IamA 16 year old who doesn't feel pain AMA!

You listed a few injuries - fractured knees, missing nose, teeth removed - can you elaborate on how those happened?

Alright here goes, going to try to give a brief description of each injury - if you guys want more info about a specific one just let me know.

--editing--

Fractured knees - i broke my right knee playing soccer when I was lottle, that took some time to heal but it did. My left knee is much, much, more severe. Basically when I was 8 I jumped into a 3 feet jacuzzi...that was empty. Now you see efen though that was a retarded thing to do if I were a normal child the knee would've healed withing a month or two. But nope I kept running on it even with a cast cause it didn't hurt, mow I have something called charcot joint which basically means my knee is fucked for life http://imgur.com/s1AHxSs <--- (im a hairy ass 16 year old i know)

notice how my right knee is significantly bigger than the left? that's a charcot joint.

Nose : Ah the worst part of this all, started scratching at my nost as a 5 year old, progressively got worse over the years till my nose was literally hanging off to the side, then one day I swear I woke up went down to wash my face and it fell off... Idk it was some weird compulsive behaviour that I couldn't stop myself from doing

Teeth : similar story, I think my teeth and the surrounding structures were already inherently weak, as I had a few removed prematurely as a toddler, but As I approached puberty it got worse as I started scratching at my teeth and gums...eventually to the point where they would get infected and had to be removed.

It's worth mentioning that I didn't have them removed all at once.

Were your parents not around to tell you not to do that? Like did no one keep you safe?

Right I get that a lot, believe me my parents are the absolute best and very supportive, my mom would fucking yell at me every time she caught me scratching my face, sometimes even slapping me

but that didn't hurt xD

also the nose injury was over the span of a couple years of like scratching my nose for a bit before going to bed or whatever

I even went to a psychologist a few times for that it helped a git but not much

So, clearly there are downsides, this isn't something I'd ever wish to have, but has this every impacted you positively? Like, do you ever fall or something and not get seriously injured and just be like, "Fuck yeah, didn't even feel it," or is it always scary, worrying that you broke something?

It's very rare for me to think positively about my condition, tbh. The thing is though, I"m pretty sure I've been in hundreds of situations that are extremely painful for others, but not so much for me. Like a hard fall. But I don't exactly realize it at the time so I guess I kind of take it for granted.

But hey no paper cuts ever! Sons of bitches paper cuts

He still gets them...

But he does not feel them! A critical portion of their power

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The cut happened but it didn't hurt

If you don't feel temperature, does your body sweat the same regardless of how hot the weather/room temp is?

I'm actually kind of lucky in the temperature/heat department, I know a lot of people with my condition who could probably walk through hell and not feel a thing. Those kids haveto wear special cooling vests because they DO NOT sweat. I'm in the minority and thankfully I do sweat and feel some temperature, but I have burned my tongue/lip a few times when I was younger cause of hot food.

do you taste the "heat" from hot sauce?

Yes, but about half the heat of what you would feel.

So do you feel if something is cold? Like ice cream or ice water?

Yea, even though I do feel hot/cold to an extent I have no problem going full naked in 50 degree weather

Does this mean you can wear shorts and a t-shirt in the snow (disregarding frostbite, which I assume you can still get) and be not feel cold?

I would feel cold but wouldn't really care. It's didfixult to explain.

Have you ever felt "physical" pain from grieving or a heartbreak?

Yeah such as that weird feeling in your stomach/chest you get after extended periods of crying. I know what it is but barely feel it.

Do you feel pleasure? Like a massage or a high feeling from pain meds? Do you even get pain meds? Like when you got your teeth pulled?

When I got my teeth pulled they put me under general anasthesia so I didn't feel a thing.

And yes I feel pleasure xD

I do not take pain meds often but on rare occasions when shit hits the fan in terms of a really big injury that is left untreated due to me not realizing it..and the injury just progressively getting worse.

Have you had any damage to your eyes? I've heard people with conditions like yours can really damage their eyes on accident especially as a child.

