Poll: Does your ME cause any reduction in sensitivities?

[Wishful]

I noticed several threads recently about sensitivity to light, heat, cold, and other factors. Since ME seems to be making some neural areas more sensitive, I was wondering if it might be mainly unidirectional: increased. If that's statistically strong, it might be worth pursuing as a clue to how it works. More receptors being produced? More of a certain chemical being produced? More reactivity of an enzyme?

ME might indirectly result in some physical changes, making skin thinner or whatever, but that doesn't count as neurological sensitivity.

 

[hapl808]

Interesting thought, although I'd say the poll is worded a bit confusing.

I think every sensitivity I can think of has gotten worse. Can't think of any reduction in sensitivity - heat, cold, sound, light, muscle damage, scents, smoke, pollution, allergies, etc.

 

[Rufous McKinney]

a bit confusing.

yeah....I stared at this for a while, and came to a similar conclusion you did: mostly it gets worse....

I experienced the following not related to sensitivities.......

I had very intense POTS develop with all the classic obvious symptoms when I was not home for three months visiting my daughter. In a state of rolling PEM and not pacing enough, it got VERY INTENSE. (in 2019)

I don't "experience" those symptoms as intensely, altho I think my OI is actually worse now. Im also on a whole lot more BP pills now, than at that time.

 

[Wishful]

Can you think of better wording? By reduced sensitivities I had in mind dimmer vision, weaker hearing, loss of touch sensitivity, less ability to sense heat, etc. I don't recall complaints about that, except maybe loss of touch sensitivity. I thought some actual statistical data from a poll would be helpful.

Our senses depend on certain mechanisms involving firing of neurons, which I think involves receptors and priming (maintaining levels of sodium and potassium, for example). If ME is only affecting those one way, it might be possible to identify the mechanism. Maybe, for example, a deficiency in cells of some nutrient lowers the firing threshold. Whatever it is, it seems to be affecting sensory neurons in multiple areas of the brain in the same way. To me, that sounds like a useful clue to understanding what's going wrong.

 

[Dude]

Not a reduction but, I have developed an increased sensitivity to cold on the hands. i notice it especially in winter when i wash my hands with cold water. I wonder if it's the reduced blood flow? Anybody else?

 

[hapl808]

Can you think of better wording?

Hmm, good question.

Has your ME decreased any of your responses to stimuli?

But even that is probably confusing. I think maybe it's better as a question than a poll, because the answers are more qualitative than quantitative.

Pretty much all my senses are more acute or intolerant. Sight, sound, conversation, scents, even taste (not always in a good way). The problem is that sensitivity always seems to be bad - not like I have a finer sense of smell, but just that sometimes very slight scents will bother me. Not sure if that makes sense. Or if I unwrap a trash bag or grocery bag and I'll immediately start coughing because of some trigger - no idea what causes it, though. If I wear a good enough mask, zero coughing. Doesn't seem to be a mental trigger because it would happen for years before I realized that it was related to what I was doing sometimes. Maybe not classic MCAS, but related in some way.

 

[Judee]

What about, "Has your sensory processing ability diminished since you became ill with ME?"

And like the others, again for me, I think it's actually heightened and more so though my disease goes so far back that it's hard to remember.

I've always had this feeling though that the conditions of ME and Autism (with it's hypersensory perception) have some kind of overlap and why we have a hard time with noise, light, cold, heat, chemicals, etc.

Everything gets to be system overload pretty quickly.

Edit: Unless you're talking about processing those things in your brain and where brain fog might get in the way but I still think reflexes would take over...like picking up a very hot cup of coffee...even if you're feeling esp brain foggy, you're probably still going to put the cup down if it's burning your fingers.

@Wishful, do you feel like all that has gone sort of numb on you? I know you seem to be able to go out into the coldest of weather and endure long walks in it without problem.

Do you think something is keeping you from feeling those sensations. ??? In this thread you mentioned something like that. https://forums.phoenixrising.me/thr...k-new-problem-anyone-else.81789/#post-2304168

 

[Wishful]

I blame the ICC for the confusion. "Sensitivity" is not a medical symptom. "Light sensitivity" is otherwise known as "vision". The symptom is hypersensitivity. I tried changing the question to "Does your ME cause hyposensitivity, but apparently I can't change that.

 

[Wishful]

@Wishful, do you feel like all that has gone sort of numb on you?

No, my responses to stimuli seem normal. Yes I can tolerate hours outdoors at -40 (while suitably dressed), but I could do that before ME too, so that's unchanged. I still stop and smell the roses (wild roses smell wonderful), so I think my sense of smell is normal. Taste, touch, hearing all seem normal too (except tinnitus, but I had that before ME too). Sight is lousy, but it's always been bad.

 

[Blue Jay]

I'd say the poll is worded a bit confusing.

I thought it was my brain fog that had got worse! I'd say my sensitivities have all worsened and become even more acute since having covid last October.

d. I still stop and smell the roses

I seem able to tolerate, and mostly enjoy, plant and flower scents when outdoors but can't stand them inside the house.

 

[JasonPerth]

Not a reduction but, I have developed an increased sensitivity to cold on the hands. i notice it especially in winter when i wash my hands with cold water. I wonder if it's the reduced blood flow? Anybody else?

Hey i just saw this,
This year i have deteriorated from a mild 6/10 to a housebound 1/10
New things like POTS ive never had before
Aswell as getting dizzy when standing up (especially if i stand up and look up aswell)
And also aswell as having a more very red foot when standing in a warm shower, that swells up abit.

I also get extreme cold hands at the moment, like you, especially after running under some cold water.
I just washed some plates for about 10 seconds
And although i have the heater on an hour later, my hand/fingers are still freezing so much

Never happened to me before to this extent, only since I deteriorated with all the other Pots, Dysautonomia symptoms