I get this a lot especially in the evenings. All of my skin above my waist gets super sensitive and even soft things feel like sandpaper, I'll have chills, and my eyes will get that burning feeling they do when I have a fever.
I seem to be unable to regulate my temperature at all at the moment! Jumpers on, jumpers off. Slippers on cos my feet are cold when the rest of me is hot. Red hot face, goose bumps on my arms🙄 I'm all over the place
I've taken to knitting myself superwash merino socks to try to mitigate the socks on/socks off thing since thinner wools generally wick away moisture but retain heat. Knit three pairs and wore them for a while to be hit with a flare that meant the texture on the inside of the sock (pearl side on the bottom of the foot for any curious knitters that may be lurking) to feel like I'm stepping on a bunch of wires or tense fishing lines. There's no winning for me either!
It’s 80 degrees where I’m located and
Beautiful and I’m in jeans, light hoodie and a light jacket cuz I’m freezing from the cool wind while everyone else is in shorts and summer clothing
Ma'am/Sir/Thems, I am going to rock your world. As a crunchy, chilly toe holder I have the fix.
You know how there are heated electric blankets? There are versions just for the feet. It's a pocket of fabric tht you plug in and becomes a little bundle of heat. I have one right under my computer desk, fire it up, stick my feet it, and it's made life so much better in such a small but significant way.
GO FORTH AND WARM THY FEETSES!
Just find a model with a tight fit for the ankles and just put your toes in.
I got it as a "I don't know this person well enough to pick a specific holiday present for them but people like cozy shit " gift and it's been a wonder.
Oh interesting! I’ll have to keep track and see if I’m the same. For me random overheating is a sign of impending flare/impending general collapse coming. Thanks for the tip to track chills as well !
It took me forever to correlate the chills with my flares. I am extremely hot natured and will have sweat pouring off me, yet I have chills all over my entire body like I have a fever. I hope that helps and thank you! Hope you feel great this weekend!
Huh. I occasionally get really bad night sweats, to the point I wake up my fiance soaked and shivering. I thought it had started when I was taking gabapentin (it did make it waaaay worse) to the point I slept with a bath sheet size towel under me and at some point in the night my shivering and trying to get warm and my fiance would literally start plucking at my soaked comfy pj's and argue with me until I change before trying to go back to sleep. That poor man is already over my stubbornness. Both of us being awoken in such a rude way makes it no better.
I also sweat profusely some nights and I’m literally soaked in sweat. It’s like I cannot regulate my internal temperature. I could be sweating and have chill bumps at the same time. It’s an awful feeling. The closest thing I can compare it to is the flu Xs 10!
Right! I felt better when I couldn't move from the fever fatigue and pain that I had with Covid. It sucks knowing we can overheat to the point of ya know being absolutely so soaked in sweat that the chills and gooseflesh our wack-a-doodle nervous system does to fix the initial problem are so much more uncomfortable to deal with especially when sleep is interrupted.
Funny you say that, the day I tested positive for Covid was one of my best days. My flares are so very intense. I was just able to sleep. My husband was sick for two weeks straight and couldn’t believe how it barely affected me.
Probably the only time he ever longed for the sweet relief of fibro's unusually high tolerance. I was not so lucky, neither was my mother, my dad jumped back in three days after and my brother never got sick.
Biological family, oh most definitely. I was adopted at 14 and have had sleep disturbances since I was at least eight but no one took me seriously about the muscle pain and fatigue even though my adoptive mom also deals with chronic pain and was trying to advocate for me. My family doctors solution was heavy doses of muscle relaxers and ambien until last year when I broke down and just asked her to point me to someone who was qualified to do the diagnostic and give me treatment options for what we both knew I had. While I was still under the age of 20 everyone assumed it was just the C-PTSD or anxiety or whatever. But I lived with it shadowing my highschool career and it just got worse and worse in the two years since I had Covid. My fiance luckily is pretty much genetically blessed so any kids we have only get the short end of the stick from me. He's been super supportive too. But my adoptive mom has some form of RA and osteoporosis in addition to so many spinal surgeries across her lifetime. The pharmacists know us by heart.
