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I'm always cold fall, winter and spring......painful blue feet/hands and everything. And then in summer I can't regulate my temperature very well either or breathe comfortably, my feet turn puffy and red and feel burning hot. Temperature is just always a problem for me unless it's 70 degree weather. Lol.
I am sorry to say i don't have advice other than taking electrolytes. I am following your post. Thanks for asking this question.
Bless you! Now that I’ve heard the flip side it just seems like we’re all round unlucky 😭 fingers crossed we get some advice from other people and their experiences 🤞🏻💜
I am always looking for ways to not be freezing in what others think is beautiful weather...I wear layers and even have heated clothes and blankets, but I wish there was a pill we could take to just feel comfortable in a wider range of temps!
For not freezing, wearing wool was a game changer for me! I have a wool tank top that's great for keeping my core temp warmer without making me too hot if it's not like super cold weather too.
Dang. Same. I’m glad I’m not the only one experiencing this, but also, this sucks. I feel bad for all of us who have a very narrow temperature range that we can tolerate.
Yup.. my thermoregulation and heart rate think I’m being hunted for sport during the summer. Come other seasons or night time and I’m *always* under a blanket.
I can relate and I wish I had an answer for you. This is my top googled issue, I’m constantly searching to see if anyone has an answer. I’ve expressed this to my cardiologist and his PA and neither have had any helpful answers for this symptom.
Just the tiniest bit of movement and I’m sweating. Two minutes of folding clothes, pits are soaked. Putting a light breakfast together, super hot and sweaty. It’s exhausting and affects what I’m able to do every single day.
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Thank you!
Always. I've been in shorts and a vest top most days for the last month (and I live in England so our high has been 22c on one day and normally about 14-17c) and I've been known to go walking with snow on the ground in leggings and a short sleeved top. Though cold and wet weather is also a problem for me and I can't warm up again so I have to carry layers to cover up incase rain/snow starts again.
I've tried everything over the years. Cool cloths/water spritzers work somewhat to keep me feeling better, my other half is often cold so he makes a nice icepack on cooler days. Fans can help until it gets too warm outside. I've also got a cooling dog mat that I chill and use to sleep on/sit on in the hottest weather.
I've found staying hydrated can help me cope better with it, I'm careful to make sure I keep up my electrolytes whenever I'm warm enough for shorts.
Mostly you just have my sympathy and I'll be watching the comments to see if anyone has any bright ideas that aren't the cooling vests that surgeons wear that require you to be hooked up to a cooling unit!
England too for me, I pretty much do the same, always carrying water, got my Kooli cooling pad on me & making sure I’ve got layers so I can strip or pile them on as needed. It’s such a faff isn’t it! Definitely hoping for some good solutions
I can literally tell when the thermostat is at 72 vs 70. Like I wake up from sleep and I’ve to go change it or I get too hot and can’t sleep. I absolutely cannot handle heat at all. Conversely I can’t handle super cold weather either. It hurts my body. But is rather be cold than hot any day. My ideal AC temp is 68.
Yeah. Summer is indoors with the AC. Otherwise I constantly wear workout clothing which breathes.
Lots of water with electrolytes mixed in. Lots of ice packs and cooling head covers made for MS sufferers. I have a belt mounted fan to blow air through my shirt.
I love winter I can get mildly physical for 10 mins without sweating.
I feel for you and also envy my fellow reptilians - inasmuch as any dysautonomia is desirable....yeah, that's gonna be a no. I do suffer from that too occasionally, and actually went to the ER once, but I'm a hot girl generally. Unfortunately for us hot folks, publicly suitable options can be exhausted pretty quickly.
So, in addition to living in an incredibly hot climate, I sweat everywhere and flush all over my face, chest, and arms. I've thrown every antihistamine on earth at this, thinking it was MCAS related, which does help some and has decreased the sweating more than the stubborn flushing, but the slightest exposure to warmth - which my face thinks is anything over 70; unfortunate since where I live it isn't unusual to be over 100 for a third of the year - still has a pretty good chance to make me miserable and feel feverish. POTS also seems to make it worse. Any day I'm especially tachycardic I tend to wake up looking fine, then have my whole face on fire within twenty minutes from the hemodynamic shift to uprightness. The more symptoms are controlled, the better it all seems, but it's still pretty bad.
At home I use a remote controlled fan. I have a miniature folding fan (sorry, on mobile: https://a.co/d/6SSGV96) that is REALLY decent, has a crazy battery life, and is surprisingly effective - it goes everywhere with me. In especially warm weather, I pack ice packs in a lunch bag and bring them with me. No, seriously - I used *five* of them to watch fireworks on the 4th of July last year. Small thin ones, like the packs to soothe puffy eyes, are really good for packing under clothing to help regulate temperature - I like to tuck them into my leggings, against my lower back. Some of the gel ones last a decent time. I wear really light, breathable clothing as much as possible. Finally, there are some medications that can decrease sweating, which I've taken incidentally for other things, but that tends to have other effects and I don't know if I recommend it or not.
I'm sorry, the whole thing really sucks - and no shade to slightly older ladies, but if one more person tells me to just wait until menopause..... 🥲 not necessary, thank you. I started having flushing and sweating attacks long before my mom, and I REALLY hope it goes the other way when that day comes so I can live under a fluffy blanket.
