Temperature sensitivity affects many women with fibromyalgia, myself included. You can be cold all the time or hot all the time or alternate between being hot or cold.
For over twenty-five years I had hot flashes and night sweats. I can’t tell you how many times I was totally embarrassed because I could not stop sweating. My hair and clothes would be drenched regardless of the outside temperature. Now I am freezing all the time.
Research shows that people with fibromyalgia have an inability to adapt to changes in temperature along with a lower pain threshold to both hot and cold stimuli. Julie at Counting My Spoons wrote about a study that examined the temperature thresholds for heat and cold in women with fibromyalgia compared to healthy women.
What Causes Temperature Sensitivity
Body temperature is regulated by the hypothalamus. The hypothalamus is a section of the brain responsible for hormone production. It is considered the link between the nervous system and the endocrine system.
The hypothalamus not only controls body temperature. It controls energy levels, the sleep cycle, muscular function, circulation, the gut and defense against infection.
Most fibromyalgia symptoms seem to be due to imbalances in the hypothalamus-pituitary-adrenal axis (HPA axis). These three glands work together to control hormone levels. Disruptions in the HPA axis seem to be at the core of fibromyalgia.
Thyroid hormones also play a role in regulating body temperature. An overactive thyroid (hyperthyroidism) can cause a person to feel too hot, while an underactive thyroid (hypothyroidism) can cause a person to feel too cold.
The thyroid gland is under the control of the pituitary gland. The pituitary gland itself is regulated by the hypothalamus. Anything that disrupts the HPA axis will also suppress thyroid function.
Certain medications interfere with the regulation of body temperature. Some drugs make you sensitive to heat, increasing the risk of heat stroke and some can lower body temperature.
Heat Sensitivity
Some heat sensitive people feel all-over heat sensations that seem to come from within their own body. Along with hot flashes, some people have problems with excessive sweating. Others may only have problems in their hands and feet, including puffiness and aching. Warm or hot weather can be unbearable with heat sensitivity.
To avoid getting overheated:
- Keep your environment cool.
- Wear soft, lightweight clothing that fits loosely. Stick to light colors in warm weather because dark colors absorb heat.
- Stay hydrated. Make sure you always have a cold drink (water is best) to sip on.
- Take a cool bath or shower. Sometimes just soaking your feet in cool water can help cool your body down.
- Use cooling products such as a cold pack or fan. Carry a small, hand-held, battery operated fan with you when you go out.
When the weather gets warm, heat sensitive people with fibromyalgia often experience symptom flare-ups. Research has found that people with fibromyalgia exposed to hot temperatures report increases in: pain, headaches, fatigue, anxiety and depression. They are also more likely to have heat rashes and heat exhaustion or heat stroke.
Heat stroke is a medical emergency. Signs of heat stroke and immediate action to cool the overheated person while waiting for emergency treatment can be found on the Mayo Clinic website.
Cold Sensitivity
People who are cold sensitive often feel chilled to the bone and have a hard time warming up. The cold can be all over or just in your hands and feet. This symptom is usually worse during cold weather, but can occur at any time.
To prevent problems with cold:
- Keep your environment warm.
- Dress warmly, especially in cold weather. Keep your feet covered, wear socks and slippers.
- Drink hot liquids and eat hot meals like soup and oatmeal.
- Take warm baths or showers.
- Keep a blanket handy or use a heating pad or similar microwave products.
An unusual sensitivity to cold in the hands and feet with color changes in the skin sometimes occur in people with fibromyalgia. This condition is called Raynaud’s syndrome, also known as Raynaud’s phenomenon.
Sensitive To Both, Heat and Cold
Some people fluctuate between being hot and being cold. One minute you can be sweating with hot flashes and freezing the next. This can be very challenging. You have to be prepared for either scenario.
- Dress in layers or have extra layers available.
- For night sweats, wear moisture wicking sleepwear or use temperature regulating sheets.
