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Temperature Sensitivity In Fibromyalgia

Temperature Sensitivity in Fibromyalgia

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. Warm and hot weather were 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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Temperature Sensitivity in fibromyalgia

99 comments… add one
  • I live with fibromyalgia and have more of a sensitivity to cold than hot. Even in the middle of summer, at the hottest part of the day, I can get cold. It’s weird. This explains it. I’m having my pcp check my hormone levels because I believe I’ve got something going on with my adrenal glands. Maybe she can see about this, too.

    Thanks for the informative article! I’m sharing it with my readers tomorrow on my blog, Being Fibro Mom, at http://www.beingfibromom.com

    Happy Fibromyalgia Awareness Day! I have several giveaways going on right now. Come by my blog to enter!

    Reply
    • Thank you for stopping by and especially for sharing my post. Happy Fibromyalgia Awareness Day to you, too.

      Reply
    • Sue, I’m a man with fibromyalgia and this year developed what I feel is extreme sensitivity to heat. I can be in the house with the air on 70 in the summer, my wife has long johns on and freezing while I’m sitting with shorts and no shirt, one step from feeling overheated. At night I put the ceiling fan on, she has 3 blankets and a sheet and cold, I wake up almost overheated. This summer has been awful, used to love summer, worked outside, etc. now can’t wait until it’s over, especially the humidity. If outside I sweat at 60 degrees, inside in the air if I drink coffee I break out in a sweat. What can we do naturally to treat this, I’m at my wits end, thanks

      Reply
      • Hi Jerry. I’ve been cooped up all summer due to the heat and humidity. Feeling overheated is awful and there doesn’t seem to be any recourse other than to try to stay cool. I no longer have problems with sweating but I did for over 20 years. I read that ingesting 2 tablespoons of Apple Cider vinegar can help with excessive sweating. I would also check to see if one or more medications are causing the problem or making it worse.

        Reply
  • I have the excessive overheating and sweating.

    I would love to know if there is a way to treat or balance the hypothalamus.

    I also ran across this article that I thought was very interesting. http://nationalpainreport.com/fibromyalgia-researchers-say-discovery-could-change-treatment-of-chronic-pain-8820574.html
    I have RA and Fibro. I can deal with it all most times, but the excessive overheating and sweating is downright unbearable, gross and embarassing.

    Reply
    • Hi, Mary. The article is interesting. My palms are bright red most of the time and people often ask me about it. Since reading about the extra nerve fiber in the hands of people with fibromyalgia, I thought that might explain it. I have always had problems tolerating hot weather. Although it didn’t have to be hot for me to start sweating. It used to be horrible and very embarrassing. After going off all my medication a few years ago, the excessive sweating stopped. I am not sure if it was because of stopping the meds or getting older or a combination of both. Now instead of sweating when I feel overheated my skin stings and burns. Your questions about the hypothalamus have sparked my curiosity. I think it is a good idea for a future post. Take Care.

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      • I have Fibromyalgia, Sjogren’s Syndrome, Hashimoto’s Thyroiditis, Raynaud’s, IBS, Undifferentiated Connective Tissue Disease. I’ve been unable to handle temperature extremes for some time. I generally stay indoors during the summer and winter. Spring and fall are not too bad. I’m sure there is a huge overlap in symptoms between all my diseases, so I’m not sure which is responsible for my temperature issues. My feet get so cold they feel like they are burning. I know that sounds weird, but I don’t know how else to describe it. I usually wear two pairs of socks and sometimes that isn’t enough so I add a blanket. Then they get warm, I get overheated, take off the blanket and one pair of socks, and then it starts all over. In the last three hours I’ve been through the routine four times.

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        • Hi, Dawna. I find that I am staying indoors most of the time. Summer and winter because of the temperatures. Fall and spring due to allergies. With all of your diagnosis, most probably contribute to your temperature sensitivities. Plus some medications make it worse. My sister describes her hands being so cold they burn, she also has Raynaud’s. Since the weather has cooled, I have been going through the blanket and sock routine myself. Take care.

