Communicating pain and discomfort - sensory abnormality

Page 1 of 2 [ 29 posts ]  Go to page 1, 2  Next

A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

25 Jul 2021, 6:04 pm

I'm curious to know if anyone can relate to this:

It is not uncommon for people on the spectrum to be hyposensitive (also known as sensory under-responsitivity), which makes it difficult to determine for instance how much pain or discomfort one is experiencing, which then makes it difficult to correctly express this to a physician. I've experienced this a number of times in my life, but let me give some examples:

24 years ago I started experiencing a pain in my left leg, and after a couple of days my calf started to swell.
I went to my family doctor who told me to come back if if got worse. It did, so a week later I returned, he told me it was probably nothing. It got worse, and two weeks later, as I was hopping through my workplace (I couldn't use my left leg anymore), I crashed. I was rushed to hospital where it was discovered I had a deep vein thrombosis (DVT) along the entire length of my leg. I also had a fever. I had to spend two weeks in hospital.
The specialist asked me why on earth I didn't seek help earlier. My family doctor remarked that I never told him I was in THAT much pain and felt THAT awful. But how much pain is THAT much pain?! I was asked if there was pain, I replied with yes.

2 years later the whole thing repeated itself, this time with my right leg (different family doctor).

In 1994 I went to my family doctor (yet another one) because of painful hips. Been there a number of times, nothing was ever discovered.
A year ago the pain got so bad I could barely walk for 10 minutes. Then suddenly my right hip locked up. An MRI scan showed that the labrum (ring of cartilage that follows the outside rim of your hip joint socket) was torn to shreds in both hips. Also showed I had cam/pincer (hip impingement syndrome). I was operated on both hips, I can now walk again. My family doctor said I failed to make clear in how much pain and discomfort I was.

I also walked around with a cracked bone in my left underarm for a couple of days when I was around 10 years old, until my mother noticed.

In all these cases I was asked why I didn't seek help sooner. Let it be clear that I WAS in pain and I DID feel awful.... perhaps it just wasn't clear to me how MUCH pain and HOW awful.

I'm still wondering if I'm less sensitive to pain than other people (hyposensitive), not good at relaying how I feel and how I'm doing, or just a tough guy who can endure more than most people. I don't think many people could just go on the way I did.

Also, I'm wondering if there could be a link with alexithymia (inability to identify and describe emotions experienced by one's self), which applies to me.

Thoughts/experiences?


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


HeroOfHyrule
Veteran
Veteran

User avatar

Joined: 4 May 2020
Age: 22
Gender: Male
Posts: 9,247

25 Jul 2021, 8:48 pm

I am less sensitive to pain than other people, so I don't notice injuries that easily, and also I don't get the desire to really tell anyone about any pain I do have. I'll vent about it online sometimes if I notice it, but I don't often willingly go to my parents/doctor or anything for help with it. That might partly be because of having things dismissed before, though ever since I was a toddler I've been more of a "grin and bear it" type of person. If something doesn't prevent me from functioning I will usually just stay that way until it does. :oops:



Trogluddite
Veteran
Veteran

User avatar

Joined: 2 Feb 2016
Age: 53
Gender: Male
Posts: 3,075
Location: Yorkshire, UK

25 Jul 2021, 10:12 pm

Similarities here with both of the above posts. I pretty much had to be coerced by someone else to go to the doctor for gout because I was limping so badly - but still going out for my daily walk in the countryside (gotta get away from them damned humans). I definitely seem less sensitive to pain generally, and any pain that lasts more than a few hours, I acclimatise to and it becomes my new "normal" - my brain just says; "yeah, I heard all about that the first time, you jangly nerves can just shut up now". Also, like HeroOfHyrule, I need to be almost at the point of operating on myself with a kitchen knife before I even think of going to the doctor (I have not even registered with a local doctor since I moved house a couple of years ago). Either I keel over or it will get better by itself - very typical fatalism for me generally, including where mental illness is concerned too (anxiety, depression) .

