Diagnosis: Medical Mystery
Monday, 27 October 2025 12:59 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
crashmarguliesA new and exciting (/sarcastic) chronic illness milestone has been reached: a medical professional has finally admitted to me that they don't know why I am (this severely/this flavor of) sick.
I have a diagnosis of Hypermobility Spectrum Disorder, but that does not explain all my pain or my fatigue. I display symptoms of dysautonomia (i.e. POTS), but my autonomic function tests have come back normal. I have chronic fatigue that doesn't seem to logically come from any of my current conditions (HSD, depression, anxiety [possibly OCD flavored], C-PTSD, migraines).
The next steps from today's doctor visit include more blood tests thatwill likely come back normal have already come back normal, a follow-up with the autonomic specialist that reviewed my test results from earlier in the fall, a test for neuropathy (but only one kind--another type notably does not show up on this screening method), and some small migraine medication adjustments.
The neuropathy test, an EMG, was able to be scheduled for next week. It apparently involves sending shocks down my nerves and sticking needles in my muscles, but like I tolddawnsupernova, that doesn't sound too different from the experience of neuropathy(?) I'm already having.
The follow-up with the autonomic specialist isn't until December, unfortunately, so once again the medical timeline unspools into weeks and months as I struggle with my daily living.
Today was also the first time I was suggested physical therapy with an emphasis on deconditioning, but because of NIBF's ME/CFS + Long COVID, and because of my familiarity with my own symptoms and body, I know that this will likely only trigger post-exertional malaise (PEM) and possibly worsen my baseline fatigue and pain. I'm not sure how I'm going to explain this to a medical professional who may be unfamiliar with it and be taken seriously. But there's no way for me to tolerate a frequent PT schedule when something like a leisure sit-down with NIBF once a month is too much for me to handle.
A positive from today's appointment: the nurse(? technician?) who checked me in and then came back to take my blood work left to put on a mask when they saw Dawn and I were wearing respirators. A surgical mask, but still more effort than most people make, including the neurology physicians' assistant I was actually there to see.
So, now more tests, and more appointments; and I continue navigating intense brain fog, body pain, and fatigue while we search (in ways that feel increasingly half-hearted) for some answers.
I have a diagnosis of Hypermobility Spectrum Disorder, but that does not explain all my pain or my fatigue. I display symptoms of dysautonomia (i.e. POTS), but my autonomic function tests have come back normal. I have chronic fatigue that doesn't seem to logically come from any of my current conditions (HSD, depression, anxiety [possibly OCD flavored], C-PTSD, migraines).
The next steps from today's doctor visit include more blood tests that
The neuropathy test, an EMG, was able to be scheduled for next week. It apparently involves sending shocks down my nerves and sticking needles in my muscles, but like I told
dawnsupernova, that doesn't sound too different from the experience of neuropathy(?) I'm already having. The follow-up with the autonomic specialist isn't until December, unfortunately, so once again the medical timeline unspools into weeks and months as I struggle with my daily living.
Today was also the first time I was suggested physical therapy with an emphasis on deconditioning, but because of NIBF's ME/CFS + Long COVID, and because of my familiarity with my own symptoms and body, I know that this will likely only trigger post-exertional malaise (PEM) and possibly worsen my baseline fatigue and pain. I'm not sure how I'm going to explain this to a medical professional who may be unfamiliar with it and be taken seriously. But there's no way for me to tolerate a frequent PT schedule when something like a leisure sit-down with NIBF once a month is too much for me to handle.
A positive from today's appointment: the nurse(? technician?) who checked me in and then came back to take my blood work left to put on a mask when they saw Dawn and I were wearing respirators. A surgical mask, but still more effort than most people make, including the neurology physicians' assistant I was actually there to see.
So, now more tests, and more appointments; and I continue navigating intense brain fog, body pain, and fatigue while we search (in ways that feel increasingly half-hearted) for some answers.