          Reply
  • I have Fibro, Severe Neuropathy in hands and feet, and many other health issues. I am also HLA-B27 Positive. I am cold and hot all day and night, but mostly hot all year around. I constantly need a fan blowing on me and on my face. You can purchase fans on a cord to wear around your neck. Try searching the Internet for one or two. (Don’t buy the cheapie ones) The Good ones will have 3 batteries. More power. I could nor make it without mine and that’s the only way I can get away from my home. Please check out my website. I am founder of a Yahoo Fibro/Chronic Pain Support Group for 17 yrs…. http://fibromyalgiahelp.homestead.com/index.html Thanks, Nancy : )

    Reply
  • It takes very little exertion for me to start sweating, then it takes forever for me to stop. At work I’m wearing a jacket at my desk when everyone else is comfortable. Very frustrating.

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    • Hi, John. It is frustrating. Lately, I have been freezing most of the time but then all of a sudden I am overly warm for no reason.

      Reply
  • I have Fibromyalgia and hypothyroidism, I cannot tolerate the heat, which is pretty bad since I live in the South. However, my feet are always cold, no matter the time of the year.

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    • Hi, Gwen. Heat intolerance and living in the south are not a good combination. I lived in southern Florida for three years. I was miserable most of the time. But I sure do miss it in the winter months.

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  • I too have had issues with heat for most of my adult life. I always thought it was some stupid health related quirk, but never knew why it happened. After being dx’d with Fibro in 2011, I found out why I had so many of these health “quirks”, they were actually symptoms that many people with FM had. What vindication and validation to see that what I had wasn’t unique to me and wasn’t all in my head.

    For the horrible night sweats, I buy bed pads that wick away moisture. I no longer wake up soaking wet and have to change sheets. What a glorious change that was. They are called “TENA InstaDri Air Underpads” and I buy them from Well.ca in Canada. I cannot recommend them highly enough!

    I too have a fan on my face 24/7. I sincerely hope that a cure or some kind of medication is found to help us regulate our body temperature. It’s a horrible thing to live with that I would never wish on anyone.

    Reply
    • Hi, Shannon. I had hot flashes and night sweats for 25 years. They stopped 2 years ago, I am so grateful for that. I am still heat sensitive and I have been since I was a child. And now the cold bothers me, too. I would rather feel cold than too hot. With so many crazy symptoms I think we all start wondering if they are in our head. Validation certainly helps see that is not the case.

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  • Hi, I have fibro, Raynaud’s and hypothyroidism, etc, etc!! I have hot flashes, or hot flushes as we say in the UK, I am always freezing cold, wear thick woolly socks all year round, and am unable to sweat, so the flushes turn into very long periods of overheating, whilst other parts of my body freeze! I just get nice and warm before I have to rip off my jumper in almost panic and the same with my socks. I do suffer from panic attacks and if I can’t remove things quickly enough it can escalate into one. Thank heavens for my lovely, long-suffering husband, George, for putting up with such ‘princess’ behaviour!! I do find it embarrassing in public.

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    • Excessive sweating is awful and embarrassing, but at least it releases the heat from your body. When you can’t sweat it’s even worse. I have experienced both. I can see how it would it would bring on a panic attack. When it happens to me it feel like I can’t breathe and like the collar of my shirt is suffocating me. Thanks for sharing and I hope you and your husband enjoy the holidays. 🙂

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  • Thank you, and I hope you have a good Christmas too. We are going to my daughters, so lots of fun with our grandchildren! ?

    Reply
  • Hi there, That explains a lot because I am post menopausal and have been for 10 years. Still get hot sweats and at night I have the cover off then back on again and sometimes this .can go on all night. Constantly have to wash to freshen up because of sweating. Recently had to use Canastan cream for itching, nothing majorally wrong, just sweating to much. Drives me crazy. Then other times I can’t get warm and feel frozen to the bone. Having hot water bottles, heat pads & Sat on top of heater. Sometimes the only way I can warm my hands is to emerge them in hot water.
    I suffer with Fibromyalgia, nerve damage in feet, back and Arthritis.
    I do find running cold water on my wrists does help to cool down.
    Good information thankx

    Reply
    • Hi, Jan. I am having one of those frozen to the bone days. It’s cold, rainy and windy today. I would welcome a little heat but then my skin would probably start stinging and itching. Thanks for sharing your struggle with temperature sensitivity. It makes us all feel a little less crazy. 🙂

