Sensory sensitivities: research and theories?

[arewenearlythereyet]

@arewenearlythereyet my sensitivity is very different to that. I experience severe pain when exposed to light and sound, beyond my very narrow limits. It causes me pain to type on my phone now, with dark glasses and with the screen dimmed right down and the blue light off.

Also when it’s bad, causes physical deterioration in health and all parts of my functioning get worse. Which can continue to get worse for some time afterwards (days, weeks after hospital for example). I do have what you describe as well - like I need ear plugs too but not to concentrate - I need it to drown out the sound. Which unfortunately even noise cancelling earplugs + ear defenders don’t do completely!

Edit; we have a thread in the advocacy forum somewhere about what happens to you when you’re exposed to sensory stimulation which has different peoples experiences

Yes this seems so very different and similar to what I’ve read elsewhere, that’s why I just lump mine (which I think is very different) in with general confusion/migraine type fog. To call it sensitivity seems like I’m overstating it. I can’t imagine the level of concentration required with the pain you describe.

 

[arewenearlythereyet]

I think Kitty may be right it may be related to the “broken battery”, and energy is required to deal with sensory input, as it does drain my energy and functioning so quickly. Wasn’t there a research group looking specifically at sensory parts of ME, I think it was posted on S4ME a while ago.

I had a quick scan and I have found a few studies that conclude that:

• the brain uses the most energy/ATP out of all the organs in the body (about 20%) from glucose
• that the cerebral cortex is likely to use the lion-share (great ...that’s insightful)
• That the parts of the brain that process light and sound do so in a very similar way (postulating that this is primarily a threat detection process which feels overly simplistic)
• That so far we don’t know enough detail about how the brain works (probably because it’s very complicated and there are so many psychiatrists diluting the research funds)

I’ve not linked the various studies since there was a lot of reading with not much more than the above. There is a lot of guff/non scientific armchair musings from behavioural psychology out there that is quite draining to wade through.

In recent years they have developed mri based techniques I think to look at brain activity to stimulation and last year a study was done on rat brains (invasive) to look at ATP activity/mapping to stimulus. It looks like there isn’t much out there beyond that.

It feels plausible that some processes in the body may be shut down/changed to conserve depleted energy (like digestion, body temperature etc), however it seems odd to shut down the brain which feels like a last resort? But we don’t know enough about it to know.

In addition to energy conservation, perhaps blood flow is also a factor? The work on micro circulation might be a start to understanding things?

Just my musings and I didn’t spend more than an hour on this.

 

[JemPD]

@arewenearlythereyet my sensitivity is very different to that. I experience severe pain when exposed to light and sound, beyond my very narrow limits. It causes me pain to type on my phone now, with dark glasses and with the screen dimmed right down and the blue light off.

Also when it’s bad, causes physical deterioration in health and all parts of my functioning get worse. Which can continue to get worse for some time afterwards (days, weeks after hospital for example). I do have what you describe as well - like I need ear plugs too but not to concentrate - I need it to drown out the sound. Which unfortunately even noise cancelling earplugs + ear defenders don’t do completely!

Edit; we have a thread in the advocacy forum somewhere about what happens to you when you’re exposed to sensory stimulation which has different peoples experiences

yes this is how it is for me also, but sound is worse than light for me, light is only very* bad when i'm in PEM, when the slightest chink of light is like a dagger. It must be so hard to be like it all the time.

What i cant understand is how sound ramps up the "volume" on ALL my symptoms, there & then, as well as draining the battery more. It's like there is a 'volume' dial in my brain with all my symptoms on it, and 'Sensory Input' is the man who controls the dial, and sound dials up the volume the most. So once i'm in PEM sound makes ALL symptoms worse in the moment,
as well as 'too much' sensory input eventually causing PEM.

I dont think the 'threat detection' theory makes sense for me, because when i'm scared/anxious i can tolerate MUCH more sensory input that when calm. It's like the dial becomes much less sensitive.

I wish they would research it because i think it could give clues, but what do i know

 

[Invisible Woman]

I dont think the 'threat detection' theory makes sense for me.

It doesn't to me either.

The first time I went tharn (for any Watership Down fans), I had gone to the supermarket with IM.

He said I'll just go get something and you get something else. I instantly forgot what he said.

It was too bright with too many colours & too loud with too many different sounds and lots people moving about.

I couldn't remember what he was wearing, where he'd gone, whether he was coming back and I simply didn't know what to do. All I could think of was to stand to one side out of the way - though standing hurt.

