surgery, general practice, etc.), nurses and paramedics; others are written by patients.
Some of the patient bloggers have been diagnosed, presumably by competent, caring doctors, with fibromyalgia. They write about the condition and how it affects them. And they express frustration over the fact that so far, no one has been able to pinpoint what causes it, mainly because it presents with no measurable physical evidence.
Nothing shows. Tests come back normal.
On its website, the venerable and respected Mayo Clinic describes fibromyalgia as “a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.” To be diagnosed with fibro, a patient must experience pain in 11 of 18 trigger/tender spots on the body during a clinical exam and have experienced widespread pain for three months or longer. Studies have shown that people with fibromyalgia have somehow undergone changes in their brains that alter the way they perceive pain. They experience pain differently from those without the condition. The cause of fibromyalgia is unknown, but it might be linked to viruses, injury or emotional distress. Studies into the condition continue.
Many fibromyalgia patients take medications available only by prescription, such as gabapentin and Lyrica, to treat their pain. Gabapentin is an anti-seizure drug that, coincidentally, can be effective at relieving nerve pain. Lyrica, made by Pfizer, is the only FDA approved drug made specifically to treat fibro pain, and it’s relatively new. It’s also an anti-siezure medication that works specifically in the brain to change the perception of pain. It’s not an anti-depressive.
Almost all of the bloggers who write about their battle with fibro also write about their anger when their pain is casually minimized and dismissed by some doctors and other medical caregivers.
Many of them have been told “It’s all in your head,” They’re told they’re depressed or unhappy, and the pain is a result. “Think happy thoughts.”
It’s fairly easy to see why fibro is linked to depression; being in chronic, debilitating pain with no way to relieve it, and having to face doctors and nurses who don’t believe you has to be depressing. Really.
Many of the medical bloggers I’ve read express frank contempt for patients who have a diagnosis of fibro or claim to suffer from the condition. Sometimes their comments are mocking and quite cruel. Because they deal with so many people in their ERs and offices who fake pain (for a myriad of reasons), and because the pain and fatigue of fibromyalgia is a medical mystery, they don’t believe their patients. They see them as drug-and/or-attention seekers, or dismiss them as having psychological and/or psychosomatic illness.
My sister, who’s a respiratory therapist (and very nice person in most other aspects of her life), is derisive and unsympathetic toward people who claim to have fibromyalgia (although not to their faces in a hospital setting). In her opinion and from her experience, they’re all frauds.
According to MotherNature.com, “Fibromyalgia affects somewhere from three to six million Americans, 80 percent of them women.”
Surely , all of these people can’t be frauds. While I know that there are some people who fake illnesses for any number of reasons, the idea that three to six million individual patients would go to the considerable trouble of faking fibromyalgia is more unbelievable than the condition itself, as far as I’m concerned.
So what is it?
Is fibromyalgia real or not? If it’s real (and the Mayo Clinic and Pfizer seem to think it is), then why do so many people in the medical professions, from physicians to nurses to paramedics to respiratory therapists, believe it isn’t? Why would medical scientists and researchers give it a name and symptoms if it wasn’t real? Why would they risk their reputations on it?
My husband has been diagnosed with fibromyalgia, along with degenerative disk disease and osteoarthritis. The combination has disabled him; he was forced to retire at the age of 49 and is now on Social Security disability. He is frequently in pain and has, over the years, taken any number of painkilling medications, including narcotic meds and gabapentin. He weaned himself off the narcotic meds because he disliked being foggy and sleepy all the time; today he takes a low dose of tramadol in their place. And like many others who suffer with fibro, he’s been dismissed by some doctors who tell him “it’s all in your head.” Is he depressed? Sometimes, yes. Who wouldn’t be?
I think that people do sometimes have real pain and other symptoms that simply can’t be explained by modern medicine as it exists today. Perhaps “fibromyalgia” is actually a convenient catch-all word doctors use when they really mean “I don’t have a freaking clue what’s causing your symptoms.”
And if that’s the case, they shouldn’t be so quick to condemn patients who present with inexplicable pain.