      Reply
  • Hey there,
    Thank you so much for your post. I have been suffering with both extremes temperature for years, and have always had it dismissed as the menopause, even though I had a hysterectomy 4 years ago and have turned 50 last year. I have always said it was the Fibro, that all my thermostats are broken because I can be burning up on the outside, and be shivering, or feeling freezing cold and sweating profusely, or suddenly over-heating. HRT, has not cured it, and I am different throughout the year, sometimes it seems to get better, sometimes it’s much worse. I posted a question about this a couple of years ago, and I am so pleased to come across this, as again it confirms that it is not just in my head. So thank you very much. Sx 🙂

    Reply
    • I am happy to at least put your mind at ease. Some of the symptoms of fibro seem so bizarre, especially when they first start. It’s easy to start thinking we must be crazy. I think one of the things that helps the most is finding out that we are not alone. It’s not all in our head and there are other people who know what we are going through -without having to explain or feeling like we aren’t believed. 🙂

      Reply
  • 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!!..

    Reply
    • 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. 🙂

      Reply
  • 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

    Reply
    • Great tips! I have three pairs of socks on today.

      Reply
  • 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.

    Reply
    • 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.

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  • 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!

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    • 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.

      Reply
      • 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.

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        • 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.

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  • 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.

    Reply
    • 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.

      Reply
  • 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?

    Reply
    • 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.

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      • 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.

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        • I had to leave my job too (I loved it), which doesn’t help with the fibro + depression-anxiety symptoms…

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      • 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.

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        • I am 60 now so I will try to hang in there. Thanks Eileen.

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    • 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.

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  • 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.

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  • 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.

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  • Im hot in the summer ,extremely hot,cold to the bone in the winter ,the heat seems to much for me

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    • 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.

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  • 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.

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    • Hi Sarina. Heat bothers me more, too. I am glad I could help show that you are not alone.

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  • Very interesting article especially about the hot flushes going away after stopping Lyrica and the antidepressant.
    I have recently weaned off Lyrica and am now in the process of weaning off Cymbalta and then Lamictin for a brain trauma after falling and hitting my head two years ago.
    I am 63 now and went through menopause 8/9 years ago with hardly a problem despite my mother suffering badly with her menopause. About 5 years ago I started to experience ‘hot flushes’ but only where I needed to remove a jersey and then needed to put it back on again about 15 minutes later. It mostly happened about 11:00 at night. Since I was diagnosed with Lyme disease in South Africa in 2010, I put the hot flushes down to a probable infection of Babesia.
    The hot flushes went away with my antibiotic treatment for Lyme but started up again slowly about a 12/18 months ago. Hopefully my hot flushes will also disappear once I am completely off these medications. Currently, my nightly hot flushes help me to feel warmer during the winter evenings and nights with any discomfort. The worst I experience is damp hair in the nape of my neck but only during the daytime.
    It will be interesting to see how things unfold for me once I am drug free.

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  • I have a very hard time with high heat and humidity. I have always drank a lot of water but right now I am so retry much drowning myself with water. I put lime and lemon slices in it. It tastes good and it keeps me from getting bored with just water. When I’m home I do t wear a bra. It helps somewhat. And right now our AC is out, and I’m having a hard time . Thank goodness for ceiling fans and ice packs. I get over heated if I do any strenuous work. The other day I passed out, so I’m just taking it easy for now. It’s hard for other people to understand which frustrates me, but nothing I can do to change that.
    So, loose , light clothing, a lot of water, ceiling fans, ice packs and relaxing when I can is all I can do to get through this heat wave we are having . High 90’s and some 100 days.

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    • Hi, Mary Jo. These temperatures are brutal right now and I have passed out from getting overheated a few times before. It does get frustrating that people don’t understand. Try to let it get to you and take good care of yourself. It all we can do!

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  • Omg where do I start I’m so frustrated. I have fibromyalgia and I’m hot all the time. I got off the couch at a friends house and her husband sat down. He said “damm this seat is on fire” I was humiliated. People can feel the heat coming off of me. I take Lyrica and I’ve also had a partial hysterectomy. My thyroid has been tested and came back normal. Im ready to pull my hair out?

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    • Hi, Jenine. I started having hot flashes at 35 and reached menopause at 45. They were just like you describe plus my whole head would be dripping with sweat. That was so embarrassing. So I was having hot flashes long before I started taking Lyrica. But after going on Lyrica they became more frequent. The sweating was worse too. When I stopped Lyrica the hot flashes stopped. It may be a coincidence. Although I can’t tell you how to make them stop, I can certainly empathise with you. I kept a small hand towel and a battery operated fan in my purse.