A_minor wrote:
Also, I'm wondering if there could be a link with alexithymia

My alexithymia is rather profound, and I suspect that you are right. In fact, the psychologist who performed my autism assessment quite explicitly connected my alexithymia with my hyposensitivity - in particular, hyposensitive interoception, the senses relating to internal bodily functions. I can be suffering anxiety so strong that everyone around me begins panicking - "Are you OK? Take a rest! Calm down, mate!". Except I'm not really "suffering" - I'm wondering what the hell all the fuss is about because I don't really feel anything other than my usual mild annoyance. As soon as they point it out, though, I start noticing "hey, my heart is beating kinda fast isn't it? Oh, wow, and I've gotten really sweaty? And look at the way my hands shake! OMG, they're right, I'm acting like a really stressed out person! I guess I must be stressed out, then?!".

The way the shrink explained it to me is this. The emotional part of the brain is different to the "consciousness" part of the brain - and they don't always talk to each through brain wiring. Instead, the emotional part releases hormones and things into your bloodstream. These cause all kinds of physical effects (heart rate, sweating, shakes, etc). These physical signs then get noticed by the interoception senses, and it's only then that the "consciousness" part of the brain gets told what's going on. This is so automatic for most people that they have no idea that this is how it works. But, if your interoceptive senses are hyposensitive, it can mess up this communication path. Being alexithymic doesn't necessarily mean weak or absent emotions, it can also be that you have them, and even act them out, but they're hidden from your awareness - and it can cause weird reactions from other people if they notice them, but you don't! If you web search for "interoception alexithymia", you should be able to find a few formal scientific papers about it if you're interested (sorry - a hyperlink wouldn't format properly for some reason).

Reading these physical signs is something that you can learn to some extent - I was taught a little bit by the only good counsellor I ever saw. It's not automatic, but if I'm in a potentially emotional situation, I sometimes take a moment to run through a little check-list; heart-rate, sweating, shaky hands, etc. to get a better idea of how I'm coping so I get some early-warning of an impending melt-down or shut-down.


_________________
When you are fighting an invisible monster, first throw a bucket of paint over it.


A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

26 Jul 2021, 6:21 am

Thanks for the replies!

HeroOfHyrule wrote:
I don't often willingly go to my parents/doctor or anything for help with it. That might partly be because of having things dismissed before, though ever since I was a toddler I've been more of a "grin and bear it" type of person. If something doesn't prevent me from functioning I will usually just stay that way until it does. :oops:


Same here.

Trogluddite wrote:
My alexithymia is rather profound, and I suspect that you are right. In fact, the psychologist who performed my autism assessment quite explicitly connected my alexithymia with my hyposensitivity - in particular, hyposensitive interoception, the senses relating to internal bodily functions.


Thanks for that, I never heard of hyposensitive interoception (or interoception) before- makes for an interesting read, I've come across many recognizable things that I never thought of connecting to the situations I described, for instance being chilled to the bone or way too hot without knowing.

Trogluddite wrote:
If you web search for "interoception alexithymia", you should be able to find a few formal scientific papers about it if you're interested


Again, a search reveals many interesting things to read. I've read a lot about autism and the mind, but hadn't really ventured into the physical territory yet. It's as big a thing as the mind thing, really :o

Last year I asked my house doctor how regular people went about getting the attention they needed; "do they roll around on the floor crying or what?!", to which she answered "I wouldn't quite use those words, but yeah".
She is aware of my diagnoses and past problems and put a remark in my file to prevent future problems.


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


Trogluddite
Veteran
Veteran

User avatar

Joined: 2 Feb 2016
Age: 53
Gender: Male
Posts: 3,075
Location: Yorkshire, UK

26 Jul 2021, 1:38 pm

A_minor wrote:
...hadn't really ventured into the physical territory yet. It's as big a thing as the mind

I think that autism is too often talked about as if it is just a mysterious collection of psychological "behaviours" - they all must rely on more primitive sensory, perceptual, and cognitive "building blocks", I think.