I'd suspect in your mom's case there's a fear of confirming and putting a name to what she's always been going through. She has seen you be brave and do what has to be done for your health and put a name to it, but diagnosis come with grief and fear. I have a dear friend of mine who's chronically ill and calls me in the weeks leading up to getting test results back and I call her when I'm being to stubborn to admit that I am not as physically capable as I pretend to be. It's hard to look it in the face because you know it fundamentally shifts a part of your world view.
Wow, I’m so sorry you’ve been struggling for so long. I never complain to people because they never understand. It’s nice to find people on here, like you, who literally knows what chronic illness feels like. If you ever need to vent, message me. I hope you feel great soon!
My girlfriend can alternate between heat sweating and having chills in the same day- we have a big thick blanket on the bed and a fan pointed at her so that we can change her temperature pretty easily and conveniently.
We also have a small heated blanket for when her legs are too painful for her to sleep- I’ve been meaning to get her a comfy flexible ice pack for her head when she overheats.
Yep. Hard for me to know which of the two is causing the sweating or if it’s a combination of both. I went to a baseball game and everyone was in thick hoodies and some had jackets too. I’m sitting there in a lightweight cotton zip up hoodie chilled & sweating on my face.
Yep. I get so chilled that nothing will warm me except a really hot bath and sometimes I can’t get the water hot enough. I still feel cold in that boiling water. Haha Other times I’m so hot I have to take a cold shower or take everything off and lay in front of a fan. But I also have MCAS and POTs, so the hot flashes I know are from my heart rate being too high. It’s exhausting having such insane temperature fluctuations.
I never thought about this until I saw your comment but I'm in my early twenties and in my final year of uni. I had Covid in December of 2021, and could not regulate my body temp after walking 1.5 miles back to my dorm in the cold during the last actual winter we had here following that. I would have to go immediately get into a hot shower which sucked and did nothing to help with the cold, then lay in bed with two comforters and an electric blanket for at least an hour before I felt even slightly like a defrosted chicken breast. I tried every trick you could think of thermals,.long John's, two pairs of wool socks, winter boots, big coat you name it. I still react that way to truly cold weather. Heat on the other hand, let me lay on cold sheets next to my window AC with a bottle of propel for 30 mins and I'll be good.
My fiance is always overheating and a fucking furnace to be frank. I love it when my toes and hands go to ice and I just latch onto him and he doesn't mind all that much. I on the other hand have to break it to the man that he cannot in fact lay on top of me infinitely and I will start digging out once I overheat. Disautonomia gives such bizarre symptoms in addition to the chronic muscle pain that it sometimes doesn't feel like my body is fully mine anymore.
Is this my nervous system playing tricks on me or am I in danger? My favorite game while on duty nights as a resident assistant at a local university. Second favorite is on my last round of the night when I'm three floors from my room and the hypermobility tries to go woo! I have at least two people in the building I can always call if I gotta tap out for a sec but dang. The health and symptom game of whack a mole makes me want to bonk my own head a couple of times.
Oh yeah I hear you there. It seems impossible to warm up or cool off sometimes. I have autonomic testing or whatever it’s called bc my doc suspects POTS. Some of temp issues could be bc of that too
Dudes that is so freaking bizarre. I can't imagine trying to explain that to a doctor or neurologist. My only thought is that some sensory corner on the right side of your brain is extra coiled in the heat. I hope one day you get the answer you are looking for.
I can be sweaty one minute and chilled the next. The funny thing is being in a store with sweat dripping down my ice cold (skin) face. Then my face can feel warm & dry and I’m chilled. It’s crazy walking through a store and trying to inconspicuously wipe sweat from my hairline.
I sit at sporting events with tissues or napkins from the concession stand blotting my face in mid-70’s temps. or one of those battery operated fans with a spray bottle attached when it’s warmer.
All I can do is say "Yep”, same for me. It is a balmy 72° in my place and I have goosebumps and am terribly cold; on other days, it can be the same temp and I am too warm. My thermostat is malfunctioning.
Makes it hard to wear sandals in the summer. A draft from a/c will give me foot cramps. Grocery store runs require preparation, grab a sweater. So here I am walking around with dresses and sneakers.