Fluctuations in temperature can make your fibromyalgia feel worse. It’s important to plan ahead. You may have to spend most of your time indoors where you can better control the conditions.
Conclusion
Temperature sensitivity is a common fibromyalgia symptom. Most women with fibromyalgia report being extremely sensitive to cold and/or heat. Essentially, temperature sensitivity may be due to hormonal imbalances in the hypothalamus-pituitary-adrenal axis. Medications can also interfere with the regulation of body temperature.
For many years, I was hot all the time. The warm and hot weather was unbearable so I preferred cold weather. Now it seems as if the switch has been flipped and I am always cold. The hot flashes stopped when I stopped taking antidepressants and Lyrica. So either it was the medications or I made it through menopause. Now, if I could just get warm.
I’d like to hear from you. If you have fibromyalgia, are you sensitive to heat, cold or both? If so, do you have any tips that help? Please leave a comment below to share.
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I had a complete hysterectomy at a very young age. I was about 24 and for several years I had no problems, although I’ve always been hot natured and then it seamed as if a switch was flipped. I sweat from daylight to dark and then even more while sleeping. I was diagnosed with fibromyalgia when I was like 28, but I’d suffered from it for years before going to the Drs. Everyone else in the house is always freezing when I’m comfortable, but they’re comfortable I’m ringing wet with sweat! I tell them you can put more on you, cover up, I can’t take nothing else off! It is really hard though because I want to grow my hair long and wear it down, but to pour with sweat I just slap my hair up in a hair tie. ☹ I can’t stand the hot flashes!!..
That is young. You are right it is easier to pile on more clothing, you can only take so much off. Even as a kid, I was heat sensitive. The hot flashes started when I was 30. I can remember times when the sweating was so embarrassing. Now I am cold all the time in the winter and my skin stings all summer. The cold is easier to deal with. 🙂
Thanks for this. I’m sensitive to cold. Tips:
In winter wear double socks
And leggings under trousers
Wheat bags can be heated in anyone microwave, so carry them.
All the best.
Blessings.
All
Great tips! I have three pairs of socks on today.
There are these gloves I found online (Etsy) that are amazing (inside the house); they have no finger tips so you can use your cel or whatever, cook, etc. and sleep with them. I know they saved my life (well, my winter days and nights). Now, there are many selling these gloves and I tried 5 of their shops. Sue, if you find inappropriate for me to say which were the best ones I found, in variety of materials and the very pretty designs, feel free to remove the name of the person who sent them to me. But I honestly have no connection with her and I only now where she’s from because it’s stated at the beginning of her shop; it would be a shame for me not to be able to share this in full with my fellow fibro club members. Ok, so here I go. Just type galina. Her shop sells only those gloves. You can have gloves that end on the wrist or even end way past your elbow and she uses different materials. Just a recommendation: DON’T buy anything with lace. I feel my skin crawl just to think lace touching my skin, ugh. These gloves keeps me so warm…. anyway, just my grain of salt. And I really feel for the male club members. I know your fibro is quite different than female fibro and according to my dr, their symptoms are worse ???? than ours. A very soft-barely-touching-skin hug to you, guys.
She’s from Tel Aviv, lol, sorry, damn brain fog
Hi, Mariana. I have no problem at all with sharing products that help others. 🙂
Hi
I have had temperature regulation problems for many years but especially bad after I had a nasty influenza in 1988! After that, well it was hard for me to stay warm. For me I can cope being outside in heat and outside in cold weather providing I am well fed and wrapped up well. What I cannot tolerate is air conditioning, and temperatures INSIDE buildings of less than about 23C. I am much better outdoors than in and heat/cold hydrotherapy really helps – hot shower/cold shower/warm shower and repeat. Cold sea water bathing has also helped me as it promotes my circulation – but I do wrap up well after and drink hot soup afterwards. It was by complete accident that I found this. I am very sensitive to skin pressure – thank goodness in Europe we can go topless sunbathing on the beach as I can’t wear bras or bikinis and costumes can be very restrictive.