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  • Hi, I’m a man with FM living in UK. I found this blog after searching for ANYTHING that can help with the heat intolerance and sweating. Quick temperature changes set me off and any exertion as well (I’m not overweight). I’ve just been diagnosed recently but had pains gradually getting worse for years now. The heat intolerance and sweating began 20 years ago I’m guessing, but this seems to be getting worse over the years too. I thought it was a separate issue but have since discovered the connection with FM, but I’m not sure what started first for me, the pains or the sweating.
    I certainly don’t get pain like some of the posters on here, but I’m really suffering with the heat and sweating at the moment!
    I keep getting cold shivers like my body is trying to regulate but my thermostat has had it!

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    • Hi, Gary. I have not been able to handle hot weather since I was a child. The excessive sweating started when I was around 30 years old and went on for 25 years. A few years ago the sweating stopped but now my skin stings and burns when I feel hot. I have been cooped up in the house all summer. So I am actually looking forward to colder weather even though I will be freezing all the time. When I was first diagnosed the pain wasn’t so bad and I had pain-free days to boot. The older I get, the more pain I am in and the pain is ALWAYS there now. You never know what fibro is going to throw at you. Hang in there!

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  • I live with lupus and fibro. I keep frozen grapes and frozen banana slices in the freezer. it cools me from the inside out. when I am out on errands I get a milkshake which also cools from the inside out.
    I have a pet cooling mat I keep in the refrigerator. it is good for cooling off when you come in.
    The Artic 02Cool wrap is the best wrap I have found.

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    • Those are great ideas, Cathy. Thanks for sharing. I especially like the pet cooling mat.

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  • HI my name is David I have fibromyalgia and have bad problems with both hot and cold I don’t know what to do night sweat’s pain from my face eyes inside out and the touch bones are very sore feels like I may be going blind and it radiates through the whole entire body to the feet edema with all this it is very overwhelming thank you for your time best wishes to all pray for a breakthrough cure to help out God bless

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    • Hi, David. I am so sorry to hear you are having such a rough time. Never give up hoping there will be a breakthrough for treating fibromyalgia. I will pray for you to feel better.

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  • Hi, I’m a 32 year old male. I’ve struggled with pain for 4 years, and just this past week was finally diagnosed with fibromyalgia. I basically never have a comfortable body temp. Even when I feel like the temperature is OK, I usually have a light sweat. Once I start sweating though, if I start to take off layers I instantly become uncomfortably cold due to the fact that I am now wet. I haven’t slept in months without waking up drenched, other than a week long period that I used Rick Simpson oil… The sweats went away completely. However I stopped using it completely because I was having crazy withdrawals on the days that I chose to sleep without it. So I’m now back so sweaty, interrupted sleep every night.

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    • Hi, Brandon. You might want to try temperature regulating sheets for your bed. They can be kind of expensive and I have never tried them myself but I have heard they really help. If you check out Shannon’s comment on this page, she uses TENA InstaDri Air Underpads on her bed. I am really sorry you were diagnosed with fibro. I wouldn’t wish this on anybody.

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  • Hi

    I was diagnosed with FM this year after 10 years trying to figure out whats up with me, during winter I have bad headaches and upper body pain and in arms. During Summer is when it is the worst for my lower back and pain goes down my leg. I get crippled. 2 Dr’s say to move to New Zealand or Tasmania. Do you think moving to melbourne will help as those 2 other places are out of the question?

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    • Hi, Jamie. From what I have read Melbourne doesn’t have extreme heat or extreme cold. That might help but who knows. I often wondered if I lived somewhere that the temperature doesn’t wildly fluctuate if my symptoms would be better. If you decide to move, let us know if it helps. Take Care.

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    • Try horse lintemint (sp) for pain the gel works best. Usually found @ an animal supply store.

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  • HI I have fibromyalgia from my’head lot of problems with all but my eyes is a hard one I pray I don’t go blind pain unreal feet around the toes and hands fingers it just won’t turn you swelling in face to feet m muscle joint pain soft tissue thanks to all I pray for a breakthrough or care I know how horrible ur life is god bless stay strong best you can

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    • Hi, David. I am sorry for all you are going through. God bless you.