I'd never experienced a panic attack and just assumed that's what was happening. Get a grip I thought and focused in my breathing and then I realized my breathing was normal. The POTs type symptoms weren't as bad in those days so if my HR was up it certainly wasn't racing or anything. None of what you would expect from the old flight or fright.

Sensory overload. Pure and simple.

 

[Jonathan Edwards]

Moved posts

Surely PEM is a lot better explanation for why things can’t be done to severe ME patients than “doing things is painful”, it is the PEM that makes them so

I don't think PEM is an explanation. It is just a useful specific term for the way doings things can lead to symptoms like pain in ME/CFS.

I am not sure this is actually PEM though. Being intolerant of stimuli in severe ME is an immediate thing as I understand it. It certainly is for me if I am feeling very ill.

 

[Yann04]

I don't think PEM is an explanation. It is just a useful specific term for the way doings things can lead to symptoms like pain in ME/CFS.

I am not sure this is actually PEM though. Being intolerant of stimuli in severe ME is an immediate thing as I understand it. It certainly is for me if I am feeling very ill.

It may be different for different people, but in the large majority of people I’ve talked to sensory sensitivities in severe ME is directly because of PEM. Having too much sensory input directly causes PEM and worsens the condition. @JemPD had an excellent comment explaining this here: https://s4me.info/threads/gabapentin-for-pem-related-hypersensitivies.38919/#post-537908

 

[rvallee]

I don't think PEM is an explanation. It is just a useful specific term for the way doings things can lead to symptoms like pain in ME/CFS.

I am not sure this is actually PEM though. Being intolerant of stimuli in severe ME is an immediate thing as I understand it. It certainly is for me if I am feeling very ill.

Sensory intolerance, if that's the right term, is very immediate. It's probably similar to migraines, the intolerance to light and sound seem very similar. I agree it seems nothing like PEM, although mine developed largely as a result of loud noises, was certainly aggravated by it. But as far as I'm aware it has never been researched. It's simply disbelieved, just like what they're doing to her.

It's horror. I had severe sound intolerance for years and the slightest noise was pure pain. I only experienced a deeper level of this, where even light was painful, and it's probably the only event in my life that I could consider traumatic, something I would do anything to avoid experiencing again. This experience is pure torture, the kind that leaves anyone with the thousand-yard stare. What they are doing should 100% qualify as torture, but they'll never understand it, and feel entitled to make it worse precisely because they are wholly ignorant of it.

 

[Jonathan Edwards]

sensory sensitivities in severe ME is directly because of PEM. Having too much sensory input directly causes PEM and worsens the condition.

I don't really follow that @Yann04 because 'PEM' is just what we call the time pattern of symptoms. It isn't a 'thing' that causes things in the sense that we know what it is. Having too much sensory stimulation may well cause PEM but for these very severe patients the account we hear is that stimuli are disturbing and can lead to pain straight away. Either way I am not sure that the PEM term helps much in an account designed for people who have never heard of the term.

Edit: and rvallee confirms the immediacy at least for him.

 

[Lou B Lou]

I don't really follow that @Yann04 because 'PEM' is just what we call the time pattern of symptoms. It isn't a 'thing' that causes things in the sense that we know what it is. Having too much sensory stimulation may well cause PEM but for these very severe patients the account we hear is that stimuli are disturbing and can lead to pain straight away. Either way I am not sure that the PEM term helps much in an account designed for people who have never heard of the term.

Edit: and rvallee confirms the immediacy at least for him.

I had extreme Sound and Light sensitivity in the early years of ME (early 8 years). The more sick I was the worse the sensitivities were. Sound was devastating, fully disorientating in the short term, but wiped me out in ME energy terms in the longer term. Sirens and motorbikes sounds caused actual sharp pain inside my ears. At worse just a small rustle of paper was devastating.

The light sensitivity was so extreme I had to have the curtains closed for weeks/months on end, but that was not enough, I wore an eyemask, but that was still not enough and any tiny chink of light was agony. The pain was behind my eyeballs, intransigent pain, searing pain. I worked out that I had to wait for the pain to fully go before being near any light. After the main pain had gone (weeks/months) there was a kind of residual soreness. I worked out over time that I had to wait for the soreness to subside and go before being around any light, however dim. Even just the light from the video machine that told me it was on (small green light) was agony.

These days (year 29) the sound light sensitivities are not so extreme but still a problem. At home I live in a kind of twilight zone - I have all lights low, and not within the range of my sight. ie I place lights in my living room behind me, or in an alcove, so I am not looking directly at any light source. I shade all bulbs very well. If I am around very bright lights for hours I start sensing pain. When I have PEM the sound and light sensitivities are worse.