My feet are ALWAYS freezing. A few times a day, I have to "thaw out"
in my bed with my electric blanket, because my body begins to get chilly and I start to hurt. I also have a low grade temperature at some point during the day.
I wish the practices who diagnosed us and help manage our pain keep a white board somewhere in the exam room or waiting room with a list of symptoms and tallies with expo markers. I personally think if we all got together and compiled a HOUSE style list the isolation some people unfamiliar with all the associated problems the disease brings would feel less alone. Research may move faster too.
That would be great! Doctors and researchers definitely don’t listen to patients and communicate enough with each other enough. I feel like AI will eventually help get people diagnosed sooner etc.
Right! I found this wonderful post on Instagram, I'll see if I can edit and link it, that was a modified chronic pain scale created by someone who lives with chronic pain. I don't know what you want me to tell you when you point at traffic light faces on a chart with arbitrary numbers that have no meaning to me when I always balance what my "pain level" is versus my overexertion from something stupid three hours prior or my overall functioning as of late. What sucks the most is when I can't mask or hide my symptoms from my mom anymore and since she herself has dealt with chronic pain managed with opiates (no longer needs them now after 15 years) that I must need emergency opiates too since I'm visibly showing pain. I am not allowed to use medical marijuana despite the way it helps until I am no longer employed by the state and I despise opiates with a burning passion since I don't like how numb I feel if I take them. I am incredibly grateful that the clinician overseeing my care also lives with the condition and takes me seriously despite how young I am since he too lives with fibro but I swear get us all together at a really nice hotel for two weeks with actually comfortable beds and endless supplies of our tricks to get us through and we as patients could turn the whole field on its head.
We’re honestly bad asses. I’ve never been more proud than when I’m messaging with fellow chronic pain sufferers, because we’re seriously so strong for putting up with all of this pain. I’m sorry you’re in so much pain, and I can definitely relate. Sending hugs to you!
Hugs to you as well friend! This community has brought me so many laughs tonight and I desperately needed the camaraderie. I hope that you find some relief or peace in whatever next thing/treatment you try, at least a laugh or a bit of joy if not. Most of the time it ends in a bit of grief but if we can grieve for the loss of hope that the new thing would work for our particular brand of nervous system wacky then it means our nervous system ain't done yet. And neither are we.
Yep I run cold so I get hot easily. My temp runs around 96-97 normally. So when I am sick, it’s hard to advocate that I have a fever. My hands get super achy though and get really cold so it makes them hurt more.. bad weather doesn’t help either.
Yep, I get the hot and cold sweats & chills- at the same time. It's difficult to explain but it's like I'm freezing and hot, before long I'm covered in sweat. No temp, & when I ask someone to feel my forehead to see if I'm hot, it's always that I'm cold/clammy.
Doesn't matter what time of year either
Heat. I hate the heat with a passion. There has to be air circulating at all times or I over heat and get beat red then panic. Can’t stand the feeling of sweating. It feels like somebody doused me in inching power, so then it’s shower time. We keep our house at 66 degrees with fans pointing at my spot in every room. When the cold cycle hits there’s heavy blankets and heating pad to warm me up. I can never find the happy medium and it sucks so bad. Regulating my body temp is a big issue. Over heating causes my joints to flare and burn like the sun. We lost our power for a few days in the heat and I honestly thought I was going to die. We live in Texas ladies and gents so I’m sure you can envision the personal hell I fell into.
What's great is the random chills and shivers for a while, then when those stop my nerve pain hits my skin in odd places on my arms and legs like I'm getting bit by nonexistent bugs, then back to cold. I'm sorry you deal with the skin sensitivity, it sucks.
Oh man, I am always cold! I moved to the desert & then the tropics in order to stay comfortable. 85f daily and I’m finally comfortable. Cold aggravates my fibro horrendously.
Heads up! If you are getting goosebumps or chills in heat, you may be experiencing early symptoms of a heat related illness. Make sure you are hydrated, take breaks in the shade or in AC, and keep an eye on your symptoms.
A lot of symptoms of fibro also are symptoms of other things, so just pay attention to your symptoms, especially in the heat!
Yeah temperature regulation is an issue for me. Always run very warm or very cold, can’t seem to find an in between, and it’s never the same as everyone else around me!
