5 ms·
The light searching I've been doing since my last comment had indeed been leading me in that direction. I even came across a mention of this here on HN from a f
by krono 4y ago
The light searching I've been doing since my last comment had indeed been leading me in that direction. I even came across a mention of this here on HN from a few months ago[1]. A sibling comment to yours also suggested a hormonal imbalance as a possible cause which can't hurt getting myself checked for.
Some anacdata: This strange temperature dysregulation feels somewhat similar to what a too high dosage of my ADHD meds does to me.
Anyway thanks for your comment. I'll be seeing a doctor about this for sure.
[1]: https://news.ycombinator.com/item?id=31512100 https://news.ycombinator.com/item?id=31512100
- cjbgkagh 4y agoDoctors are not great at managing dysautonomia if they even know what it is. It’s a niche area. You’ll probably have to DIY research on it and ask for the meds you want. Yup, ADHD medicine will activate the sympathetic nervous system and too much of that will cause dysautonomia. If you have LongCovid and ADHD it’s reasonably likely you’re also hypermobile and have a condition called hypermobile Ehlers Danlos Syndrome (hEDS). It runs in families on an autosomal dominant basis. Doctors rarely know anything about hEDS either. The normals tests done by those that do have a 90% false negative rate.
- krono 4y agoI was actually tested for hEDS (amongst other things) in the past because my knees can do some funny tricks and I had some pain there. Turned out not to be EDS but instead the problem was caused by the kneecaps not tracking well - that was easily fixed by exercises. You know your stuff well!
- cjbgkagh 4y agoThanks, in case you missed it though, 90% false negative means you could have received a negative on your test but it can easily be false. The normal tests are almost worthless, especially for men where testosterone helps a lot and reduces flexibility. People with hEDS also often have T4 -> T3 conversion problems and can benefit from supplemental T3. Endocrinologist tend not to know this which is strange because it’s kind of their job so it’s yet another thing you’ll have to figure out yourself. The proper way to check for hEDS is by using to rare comorbitities which co-occur in families with hEDS at a vastly higher rate, i.e. it’ll be almost impossible for a family to have this many seemingly independent things wrong with them by chance without a common hEDS cause. See https://ohtwist.com/about-eds/comorbidities https://ohtwist.com/about-eds/comorbidities for an extensive but by no means exhaustive list. One of the things not on the list is general and local anesthesia resistance. Dentists will not believe that you’re still in pain after using 2x the dose, or you make wake up under general.
- krono 4y agoLate response, apologies. Saw the doctor today and brought this all to him. He has opened cases with and referred me to two specialists: one for the potential long covid symptoms, and one who will be taking another and more thorough look at the hypermobility and associated symptoms. This information would have never reached me in such an actionable format if it weren't for your detailed comments. Thank you, I really appreciate it!
- cjbgkagh 4y agoMy pleasure, it’s a bit of a hobby for me. I hope you manage to find your answers.
- mecha_ghidorah 4y agoI should really get tested for that. I have ADHD and my fingers can do weird crap and I have had 2 suffers and 1 person who has a similar condition tell me I should get checked for it... I just feel weird saying "hey doctor some people told me I might have weird bendy disease, can I have a specialist referral". Without any actual complaints I feel silly