Another example is proprioception - the sense which tells us where our body parts are without looking at them. Without this, it is difficult to feel that one's mind truly inhabits one's body. And again, it may have a part to play in alexithymia (and poor "non-verbal" communication). When we see someone else's posture and facial expression, the first step to recognising its emotional meaning is by "mirroring" it - our brain tries to imagine the arrangement of their body as if it were ours, to match it with an experience of our own. But this is much more difficult if the proprioceptive sense is impaired, and one's "map of the body" is poor, as mine is (for example: it is extremely difficult for me to mimic someone else's movements, and I have minor "out of body" experiences when seeing my reflection in a mirror). To return to the original topic; this can also have effects on describing symptoms to a doctor, because a warped "map of the body" can make localising symptoms more difficult. It can also lead to musculo-skeletal problems due to effects on the development of walking gait, sitting posture, etc.


_________________
When you are fighting an invisible monster, first throw a bucket of paint over it.


A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

26 Jul 2021, 4:45 pm

Interesting...

Trogluddite wrote:
this can also have effects on describing symptoms to a doctor, because a warped "map of the body" can make localising symptoms more difficult. It can also lead to musculo-skeletal problems due to effects on the development of walking gait, sitting posture, etc.


I was aware of possible autism "symptoms" such as physical awkwardness, clumsiness and typical gait, but I never looked into it. As far as I know I don't come across as awkward physically, but I do tend to drop things out of my hands and walk into door posts for example, or bumping my hands against objects as I walk past. I have also on three occasions broken some toes, bumping into open doors or furniture. I feel I'm not always spacially aware.

Also interesting: I know an aspie who suffers from Body Identity Integrity Disorder (BIID). He strongly feels his legs are not actually part of him, and has made some home attempts at removing some bits himself (partially succesful) since the medical world is reluctant to offer help. From searches online it would seem there could be a relation to autism, ADHD and gender identity.

Trogluddite wrote:
But this is much more difficult if the proprioceptive sense is impaired, and one's "map of the body" is poor, as mine is (for example: it is extremely difficult for me to mimic someone else's movements, and I have minor "out of body" experiences when seeing my reflection in a mirror).


You mention a mirror; coincidentally I found this on the neurosciencenews website where possible help for people with BIID is discussed:

"Then there is mirror-box illusion, a technique known to alter our awareness of body actions and the extent to which they seem part of us. It involves getting a patient to look at the reflection of a limb through a box with a mirror.
Researchers have shown this can affect a person’s sense of control over their actions, as well as to reduce or even eliminate the phantom pain that some people experience after an amputation."

Mere coincidence perhaps, I don't know. In case you're interested:

Link to the BIID article on the neuroscience site: here
Link to article about the mirror-box illusion on same site: here


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


Edna3362
Veteran
Veteran

User avatar

Joined: 29 Oct 2011
Gender: Female
Posts: 11,364
Location: ᜆᜄᜎᜓᜄ᜔

26 Jul 2021, 5:00 pm

I'm usually hypersensitive -- especially beyond 5 basic senses and not very alexithymic.

Yet I happened to have an unusual amount of tolerance to pain and discomfort.

Sometimes sensory seeking -- I'd be the type who would pour unholy amounts of alcohol directly to a superficial wound just to feel the sting.

Or kept poking my own bruises. Or move whatever's sprained, cramped or possibly broken.

Or if I have a headache bad enough, I'm not gonna lie on some pillow -- rather, I'd bang it on the wall.


Partially because I can't exactly afford accomodations and nothing is reliable.
Partially because I don't like worrying people and I'd rather look up to it myself.

Partially because I can't simply communicate 100% at the time -- if someone tells me what I feel about it, I'd ramble and just get frustrated anyway.

And partially because I do have a habit of ignoring my feelings in general.