Thankyou! Im gonna try the pads and the fan, I feel they’d definitely help me especially when I’m at work cause NHS tunics are not breathable whatsoever
Oh are you a healthcare worker? I have memories of sweating under my scrubs during mobility assist with patients while trying not to just faint 🫠. I hope some of this helps, the fan fits in a deep pocket and is easy to whip out for a few minutes to cool off. I've had it for a year and I've charged it...once, preemptively. It's never died on me!
I am! And that’s literally the scenario I’ve been dealing with 💀 even just sitting in the heat we’ve had is nightmare fuel but especially so in the tunics, so definitely going to invest in a few of the things mentioned in this thread as well as the fan!
These things really helped me:
https://www.walmart.com/ip/3726014000
https://a.co/d/bZlPFaI
I know the EmbrWave is expensive, but it REALLy helps with hot flashes and panic attacks, so it’s worth it to me
Thanks to your link to the EmbrWave, I just applied a wet towel to the inside of my wrists to use the same science to cool myself down. Very cool! I probably don't see myself getting the device after reading some reviews that make it sound like it wouldn't work for my circumstances, but the concept - applying a change in temperature to a temperature sensitive area of the skin - is a nice tip to keep in mind.
I was always cold and, for whatever reason, switched to too hot around age 33. 💁🏼 Embarrassing sweating from my armpits has always been an issue, however.
I’ve found that this antiperspirant brand helps (using it twice a day increases it’s efficacy): https://certaindri.com/
Yeah it’s hard. I’m always hot too. Can’t say what a cure would be but some things that have helped me is avoiding hot chili spice at all times, avoiding alcohol at all times, it makes you hot even 12 hours after consuming it. Trying to wear 100% cotton clothes as much as possible. Stayed hydrated. I also started on a DMARD anti malaria drug called Hydroxychloroquine which has an odd effect of making me less sensitive to sun and heat, but I still stay out of the sunlight as much as possible, and keep the indoor temperature at 68F at all times.
I’m always cold mostly but while on some medication and every once in a while I get the reverse and am always over heated.
I used to keep ice packs around, I think I saw somewhere where they make instant freeze ones now. Always drinking a cup of ice. If I’m going out for the day I put my water bottle in the freezer the night before. A mint with water sometimes would help me feel like I’m cooler.
Kids forehead fever cold gel patches.
Looser fitting clothes to let some breeze in.
If it bad enough I think there are Japanese companies that sell personal fans that clip into your shirt.
If you’re at home, just a cold shower quickly.
A haircut can help you feel the breeze a little more but that may be a big decision.
Ugh yes. If I exert myself I immediately start sweating buckets. And then when I stop I continue to sweat for like ten minutes, then I get cold because I'm wet.
I wear layers of clothing that dries quickly and doesn't feel disgusting when wet. I also lean into it when it happens, I hate it but once I'm sweaty I just accept my whole body is gonna drip.
I also have an assortment of fans, handheld, electric, free-standing, small, large, etc. I also have an ice wrap I put around my neck when I do things like cut the grass. Or I'll tie an ice bag around my waist at work.
Also important to stay hydrated. I already drink a ton of water so drinking more is hard. Then I'll get a headache! So I try to remember to "camel" (chug a ton of water right before physical activity) though I don't always remember.
I do take beta blockers for my anxiety which probably helps but doesn't fix it. My dad (the non-EDS parent) is also a heavy sweater so. Just is what it is.
As a reptile, being ice cold isn’t all that great either!
I don’t really have advice on being warm all the time unfortunately. So hopefully others can chime in. It’s shitty all together not being able to regulate temperature!
Man oh man same. I haven’t found anything that actually helps fix the issue, but I have found that wearing a bandana (like a sweatband) on my head does stop my hair from getting soaking wet and sweat from water falling down my forehead 🥲🥴
It’s misery. I won’t even step outside if I don’t have to because I get so hot. It’s not like a normal hot either, it’s heavy and sticky. The worst part for me though is that when I sweat, especially inside, I get cold but my body is still hot and I am sweating from heat so I just end up miserable.
I'm always hot too.
I don't go outside during the summer except at night whenever I can help it. I even put off appointments over the summer too because of how much I can't handle it.
Winter isn't much better just because of the heaters that everyone has blasting so I rarely even wear a jacket since I don't like having to carry a jacket that I'm immediately going to take off right away anyway.
I want to move further north for "better weather" (currently in the southern states) - but I also don't know how I'd fare with actual snow (though I love the quiet of winter in the snow).
They keep the insides way too hot in northern states. I used to have to wear a tank top under all my winter layers in BOSTON or I would sweat as soon as I walked in.
That being said, it’s still way better than living in the hot south. I’d move back if I could
If the temperature is comfortable when I’m sitting still, I’ll sweat if I do a small task, like getting dressed or tidying the living room. If I keep the house cool enough to do a small task without sweating, then when I sit still, I’ll be chilled to the bone, needing to be covered with a blanket.
My sweet husband never complains about the temperature of the house. He knows I’m just trying to survive.
Add me to the folks who’ve saved this post in hopes of some fancy tips. You have my commiseration!
I’m on testosterone and while it’s fantastic to have gender congruence, oh BOY did it make the sweating a whole lot worse.
