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MECFS sympton: temperature dysregulation 

This is a symptom I experience a lot, but you don't always hear much about it. ME Action have written a post on temperature dysregulation which I thought might be helpful for others meaction.net/2022/06/23/facets.

@mecfs @chronicillness

Am really glad I shared that article about temperature dysregulation in . Some ME symptoms can be so weird. and even after all these years, I wonder if somehow I'm just faking it (ableism is such a drug). Knowing others go through the same thing helps me feel less alone, and validated.

Btw: it might be useful for people with too - see link in above post.

@mecfs @chronicillness @longcovid

MECFS sympton: temperature dysregulation 

@GwenfarsGarden @RayFintano sorry falls du der Gruppe eh schon folgst oder sowas nicht sehen möchtest aber hab gedacht vielleicht ist das interessant für dich 🤗

MECFS sympton: temperature dysregulation 

@GwenfarsGarden @mecfs @chronicillness I struggle a lot with temperature regulation, it’s always nice to know that it’s not just me.

MECFS sympton: temperature dysregulation 

@ArchieTheWonderDog I feel like that too. It's a daily problem for me but it doesn't get mentioned much. This is the first time I've seen an article about temperature disregulation in

MECFS sympton: temperature dysregulation 

@GwenfarsGarden I usually talk about it as dysautonomia and/or thermal dysregulation.
Maybe that's terms you've seen?
@ArchieTheWonderDog

MECFS sympton: temperature dysregulation 

@maloki @ArchieTheWonderDog I have seen those terms. In fact, when we were first trying to get me diagnosed, my partner thought I might have Dysautonomia as a main prognosis. I think Dysa. is a common part of ME - not sure where one ends and the other begins to be honest.

It's good knowing others experience it too, and some of the terms they use.

MECFS sympton: temperature dysregulation 

@GwenfarsGarden Yeah, basically dysautonimia is everything that's not regulated properly automatically in the body anymore.
So it covers a lot of stuff, I believe POTS is under dysautonimia.
(yes: "POTS is a form of dysautonomia — a disorder of the autonomic nervous system.")

@ArchieTheWonderDog

MECFS sympton: temperature dysregulation 

@maloki @ArchieTheWonderDog ah, that explains it. Thanks Maloki!

MECFS sympton: temperature dysregulation 

@GwenfarsGarden @maloki @ArchieTheWonderDog Yep. Part of dysautonomia is that our homeostasis is slow and inefficient.

Whereas other people's nervous and endocrine systems keep them at a fairly stable felt temperature, heart rate, etc. (all else equal), ours fluctuates more and takes longer to come back to "baseline."

MECFS sympton: temperature dysregulation 

@naga @maloki @ArchieTheWonderDog Ah, that really explains it well too. Thanks.

I'm so glad I shared this because it's been so nice hearing from others having this problem, and learning from them too.

MECFS sympton: temperature dysregulation 

@GwenfarsGarden @mecfs ugh temp dysregulation has been killing me so badly this winter. i struggle to leave the house because my choice is single layer and freeze to death or more then one layers and struggle with overheating. it’s probably my least favorite symptom of cfs

MECFS sympton: temperature dysregulation 

@foxes it's a daily problem for me too. From being chilled to over heating and back, it's very hard to find a balance. And it uses energy dealing with it!

I'm glad I shared this and am finding others who experience this too.

MECFS sympton: temperature dysregulation 

@GwenfarsGarden I’ve gone from being so overheated i wanted to strip, to bring so cold i was wearing a hoodie and a blanket, in 5 minutes. i do find breathing exercises and drinking and eating and staying still all help somewhat to cool (figuratively), have you got any tips? i find also that it calms down in summer because it doesn’t have to work as hard to meet a good internal temp (i am guessing at that bit)

MECFS sympton: temperature dysregulation 

@GwenfarsGarden though the one exception to that is when I’m trying to sleep and my body goes “time to go into meltdown, disable cooling circuts”

MECFS sympton: temperature dysregulation 

@foxes OMG, yes! I really did think that was just me, so it's nice to know someone else has this problem too. For some reason, it's particularly bad in my legs, so I have to try to get to sleep with part of my body under the doona, but my legs sticking out!

MECFS sympton: temperature dysregulation 

@GwenfarsGarden yes!! weirdly I’ve found that sometimes if im overheating i need more blankets on my legs rather then less? i can never tell when i need more or less so it’s experimention every time

MECFS sympton: temperature dysregulation 

@foxes That's the thing about ME, it's always different and one time what effects us will be different the next time.

MECFS sympton: temperature dysregulation 

@GwenfarsGarden yeah for sure! i have discovered that avoiding triggering overheating while wrapping for going out in winter, is to put some clothing on, then let your body adjust to the new insulation, and repeat

MECFS sympton: temperature dysregulation 

@foxes that's a good idea, I'll use that :)

MECFS sympton: temperature dysregulation 

@foxes I have the exact same problem! I'll take ages to get warm, then all of a sudden, I'll overheat, try and cool down, and am then suddenly freezing. The time of year doesn't always matter for me either. It sends me around the bend!

The one thing that helps with the overheating, is I have these little desk type fans that you can recharge via a USB. I have one upstairs and one downstairs (coz you know, stairs are exhausting), and it helps cool me down a bit quicker and reduce quite how exhausting I find it. And I keep a hand held fan in my bag at all times, which is useful when I'm out an about.

For dealing with cold, I have some thermal leggings, hiking socks etc, to help keep me warm. Plus, an electric blanket on the bed (under the bed clothes).

Nothing stops the temperature dysregulation itself, but these things help me manage it a bit better.

MECFS sympton: temperature dysregulation 

@GwenfarsGarden i have a hand fan for when im out and about even if it’s cold ;p

MECFS sympton: temperature dysregulation 

@foxes totes. I often use both types of fans in winter. ME is weird

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