Hypersensitivity to Pain

[LadyS]

One thing I've struggled with is being 'hyperaware' of when something seems wrong healthwise or when I have pain. Judging by some of the posts I often see here, I'm assuming there are some of you that can relate?

TOO often I'll have acute awareness of some sort of irregular pain or "feeling off", going to the doctor only to be told everything is "normal" when you feel it isn't. Or that the issue goes away as soon as it's finally being addressed only to reappear sometime afterwards. This is incredibly frustrating. Especially when the doctor is dismissive because of my younger age like somehow being younger makes me I'm invincible.

I keep thinking maybe because of my ASD that I may just feel the pain more intensely, or that any disruption to my own "normal" exacerbates something that may be minor in nature and this could be the reason why.

I do know that the power of thought can do this. For instance my clumsy self I often bump into things but go about my day without thinking about whatever injury, only to find bruises later with no recollection of where it came from with very little pain. However, if I do put "thought" into the pain right after it happens, the bruise will continue to be painful throughout the next few days. I've always found that fascinating for some reason. I suspect internal health issues are the same way.

If I'm already hyperaware of loud noises, hot and cold, and touch sensations then it makes sense.

I also get these pinprick acute pain throughout my body. It can happen anywhere, super sharp and throbbing and debilitating but only for a second or two and then gone as soon as it came. Really weird and I always thought it happened to everyone but I'm guessing it doesn't.

I also can also sometimes "feel" internal movements and things going on inside my body so when I try to explain it to doctors or just people in general they often don't know what to make of it.

Either way, I think I may now resign to just stopping visits to the doctor and just dealing with it until things pass as I'm just tired of being told everything is normal and wasting my time.

Increased pain sensitivity and pain-related anxiety in individuals with autism

Supplemental Digital Content is Available in the Text.In verbal adults with autism, pain-related anxiety was associated with increased pain sensitivity across different durations of heat pain stimuli.Individuals with autism spectrum disorder (ASD) often ...

www.ncbi.nlm.nih.gov

(Sorry that was a muddled mess of a post)

 

[Judge]

I keep thinking maybe because of my ASD that I may just feel the pain more intensely, or that any disruption to my own "normal" exacerbates something that may be minor in nature and this could be the reason why.

Same here.

 

[Outdated]

I have a lot of the same hypersensitivity issues you mention. I'm extremely sensitive to touch and can distinguish between different sensations easily, yet pain has to be very severe before it really bothers me.

I like walking around barefoot all the time because I love the feel of all the different textures as I cross different surfaces. Naturally I tread on sharp things all the time, and I can feel pain, but I can also feel the difference between pain that is just a warning and pain that is from damage being done.

I've had a few different accidents over the years and discovered that I can also ignore pain while I sense and assess what damage has been done. But as a 14 year old I got hit by a car and suffered spinal damage, once you get used to living with that sort of pain nothing else seems as immediate.

I also have superb night vision and better hearing than most dogs.

 

[Darkkin]

Many autistics struggle with hypo and hypersensitivity depending on the stimuli. I can't stand having other people touch me, but I can also work through the hot poker pain of a seizing subclavian artery. (Lifelong angina has given me a wickedly skewed pain tolerance.)

29.5% of those diagnosed with fibromyalgia also have a comorbidity with ADHD and between 40 - 60% of autistics also have an ADHD comorbidity. 20% of autistics also have manifestations of EDS (hypermobility).

Feeling weird or off and struggling with a lot of pain is not unusual, statistically and physically.

 

[Neonatal RRT]

Hyposensitivity here. I've had many injuries, torn muscles, tendons, even broken bones because of it. I can literally sleep through the types of pain that others might scream through. A blessing and a curse.

 

[The Pandector]

I have a history of back surgeries and know what pain is. Recently, my energy plummeted and I have symptoms that mirror online descriptions of pancreatitis. Not surprising, I guess, for a longtime diabetic.

While I wouldn’t call it pain, my pancreatic symptoms grew into something I’m calling dread discomfort. When exacerbated, it feels like something systemic beyond pain is happening. There’s a weird emotional component to the discomfort, much like mortal dread. Plus, there’s that separate sensation, which actually is classically painful.