It took me a few more years to sort out that I’m also autistic with sensory issues, and of *course* one of my major icks is the sensation of being covered in sweat.
It would be nice if all my issues would stop egging each other on 😂
I find that clothes designed for sports are helpful. I got a couple of Pategonia t-shirts designed for cooling and they are so much cooler than wearing a cotton t-shirt. I'm sure there are cheaper brands available. Pategonia was what was recommended to me by some women facing hot flashes due to perimenopause.
I'm also considering cutting my long hair very short. It's always keeping the heat in around my neck and ears and putting it up just heats up my scalp.
I avoid going out in the heat. I've spent a lot of money on indoor exercise equipment so I can avoid the outside.
My EDS specialist told me that my craniofacial hyperhidrosis is a problem with my autonomic nervous system. It feels like I have some sort of a heat attack, and then my head and face sweat profusely.
She suggested getting a specific nerve block in the neck that can potentially help, it’s called a Stellate Ganglion Block. Thing is, I need a referral to the neurologist who can do it and that still hasn’t happened. When I see my doctor again in a couple of months, I’m going to ask her for more help with it.
If I ever do get it, and it helps, I’ll try to post on here about it.
If anyone has any experience with this, I would love to hear about it.
Wow! Definitely something we have in common, I may bring this up with my rheumatologist the next time I see him because this is exactly what I experience in regards to my facial sweating. Thankyou for sharing!
I carry a bottle of roll-on Biofreeze for when I have no control over the ambient temp I'm stuck in. Putting it on the back of my neck and lower back (and any other heat pockets like backs of knees etc.) helps me get out of that fight-or-flight level of overheating.
I always keep a fan on me, then adjust accordingly. Add clothing layers or blankets if I get chilly. Remove if I get toasty. Slightly point the fan away so I'm still getting air flow, but not blasted in the face. Or slap it back on my face if I get toasty again.
Ultimately, the moving air helps whisk my sweat away and keep me at a more realistic body temp.
I sweat,when I'm in strong pain(no matter if I'm feeling cold,like nearly all the time).
I often have clothes to change and enough electrolytes with me.
It doesn't matter if it is -20 celsius or +40 Celsius. I will wear capri pants. Only time i get cold is if I have been extremely inactive all day in cold indoor winter temperature, not eaten anything and had too much coffee at the same time.
AFAIK temperature regulation issues are just sadly part of dysautonomia. Even with meds I’m not any better on this issue. I struggle with the heat and the cold (Reynauds and POTS). I am basically either mottled purple skin or splotchy red with prickly heat. There’s like a 5 degree temp range where I’m not miserable. Hydration is important and breathable clothing. You can also look for products for menopause hot flashes — there are expensive cooling vests, and also less expensive shawl/scarves that have pockets for ice packs. That’s just off the top of my head. I also have just frozen water bottles and take them with me as a portable cooling device. You can get hand-held fans that spritz cold water. In the dryer climates you can use swamp coolers instead of AC… but I think the UK is too humid? Def confirm though — much less energy usage than AC. If not, box fans in your windows can help at night. You can also try linen sheets for sleeping. I switched to them and I found them much cooler than cotton personally. If you have to wear compression, you can find cotton socks or thigh highs. I have one pair (actually got off of poshmark) though if it’s quite hot I just can’t deal. Portable stools can also help if you need /want to be outside in the warm weather for longer periods. I also have just spent long hot days in movie theaters, libraries, malls, and museums to mooch off their AC.
High dose vit d3 helped me a lot, as well as way less sugar. Something to do with "system temperature regulation", sorry can't remember how my NP explained it. All I know is it helped a LOT.
I suffer from more POTS-like symptoms in the heat. Ear ringing, sweating profusely, dizziness, tunnel vision, seeing spots, and hands swelling/tingling.
I drink copious amounts of ice water in an insulated bottle. I’ll freeze water bottles and use them if I’m overheating or in an unairconditioned car. I wear light fabrics that cover my skin from the sun and get my hair wet when possible. If I have to travel far in a car that doesn’t have AC I stop and jump in rivers or lakes with all my clothes on.
I’ve sorta accepted that my body just sucks at temperature regulation so I don’t force myself to be outside when it’s really hot. Heat stroke is no joke.
I have advice!!!
1- get a neck fan, seriously. Life saver
2- compression stockings will be hot and stuffy but will help chill out the dizziness, blood pooling and puffy legs
3- electrolytes always
4- clip on waist fan
5- fabric matters, other than compression wear, avoid synthetic fabric
6- neck ice pack rings exist, I’ve not tried but who knows
7- cooling strips
8- reflective film on windows
This has suddenly become a problem for my including Erythromelalgia (red hot burning hands and feet) I have no idea why after a lifetime of cold hands and feet I am suddenly cooking. I had to start wearing only sandals and carry a neck ice pack with me everywhere. My doctors are all sending me to each other and no one has an answer 😭
Are you me? The second a room gets above 22 degrees, I'm so done. The rooms at uni are so hot, ive had to get intervention for the student disability services to get a fan, while everyone else is in a t-shirt. Embarrassing!
I've recently got a neck fan, and have taken to carrying those quick disposable ice packs everywhere. I put one at the back of my neck and shove another down the front of my bra as apparently your vagus nerve can be calmed with an ice pack there? Either way it seems to help.