Well shit, forgot to mention that I'm legally blind/50% blind in both eyes cause I kept scratching them as a kid and now my cornea is all messed up

so how do you make sure your body is not hurt if you dont feel pain?

Sometimes it's pretty obvious if there's a big wound or a lot of blood, thankfully I feel some pain depending on the body part/injury type but it's difficult to guage whether I'm actually injured or not in a lot of situations

Were you unable to play high school sports due to this? When were you "diagnosed" with having this, and not just being a really tough toddler?

Going into my senior year of High School next month, nope, haven't played HS sports competitively.

Basically in 9th grade they sent out the forms that you had to get signed by your doctor before being sble to compete, that form can only be signed following the completion of a physical examination. Which I knew for a fact that I would fail, so I didn't really bother.

The thing is - I'm actually REASONABLY active {or ar least trying to be} so I could probavly play, but I'd probBly get hurt within 10 games or less lol

I was a very tough toddler indeed, always running around and doing crazy shit

How did the nose injury occur? HSAN or no HSAN think that's hard to miss.

More importantly, when were you diagnosed? And what preventive measures to you do to prevent serious injury? I imagine like monthly doctors visits and x-rays or something of the like.

Answered above.

I was diagnosed at the age of 2, with a misdiagnosis of riley day syndrome, a similar condition that is predominantly found in Ashkenazi Jews.

When did you figure out you were different? You must have been a terrifying toddler.

For As long as I can remember I alwaysknew that I had a condition that would impact my life. I've been in and out of the hospital since I was very young. Also about the time 8 got into the third grade and started doing OT classes and getting my own Individualized education plan{IEP} when I started getting angsty at the fact that I was different from my peers.

Are you able to masturbat or have sex? Is there much sensation?

idk does fapping hurt?

It can if you do it too much. Also if you go dry it can tear.

this reminds me of the time when my penis started bleeding after I wanked too hard..

It was a small cut though

Does the lack of pain extend to cardio? Like could you be a really good distance runner or swimmer, because you can just ignore the discomfort?

No one nose

I recently got into swimming, my Doctor says it's the best sport for me since it's kinda hard to get injured doing laps in a pool

my endurance/form sucks though, I'll get back to you in a few months when hopefully I can swim decently.

Does it affect your voice?

yeah for the past few years I've sounded weird cause of the lack of teeth..I actually get massive amount of shit for it in online video games, but that is a different story

Do you ever wish you were able to feel pain?

That's my one wish in life lol

what's the difference between HSAN and CIPA? how did they know you had one not the other? do you check your body over every day when you wake up to make sure you havnt hurt yourself in your sleep?

CIPA is actually a variant of HSAN, CIPA is type 4, whereas I have type 2, from what I understand the A in CIPA stands for anniddosis which is the inavility to sweat. I sweat so I don't have CIPA.

I don't really check my body that often, but I probably should.

Your mother wears army boots.

Anything?

idk how big are those?

You still have a sense of touch and fee though, right?

Yup.

Is it any different than the way other people feel? (I realize you can't really know that but I'm just curious as to whether or not they could tell)

Nah I don't think so, I think the neurons that are responsivle for feeling texture and whatnot are independent of neurons that are responsible for the transmission of pain signals to the brain.

If I edit the proof to add a verifiable picture, will the thread be brought back up? or do i need to make a new one?

What is like when you try to hold your breath/are under water for a prolonged period of time? Do you feel the need to come up for air? Do you feel anything?

I do feel the need to come up for air eventually, but I can actually hold my breath underwater for a lot longer than most people I know

think my record is like 1:15, not amazing but I think it's alright

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I stopped a long time ago lol

Why do think you end up with so many un treated injuries? Do you think it is because you don't feel the need to avoid things that may cause injury? I'm genuinely curious because even without feeling pain i would think there would be a degree of will to avoid things that would damage your body.

Yeah you got it, basically when someone feels pain doing something they subconsiencly register in their heads something along the lines of "oh shit wtf...that hurt...lets not do that again" I don't have that, and it doesn't help that my personality is an extremely active/fast paced one, probably cause I'm not afraid of getting injured

Now I'm a bit older and more mature so I guess I understand my limits more and don't get hurt as often.