The thought of being subjected to regular bright lights, perpetual sounds, whilst severely sick and unable to regulate my environment, is horrifying. An early GP (year 2) suggested to me that she admit me to hospital to 'hurry up the diagnosis'. I refused. I was far too sick, weak, light and sound sensitive to survive a hospital ward.

It makes my blood run cold that severely sick ME patients are disbelieved about the pain of sound and light sensitivities.

.

 

[JemPD]

Having too much sensory stimulation may well cause PEM but for these very severe patients the account we hear is that stimuli are disturbing and can lead to pain straight away.

It's both.

BOTH

So at my worst its an excruciating pain - an immediate one, sound particularly, but light also, the slightest sound, even the rustle of the duvet, causes a wave of full body pain, never mind just in the ears & head, it has its 'hand' on the 'dial' of the 'volume' & intensity of ALL my symptoms, not just the ones you'd expect, but all of them.

But it ALSO causes PEM in & of itself. It must not be forgotten that processing sensory input is exertion, its activity.

So the effort of processing the sensory stimuli, is 'activity' in the same way that moving, talking, thinking etc are. Sensory stimulus processing has same effect as 'exercise', for me at least.

So subjecting someone who is very severe to stimulus challenge, will be BOTH torture in the moment, AND send them further into a post activity crash where all symptoms worsen (whether we call that PEM or PESE or whatever). And the sensory sensitivity will get worse

Its torturous hell in the moment, and something which will only make the person more ill and MORE sensitive to it, in the same way that forcing a person to exert 'physically' beyond their tolerance will only make them less able to exert in the long run... Forcing sensory input beyond their tolerance will only make them more ill and MORE sensory sensitive in the long run....

Which is likely why the poor girl is screaming despite the fact that the sound of the screaming is probably agony - because its a natural uncontrollable response to both the agonising pain that the light causes in the moment... and also the terror of the hell that she knows is coming as all the symptoms & pain are only going to get WORSE as a result of the light. And she knows that through long bitter experience.

That light exposure, while torture at the time that doctor is inflicting it, comes also with the promise of even worse torture to come, when the impact of it hits later on. When the effort of processing the light he's let in, causes even more exacerbation of every ME/CFS symptom.
Inc sensory sensitivity & therefore it will be even MORE painful than it is currently.

I dont know how to further describe it to people who dont get it, they are unable to hear.
Ending up in Carla's position scares me to death, its just flat out torture, and the staff think they're helping. Its like a horror movie.

From my post @Yann04 linked to above

medics generally think that sensory sensitivities/processing issues in ME/CFS are driven either by anxiety or lack of exposure leading to increased sensitivity. ...

every time i have tried to explain to a HCP, (well anyone really), that its NOT a case of sitting in darkened silence for too long and that leading to it seeming louder/brighter - & therefore gradual increased exposure will not help, nor is it related to anxiety in that pleasant sounds have the same effect and i dont feel at all distressed by them (in an emotional sense)... whenever i explain that they look at me completely blank & nonplussed, & then wave their hands & shake their heads in dismissal "oh well its probably anxiety you're unaware of", or some other such comment. They cant think outside of their only framework that they have for sensory issues. I dont know what the answer is but its a tough one.

 

[Yann04]

It's both.

BOTH

So at my worst its an excruciating pain - an immediate one, sound particularly, but light also, the slightest sound, even the rustle of the duvet, causes a wave of full body pain, never mind just in the ears & head, it has its 'hand' on the 'dial' of the 'volume' & intensity of ALL my symptoms, not just the ones you'd expect, but all of them.

But it ALSO causes PEM in & of itself. It must not be forgotten that processing sensory input is exertion, its activity.

So the effort of processing the sensory stimuli, is 'activity' in the same way that moving, talking, thinking etc are. Sensory stimulus processing has same effect as 'exercise', for me at least.

So subjecting someone who is very severe to stimulus challenge, will be BOTH torture in the moment, AND send them further into a post activity crash where all symptoms worsen (whether we call that PEM or PESE or whatever). And the sensory sensitivity will get worse

Its torturous hell in the moment, and something which will only make the person more ill and MORE sensitive to it. So in the same way that forcing a person to exert 'physically' beyond their tolerance will only make them less able to exert in the long run... Forcing sensory input beyond their tolerance will only make them more ill and MORE sensory sensitive in the long run....