Hi, Lesley. It is a rare day that I can be out in the sun for very long without having some kind of skin reaction. I have to cover up completely, even at the beach. I also have allergies so I am better off indoors most of the time. I used to go for long walks in the woods. Along the river and creeks. I miss that.
It is the same for me. Spring and Fall are when I can go out some and be somewhat comfortable as long as I take allergy meds.
Hi, I found you when looking up temps in fibro. I was diagnosed in 2012 but I figure I’ve had it much longer. I do well in warm and hot temps if there’s no humidity. Otherwise, I don’t feel well and am stiff, etc. I’ve been feeling feverish in the mornings now, which seems to go in cycles. I’m post meno for about five years now. I can’t get cold tho. If I do, I feel awful and can’t get warm without a bath or shower. I’m trying to get my husband to move to Vegas because its dry and hot. We lived there before and its good for me. Glad to know there are others having the same problems! Thanks for sharing!
Hi, Tracy. My grandparents lived in Vegas and I loved visiting there. I wish the hot weather didn’t bother me. I can’t take it. I used to feel better in colder weather but now I feel stiff and can’t get warm. I hope you get to move back to Vegas. I used to live in Florida, great in the winter, too hot in the summer. I miss the ocean but not the heat.
I read all of your post, I for one have different effect to hot and cold, I have been dealing with Fybro for 3yrs, If its hot out I get headaches, nausea, light headed, rapid heart beats and insomnia and have to stay inside, cos the heat and the sun hurts my eyes, and shades don’t help much, now cold I am so tired that I feel like hibernating and my hands cramp up that it hurts to do dishes, carry anything cos I have dropped a lot of things and wasn’t planning on it. I have no signs of anything else, I waiting for my disability to get approve so I can see a specialist cos last I checked the next pill to help me costed over 200.00 for 3o day the others gave me depression and killing myself. so has any one experience severe pain in only parts of your body? mine is mostly my upper shoulder area where I feel my fybro and if I do any thing I hurt so bad that I cant caught my breath, so carrying anything over a gallon of milk is to much, standing for long peroids out of question even walking long distance is out even sitting or driving for long period of time. what helps is laying down cos no strain on shoulder areas but I cant stay in bed to long I get stiff. so what I’m confused about is why my systems are different from others.
Actually, the symptoms you are describing are not so different at all. Headaches, nausea, dizziness, rapid heartbeat, shortness of breath, and even dropping things are common fibro symptoms. What may be different is what sets them off. Almost everyone with fibromyalgia is hypersensitive to things in the environment. For you, it could be changes in temperature. For someone else, it could be noise, smells, or bright lights. Any one of them can cause problems for me. Also, shoulder and neck pain are the most intense for me. It is where my pain started and it is where my pain is the most persistent. A few years ago I also developed lower back, hip, and leg pain. The right side of my body feels more pain than the left. Fibro can affect each of us differently. The symptoms and the severity of those symptoms can vary from person to person. They can also vary from day to day. Yet most of the symptoms are quite common among us. Good luck with your disability case. I had my hearing 4 months ago and I am still waiting for their decision.
I just rescently got diagnosed with fb I have been suffering for quite awhile (years) but finally got a Dr that is trying to get me relief. Nothing so far is helping. I’m in constant pain with no relief. Heat intolerant but some times so cold I cannot get warm. I to spend most of the summer months indoors beacuase of it. I miss out on so much living because of my pain. Any advice would be helpful. Things you tried that worked. In allergic to so many medications that get help is difficult when pain gets unbareable I usually end up at the er.
Hi, Shannon. I also spend most of the summer months indoors due to allergies, chemical sensitivity, and burning skin. This past summer was the worst one so far so I can’t help much there. But when it comes to the pain, I have found several things that help. Trigger point massage using a foam roller and a tennis ball help me the most. I also use the Oska Pulse every day. And I use the Quell at night and when I leave the house. I also use magnesium and/or CBD lotion. You might want to take a look at these post: 9 Ways to manage chronic pain, my review of the Oska Pulse and my review of the Quell device. I am not pain-free, but all of these things keep it under control.
