I wrote this post from my phone app. I can’t get up. Dysautonomia isn’t known for verticality, but it is known for coat-hangar pain. Coat hanger pain is neck and shoulder pain that mimics a coat hanger in shape.
My current back pain is much worse than the coat hanger pain I’m used to. I often pull or twist something in my sleep, but this pain is on another level entirely. I couldn’t move even if I wanted to tough it out. I was too embarrassed to tell HR that I “threw my back out” when I called. I may be an older millennial, but I’m still a millennial! I’m too young for this?
I’m researching what it means to “throw my back out” to determine if that’s even an accurate statement. I’ve been in enough coat hanger pain to believe I couldn’t move, but I could theoretically have passed the “flee a fire test.” Not today…
My boss is uncomfortable with personal details – even details as innocuous as that I asked off for the long weekend to attend my partner’s cousin’s wedding – and I know he won’t ask. Others might, and I might be too embarrassed to tell. I’m supposed to leave for that wedding tomorrow. Will I be able to get on the plane? Thank heavens we booked Southwest. If we end up not being able to go, at least we can cancel and still use the credit later.
The cause of my predicament was a nightmare. Literally, a nightmare. I managed to twist during one and hurt my back. Talk about adding injury to insult.
I initially self-diagnosed dysautonomia. I trusted myself because there were clear clinical criteria that I could reliably demonstrate. I fear not being believed, and being seen as a hypochondriac instead of someone who follows the scientific method is re-triggering. The expected outcome must be worth a lot to push back with doctors. There must be a preponderance of evidence for whatever I’m bringing up.
I pushed – and was ultimately vindicated – for the dysautonomia diagnosis. I haven’t pushed for any other testing because no other symptoms have met my personal standards of evidence for additional diagnoses or treatments sufficiently to be worth risking my hard-won street cred with my doctors.
I’ve read a couple of posts recently in which bloggers with dysautonomia have been referred for genetic tests for Ehlers-Danlos. I’m able to do most of the random things their doctors have mentioned as potential signs (e.g. tuck my toes into my armpits while standing, suffer TMJ, bruise easily, Flying Bird hand sign and Reverse Namaskar.) However, there are diagnostic criteria for EDS that I don’t currently meet. I am a 4/9 on the Beighton Scale. Further testing for EDS or the related symptomatic hypermobility spectrum disorders are usually indicated at 5+/9.
My rheumatologist administered it at our visit. I used to be a 5/9. For most of my life I could additionally forward fold to touch palms to the floor in yoga. He wrote “benign joint hypermobility” on my chart and said there was no need for further assessment because I wasn’t 5+/9 currently. I wondered about that later, since my brief reading of the criteria seemed to indicate that historical mobility counted. I’ve been curious about whether he should have recommended testing – especially after seeing others recommended for similar levels of hypermobility – but it has been purely intellectual curiosity. (I’ve also wondered why others have received iron transfusions for low ferritin levels that I display every time I run out of iron pills/my ADHD brain forgets to buy more, while I am told that I should just keep taking pills. Stylistic differences among doctors, I suppose. I’ve been taking iron pills for years, I suppose I can keep doing it ad infinitum. The idea of transfusions building a bit of a ferritin reserve and/or me ever achieving a ferritin level above 20 leaves me wistful, though.)
That rheumatologist was a dismissive jerk. I’d enjoy knowing he missed something in the technical criteria for assessing hypermobility that could be contributing to my dysautonomia and/or chronic pain just for Schadenfreude, but it hasn’t seemed truly important. While I regularly sprain joints, a) they don’t fully dislocate and b) that has always been the case for me. My personal hypermobility hasn’t seemed to have gotten worse as the dysautonomia has progressed. I’ve tended to treat those data points as reasons to assume the hypermobility the rheumatologist noted truly is benign.
I’m mildly doubting myself for not exploring further as I lie here trying to figure out what that twisting/popping sound was that woke me from the nightmare. I also really don’t want to deal with doctors dismissing me if I inquire now.
I’ve been through so many tests already, and the rheumatologist said there was nothing wrong with my musculoskeletal system. I can’t move at all right now, but going to the doctor and potentially opening a can of worms only months after my official dysautonomia diagnosis seems liable to trigger more of the nightmares (and thus more injury?) I’m also, as is anecdotally more common in people with dysautonomia per my doctor, not very responsive to prescription pain killers. Pills alone aren’t meaningful enough as a motivation for me to go to a doctor and explain I hurt myself during a nightmare.
I’d go if I could be sure my injury would be taken seriously. It seems instead like the recommended treatment for a “thrown back” will simply be “take something for three days for the pain and call me if the sprain doesn’t go down.” Not sure that’s worth it.
My nightmare was about a situation in which I lacked choice. I guess it’s only fitting that I may be making the counterproductive choice to avoid calling my doctor about my back injury partly because of its lingering echoes. PTSD dictates my choices even as it never lets me forget when I didn’t have them. PTSD is a pain in the neck!