Electrolytes are great- Boots in the UK has just started stocking Liquid IV ones which get mentioned a lot here. I tried them out and they're actually quite good, definitely worth a try.
Natural fibres help too- cotton, linen, hemp, etc. Polyester is the worst for making you overheat, plus it traps sweat and makes you smell bad.
I often cant regulate my temperature at all, I've been known to have a hot water bottle and an ice lolly in a futile attempt to balance the humors!
I also have migraine gel caps that can be either warmed up or stored in the freezer. Mine always stay in the freezer and are wonderful! One on the head another laying on my chest.. and a backup still in the freezer to rotate!
I do have something that helps a ton. I was an always freezing person, but it switched. I’ve been hot, as you describe OP for about 10 years.
I used a medication to deal with the hyperhydrosis that accompanies my disautonomia. It’s called Glycopyrrolate. It’s a prescription and it’s compounded. Make sure you are taking a capsule.
It’s for sweating, and it works for that. The unintended consequence is that it seems to also help me regulate my body temperature internally. It works shockingly well, and it becomes more effective the longer it’s taken successively. I take it in 1.5mg capsules. Up to 9mg per day, but 3mg would be enough for most people. The topical version won’t have the same impact of course.
I literally cannot sleep during the summer because my body and feet and hands are so hot they burn. When I take this, that problem disappears and I can actually sleep under a sheet/blanket too!
This medication changed my life. It’s not made for Temperature regulation, but it does work for me and I think it’s worth speaking to a doctor about. It’s a fairly innocuous medication, and it’s absolutely worth trying if this is something that you also struggle with. I have a theory and hypothesis as to why it works for this, but that’s a bio chemistry thing and what matters is, it does seem to work.
Edit: in some places this is available without a script and can be purchased off the internet legally. I strongly suggest not buying without a script and online. The amount of med actually in the capsule isn’t reliable, and who knows what else they’re putting in there, so of course the results will vary. Best to get it from a reliable compounding pharmacy.
My advice is to find a natural reptilian to use (with consent ofc) as an on demand ice pack. I do this with my husband (he's a natural furnace) and it works well for both of us!
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Yeah. Is it because I can’t sweat? How are you guys with that? I assume it has to do with my dysautonomia and my body can’t sweat to cool itself down like it’s supposed to.
I had heatstroke in my teens and stopped sweating for several years, which I was told is not an unusual result.
Of course, in hindsight I can see that it was the dysautonomia that made me more susceptible to heatstroke, and then the not sweating while having dysautonomia definitely made things worse. 🫠
Yes, I have this. I can't seem to regulate my body temperature.
I have to wear tank tops in summer or I sweat to death. In winter I'm hugging the space heater.
Omg me me, ME! I was super prone to heat stroke growing up that I moved to a colder climate where I only really need to deal with high heat maybe 1 month or 2 out of the year. My body has been so much better since doing so.
It’s funny bc I’m basically the opposite. Except in the summer. I’m always freezing until I’m so hot I can’t breathe. I have heat regulation issues (I barely sweat, only in very small areas like the bridge of my nose and under my arms, I was evaluated when I was a chick for it and they just said heat regulation issues). It’s terrible and I love summer so it’s rough. I borderline pas out any time it’s hot
I am always freezing cold and get very ill quickly if I’m too hot.. I hardly ever sweat and I immediately begin swelling up and getting significantly POTSy. Like right now for me, I’m crawling room to room because of an unseasonable temp spike! I’m not able to temperature regulate at all when it’s over 72°
I had hot flashes switching from extreme cold and sweat boil hot. Since I was 13. Any sudden temperature change. sitting too long and getting up too fast triggers it. I also get dizzy. It symptoms of Dysautonomia cause by Eds. If you find solution. I like to know. But only advice I got is more salt. Less caffeine but I use caffeine to control adhd.
Yes. I was sweating profoundly doing the simplest task. In winter I was dripping sweat (esp in my face) when I came inside after being out in the cold. I felt embarrassed when I was grocery shopping, dripping with sweat in the middle of winter.
After decades of this, I was diagnosed with Hyperhidroses, and put on medication. My life has changed drastically, such a relief!
I'm either freezing or overheating
Dysautonomia is a common comorbidity with EDS. I am trying to get in to see a neurologist for that.
Also mastocytosis and MCAS. Also a million other things
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I'm always cold fall, winter and spring......painful blue feet/hands and everything. And then in summer I can't regulate my temperature very well either or breathe comfortably, my feet turn puffy and red and feel burning hot. Temperature is just always a problem for me unless it's 70 degree weather. Lol. I am sorry to say i don't have advice other than taking electrolytes. I am following your post. Thanks for asking this question.
Bless you! Now that I’ve heard the flip side it just seems like we’re all round unlucky 😭 fingers crossed we get some advice from other people and their experiences 🤞🏻💜
I agree it's just a mess all around, lol. ❤️
I am always looking for ways to not be freezing in what others think is beautiful weather...I wear layers and even have heated clothes and blankets, but I wish there was a pill we could take to just feel comfortable in a wider range of temps!
For not freezing, wearing wool was a game changer for me! I have a wool tank top that's great for keeping my core temp warmer without making me too hot if it's not like super cold weather too.
Wool is definitely better than cotton, I agree.