I have hot flushes and excessive perspiration at times. Sometimes I feel as though I am going to collapse when I have a hot flush. I have been on HRT but the Dr is currently weaning me off it. I don’t know if it is menopause or Fibro. I am on a very low dose of Endep to help me sleep, plus painkillers and an anti inflammatory. Also on asthma medication and blood pressure tablets. I use the ceiling fan in the bedroom year round and a pedestal fan as well. A fan going on my skin really helps to cool me down. I am hoping to is more menopause as I hate the thought of it going on forever! The heat of summer here in Australia is really hard to cope with. I love the winter.
Hi, Catherine. I can relate, I was like that for years. Then it just stopped about two years ago. So I am thinking it was most likely menopause. The fibro and medications probably added to it. I still can’t handle hot weather, but now I can’t handle cold weather either. I hope you have a good day.
What fibromyalgia is to me
I’m tired, I’m always tired
Some days I just want to sleep so I don’t feel the overwhelming pain in my bones,joints and muscles.
No matter how much I sleep I’m tired anyway
I feel like I am losing my mind because I get up and start to do something and forget what I’m doing half way through
Someone tells me something and then I will ask about the same thing a little later and people get mad…thinking I’m not paying attention when really I have no recollection of asking before
I’m hot when others are cold and vise versa not to mention the rashes that make me a human etch a sketch!
I drop things. Simple things have become difficult.
My head aches so bad that I don’t want to open my eyes at times.
I try to act normal and do things, but there are so many things I cant do any more.
All of these things transfer into depression and a feeling of uselessness.
I try to research other illnesses that I may have hoping to find something that they have missed…surely they can fix me
But all the doctors can do is give me medications that dull the pain and my mind.
I would rather have deadly cancer than FM at least then people wouldn’t think your some kind of nut and there would be a light at the end of the tunnel.
I have not worked in almost 3 years and have no real income.
But according to disability rules there is something I can do to make a living…they just won’t tell me what that might be? What kind of job will let you miss so many days due to illness? Or go home mid shift because opening your eyes in the light makes you cry from head ache ? I’m wondering how you all handle it? It’s been years and it just gets worse and worse. A ew good days and I get my hopes up…maybe? Maybe it is gone, only to have another flare that stops me. What do you all do for work? Do you work from home or have you found some job that lets you come and go as needed?
Hi Laura. I felt just like you are feeling until a couple of years ago. Then I went off all the medications and realized that a lot of my symptoms were made worse by the medications. I started taking supplements and eating healthier. It took time, but I started feeling less tired and clearer in my thinking. I stopped trying to act like I was still normal and finally accepted that I was not. It helps me to make lists, keep to a routine and pace myself. I try not to overdo mentally or physically and work with the energy I have at that moment.
I am trying to get disability myself. It is ridiculous that they think we could find jobs that would accommodate our illness. I make a little from this blog. It’s only enough to cover the expense of the blog so far, but I am hopeful
Hope is what carries me through. Hope for treatments that work. Hope that they will figure out how to reverse FM. Hope that I can avoid a bad flare-up. Just hope. I have my days where it all gets to be too much and I feel depressed. I have learned to just give in to it for a little while and then try to get on with it. Do what I can and not feel guilty or upset about what I can’t.
There are no easy answers to any of this. I just try to enjoy the good days and try to get through the bad ones the best I can. I wish you the best.
I am seeing many of my own health issues mentioned here, and I suspect that I, too, am suffering from FM. I have not worked for over a year and a half, but doctors don’t seem to think that I would qualify for SS Disability.
My main problem with temperature sensitivity right now is with hot weather–and I live in Texas. I also have days where I just want to stay in bed, but usually try not to. Luckily I am married to a wonderful woman who works very hard to support us both, and doesn’t complain about my inability to work. My mother, sister, and aunt also have FM so I guess I should not be surprised. As Sue says, not trying to pretend to be healthy makes it easier.