So.. In my case...
It's not really the senses and it's processing related to pain, but my reaction to the senses and how I'd judge it.

I'm just highly tolerant -- and sometimes, it's encumbering whenever it's past my thresholds without a rest which happens more often.

And not very communicative -- at least not vocally.
But more like discomfort is more or less too normal, too used to it and personally dismissed it as such. Until finding out, it isn't and does affect in subtle ways.




But yes. A lot of atypical reaction happens around the autistic spectrum.

Alexithymia does play a lot of role around pain and communicating about pain -- alexithymia is but a dimension along with sensitivity, threshold, tolerance and response.


_________________
Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.


Trogluddite
Veteran
Veteran

User avatar

Joined: 2 Feb 2016
Age: 53
Gender: Male
Posts: 3,075
Location: Yorkshire, UK

26 Jul 2021, 6:38 pm

A_minor wrote:
As far as I know I don't come across as awkward physically...

My own "as far as I know" has turned out to be quite deceptive. I have known since childhood that something was off with my spacial and postural sense - it was obvious in gym classes at school and when I was in a marching band for a time (I never did learn what so distressed the drill instructor about my marching). I also knew that people found me very easy to identify at a distance from my gait, or mocked it even, and similar to you, I can be very clumsy when handling things and usually have at least a couple of bruises from inanimate objects jumping into my path!

And then, only a few years ago, I saw myself on video for the first time. I can only describe this experience as excruciating. Don't get me wrong, I'm not talking about embarrassment at bruised vanity, and I have no problem with anyone else watching these videos - they'll only see whatever they see in real life, so that's fine. But it is hard to describe just how unsettling I find it to watch. I recognise that it is my face, my clothing, my voice - but the "thing" on the screen is not me, it is some kind of reanimated corpse or badly programmed cyborg. I simply do not at all recognise how it holds itself or how it moves - it is not at all the picture I have in my own mind of how the parts of my body are coordinated. Pinpointing exactly what it is that seems so wrong is very difficult, but it calls into question my whole ability to camouflage my autism, and it is a textbook example of the "uncanny valley" effect. I can only guess that I don't experience such profound discomfort with mirrors because of familiarity and/or their "real-time" nature.

A_minor wrote:
Mere coincidence perhaps, I don't know. In case you're interested:

In fact, very closely related to my experiences I suspect. I was aware of a few similar illusions, but not that specific one - thanks for the links. I have always been fascinated by these illustrations of how easily our perceptual mechanisms can be tricked and can affect, or be affected by, our psychology (coincidentally, I've just been reading some of neurologist Oliver Sacks' case studies, including a couple very reminiscent of BIID).

Edna3362 wrote:
I'm just highly tolerant

I find it really interesting that, although you're hypersensitive, opposite to the other posters, the theme of being "tolerant" and "not wanting to bother people" etc. is the same for everyone who has written so far. I wrote in another post a little while ago that "masking" can be different things for different autistic people - it doesn't have to be masking the obvious "autistic" stuff like stimming, it can also be masking disappointment, masking anger, masking depression - or masking physical pain.


_________________
When you are fighting an invisible monster, first throw a bucket of paint over it.


dragonsanddemons
Veteran
Veteran

User avatar

Joined: 19 Mar 2011
Gender: Non-binary
Posts: 6,659
Location: The Labyrinth of Leviathan

26 Jul 2021, 7:38 pm

I’m hypersensitive to any sort of abnormality in my body, and therefore get brushed off because nothing ever looks “that” bad (whatever “that” is). My body is also very reluctant to give any measurable signs of anything that’s wrong. In college I went to the health center because I was certain I had strep throat since I’ve had it a fair bit and it was exactly the same symptoms as every other time, and was promptly dismissed because my temperature wasn’t even over one hundred, they only took about a second to even glance in my throat. Five days later I was back in because my temperature shot up (still 99 to 103) overnight, and guess what, I was confirmed to have strep :roll: And when my doctor and I were pretty darn sure I had some sort of lymphoma and had enough swelling on one side of my neck to be noticeable even if you weren’t looking for it, ultrasound, CT scan, and core biopsy all were inconclusive, it wasn’t until they did the larger biopsy that they found yeah, I had stage 2 Hodgkin’s lymphoma.