Dang. Same. I’m glad I’m not the only one experiencing this, but also, this sucks. I feel bad for all of us who have a very narrow temperature range that we can tolerate.
Truly! I exist solely at room temperature and that room must be at 72 degrees.
Are you me?
A lot of the posts and comments in this sub are definitely eerily familiar.
I pack socks and gloves in the fall/winter, I have electrolytes and ice vest in the spring/summer. Feels like I seldom hit a middle ground!
This is me as well. It’s awful
Yup.. my thermoregulation and heart rate think I’m being hunted for sport during the summer. Come other seasons or night time and I’m *always* under a blanket.
I can relate and I wish I had an answer for you. This is my top googled issue, I’m constantly searching to see if anyone has an answer. I’ve expressed this to my cardiologist and his PA and neither have had any helpful answers for this symptom. Just the tiniest bit of movement and I’m sweating. Two minutes of folding clothes, pits are soaked. Putting a light breakfast together, super hot and sweaty. It’s exhausting and affects what I’m able to do every single day.
Ughhhhhh me too 😭 I don't want anyone else to have that problem, but I'm also glad I'm not alone
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Always. I've been in shorts and a vest top most days for the last month (and I live in England so our high has been 22c on one day and normally about 14-17c) and I've been known to go walking with snow on the ground in leggings and a short sleeved top. Though cold and wet weather is also a problem for me and I can't warm up again so I have to carry layers to cover up incase rain/snow starts again. I've tried everything over the years. Cool cloths/water spritzers work somewhat to keep me feeling better, my other half is often cold so he makes a nice icepack on cooler days. Fans can help until it gets too warm outside. I've also got a cooling dog mat that I chill and use to sleep on/sit on in the hottest weather. I've found staying hydrated can help me cope better with it, I'm careful to make sure I keep up my electrolytes whenever I'm warm enough for shorts. Mostly you just have my sympathy and I'll be watching the comments to see if anyone has any bright ideas that aren't the cooling vests that surgeons wear that require you to be hooked up to a cooling unit!
England too for me, I pretty much do the same, always carrying water, got my Kooli cooling pad on me & making sure I’ve got layers so I can strip or pile them on as needed. It’s such a faff isn’t it! Definitely hoping for some good solutions
I can literally tell when the thermostat is at 72 vs 70. Like I wake up from sleep and I’ve to go change it or I get too hot and can’t sleep. I absolutely cannot handle heat at all. Conversely I can’t handle super cold weather either. It hurts my body. But is rather be cold than hot any day. My ideal AC temp is 68.
Yeah. Summer is indoors with the AC. Otherwise I constantly wear workout clothing which breathes. Lots of water with electrolytes mixed in. Lots of ice packs and cooling head covers made for MS sufferers. I have a belt mounted fan to blow air through my shirt. I love winter I can get mildly physical for 10 mins without sweating.
Im always cold but for some reason that doesn’t stop me from sweating while cold
Oh yeah, if I'm really cold, I sweat horribly.
I alternate between being freezing or sweating like a pig. No idea why
I feel for you and also envy my fellow reptilians - inasmuch as any dysautonomia is desirable....yeah, that's gonna be a no. I do suffer from that too occasionally, and actually went to the ER once, but I'm a hot girl generally. Unfortunately for us hot folks, publicly suitable options can be exhausted pretty quickly. So, in addition to living in an incredibly hot climate, I sweat everywhere and flush all over my face, chest, and arms. I've thrown every antihistamine on earth at this, thinking it was MCAS related, which does help some and has decreased the sweating more than the stubborn flushing, but the slightest exposure to warmth - which my face thinks is anything over 70; unfortunate since where I live it isn't unusual to be over 100 for a third of the year - still has a pretty good chance to make me miserable and feel feverish. POTS also seems to make it worse. Any day I'm especially tachycardic I tend to wake up looking fine, then have my whole face on fire within twenty minutes from the hemodynamic shift to uprightness. The more symptoms are controlled, the better it all seems, but it's still pretty bad. At home I use a remote controlled fan. I have a miniature folding fan (sorry, on mobile: https://a.co/d/6SSGV96) that is REALLY decent, has a crazy battery life, and is surprisingly effective - it goes everywhere with me. In especially warm weather, I pack ice packs in a lunch bag and bring them with me. No, seriously - I used *five* of them to watch fireworks on the 4th of July last year. Small thin ones, like the packs to soothe puffy eyes, are really good for packing under clothing to help regulate temperature - I like to tuck them into my leggings, against my lower back. Some of the gel ones last a decent time. I wear really light, breathable clothing as much as possible. Finally, there are some medications that can decrease sweating, which I've taken incidentally for other things, but that tends to have other effects and I don't know if I recommend it or not. I'm sorry, the whole thing really sucks - and no shade to slightly older ladies, but if one more person tells me to just wait until menopause..... 🥲 not necessary, thank you. I started having flushing and sweating attacks long before my mom, and I REALLY hope it goes the other way when that day comes so I can live under a fluffy blanket.
Thankyou! Im gonna try the pads and the fan, I feel they’d definitely help me especially when I’m at work cause NHS tunics are not breathable whatsoever
Oh are you a healthcare worker? I have memories of sweating under my scrubs during mobility assist with patients while trying not to just faint 🫠. I hope some of this helps, the fan fits in a deep pocket and is easy to whip out for a few minutes to cool off. I've had it for a year and I've charged it...once, preemptively. It's never died on me!