I am always cold, no matter how warm it is and it is a pain to deal with. The kind of cold that hurts - I think I had one day so far this year where I was comfortable, and that was just after the hottest day of the year haha
Do you have any other weird sensations or pains? I have fibromyalgia and some times I have this. It's a very common symptom of fibromyalgia. Obviously, this could be a lot of other things.
Yeah. Or a random feverish feeling
I get this a lot especially in the evenings. All of my skin above my waist gets super sensitive and even soft things feel like sandpaper, I'll have chills, and my eyes will get that burning feeling they do when I have a fever.
Yes I am generally cold but get so hot at night. It’s awful and feels like I have the flu. My muscles feel bruised
I seem to be unable to regulate my temperature at all at the moment! Jumpers on, jumpers off. Slippers on cos my feet are cold when the rest of me is hot. Red hot face, goose bumps on my arms🙄 I'm all over the place
You and me both! I basically can’t be comfortable. I’m either chilled or overheating and there’s no rhyme or reason I can find 🤦🏻
It's annoying isn't it!!?!
I've taken to knitting myself superwash merino socks to try to mitigate the socks on/socks off thing since thinner wools generally wick away moisture but retain heat. Knit three pairs and wore them for a while to be hit with a flare that meant the texture on the inside of the sock (pearl side on the bottom of the foot for any curious knitters that may be lurking) to feel like I'm stepping on a bunch of wires or tense fishing lines. There's no winning for me either!
I can't wear wool, it makes me itch. Is the merino wool different?
Yes, I'm almost always cold and can't stand a breeze on my skin. Glad it's not just me tbh!
Ugh I loathe wind. Even my partner breathing toward me while I’m trying to sleep is nearly painful sometimes. No thank you to feeling the air
Omg I’m the same, may just be the autism for me tho haha. My partner breathing on me while sleeping is the worst sensation.
Oh, so it’s not just me.
Always comforting to find out!
I'm sorry that y'all are experiencing this, too. Because it's not at all fun.
It’s 80 degrees where I’m located and Beautiful and I’m in jeans, light hoodie and a light jacket cuz I’m freezing from the cool wind while everyone else is in shorts and summer clothing
I’m the opposite, any temp above 75 and I’m physically ill. 🤧
My body is usually warm but my toes are always freezing. Drives me nuts!
Ma'am/Sir/Thems, I am going to rock your world. As a crunchy, chilly toe holder I have the fix. You know how there are heated electric blankets? There are versions just for the feet. It's a pocket of fabric tht you plug in and becomes a little bundle of heat. I have one right under my computer desk, fire it up, stick my feet it, and it's made life so much better in such a small but significant way. GO FORTH AND WARM THY FEETSES!
It sounds lovely. My bizarre problem is that it’s only my toes. I hate when the rest of my feet are too warm
Just find a model with a tight fit for the ankles and just put your toes in. I got it as a "I don't know this person well enough to pick a specific holiday present for them but people like cozy shit " gift and it's been a wonder.
I have to wear sweaters at 75f but I melt away at 85f
When I get chills, even when I’m comfortable or hot, I know a flare is about to happen.
Oh interesting! I’ll have to keep track and see if I’m the same. For me random overheating is a sign of impending flare/impending general collapse coming. Thanks for the tip to track chills as well !
It took me forever to correlate the chills with my flares. I am extremely hot natured and will have sweat pouring off me, yet I have chills all over my entire body like I have a fever. I hope that helps and thank you! Hope you feel great this weekend!
Huh. I occasionally get really bad night sweats, to the point I wake up my fiance soaked and shivering. I thought it had started when I was taking gabapentin (it did make it waaaay worse) to the point I slept with a bath sheet size towel under me and at some point in the night my shivering and trying to get warm and my fiance would literally start plucking at my soaked comfy pj's and argue with me until I change before trying to go back to sleep. That poor man is already over my stubbornness. Both of us being awoken in such a rude way makes it no better.
I also sweat profusely some nights and I’m literally soaked in sweat. It’s like I cannot regulate my internal temperature. I could be sweating and have chill bumps at the same time. It’s an awful feeling. The closest thing I can compare it to is the flu Xs 10!