So basically, I do detect that something is significantly wrong, but I’m usually promptly dismissed anyway :roll:


_________________
Yet in my new wildness and freedom I almost welcome the bitterness of alienage. For although nepenthe has calmed me, I know always that I am an outsider; a stranger in this century and among those who are still men.
-H. P. Lovecraft, "The Outsider"


A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

27 Jul 2021, 4:32 pm

Trogluddite wrote:
My own "as far as I know" has turned out to be quite deceptive.

I may indeed be wrong, I am assuming I physically come across normal because I used to be good at sports like athletics and football, also my fine motor skills are good as for instance I play several instruments and used to draw and paint.
On the other hand, I read somewhere that the awkwardness that sometimes comes with being on the spectrum may not be present where it concerns activities of special interest to that person.
I'm still gonna go ahead and assume I look absolutely normal 8)

Trogluddite wrote:
the theme of being "tolerant" and "not wanting to bother people" etc. is the same for everyone who has written so far. I wrote in another post a little while ago that "masking" can be different things for different autistic people - it doesn't have to be masking the obvious "autistic" stuff like stimming, it can also be masking disappointment, masking anger, masking depression - or masking physical pain

Edna3362 wrote:
But yes. A lot of atypical reaction happens around the autistic spectrum.

dragonsanddemons wrote:
So basically, I do detect that something is significantly wrong, but I’m usually promptly dismissed anyway :roll:

It suddenly struck me that, although NT persons may have functional Theory of Mind, it may not be all that functional when it concerns the minds of people on the spectrum. Apart from physical symptoms also possibly presenting differently, that's actually quite a handicap when trying to assess someone's health.


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


Trogluddite
Veteran
Veteran

User avatar

Joined: 2 Feb 2016
Age: 53
Gender: Male
Posts: 3,075
Location: Yorkshire, UK

27 Jul 2021, 6:05 pm

A_minor wrote:
although NT persons may have functional Theory of Mind, it may not be all that functional when it concerns the minds of people on the spectrum

Exactly that. Any pair of people are likely to empathise with each other more successfully if their experiences are more similar - it provides a basis for imagining the other's perspective. On sites like this one, autistic people demonstrate every day that they are perfectly able to empathise with other autistic people who's traits are similar to their own. And yes, when autistic and non-autistic minds meet, there is likely to be a deficit of empathy in both directions.

In fact: Autistic people are obliged to live in a world primarily designed around non-autistic thinking, and are often cajoled into investing a lot of energy into comprehending it, whereas there is very little incentive in the reverse case. So we may be better at empathising with non-autistic people than they are at empathising with us (i.e. we are misunderstood more than we misunderstand). That only the autistic gets labelled as deficient in empathy is primarily because ours is the minority perpective. If your appetite for research is not yet exhausted (!), you will find this referred to as the 'double empathy problem' - this hypothesis shines a whole new light on the "theory of mind deficit" model of autism.

A_minor wrote:
my fine motor skills are good as for instance I play several instruments and used to draw and paint

Likewise! (though I'm not a skilled player of instruments besides my primary one, bass guitar). I can also type reasonably efficiently and have worked as a precision machine operator. Such seemingly paradoxical differences between gross and fine motor skills are apparently not unusual. The only major caveat caused by my proprioceptive traits seems to be that I have to learn such things by much trial and error. Attempting to teach by demonstration is likely to fail - showing me how to use my hands by demonstrating with your hands would seem like magical nonsense if I hadn't witnessed it working so well for other people!