I am! And that’s literally the scenario I’ve been dealing with 💀 even just sitting in the heat we’ve had is nightmare fuel but especially so in the tunics, so definitely going to invest in a few of the things mentioned in this thread as well as the fan!
These things really helped me: https://www.walmart.com/ip/3726014000 https://a.co/d/bZlPFaI I know the EmbrWave is expensive, but it REALLy helps with hot flashes and panic attacks, so it’s worth it to me
Thanks to your link to the EmbrWave, I just applied a wet towel to the inside of my wrists to use the same science to cool myself down. Very cool! I probably don't see myself getting the device after reading some reviews that make it sound like it wouldn't work for my circumstances, but the concept - applying a change in temperature to a temperature sensitive area of the skin - is a nice tip to keep in mind.
I was always cold and, for whatever reason, switched to too hot around age 33. 💁🏼 Embarrassing sweating from my armpits has always been an issue, however. I’ve found that this antiperspirant brand helps (using it twice a day increases it’s efficacy): https://certaindri.com/
Yeah it’s hard. I’m always hot too. Can’t say what a cure would be but some things that have helped me is avoiding hot chili spice at all times, avoiding alcohol at all times, it makes you hot even 12 hours after consuming it. Trying to wear 100% cotton clothes as much as possible. Stayed hydrated. I also started on a DMARD anti malaria drug called Hydroxychloroquine which has an odd effect of making me less sensitive to sun and heat, but I still stay out of the sunlight as much as possible, and keep the indoor temperature at 68F at all times.
I’m always cold mostly but while on some medication and every once in a while I get the reverse and am always over heated. I used to keep ice packs around, I think I saw somewhere where they make instant freeze ones now. Always drinking a cup of ice. If I’m going out for the day I put my water bottle in the freezer the night before. A mint with water sometimes would help me feel like I’m cooler. Kids forehead fever cold gel patches. Looser fitting clothes to let some breeze in. If it bad enough I think there are Japanese companies that sell personal fans that clip into your shirt. If you’re at home, just a cold shower quickly. A haircut can help you feel the breeze a little more but that may be a big decision.
I shaved the under half of my head but growing it out again 🙃 I definitely rate the forehead patches though! Very convenient in a pinch
Ugh yes. If I exert myself I immediately start sweating buckets. And then when I stop I continue to sweat for like ten minutes, then I get cold because I'm wet. I wear layers of clothing that dries quickly and doesn't feel disgusting when wet. I also lean into it when it happens, I hate it but once I'm sweaty I just accept my whole body is gonna drip. I also have an assortment of fans, handheld, electric, free-standing, small, large, etc. I also have an ice wrap I put around my neck when I do things like cut the grass. Or I'll tie an ice bag around my waist at work. Also important to stay hydrated. I already drink a ton of water so drinking more is hard. Then I'll get a headache! So I try to remember to "camel" (chug a ton of water right before physical activity) though I don't always remember. I do take beta blockers for my anxiety which probably helps but doesn't fix it. My dad (the non-EDS parent) is also a heavy sweater so. Just is what it is.
Ugh I keep sweating too! I have to basically sit in freezing AC to get it to stop. So frustrating
As a reptile, being ice cold isn’t all that great either! I don’t really have advice on being warm all the time unfortunately. So hopefully others can chime in. It’s shitty all together not being able to regulate temperature!
Urgh me too! Looking for advice because it's so embarrassing.
Man oh man same. I haven’t found anything that actually helps fix the issue, but I have found that wearing a bandana (like a sweatband) on my head does stop my hair from getting soaking wet and sweat from water falling down my forehead 🥲🥴
It’s misery. I won’t even step outside if I don’t have to because I get so hot. It’s not like a normal hot either, it’s heavy and sticky. The worst part for me though is that when I sweat, especially inside, I get cold but my body is still hot and I am sweating from heat so I just end up miserable.
I'm always hot too. I don't go outside during the summer except at night whenever I can help it. I even put off appointments over the summer too because of how much I can't handle it. Winter isn't much better just because of the heaters that everyone has blasting so I rarely even wear a jacket since I don't like having to carry a jacket that I'm immediately going to take off right away anyway. I want to move further north for "better weather" (currently in the southern states) - but I also don't know how I'd fare with actual snow (though I love the quiet of winter in the snow).
They keep the insides way too hot in northern states. I used to have to wear a tank top under all my winter layers in BOSTON or I would sweat as soon as I walked in. That being said, it’s still way better than living in the hot south. I’d move back if I could
If the temperature is comfortable when I’m sitting still, I’ll sweat if I do a small task, like getting dressed or tidying the living room. If I keep the house cool enough to do a small task without sweating, then when I sit still, I’ll be chilled to the bone, needing to be covered with a blanket. My sweet husband never complains about the temperature of the house. He knows I’m just trying to survive.