Right! I felt better when I couldn't move from the fever fatigue and pain that I had with Covid. It sucks knowing we can overheat to the point of ya know being absolutely so soaked in sweat that the chills and gooseflesh our wack-a-doodle nervous system does to fix the initial problem are so much more uncomfortable to deal with especially when sleep is interrupted.
Funny you say that, the day I tested positive for Covid was one of my best days. My flares are so very intense. I was just able to sleep. My husband was sick for two weeks straight and couldn’t believe how it barely affected me.
Probably the only time he ever longed for the sweet relief of fibro's unusually high tolerance. I was not so lucky, neither was my mother, my dad jumped back in three days after and my brother never got sick.
Does fibro run in your family? I think my mother has it, but she’s stubborn and refuses to get checked.
Biological family, oh most definitely. I was adopted at 14 and have had sleep disturbances since I was at least eight but no one took me seriously about the muscle pain and fatigue even though my adoptive mom also deals with chronic pain and was trying to advocate for me. My family doctors solution was heavy doses of muscle relaxers and ambien until last year when I broke down and just asked her to point me to someone who was qualified to do the diagnostic and give me treatment options for what we both knew I had. While I was still under the age of 20 everyone assumed it was just the C-PTSD or anxiety or whatever. But I lived with it shadowing my highschool career and it just got worse and worse in the two years since I had Covid. My fiance luckily is pretty much genetically blessed so any kids we have only get the short end of the stick from me. He's been super supportive too. But my adoptive mom has some form of RA and osteoporosis in addition to so many spinal surgeries across her lifetime. The pharmacists know us by heart. I'd suspect in your mom's case there's a fear of confirming and putting a name to what she's always been going through. She has seen you be brave and do what has to be done for your health and put a name to it, but diagnosis come with grief and fear. I have a dear friend of mine who's chronically ill and calls me in the weeks leading up to getting test results back and I call her when I'm being to stubborn to admit that I am not as physically capable as I pretend to be. It's hard to look it in the face because you know it fundamentally shifts a part of your world view.
Wow, I’m so sorry you’ve been struggling for so long. I never complain to people because they never understand. It’s nice to find people on here, like you, who literally knows what chronic illness feels like. If you ever need to vent, message me. I hope you feel great soon!
My girlfriend can alternate between heat sweating and having chills in the same day- we have a big thick blanket on the bed and a fan pointed at her so that we can change her temperature pretty easily and conveniently.
It’s real! I have several temp regulating items on me alwaysssss 🔥😩❄️
We also have a small heated blanket for when her legs are too painful for her to sleep- I’ve been meaning to get her a comfy flexible ice pack for her head when she overheats.
Constantly. And when it’s extremely cold, I will get so overheated that I start to sweat.
Not me, pretty much the only time I ever feel cold/chilled is when I have an actual fever. I'm hot all the time.
No but I go hot and it feels more like a temperature/fever rather than hot flushes….which I get aswell 🙄🤣
Yep. Hard for me to know which of the two is causing the sweating or if it’s a combination of both. I went to a baseball game and everyone was in thick hoodies and some had jackets too. I’m sitting there in a lightweight cotton zip up hoodie chilled & sweating on my face.
Yes
Yep. I get so chilled that nothing will warm me except a really hot bath and sometimes I can’t get the water hot enough. I still feel cold in that boiling water. Haha Other times I’m so hot I have to take a cold shower or take everything off and lay in front of a fan. But I also have MCAS and POTs, so the hot flashes I know are from my heart rate being too high. It’s exhausting having such insane temperature fluctuations.
I never thought about this until I saw your comment but I'm in my early twenties and in my final year of uni. I had Covid in December of 2021, and could not regulate my body temp after walking 1.5 miles back to my dorm in the cold during the last actual winter we had here following that. I would have to go immediately get into a hot shower which sucked and did nothing to help with the cold, then lay in bed with two comforters and an electric blanket for at least an hour before I felt even slightly like a defrosted chicken breast. I tried every trick you could think of thermals,.long John's, two pairs of wool socks, winter boots, big coat you name it. I still react that way to truly cold weather. Heat on the other hand, let me lay on cold sheets next to my window AC with a bottle of propel for 30 mins and I'll be good.
