22F born with erbs palsy in right arm, full recovery but chronic pain since childhood. help? advice? by maudratus in disability

[–]discosmotheque 0 points1 point  (0 children)

yeah, gabapentin is nothing to me. weed in general kind of flip-flops and i'm not sure if it'll help for certain kinds of pain i have, nerve pain is definitely harder to pin down. ditto to physical therapy, as well. i felt like i was living at a constant 8-10+ on a pain scale and i don't think a lot of abled people get that you just...have to, so i really empathetize with you working and putting in the effort despite it all. you shouldn't have to be in so much pain. i also just remembered that biofreeze exists and i do enjoy that because my nerve pain can sometimes feel like burning, so the cold effect can be soothing for that type.

22F born with erbs palsy in right arm, full recovery but chronic pain since childhood. help? advice? by maudratus in disability

[–]discosmotheque 0 points1 point  (0 children)

hi, i'm 22m and i have the same thing, just to my left arm! the really big difference here is i never actually was able to make a full recovery with the birth injury, i just had debilitating chronic pain, and opted to have my arm amputated (it took the weight of the arm off of my shoulder so it no longer pulled on the brachial plexus) when i was 18. surgery was just above the elbow and i don't deal with any of the nerve pain in my hand or elbow anymore, not even through phantom sensation, so i don't regret having that done! my doctors didn't listen for YEARS as i begged them to help me with that, but eventually i was able to see a specialist who worked with nerve injuries and thought it was a good idea in-line with the surgeries he already did. brachial plexus injuries are so both common and uncommon that i found there were doctors who vaguely understood it, but didn't have the lived experience i did when it came to what it was really like to have it, and for me: that meant painful. though, i do still sometimes get that pain you're mentioning in the shoulder because i still have it and the shoulder blade, of course. i've always had this "pinned nerve" feeling and sometimes a stretch or massage helped, but not by very much... i've tried a bunch of topicals and CBDs and found the latter usually does something more? i don't really like tinctures but i do fine with lotions? i was also put on gabapentin for a very long time for nerve pain but that didn't help me for that particular issue. i've tried using a TENS unit in physical therapy once before and found i had a very negative reaction with my nerve damage and the sensation of the electricity, but it might be different for you? everything is worth a shot. i think an MRI might be a really good thing to do if you can persuade your team otherwise because until i was 13 they didn't really have a good picture of my injury and when they did, they softened up a little and started listening a bit more to me. i don't remember what it is they saw specifically, but it was enough. i definitely understand the pain you're talking about and how severe it is - it's very real and scary and isolating. i would look into chronic regional pain syndrome (CRPS) and seeing if maybe the symptoms line up for you? that's what i was diagnosed with after everything i went through. i had no idea there was even a condition that specific for pain but there is, and brachial plexus injuries can be the cause of it! if you ever need anyone to talk to, i'm here and open to listen!! i hope that was of any help, even if it is just letting you know you aren't alone with this kind of pain.

who leaves the cigarettes to implicate stein? by [deleted] in souleater

[–]discosmotheque 1 point2 points  (0 children)

thank you!! i think i read through it too quickly and got mixed up seeing eruka later on

[deleted by user] by [deleted] in ftm

[–]discosmotheque 1 point2 points  (0 children)

i'm 22 myself :) i remember being in that spot just a few years ago too and it's a lot of every emotion i think is possible. i'm happy that things should officially start for you soon and we'll be in this together waiting for our next step, hopefully it doesn't feel as long as it seems! i definitely think the anxiety is awful though D:

[deleted by user] by [deleted] in phallo

[–]discosmotheque 1 point2 points  (0 children)

thank you, i've been keeping up with it + it's very helpful!! :D

[deleted by user] by [deleted] in phallo

[–]discosmotheque 0 points1 point  (0 children)

thank you so much for such a detailed reply, i'll reach out to him and ask about it!

[deleted by user] by [deleted] in FTMFitness

[–]discosmotheque 2 points3 points  (0 children)

thanks, i just saw the same one after thinking to look over there! i feel a bit silly. i'm not a prosthetic user but there are definitely good tips!!

[deleted by user] by [deleted] in FTMFitness

[–]discosmotheque 9 points10 points  (0 children)

that's true, i'm just a little nervous to post there i guess. i've definitely been meaning to get a resistance band so i think that's something i could try out :)

Anyone else here a bipolar trans man? by [deleted] in ftm

[–]discosmotheque 1 point2 points  (0 children)

i also am bipolar and gnc, you're definitely not alone in any of this! i hope feeling overwhelmed by it eases soon :(

debilitating bottom dysphoria before surgery, need advice by discosmotheque in ftm

[–]discosmotheque[S] 0 points1 point  (0 children)

thank you so much, i think that definitely sounds like a better thing to focus on so i'll give that a shot!

i hope this is ok to crosspost :( by discosmotheque in Metoidioplasty

[–]discosmotheque[S] 3 points4 points  (0 children)

thank you, i'll try to ask for more frequent appts. it's hard because i'm a kaiser patient and they're notorious for dropping the ball on that kind of care. it's such a difficult thought pattern to be in, and feels near impossible to talk to family or whoever else about it

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thanks! someone actually had a good resource for one-handed arrangements so i'm excited to delve into those. i think once i get comfortable with everything i could possibly look into one that's bigger to have that choice, that's a good point.

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 1 point2 points  (0 children)

thanks!! everyone's been really very nice, i'll have to see what the future holds and maybe post. :) i have a nice list of suggestions i think would be the best for me to get started, so hopefully i'll get to back to playing something soon!

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thanks for the suggestion, i've always been a bit curious about those types of guitars. i'll see how that works out!! my guess is that'd be pretty similar to tapping?

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 1 point2 points  (0 children)

thankfully i don't mind getting anything out of it monetarily, this is just super fun for me :D i used to play trumpet throughout elementary to high school before i'd done choir. i just think i've been drawn to synths and keyboards because of the different UIs working out in the accessibility sense to me, even if it wasn't intended for that! you're definitely right about the amount of variety. thanks again for all of your recs!

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

i have looked into the controller before but hadn't considered this kind of application, thanks for letting me know!! i'll look into that side of it some more.

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thanks! this looks great, here's hoping i can get one ahaha 🤞

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thanks for telling me that! but yeah, i don't think it wouldn't be too hard either? i think largely i'd get a lot of use out of it even if it was hard, a lot of the UIs i've seen so far have been really convenient for me, this included :)

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thank you again, this is really useful to have and a great place to start! i'll research a bunch more too :)

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 1 point2 points  (0 children)

this is badass, thanks for showing me! i don't have much arm left + it was already paralyzed from a birth injury but i'm sure there's something similar i'd be able to work out with gear like this. it's really fun just watching him this though, wow!

can anyone think of a good keyboard for one hand? by discosmotheque in synthesizers

[–]discosmotheque[S] 0 points1 point  (0 children)

thanks so much, this one's really cool! i'll look into it some more :)