Which is likely why the poor girl is screaming despite the fact that the sound of the screaming is probably agony - because its a natural uncontrollable response to both the agonising pain that the light causes in the moment... and also the terror of the hell that is coming as all the symptoms & pain are only going to get WORSE as a result of the light. And she knows that through long bitter experience.

That light exposure, while torture at the time that doctor is inflicting it, comes also with the promise of even worse torture to come, when the impact of the sensory stimulus (ie the exertion of processing it) hits later on. When the effort of processing the light he's let in, causes even more exacerbation of every ME/CFS symptom.
Inc sensory sensitivity & therefore it will be even MORE painful than it is currently.

I dont know how to further describe it to people who dont get it, they are unable to hear.
Ending up in Carla's position scares me to death, its just flat out torture, and the staff think they're helping. Its like a horror movie.

From my post @Yann04 linked to above

Yep. For me when I hear too loud a sound or too loud a light. The symptoms I get are the exact same as if I’d just pushed myself too far physically in another way. It’s my “PEM warning sign symptoms” and sure enough, the next day, I crash.

 

[Jonathan Edwards]

Either way I am not sure that the PEM term helps much in an account designed for people who have never heard of the term.

Maybe more important than this is the mainpoint I was trying to make in my Qeios piece - that management should be based on evidence not theory. If one physician says the patient should be treated this way because they are in PEM another physician can say, 'but that's your theory, my theory is that this is the effect of childhood trauma and need sot be overcome'. Meanwhile the patient is in agony, just made worse by doctors arguing.

 

[Jonathan Edwards]

It's both.

BOTH

Yes, I think that is how the message has come through to me over the last ten years.

 

[JemPD]

Yes, I think that is how the message has come through to me over the last ten years.

Its so heartening to know that at least you, have heard Jonathan.

I think i said in the thread devoted to it, but JIC i didnt... Thank you so much for that Qeiros piece you published, i hope they will read it & take it in.

The time you've taken to properly listen & hear is valuable beyond measure, it makes such a difference.

Lol sorry if i belaboured the point in my long post above, it was more for anyone reading who hasnt heard, i just happened to quote your post at the top

 

[JemPD]

but that's your theory, my theory is that this is the effect of childhood trauma and need sot be overcome

The hideous irony is that even if that theory were accurate, 'assisting' the patient to overcome it in such a brutal, agonising & terrifying manner manner, would only retraumatise the poor patient & further exacerbate any anxiety/trauma related response.

 

[MrMagoo]

The hideous irony is that even if that theory were accurate, 'assisting' the patient to overcome it in such a brutal, agonising & terrifying manner manner, would only retraumatise the poor patient & further exacerbate any anxiety/trauma related response.

This is a great point, what therapy guidelines say immediate exposure therapy to all sources of distress is the way to treat them?

 

[Nightsong]

Yes, immediate. And as painful, debilitating and simply wretched as severe light & sound sensitivities can be, there are also other forms that either fewer people experience or we don't tend to discuss as much that can be harder to adapt to. For instance sensitivity to touch (in my case probably best described as cutaneous allodynia) can be unusually isolating as well as painful & overwhelming; not sure how many pwME experience something like this.

 

[Lou B Lou]

Yes, immediate. And as painful, debilitating and simply wretched as severe light & sound sensitivities can be, there are also other forms that either fewer people experience or we don't tend to discuss as much that can be harder to adapt to. For instance sensitivity to touch (in my case probably best described as cutaneous allodynia) can be unusually isolating as well as painful & overwhelming; not sure how many pwME experience something like this.

I was extremely sensitive to touch/weight on my skin during the worst years, in addition to the light and sound sensitivities. Sensitivities is too mild a word to describe the pain and horrors of those severe ME symptoms.

Also the word 'sensitivity' leads some seriously misguided HCPs to believe that the person needs to be gradually exposed to the aggravating issue (light, sound etc), to 'desensitize' them. ie to inflict actual pain torture on the sick person.

.

 

[Jonathan Edwards]

'assisting' the patient to overcome it in such a brutal, agonising & terrifying manner manner, would only retraumatise the poor patient & further exacerbate any anxiety/trauma related response.

Now that is what I call nous psychology. Like it is.

 

[JemPD]

Also the word 'sensitivity' leads some seriously misguided HCPs to believe that the person needs to be gradually exposed to the aggravating issue (light, sound etc), to 'desensitize' them. ie to inflict actual pain torture.

agreed.

Sensitivity is a terrible word, i've long been banging on about the inappropriateness of it, both here & elsewhere, but what can one replace it with? i dont know