At exam, the doctor got distracted with a heart arrhythmia and concluded that may answer to my fatigue, as backed up by an experienced friend. She did scans and a nuclear stress test and found nothing out of the ordinary except a stage 1 block in my heart (an electrical problem, not blockage).

I’ve had that heart thing all my life, never had it looked at, haven’t died yet, don’t need it to tick much longer. But they found nothing otherwise.

I watched the screen during the abdominal scan and it was plain as day that a black mass was at the center of the acute pain site. Asked the tech, who said it was my gallbladder. Really easily distinguished visually, and dead center to the pain. Okay, kind of expected that. But the test reported nothing.

Two weeks later, the acute spot is about the same, but the dread discomfort is subsiding slowly. I have a hard time sitting for too long and the discomfort and pain are debilitating, to say the least. I am exhausted, as in no reserve.

WHY would I tell you all of that?

1) I like talking about my health, and
2) I went to the doctor about the dread discomfort and the point of pain. Neither of those conditions have been dealt with because the tests showed nothing. However, the thing I’ve intentionally ignored all my life is now the focus of ‘my medical team’. Great. Can’t wait for the bill.

My point:
I spent nine years advocating for and with my wife. Our experience was - and mine still is - that you must be your own advocate. For all their individual concerns and intentions, the medical establishment is a machine, and not one equipped with astute ears.

It is not their intention to satisfy your concerns nearly so much as it is about resolving your test results. They are trained to hear the patient with jaundiced ears, and a patient’s ‘perceptions’ run a distant second to printed test results.

I DON’T KNOW if this works for NTs, but it doesn’t work for me. I don’t go to the doctor to be told what to do, and resent the arrogance of the phrase ‘doctor’s orders’. I usually go for medicine or, as this time, diagnostic services; as long as I’m there, I listen to what they suggest for treatment.

I’m not badmouthing medical professionals; my wife was one as have been many friends. Every one of them, of necessity, plays a very narrowly defined role in the system, and tight systems don’t promote worker latitude.

So, I say, you have to take responsibility for your own health care, and don’t be afraid to speak up - loudly, when need be - or risk being the one that falls between the cracks.

Yes, I have unusually clear awareness of my body, and it doesn’t help much at the doctor’s office.

 

[Georgia Galaxy]

One thing I've struggled with is being 'hyperaware' of when something seems wrong healthwise or when I have pain. Judging by some of the posts I often see here, I'm assuming there are some of you that can relate?

TOO often I'll have acute awareness of some sort of irregular pain or "feeling off", going to the doctor only to be told everything is "normal" when you feel it isn't. Or that the issue goes away as soon as it's finally being addressed only to reappear sometime afterwards. This is incredibly frustrating. Especially when the doctor is dismissive because of my younger age like somehow being younger makes me I'm invincible.

I keep thinking maybe because of my ASD that I may just feel the pain more intensely, or that any disruption to my own "normal" exacerbates something that may be minor in nature and this could be the reason why.

I do know that the power of thought can do this. For instance my clumsy self I often bump into things but go about my day without thinking about whatever injury, only to find bruises later with no recollection of where it came from with very little pain. However, if I do put "thought" into the pain right after it happens, the bruise will continue to be painful throughout the next few days. I've always found that fascinating for some reason. I suspect internal health issues are the same way.

If I'm already hyperaware of loud noises, hot and cold, and touch sensations then it makes sense.

I also get these pinprick acute pain throughout my body. It can happen anywhere, super sharp and throbbing and debilitating but only for a second or two and then gone as soon as it came. Really weird and I always thought it happened to everyone but I'm guessing it doesn't.

I also can also sometimes "feel" internal movements and things going on inside my body so when I try to explain it to doctors or just people in general they often don't know what to make of it.

Either way, I think I may now resign to just stopping visits to the doctor and just dealing with it until things pass as I'm just tired of being told everything is normal and wasting my time.

Increased pain sensitivity and pain-related anxiety in individuals with autism

Supplemental Digital Content is Available in the Text.In verbal adults with autism, pain-related anxiety was associated with increased pain sensitivity across different durations of heat pain stimuli.Individuals with autism spectrum disorder (ASD) often ...

www.ncbi.nlm.nih.gov

(Sorry that was a muddled mess of a post)

This is why periods SUUUUUUUUUCK. But... good thing I'm used to them now.

