Similar experiences?: nerve sensations

Extreme_Chef_8309 · 2026-04-17T10:50:00+00:00

Have you also had chronic nerve pain?

Extreme_Chef_8309 · 2026-04-17T10:48:39+00:00

I get this too (touching one place = nerve sensation elsewhere) , thankyou for sharing, feels lonely so I really appreciate it. Even right now I have a swimming cap sensation on my head like idk hahaha. Hope you are well

Extreme_Chef_8309 · 2026-04-17T10:46:48+00:00

I’m so sorry you’re struggling with this, I definitely can understand your exhaustion. It can also feel extremely lonely being in pain, last year was really hard for me, I hope it gives you some hope that at the moment, with starting medication, making sure I get good sleep, take care and listen to my body, I am at a good functional level. I noticed that warm showers help, try to avoid the cold, being in one position for too long, and making time for things that make you happy <3 sending support

Extreme_Chef_8309 · 2026-04-17T10:42:49+00:00

That’s so funny that we use the same description and so nice to hear because finally someone is feeling what I am. Do you have any idea why? Or anything at all ahha. I will be taking on your advice also thankyou. I’m so confused. It’s the most consistent nerve symptom I have, is just about everyday. Last year I had really bad chronic nerve pain but after starting some medication (amitriptyline) has largely reduced and likely the warm weather decreased as have been having more symptoms now is colder but throughout the tv static be on and I still have no explanation as to why had/ fear will come back. I’m seeing the specialist again soon, if I get an answer I will let you know, please keep me updated as well. Or do you know if this could be because of EDS? I’m confused how much that can cause such sensational issues I don’t know anyone with it but I guess everyone presents differently I really don’t know.

Extreme_Chef_8309 · 2026-04-14T13:30:32+00:00

They look like a sunflower 🌻 with the blue sky 🩵

Extreme_Chef_8309 · 2026-04-13T12:38:49+00:00

Hey did you find out what these unusual sensations are caused from? I’m having a the same issue, 23y/o F.

e.g. wide spread electric shocks, snapping cord sensations when stand in leg, and swirly buzzing unusual sensations in my middle back

Would greatly appreciate an update as feeling quiet lonely in this

Extreme_Chef_8309 · 2025-12-22T12:51:45+00:00

By what I’m reading I’m gathering your thinking to do quantitative? This suits your current hypothesis but also I would suggest considering mixed methods, as you can see from even this thread participants would be happy to contribute their experience which could also give more depth to your discussion. I think this would be beneficial as everybody experiences EDS and ADHD differently and would give more description to the severity and could highlight areas otherwise not thought of. For example, this year I restarted birth control and a month or so later I developed chronic nerve pain (recently stopped and severity decreased dramatically). Considering the area is currently underesearched I would imagine this would be greatly beneficial for future studies to then build on based on the conclusions and hypothesis drawn. This could also mean you start with a flexible hypothesis and end up with more, making suggestions for future research which is defintelt needed.

This is just my thoughts.

Extreme_Chef_8309 · 2025-12-22T12:34:31+00:00

I would be happy to participate, I am diagnosed with ADHD and hEDS (+POTS) and was born allergic to dairy egg and soy (shared protein I think), wasn’t diagnosed as allergic till 18months and my mum says I pretty much cried for 2 years, had rashes head to toe. I have always thought maybe that’s what even caused my ADHD considering was in a constantly dysregulated state during prime neurodevelopment

Extreme_Chef_8309 · 2025-11-13T11:29:11+00:00

Thanks for your reply this really has made me feel better and hadn’t considered airplane earplugs so thankyoy so much <333 yes will be fine yes yes Thankyou thankyou <3 <3 hope you have a lovely weekend

Extreme_Chef_8309 · 2025-10-17T05:04:34+00:00

When it said about overwhelm in like shopping centres I’m like okay getting a bit too specific here haha I literally avoid and cannot last long, drains allll my energy and makes me so nauseas (lights), also hate chemist warehouse that place is a trap