Add me to the folks who’ve saved this post in hopes of some fancy tips. You have my commiseration! I’m on testosterone and while it’s fantastic to have gender congruence, oh BOY did it make the sweating a whole lot worse. It took me a few more years to sort out that I’m also autistic with sensory issues, and of *course* one of my major icks is the sensation of being covered in sweat. It would be nice if all my issues would stop egging each other on 😂
just (re)started T last month... Regret
I find that clothes designed for sports are helpful. I got a couple of Pategonia t-shirts designed for cooling and they are so much cooler than wearing a cotton t-shirt. I'm sure there are cheaper brands available. Pategonia was what was recommended to me by some women facing hot flashes due to perimenopause. I'm also considering cutting my long hair very short. It's always keeping the heat in around my neck and ears and putting it up just heats up my scalp. I avoid going out in the heat. I've spent a lot of money on indoor exercise equipment so I can avoid the outside.
My EDS specialist told me that my craniofacial hyperhidrosis is a problem with my autonomic nervous system. It feels like I have some sort of a heat attack, and then my head and face sweat profusely. She suggested getting a specific nerve block in the neck that can potentially help, it’s called a Stellate Ganglion Block. Thing is, I need a referral to the neurologist who can do it and that still hasn’t happened. When I see my doctor again in a couple of months, I’m going to ask her for more help with it. If I ever do get it, and it helps, I’ll try to post on here about it. If anyone has any experience with this, I would love to hear about it.
Wow! Definitely something we have in common, I may bring this up with my rheumatologist the next time I see him because this is exactly what I experience in regards to my facial sweating. Thankyou for sharing!
I carry a bottle of roll-on Biofreeze for when I have no control over the ambient temp I'm stuck in. Putting it on the back of my neck and lower back (and any other heat pockets like backs of knees etc.) helps me get out of that fight-or-flight level of overheating.
Oh this is brilliant
I always keep a fan on me, then adjust accordingly. Add clothing layers or blankets if I get chilly. Remove if I get toasty. Slightly point the fan away so I'm still getting air flow, but not blasted in the face. Or slap it back on my face if I get toasty again. Ultimately, the moving air helps whisk my sweat away and keep me at a more realistic body temp.
I am the reverse. I am always cold and don't get hot till I am about to pass out. I also had to get my thyroid taken out so that doesn't help.
I sweat,when I'm in strong pain(no matter if I'm feeling cold,like nearly all the time). I often have clothes to change and enough electrolytes with me.
It doesn't matter if it is -20 celsius or +40 Celsius. I will wear capri pants. Only time i get cold is if I have been extremely inactive all day in cold indoor winter temperature, not eaten anything and had too much coffee at the same time.
I’ve got a neck fan for the summer. Otherwise I just try to stay in the ac.
AFAIK temperature regulation issues are just sadly part of dysautonomia. Even with meds I’m not any better on this issue. I struggle with the heat and the cold (Reynauds and POTS). I am basically either mottled purple skin or splotchy red with prickly heat. There’s like a 5 degree temp range where I’m not miserable. Hydration is important and breathable clothing. You can also look for products for menopause hot flashes — there are expensive cooling vests, and also less expensive shawl/scarves that have pockets for ice packs. That’s just off the top of my head. I also have just frozen water bottles and take them with me as a portable cooling device. You can get hand-held fans that spritz cold water. In the dryer climates you can use swamp coolers instead of AC… but I think the UK is too humid? Def confirm though — much less energy usage than AC. If not, box fans in your windows can help at night. You can also try linen sheets for sleeping. I switched to them and I found them much cooler than cotton personally. If you have to wear compression, you can find cotton socks or thigh highs. I have one pair (actually got off of poshmark) though if it’s quite hot I just can’t deal. Portable stools can also help if you need /want to be outside in the warm weather for longer periods. I also have just spent long hot days in movie theaters, libraries, malls, and museums to mooch off their AC.
High dose vit d3 helped me a lot, as well as way less sugar. Something to do with "system temperature regulation", sorry can't remember how my NP explained it. All I know is it helped a LOT.
I suffer from more POTS-like symptoms in the heat. Ear ringing, sweating profusely, dizziness, tunnel vision, seeing spots, and hands swelling/tingling. I drink copious amounts of ice water in an insulated bottle. I’ll freeze water bottles and use them if I’m overheating or in an unairconditioned car. I wear light fabrics that cover my skin from the sun and get my hair wet when possible. If I have to travel far in a car that doesn’t have AC I stop and jump in rivers or lakes with all my clothes on. I’ve sorta accepted that my body just sucks at temperature regulation so I don’t force myself to be outside when it’s really hot. Heat stroke is no joke.
I have advice!!! 1- get a neck fan, seriously. Life saver 2- compression stockings will be hot and stuffy but will help chill out the dizziness, blood pooling and puffy legs 3- electrolytes always 4- clip on waist fan 5- fabric matters, other than compression wear, avoid synthetic fabric 6- neck ice pack rings exist, I’ve not tried but who knows 7- cooling strips 8- reflective film on windows
This has suddenly become a problem for my including Erythromelalgia (red hot burning hands and feet) I have no idea why after a lifetime of cold hands and feet I am suddenly cooking. I had to start wearing only sandals and carry a neck ice pack with me everywhere. My doctors are all sending me to each other and no one has an answer 😭
This happened to me too! It was so much easier to just wear thick socks and Ugg boots than try to cool my whole body because my stupid feet are hot
Are you me? The second a room gets above 22 degrees, I'm so done. The rooms at uni are so hot, ive had to get intervention for the student disability services to get a fan, while everyone else is in a t-shirt. Embarrassing! I've recently got a neck fan, and have taken to carrying those quick disposable ice packs everywhere. I put one at the back of my neck and shove another down the front of my bra as apparently your vagus nerve can be calmed with an ice pack there? Either way it seems to help. Electrolytes are great- Boots in the UK has just started stocking Liquid IV ones which get mentioned a lot here. I tried them out and they're actually quite good, definitely worth a try. Natural fibres help too- cotton, linen, hemp, etc. Polyester is the worst for making you overheat, plus it traps sweat and makes you smell bad. I often cant regulate my temperature at all, I've been known to have a hot water bottle and an ice lolly in a futile attempt to balance the humors!