I had to leave my job too (I loved it), which doesn’t help with the fibro + depression-anxiety symptoms…
Note, I am on disability for Fibromyalgia. One of the factors here is age. I was in my early 60’s when I was granted SSDI. So hang in there and I hope this note will help you.
I am 60 now so I will try to hang in there. Thanks Eileen.
Dear Laura,
FM sucks, but please don’t wish cancer upon yourself. It is not a pretty way to go. I have been diagnosed with FM, CFS, ADHD, IBS, lymph edema, polyarthralgia, neuralgia in hands, feet and legs, bipolar disorder, chronic tendonitis, etc. I get the most painful muscle cramps in the most ridiculous places.
I cannot sit, stand or walk for too long without feeling pain or stiff. Every morning I wake up stiff and achy. Some days I do a lot of things without any issues. I can pace myself, the next day I can barely move. No rhyme or reason. I too drop things, stumble, lose my balance, my vision has gotten strange, I forget the easiest words in the middle of a conversation and feel like an idiot. Sometimes my skin hurts, itches like crazy for no good reason. I am very sensitive now to what I am wearing. I can be in the middle of working on the computer, and I fall asleep without even noticing. When I wake up, I have no idea what happened; like I had been dosed with a heavy sedative.
My memory sucks, I have voice reminders in my phone for everything. I had every test you can imagine. I am as healthy as a horse, haha. Good one. I am sensitive to cold, so I wear fingerless gloves, got an electric blanket, heating pads, tons of blankets. Other times I wake up drenched in sweat, freezing at the same time. I am not anywhere close to menopause. I don’t have the stamina I used to, I am tired for days and sleep, or I cannot sleep at all. I am sensitive to weather changes. I have allergies galore, eczema, my skin is acting crazy, losing hair, wounds don’t heal as fast as they used to, and sometimes I get killer migraines. I got so frustrated of doctors telling me that I was healthy according to standard tests. I think we can all agree that standard results don’t really apply to us because a small percentage of people have what we have.
One doctor said, I should just accept it. Seriously? Would you like to spend a day with my body and brain? She couldn’t walk a mile in our shoes.
For my own peace of mind, I did research, now getting tests done to ELIMINATE physical damage or issues. Thyroid, RA, metabolic panels normal. All hormones, etc. Excellent. Had a nerve conduction test done. No nerve damage, but I had neuralgia in my feet that day. Am I crazy? MS excluded. More tests to come. At least I can take comfort in the fact that I am actively playing a role in my health, knowing I am physically ok, even when it doesn’t feel that way.
What helps me?
Changing activities and movements up, i.e. stand, sit, bend over.
Ergonomics. Very important.
Stretching, light yoga, massages, chiropractor, hot baths in Epsom salt and essential oils.
Medication for pain, inflammation, anxiety, depression, mood stabilizers.
Poking fun at myself. At least I can still walk and wipe my own butt. Seriously, lol
Do I accept that I have all this crap? Of course not, but I celebrate the good days or moments I have.
It sounds as if I just wrote that about myself
I get night sweats and also am extremely sensitive to cold drinks. For instance, just taking a couple of sips of water straight out of the fridge gives me horrible brain freeze that lasts way longer than it should. I’m guessing it’s from fibro.
I get both. Also, I might be dying because of hot flashes BUT my feet, hands, knees and nose are frozen and in lot of pain.
Im hot in the summer ,extremely hot,cold to the bone in the winter ,the heat seems to much for me
Hi, Carolyn. I know what you mean. In the winter I am wishing for warmer weather and in the summer I am wishing for cool weather. The heat is the worst for me, too. I get hot and my skin feels like it is on fire. The humidity also makes me feel short of breath.
I have fibromyalgia and I am way more sensitive to hear than cold. I just happened to find this article and I’m glad I did. I thought something was wrong with me.
Hi Sarina. Heat bothers me more, too. I am glad I could help show that you are not alone.