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  • I have a very difficult time with heat . My poor husband. He’s cold…. I’m burning up. I have learned to dress with very loose, cotton, ( which is best for me) and most of the time I go bra less. That also helps . Cool
    Showers. Lots of ice water with lemon or lime. Cold packs. Staying out of the sun. Now that the weather is changing ( l live in Michigan) I am doing some better. Except for sleeping. I still wake up feeling as though there is a furnace inside of my body. Wakes me up every night. Cotton night gowns are a must!!!
    I keep some of my summer tops out for my hot flash change of clothes days.

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    • Hi, Mary. I do a lot of the same things except for the cool showers. If the water is cool it makes my muscles tense up. I was looking forward to the cool weather but now I am getting more migraines. Take care.

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    • This is me & my poor husband we also live in MI

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  • I am absolutely miserable!! I am so alone and sad.. I think everyone thinks I’m crazy and then I think I am my chest up is hot and sweating and below my waist I’m freezing.. I’m going through menapause so that doesn’t help. There’s days where I cry all day and try to stop but can’t and in the meant time sweating.. I just got my gallbladder out too . If there’s someone out there that can help me please please write me back.

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    • Hi, Shelley. Menopause combined with fibro is challenging. I am so sorry you feel like you are alone. Have you heard of My Fibro Team? It is a social network and online support group for people with fibromyalgia. It is a place to ask questions and vent in a judgement-free place. You can find people based on location and age. I have developed some real friendships there with people who live near me. I wish you the best and please feel free to contact me anytime.

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  • It’s only the very start of the winter season and I’m already freezing all the time.
    I’ve had to stay covered up even during the day.
    The temps haven’t been that bad low 70s. Day time and 40s and 50s at night.
    I’m very fearful what am I gonna feel like when the temp really starts to drop.
    I’m miserable already.

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    • Hi, Linda. All summer I have wished for cooler weather. The heat is hard for me. It has finally cooled off. It’s around 55 degrees today and I am freezing. Although I do find it easier to warm up than to cool down. Let’s just hope it doesn’t get bitter cold.

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  • Hot all the time, hypothyroidism. Never thought the hot flashes could be anything besides menopause. I’m only turning 40 in a couple weeks.

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  • I live in New Zealand, and we are just coming into summer now. The heat is by far the worst for me. Luckily, I feel much more comfortable in the cold. It’s 28 celceius here today which I think is about 82 degrees for most of you. During hot days I can feel a range of different symptoms: either sweaty, flushed and nauseated OR shivery with goosebumbs, cold hands and feet but flushed face. I’m curious to hear if others feel really cold on a hot day? I make sure to check my temperature, to make sure my core body temp isn’t too high, and it isn’t. I just feel freezing cold but roasting hot flushed face! So weird! I think feeling cold during the heat has been more obvious since I became pregnant (I am 7 weeks). At the moment I hanaging out til the evening when it gets cooler. We are buying an air conditioning unit this week because I have had enough of the heat and don’t fancy suffering another few months in the heat whilst pregnant ?

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    • Congratulations! I haven’t felt hot and cold at the same time in the summer (unless I had the flu) but I have felt that way in the winter. It is not that uncommon, though. It probably has a lot to do with hormone imbalance. I wish you the best.

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  • I have Fybromyalgia and sensitive to hot and cold weather. Hot weather makes me feel burning hot and cold weather chills me to the bone to the point if being miserable enough to never leave the house if I could. Pondering rehoming my animals so I don’t have to go outside to care for them. Puts alot of stress in marriage as he does not get how the weather bothers me

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  • I just found your site. I have had firomyalgia for more than 35 years now . My biggest problem is getting hot and cold almost at the same time . I can be sweating and freezing at the same time . And this has caused me a lot of problem. It exasperates all my symptoms . But the worst one is that when I sweat then I get cold , and that causes me to have symptoms like asthma .
    And also when I have been some where with AC on in a low temp for 6to 8 hrs like in the airports or airplane or even at work , later I have become very sick .i have gotten Gi problem ,like very acute Gadtritis ,which has bed ridden me for 4 month .when I get like this I lose my appetite compeletly, I get very nauseas , I get very bad heart palpitation , and my abdomen gets hot , and pulsates .but I don’t get diarrhea ,nor I vomit . Also my depression gets worse .i have tried to find out if any one gets like this being exposed to cold temps , but never found anything on this .This really scares me . I also have very bad post nasal drip which get collected in my throut ,and causes wheezing , just like asthma .I think the cold penetrate to my abdomen & I get inflammation of stomach,& intestines & lungs . So I like to know any one with FMS has experience this kind of episode at all . The Gi problem or the asthma like symptoms . I thank you for your time and respond ,it would be great help knowing this . ?