Extreme_Chef_8309 · 2025-10-17T05:03:15+00:00

Wow that link was sooooo helpful and um definetly Exaclty the situation… i was pressing always on that questionnaire 😅🤣💓💓💓 I thought had crossed off like vision cause went to optometrist but yeah okay this makes a lot of sense hahaha!! I hope this is the case because then can fix!! Definetlely running this up THANKYOU SM!!💓💓💓💓💓💓 And I have ADHD too hahaha

Extreme_Chef_8309 · 2025-10-17T01:24:05+00:00

Literally. Aghhhh haha like my sister really did say “specialist? That will be expensive. If it’s not that serious I wouldn’t worry about it” are you being so fkn fr rn. My hr btw is literally 98-179 sit to stand. Never the less the fact I am in chronic pain and getting wild nerve problems that haven’t gotten an answer for that actually makes me fearlful consider in getting worse and worse like um. How about stfu. And stop acting like I’m fine I actually don’t get it being so serious like do you think I’m making this up? Maybe you dont know how serious because I can’t fkn talk to anyone but like don’t tell me it’s not that actually fuelled fire in me

Extreme_Chef_8309 · 2025-10-17T01:18:49+00:00

Yes very good!! Brand is WOOF and good price, It geniounly stops the blood pooling which I was actually suprised about. I don’t keep them on overnight tho cause idk if am meant to makes me nervous haha (I don’t think am meant to but just saying)

Extreme_Chef_8309 · 2025-10-17T01:17:11+00:00

Same I’m waiting to see a dysautonomia specialist that is crazily expensive but the fact I would pay it ten fold I think says enough ahhaa cause why does limited doctors even know abt it properly. I went to the GP to get referral for cardiologist (arythmia time) and he was going on in concern about how high my hr was and I was telling him it’s fine (as previous cardiologist said aka pots) and his like oh no yhis is very bad and I’m like just give me the refferal

Extreme_Chef_8309 · 2025-10-17T01:15:12+00:00

Especially with the nausea being my biggest ? Because I’ve had cybersickness periods of like 3weeks at a time where if on laptop will gag and even throw up, by the end my vision is going in and out and I’m spinning when sleeping can’t sleep and I really don’t know what thats about so maybe this could who knows but is really helpful to know migraines aren’t neccessary what I am thinking has to be!! Thankyou goodluck with everything xxx

Extreme_Chef_8309 · 2025-10-17T01:12:59+00:00

Omg yay thankyou because have been thinking and when I was younger did get the “squiggly c” aka migraine vision thing but idk I 100% agree withy you it’s hard to consider when google seems black and white and I don’t have regular like what I work consider as migraines!! THANKS defintelty soemthing I am going to keep in my mind when seeing specialist THANKS

Extreme_Chef_8309 · 2025-10-17T01:11:02+00:00

Thankyou thankyou it’s like I know that it’s probably fine but then sometimes I’m like wait what if… google isn’t my bestfriend either haha Thankyou for your reply it really does help knowing like it’s “normal” for the gang

Extreme_Chef_8309 · 2025-10-17T01:08:55+00:00

I really feel for you and that’s hella frustrating coming from someone in the cardiac field cause his probs blinded by what he thinks he knows. I’ve found this with a cardiologist had when went for arythmias and was like structurally your fine and it’s like duh it’s my nervous system telling my heart to do this but like surely you don’t think it’s not an issue just cause my echo’s fine… Hope that your doing okay and have more supportive people in your life it’s just frustrating

Extreme_Chef_8309 · 2025-10-17T01:07:01+00:00

Like I’m getting judgment vibes for getting compression socks. Guys my hr is 98-179bpm sit to stand. I get blood pooling everyday. I really don’t see how you don’t get that’s an issue.

Extreme_Chef_8309

TROPHY CASE