_________________
When you are fighting an invisible monster, first throw a bucket of paint over it.


A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

28 Jul 2021, 4:47 pm

Trogluddite wrote:
If your appetite for research is not yet exhausted

Nope.
Trogluddite wrote:
you will find this referred to as the 'double empathy problem' - this hypothesis shines a whole new light on the "theory of mind deficit" model of autism.

I remember now I have come across this during earlier investigations, shortly after my diagnosis. I suspect it didn't stick with me back then because I was still in "It's all my fault coz I'm an autistic idiot" mode.
Trogluddite wrote:
That only the autistic gets labelled as deficient in empathy is primarily because ours is the minority perpective.

Agreed.
I suspect that if it were the other way around, those diagnosed with allism in a society where autism is the norm would have less problems coping than autistics do in this allistic society.
Also, the checklist for diagnosing allism would likely not paint a pretty picture of the disorder and those suffering from it.

There seems to be some research ongoing regarding autistic people and physical health:
"The double empathy problem underscores the importance of training programs — say, for doctors or law enforcement professionals — that help non-autistic people interact appropriately with autistic people."

But most of it is still aimed at children:
"Still, autism is often erroneously described as a childhood condition, and children are where the vast bulk of research dollars and media attention are focused."

I had a bit of a think about Theory of Mind.
I've had quite some encounters with people on the spectrum, both online and in real life, and I think most problematic behaviour (if any) they may display stems from frustration and unhappyness.
Not to generalize but many neurotypicals display a lot of behaviour like bullying, lying, dishonesty, violence etc and they do so with supposedly functional/healthy Theory of Mind. If that is true, then they are aware of the effects of their behaviour on others. Thus, there must be something deeply wrong with them.

Edit: just found this: Autistic Spectrum Disorders Toolkit


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

29 Jul 2021, 7:47 am

Upon reflection I feel my previous post was somewhat charged/blunt regarding neurotypicals, driven partly by past experiences but also by fatigue and bad mood.
Apologies to anyone who does not relate or was offended.


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.


GGPViper
Veteran
Veteran

User avatar

Joined: 23 Sep 2009
Gender: Male
Posts: 5,880

29 Jul 2021, 10:50 am

I also have both alexithymia and hyposensitivity to (some types of) pain.

For instance, I used to suffer from chronic ankle instability some years ago because of recurrent ankle sprains.

Whenever I suffered a sprain, I would just ignore it because the pain was manageable (and sometimes it even felt good - like a tickle or exercise soreness - rather than painful).

Since then I have grown my health-conscious, though, so I am now more aware if something ought to hurt even if it actually doesn't hurt.



HeroOfHyrule
Veteran
Veteran

User avatar

Joined: 4 May 2020
Age: 22
Gender: Male
Posts: 9,247

29 Jul 2021, 11:14 am

GGPViper wrote:
I also have both alexithymia and hyposensitivity to (some types of) pain.

For instance, I used to suffer from chronic ankle instability some years ago because of recurrent ankle sprains.

Whenever I suffered a sprain, I would just ignore it because the pain was manageable (and sometimes it even felt good - like a tickle or exercise soreness - rather than painful).

Since then I have grown my health-conscious, though, so I am now more aware if something ought to hurt even if it actually doesn't hurt.

I've noticed the same thing where some types of pain, like sprains, don't really feel bad because of my hyposensitivity. I used to have really unstable ankles as a kid (still do, but to a lesser degree), and I eventually got so used to the relatively minor pain that I kind of liked the soreness from sprains. lol



A_minor
Snowy Owl
Snowy Owl

User avatar

Joined: 23 Jul 2021
Age: 56
Gender: Male
Posts: 140
Location: Netherlands

29 Jul 2021, 3:21 pm

I used to sprain my ankles a lot when I was young, but it never really hurt or bothered me. Also I was able to do weird things with my shoulder joints, so maybe I was just really flexible.


_________________
ASD, ADD, Avoidant Personality Disorder and Dysthymia, diagnosed 2017.