u/Feeling-Gap1578

I've had a lot of them this week personally despite heading shortly into my 2nd ER trip in 24 hours and my 5th within the last ehhh 1.5 months.

So I wanna hear what yours are! Nothing too small to count.

Here's a couple of mine to get started:

* Did a lot of things partially and imperfectly

* Acquired and started using supplies for my current mild incontinence

* Did better at recognizing symptom flares when they started up, and downshifting accordingly to avoid a major full spiral

* Took the trash all the way out not once but twice!

So what's your "little win" of the week? :)

Long story short, I have a massive constellation of symptoms, from chronic widespread essentially head-to-toe pain to significant joint instability, likely circulation issues, and severe heat intolerance.

After much chewing, research, and cataloging, I've determined the most likely culprits to investigate first are:

1.) New and worsening spinal disorder stuff (I have 2 known herniated C-spine discs with severe spinal cord compression etc., chronic upper back pain, and new/worsening lower back pain.)

2.) Some form of dysautonomia.

3.) Some form of connective tissue disease.

4.) Possibly an autoimmune and/or inflammatory arthritis condition.

Treating my constellation of issues as possibly/likely the result of a handful of systemic issues rather than a bunch of random isolated issues has been a game-changer!

Obviously not self-diagnosing anything - but after three recent ER visits, and prev follow-up with a sports med doctor, two different ortho specialists, and a one-off with a neurologist, not to mention lots of PT, I feel like I'm finally getting things turned in the right direction.

My poor PCP on Mon has no idea what she's in for. 😂 She's gonna get a dissertation on almost all of my symptoms, when and how they occur, how frequently, and like 27 other minute details as well as a detailed evaluation of my current activity tolerance and what helps/hurts me so far.

I know it's still likely to be a long, uphill battle to get down to brass tacks and get the more definitive diagnoses, but considering I got a 92/100 on a The Dysautonomia Project assessment (which I will be sharing with my doc), and I wobble like a bowl full of jello when I walk, even with mobility aids... We should at least be able to discuss symptom management and how to make me a lil more functional while we chase down the nitty-gritty details.

(Shout-out goes to my therapist, though, for helping me start to unclog my severe chronic PTSD w/dissociative features. Bc some breakthrough on that helped make it possible to recognize and start addressing my long-neglected health issues.)