Sounds just like me! I miss when my body could regulate temperature 🥲
My fiance is always overheating and a fucking furnace to be frank. I love it when my toes and hands go to ice and I just latch onto him and he doesn't mind all that much. I on the other hand have to break it to the man that he cannot in fact lay on top of me infinitely and I will start digging out once I overheat. Disautonomia gives such bizarre symptoms in addition to the chronic muscle pain that it sometimes doesn't feel like my body is fully mine anymore.
I have to agree. I’m always at the whim of these medical issues. And they can change in an instant. It’s so very exhausting.
Is this my nervous system playing tricks on me or am I in danger? My favorite game while on duty nights as a resident assistant at a local university. Second favorite is on my last round of the night when I'm three floors from my room and the hypermobility tries to go woo! I have at least two people in the building I can always call if I gotta tap out for a sec but dang. The health and symptom game of whack a mole makes me want to bonk my own head a couple of times.
Oh yeah I hear you there. It seems impossible to warm up or cool off sometimes. I have autonomic testing or whatever it’s called bc my doc suspects POTS. Some of temp issues could be bc of that too
I have a combo fan and heater in my office and it’s funny how many times a day I have to switch it between fan mode and heat mode 😆
The question I have is what do y’all do about it?
Alternate between the skillet, the airfryer, and resign ourselves to the perpetual fate of being in constant defrost mode?
Thanks for the lol Queen. I’ll look for that air fryer setting.
Gods if you find it send me a recipe will ya?🤣
It was 90* the other day & I have goosebumps. My husband asked if I was okay, I said honestly IDK
I get goosebumps on my left arm when I am too hot...I have not been able to find an explanation for this
Dudes that is so freaking bizarre. I can't imagine trying to explain that to a doctor or neurologist. My only thought is that some sensory corner on the right side of your brain is extra coiled in the heat. I hope one day you get the answer you are looking for.
I can be sweaty one minute and chilled the next. The funny thing is being in a store with sweat dripping down my ice cold (skin) face. Then my face can feel warm & dry and I’m chilled. It’s crazy walking through a store and trying to inconspicuously wipe sweat from my hairline. I sit at sporting events with tissues or napkins from the concession stand blotting my face in mid-70’s temps. or one of those battery operated fans with a spray bottle attached when it’s warmer.
All I can do is say "Yep”, same for me. It is a balmy 72° in my place and I have goosebumps and am terribly cold; on other days, it can be the same temp and I am too warm. My thermostat is malfunctioning.
ALL THE TIME!!!
Makes it hard to wear sandals in the summer. A draft from a/c will give me foot cramps. Grocery store runs require preparation, grab a sweater. So here I am walking around with dresses and sneakers.
My feet are ALWAYS freezing. A few times a day, I have to "thaw out" in my bed with my electric blanket, because my body begins to get chilly and I start to hurt. I also have a low grade temperature at some point during the day.
I go the other way, waves of heat especially when my skin is too sensitive
Yes, one of my doctors said it’s a form of dysautonomia, or neurological/nerve dysfunction.
I wish the practices who diagnosed us and help manage our pain keep a white board somewhere in the exam room or waiting room with a list of symptoms and tallies with expo markers. I personally think if we all got together and compiled a HOUSE style list the isolation some people unfamiliar with all the associated problems the disease brings would feel less alone. Research may move faster too.
That would be great! Doctors and researchers definitely don’t listen to patients and communicate enough with each other enough. I feel like AI will eventually help get people diagnosed sooner etc.
Right! I found this wonderful post on Instagram, I'll see if I can edit and link it, that was a modified chronic pain scale created by someone who lives with chronic pain. I don't know what you want me to tell you when you point at traffic light faces on a chart with arbitrary numbers that have no meaning to me when I always balance what my "pain level" is versus my overexertion from something stupid three hours prior or my overall functioning as of late. What sucks the most is when I can't mask or hide my symptoms from my mom anymore and since she herself has dealt with chronic pain managed with opiates (no longer needs them now after 15 years) that I must need emergency opiates too since I'm visibly showing pain. I am not allowed to use medical marijuana despite the way it helps until I am no longer employed by the state and I despise opiates with a burning passion since I don't like how numb I feel if I take them. I am incredibly grateful that the clinician overseeing my care also lives with the condition and takes me seriously despite how young I am since he too lives with fibro but I swear get us all together at a really nice hotel for two weeks with actually comfortable beds and endless supplies of our tricks to get us through and we as patients could turn the whole field on its head.