As a follow up, most of us know when something is wrong with our bodies because of pain. Do you, or do you intend on getting regular checkups to detect anything you wouldnt otherwise know about?

I go to the doctor often for all types of different things already so that's good.

So if you sustained a severe injury, such as a broken arm, would you feel any sensation at all? If so Is it a pressure feeling? also do you get sore from working out or physical activity?

When I fractured my arm, which was a BIG injury, the immediate impact was actually very painful, few minutes later I was fine as could, (the pain, anyways, I was being rushed to the ER at that point)

How are you still alive? Pain stops us from doing so many stupid and dangerous things. Without it, I doubt many kids would make it too far past being able to walk.

Medicine, lots of surgeries to fix broken bones, lots of IV antibiotics to flush out infections, and lots of preventive measures and being told "no, don't do that "

lol if i was born 50or so years ago I'd be dead.

Thank you for taking questions! Are you parents very protective/paranoid about you getting hurt and not realizing it?

Yea and it gets on my nerves haha...especially when I'm trying to be independent but can't because they're afraid I will get hurt

Do people treat you as a punching bag knowing you can't feel pain?

I only tell my close friends not because it's something personal but mostly cause I don't feel the need to tell others about it

Tbh I actually refrain from telling idiots about my condition because I'm afraid they're going to try to slap me as hard as humanly possibly in an effort to test me

What about fatigue...? Do you find that you can run faster/longer than people you know?

I have a friend who has low pain sensitivity, and though he's medically overweight, he can sprint for longer than I can, essentially until he notices that he's really lightheaded. His legs don't burn from exertion.

I'm not that physically active so my endurance sucks. I get tired easily, I"m trying to change that, however.

extremely brutal and kudos. do you feel emotional pain? or, maybe, pain associated to that pain which you do not feel?

Yes, 100%. emotional pain =/= physical pain

Whats it like to not be able to feel pain?

feels pretty shitty tbh

Are you involved in any research studies and/or clinical trials?

Might dosome genome sequencing clinical trial later this year I believe, should be interesting.

Well actually my geneticist said she was going to call us since I qualified andeverything, haven't gotten a call back in what seems like months though

Do you know if you were to rupture an organ or have a heart attack if you would be able to recognize it and seek help?

most likely yeah

Since you don't feel temperature do you still use a blanket when you sleep?

i sleep with a blanket

Why? Is it just comfortable?

yea

Okay so you've covered that you can feel emotional pain and you can feel/touch. Are any other senses affected by your condition? Also, if you can feel/touch do you ever experience pain/discomfort through that? For example eating too much, having a headache while sick. Basically, do you ever experience "pain" through other senses? I would imagine that not all pain/discomfort felt is through pain receptors.

Thank you for doing this. I'm sorry that you have this condition but I'm glad to see you seem to have a positive attitude towards it.

Yea it's weird, generally I will feel discomfort and small headaches.

What you might find interesting though is I feel more pain in my back/legs than in my arms/stomach. For example I always get plenty of IV' which means I have to get poked a lot, grtting needles in my arm feels like nothing to me, however the other day when I was in the hospital for rhabdomylosis I had to get an IV on my foot cause the nurses couldn't find a single vein in my arm. Getting poked in the feet was probably the worst thing ever.

That is interesting. So is it completely isolated to your back and legs or is it just your back then parts of your legs? You mentioned fracturing your knees without pain. Also, is it pretty consistent what areas do or don't feel pain or does that change over time?

Getting an IV in the foot does sound terrible, it's hard to imagine them finding a good vein. Did you originally feel any pain with IVs in the arm and get used to it or was there simply never any pain? I donate blood fairly regularly and the needle doesn't seem to bother me as much as the first few times but I definitely still feel pain with it. Just wondering if you ever become desensitized to certain pains or if it's simply all or nothing

It's usually all or nothing, the severity of the pain and where it comes from is fairly consistent.

My knees and legs gurt a lot more than my hands and arms, pretty much always been that way.

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Yup