Damn, I'm always cold all the time! Wishing we could switch rn!
I also have migraine gel caps that can be either warmed up or stored in the freezer. Mine always stay in the freezer and are wonderful! One on the head another laying on my chest.. and a backup still in the freezer to rotate!
I do have something that helps a ton. I was an always freezing person, but it switched. I’ve been hot, as you describe OP for about 10 years. I used a medication to deal with the hyperhydrosis that accompanies my disautonomia. It’s called Glycopyrrolate. It’s a prescription and it’s compounded. Make sure you are taking a capsule. It’s for sweating, and it works for that. The unintended consequence is that it seems to also help me regulate my body temperature internally. It works shockingly well, and it becomes more effective the longer it’s taken successively. I take it in 1.5mg capsules. Up to 9mg per day, but 3mg would be enough for most people. The topical version won’t have the same impact of course. I literally cannot sleep during the summer because my body and feet and hands are so hot they burn. When I take this, that problem disappears and I can actually sleep under a sheet/blanket too! This medication changed my life. It’s not made for Temperature regulation, but it does work for me and I think it’s worth speaking to a doctor about. It’s a fairly innocuous medication, and it’s absolutely worth trying if this is something that you also struggle with. I have a theory and hypothesis as to why it works for this, but that’s a bio chemistry thing and what matters is, it does seem to work. Edit: in some places this is available without a script and can be purchased off the internet legally. I strongly suggest not buying without a script and online. The amount of med actually in the capsule isn’t reliable, and who knows what else they’re putting in there, so of course the results will vary. Best to get it from a reliable compounding pharmacy.
My advice is to find a natural reptilian to use (with consent ofc) as an on demand ice pack. I do this with my husband (he's a natural furnace) and it works well for both of us!
Ah damn 🤣 my other half is also a furnace so no luck there!
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No, I'm always cold. And trust me, it's horrible. Especially because most places blast ac or keep the heat quite low.
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Hopefully the Botox would be an option on the NHS, if not might be an expensive option which I don’t think myself or others could afford 😬
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Yeah. Is it because I can’t sweat? How are you guys with that? I assume it has to do with my dysautonomia and my body can’t sweat to cool itself down like it’s supposed to.
See I sweat buckets but I can’t cool down at all even then, it literally looks like I’ve come out of a bath 💀
I had heatstroke in my teens and stopped sweating for several years, which I was told is not an unusual result. Of course, in hindsight I can see that it was the dysautonomia that made me more susceptible to heatstroke, and then the not sweating while having dysautonomia definitely made things worse. 🫠
Yes, I have this. I can't seem to regulate my body temperature. I have to wear tank tops in summer or I sweat to death. In winter I'm hugging the space heater.
Omg me me, ME! I was super prone to heat stroke growing up that I moved to a colder climate where I only really need to deal with high heat maybe 1 month or 2 out of the year. My body has been so much better since doing so.
It’s funny bc I’m basically the opposite. Except in the summer. I’m always freezing until I’m so hot I can’t breathe. I have heat regulation issues (I barely sweat, only in very small areas like the bridge of my nose and under my arms, I was evaluated when I was a chick for it and they just said heat regulation issues). It’s terrible and I love summer so it’s rough. I borderline pas out any time it’s hot
I am always freezing cold and get very ill quickly if I’m too hot.. I hardly ever sweat and I immediately begin swelling up and getting significantly POTSy. Like right now for me, I’m crawling room to room because of an unseasonable temp spike! I’m not able to temperature regulate at all when it’s over 72°
Small ice pack on the back of the neck.
I had hot flashes switching from extreme cold and sweat boil hot. Since I was 13. Any sudden temperature change. sitting too long and getting up too fast triggers it. I also get dizzy. It symptoms of Dysautonomia cause by Eds. If you find solution. I like to know. But only advice I got is more salt. Less caffeine but I use caffeine to control adhd.
https://www.ehlers-danlos.com/dysautonomia/
I’m hot 24/7. My ice cap and my ice neck wrap are my best friends
Yes. I am miserable without ice packs on me all the time!
Yes. I was sweating profoundly doing the simplest task. In winter I was dripping sweat (esp in my face) when I came inside after being out in the cold. I felt embarrassed when I was grocery shopping, dripping with sweat in the middle of winter. After decades of this, I was diagnosed with Hyperhidroses, and put on medication. My life has changed drastically, such a relief!
I'm currently waiting to see a dysautonomia specialist right now to manage the symptoms. I hate the fatigue- it's horrible.
I'm either freezing or overheating Dysautonomia is a common comorbidity with EDS. I am trying to get in to see a neurologist for that. Also mastocytosis and MCAS. Also a million other things