 

[Storm Hess]

Noises...too many sounds going on all at once, hurts. Lite touch from objects or people drives me insane...I don't know why, but it does. Makes me angry. I've broken tea pots for me accidentally bumping into my arms as I'm trying to navigate the counter space in the kitchen. It may be due to clutter...I have to figure that out. Bright lights...that's a big one for me. I normally have all lights in the house off until I need to turn them on. I can feel the slightest bumps in surfaces that I walk on. I love being barefoot but have issue with the surfaces I walk on.

 

[Mr. Stevens]

This is why periods SUUUUUUUUUCK. But... good thing I'm used to them now.

I work at an adult day program, and this is a frequent topic. Some of the euphemisms/descriptions the ladies have, on my caseload, are pretty amusing. The other day one said to another staff, "[My name] is a man. I can't talk to him about this s***!"

 

[Mr. Stevens]

I am definitely hyper or hyposensitive, depending on what it is. I'd cope better with a nail through my hand than with much milder things most people wouldn't notice.

 

[ra49]

I have a history of back surgeries and know what pain is. Recently, my energy plummeted and I have symptoms that mirror online descriptions of pancreatitis. Not surprising, I guess, for a longtime diabetic.

While I wouldn’t call it pain, my pancreatic symptoms grew into something I’m calling dread discomfort. When exacerbated, it feels like something systemic beyond pain is happening. There’s a weird emotional component to the discomfort, much like mortal dread. Plus, there’s that separate sensation, which actually is classically painful.

At exam, the doctor got distracted with a heart arrhythmia and concluded that may answer to my fatigue, as backed up by an experienced friend. She did scans and a nuclear stress test and found nothing out of the ordinary except a stage 1 block in my heart (an electrical problem, not blockage).

I’ve had that heart thing all my life, never had it looked at, haven’t died yet, don’t need it to tick much longer. But they found nothing otherwise.

I watched the screen during the abdominal scan and it was plain as day that a black mass was at the center of the acute pain site. Asked the tech, who said it was my gallbladder. Really easily distinguished visually, and dead center to the pain. Okay, kind of expected that. But the test reported nothing.

Two weeks later, the acute spot is about the same, but the dread discomfort is subsiding slowly. I have a hard time sitting for too long and the discomfort and pain are debilitating, to say the least. I am exhausted, as in no reserve.

WHY would I tell you all of that?

1) I like talking about my health, and
2) I went to the doctor about the dread discomfort and the point of pain. Neither of those conditions have been dealt with because the tests showed nothing. However, the thing I’ve intentionally ignored all my life is now the focus of ‘my medical team’. Great. Can’t wait for the bill.

My point:
I spent nine years advocating for and with my wife. Our experience was - and mine still is - that you must be your own advocate. For all their individual concerns and intentions, the medical establishment is a machine, and not one equipped with astute ears.

It is not their intention to satisfy your concerns nearly so much as it is about resolving your test results. They are trained to hear the patient with jaundiced ears, and a patient’s ‘perceptions’ run a distant second to printed test results.

I DON’T KNOW if this works for NTs, but it doesn’t work for me. I don’t go to the doctor to be told what to do, and resent the arrogance of the phrase ‘doctor’s orders’. I usually go for medicine or, as this time, diagnostic services; as long as I’m there, I listen to what they suggest for treatment.

I’m not badmouthing medical professionals; my wife was one as have been many friends. Every one of them, of necessity, plays a very narrowly defined role in the system, and tight systems don’t promote worker latitude.

So, I say, you have to take responsibility for your own health care, and don’t be afraid to speak up - loudly, when need be - or risk being the one that falls between the cracks.

Yes, I have unusually clear awareness of my body, and it doesn’t help much at the doctor’s office.

Wishing you good luck with your gallbladder, Pandector!
I complained and documented symptoms for over a decade and my then-PCP wouldn't send me for review by a specialist. Finally a new PCP and I happened to be symptomatic the day she saw me = specialist.
The surgeon told my husband that gallbladder should have been out 10 years ago, and we were fortunate that it had neither ruptured nor turned septic.

As your doctors are headed the wrong road, research milk thistle/silymarin and get some relief for your system until they pay better attention.

Good luck