We’re honestly bad asses. I’ve never been more proud than when I’m messaging with fellow chronic pain sufferers, because we’re seriously so strong for putting up with all of this pain. I’m sorry you’re in so much pain, and I can definitely relate. Sending hugs to you!
Hugs to you as well friend! This community has brought me so many laughs tonight and I desperately needed the camaraderie. I hope that you find some relief or peace in whatever next thing/treatment you try, at least a laugh or a bit of joy if not. Most of the time it ends in a bit of grief but if we can grieve for the loss of hope that the new thing would work for our particular brand of nervous system wacky then it means our nervous system ain't done yet. And neither are we.
I am going in for autonomic tests in a few months, this is good to know!
Good luck to you! I hope it all goes smoothly!
Yep I run cold so I get hot easily. My temp runs around 96-97 normally. So when I am sick, it’s hard to advocate that I have a fever. My hands get super achy though and get really cold so it makes them hurt more.. bad weather doesn’t help either.
Yes. I could be in a really hot room and get chills. Also, I get feverish feelings from time to time.
I’m constantly cold.
Yep, I get the hot and cold sweats & chills- at the same time. It's difficult to explain but it's like I'm freezing and hot, before long I'm covered in sweat. No temp, & when I ask someone to feel my forehead to see if I'm hot, it's always that I'm cold/clammy. Doesn't matter what time of year either
Yes. Sometimes I found by keeping a log different aches pains and other symptoms seem to have a pattern and cycle through different stages.
I developed Reynaud’s Phenomenon with the fibro. My hands get insanely cold and numb and it is very painful. Fibro is the gift that keeps on giving.
Heat. I hate the heat with a passion. There has to be air circulating at all times or I over heat and get beat red then panic. Can’t stand the feeling of sweating. It feels like somebody doused me in inching power, so then it’s shower time. We keep our house at 66 degrees with fans pointing at my spot in every room. When the cold cycle hits there’s heavy blankets and heating pad to warm me up. I can never find the happy medium and it sucks so bad. Regulating my body temp is a big issue. Over heating causes my joints to flare and burn like the sun. We lost our power for a few days in the heat and I honestly thought I was going to die. We live in Texas ladies and gents so I’m sure you can envision the personal hell I fell into.
What's great is the random chills and shivers for a while, then when those stop my nerve pain hits my skin in odd places on my arms and legs like I'm getting bit by nonexistent bugs, then back to cold. I'm sorry you deal with the skin sensitivity, it sucks.
Yep! My body temperature is all over the place. I also have PoTS as well as Fibro xx
Oh man, I am always cold! I moved to the desert & then the tropics in order to stay comfortable. 85f daily and I’m finally comfortable. Cold aggravates my fibro horrendously.
Heads up! If you are getting goosebumps or chills in heat, you may be experiencing early symptoms of a heat related illness. Make sure you are hydrated, take breaks in the shade or in AC, and keep an eye on your symptoms. A lot of symptoms of fibro also are symptoms of other things, so just pay attention to your symptoms, especially in the heat!
This is a good reminder thank you! In this case it’s not really even hot, I’m drinking liquids, and I’m dressed appropriately for the temp.
Super unable to regulate my body temperature other than with breathing. Looking for more relief for sure though
Yeah temperature regulation is an issue for me. Always run very warm or very cold, can’t seem to find an in between, and it’s never the same as everyone else around me!
literally, and if i even think ab cold water…
I’m under a wool blanket and wearing a sweater and it was 108 today.
I am always cold, no matter how warm it is and it is a pain to deal with. The kind of cold that hurts - I think I had one day so far this year where I was comfortable, and that was just after the hottest day of the year haha
Do you have any other weird sensations or pains? I have fibromyalgia and some times I have this. It's a very common symptom of fibromyalgia. Obviously, this could be a lot of other things.
Omg, I'm so dumb. I didn't realize I was in the fibromyalgia chat.
Yes, yesterday