After receiving a diagnosis of fibromyalgia in 2009, I accepted it as well as the repeated professional opinions that nothing could be done to address the situation. Huh, I’ve got a condition and the only advice I get is to deal with it. When fibro was googled, I found many check lists of symptoms, which aided me in proceessing that these many, diverse signs combine to construct the picture of fibromyalgia vs a constellation of random, disparate experiencees.
For more than a decade, this was it. Upon meeting a new doctor, I’d list fibro as a previous condition. Most doctors gave it a nod, “Fibromyalgia, that’s no fun.” I would agree and indicate I had no plan to treat any part. The doctors agreed, noting how tough it is to address.
Fast forward to this year. Though previously ignoring fibro videos online, I decided to check out a couple. In the past, I skipped them because I already knew it all, right? I had it, needed to cope, and best to simply accept, attempting to ease symptoms as they arose. When I saw videos from ‘UCTV Mini Medical School – Fibromyalgia’ (See post Mini Medical School) and ‘David Ruthermore – Cutting through the bs Fibromyalgia,’ I decided to give them a try. Imagine how surprised I was to realize medical research has continued and progressed so much over the last decade.
So, learning new things: Fibromyalgia has been thoroughly studied and medical findings are clear. At some point, in most patients’ history, the fight, flight, or freeze response was triggered by childhood/young teen trauma, either physical or emotional. The amygdala kicks in the most basic of all human survival instincts, begins pumping out stress hormones in reaction to the serious threat, but it doesn’t get the message later to call them off when the threat ceases. Sometime following, those hormones have been flooding the whole organism long enough to wreak a little havoc. The body shows signs of distress but the diagnoses of a variety of seemingly unrelated symptoms begins sporadically, each one a domino added to the line. Fibromyalgia has begun and the patient has started a long, tortuous journey, searching to make sense of what’s happening once they see the dominoes set closer and closer. If you’re not lucky enough to stumble across a medical provider knowledgeable about fibro and willing to address it, those dominoes all fall down. Daily life with work and family gets complicated and debilitating.
The first steps to putting even one domino away involve quieting the stress hormones. Long-term heightened unnecessary release of adrenaline, testosterone, cortisol and more leads to a wide variety of issues in systems of the body: Neurology, thyroid, bad gut, immune, dermatological, etc, all are affected. A major problem is peripheral small-tissue neuropathy. The coating that protects the pain nerves dies off as a result of the sustained onslaught by the body’s survival mode. Pain nerves become less able to differentiate and the system is on overload. Traffic jams compromise nervous system communication, hindering the synapses’ ability to send clear messages effectively.
How to stop the inordinate amount of threat stress spewed by the amygdala? Strategies include aromatherapy, yoga, therapy, meditation. Repeating the phrase, “There is no threat. No need for fight, flight, or freeze,” has been my first effort. I’ve been able to physically feel stress in the area of my diaphragm for more than a decade, near the adrenal glands. I knew it was stress I held tight between my lower ribs but no idea why. I am feeling a gradual loosening of the knot of nerves, and I’m still talking myself off nonexistent ledges.
Other recommendations involve explaining to your medical provider why you need to have a particular blood test conducted, although it’s outside the regular complete blood count tests. It’s obvious to me now that long-term easing of symptoms, maybe even eliminating a few completely, requires the patient advocating for themselves. This includes education, adopting proven strategies, requesting specific testing or other assistance of physicians, which may require convincing your insurance company to cover it. Apparently, many general practitioners are reluctant to get into the thick of it. They certainly haven’t offered me anything in the way of treating symptoms or the source.
I’m not a doctor, physician, or provider of medical services or advice. I am a complete novice, newly beginning my own journey to find a way to cope, to live with fibromyalgia. Reading that last part of the paragraph immediately preceding, about advocating for yourself, makes me feel overwhelmed. This is why I’ve started with repeating one thought. “There is no threat. No need for flight, fight, or freeze.” That’s what I can handle right now. Being fully present, mindful of where I am and what’s around me, is a habit I have yet to adopt. I am trying, but it’s not my main perspective, or even frequent. Onward.
I do have an annual physical exam coming up. I’ve written previously about my doctor who listens to me describe what’s happening, and provides a menu of options. She asks me what I want to do about it, and every time I feel like a deer in the headlights. This time, however, I will be prepared to ask for a specific thyroid test I want that is not included on the usual run. Look at that! My doc supports me in advocating for myself and I didn’t even know it.
I may have written much of this before; it sounds familiar! After more than two years, I’m forgetting exactly what I’ve penned previously, not to mention my fuzzy memory and cognitive function. Earlier, I did check a couple times to confirm or deny an inkling that I may have posted quite a similar expression previously or used a title more than once. Now, though, advocating for my reduction in stress, I’m not going to give a flying fig.
SurvivingSara 