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    • Hi, Malihe. I have the asthma symptoms and migraine but not the GI symptoms. When I do get nauseous it’s from the migraine. I wasn’t diagnosed with asthma until I was in my 40’s. Any extreme in temperature, hot or cold can set off my asthma and asthma is caused by allergies. My doctor said if the allergen is something you breathe in, your reaction will most likely affect your eyes, nose, and lungs. If the allergen is something you consume, you’re more likely to have symptoms in your mouth, stomach and intestines. And any allergen can affect your skin.

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  • I was diagnosed with fibromyalgia and at a time that Social Security was new to the idea. My feet are usually cold during the winter so I have to keep socks on all the time. Living in the southwest, I know my body prefers the warmer temperatures of spring summer and fall. Early on I took water aerobics for another health problem. Getting in what felt like zero degree water was very hard. I cannot take cold water in a pool or ocean in summer. During the winter I feel stiff at times and have to wear extra clothes. I usually layer clothes. But at night I must sleep hot. I have a cool memory foam by Sleep Number on my bed and I sleep well. I still require sleep meds to sleep longer than 2-3 hours. I dont like my upper arms, chest, legs and feet to be cold. I know I have greater sensitivity to cold than heat. And during a flare and I hurt I have to have soft on my bed. I have gone through several featherbeds but now have that cool memory foam 2 inch on my bed. It makes the bed so soft and if I get cool I use extra blanket. This particular memory foam adjusts to your body temperature while you lie on it with sheet over it. And this is the best one I have found. It is not like the egg crate type foam. It is solid. It has helped me a lot. I used to hurt so bad but now do like my Dr. Has told me. If you have done too much or start hurting, take a step back!

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    • Hi, Linda. Just the thought of getting into cold water makes me cringe. I also dress in layers. Now that is cold (really cold) I wear insulated underwear and 2 to 3 pairs of socks all the time. A memory foam topper made all the difference for me, too. Couldn’t sleep without it. And I can’t sleep without help from amitriptyline. Your doctor is right. Pacing is very important. Lately, it feels like for every step forward, I take two steps back. It is frustrating because there are so many things I want to get done. Take Care!

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  • I have had Fibromyalgia form at least 12 yrs now and one of my first symptoms I noticed, besides sensitivity to light and sound. Was how cold I would get in the winter. It wasn’t a normal ” oh it’s cold today ” It was a chill to my bones, and it took me forever to get warm again. That’s when I discovered heating pads. They are good for pain and they help warm you up!! But on the flip side I noticed abt 7,8 yrs ago that taking a shower or bath heats me up to boiling. So in the summer I turn the AC way down , in the winter I turn the heat way down or even off when I bathe. Something else I found out recently is that my son has Fibromyalgia also, he’s 30 now.
    My mother had it for way longer than me. So now they think it might be hereditary. Also I believe that males with this disorder also have trouble controlling their body temp. Because my son can’t ever seem to get warm enough.

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    • Hi, Kimberly. I was the first one in my family to be diagnosed with fibromyalgia. I believe that both my aunt and grandmother also had fibro. I am also worried that my sons may be diagnosed with it at some point. They both have difficulty sleeping and my younger son has neck pain and frequent headaches. I used to only have trouble cooling down in warm weather but now I can’t warm up when its cold either. Thank goodness for heating pads. 🙂

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  • I was diagnosed with fibromyalgia four years ago and after being sent a Medical Cooling Form to apply for help with summer cooling bills, I have just researched thermoregulation and fibromyalgia. Bingo! It is summer here in Australia and I live inland on the Murray river where the summer maximums range from 25 to 45 degrees Celsius (77 to 114 Fahrenheit) and the winter minimums range from -5 to 10 deg Celsius (23 to 53 Fahrenheit). I have a lot of trouble with excessive sweating, mainly in flushes and generally only during the day, What i was finding hard to explain was being hot outside, but not uncomfortable, then going inside to air conditioning and suddenly being flooded with perspiration from my scalp and face- sweat dripping off me- hair except for the crown, soaking wet, sweat running in my eyes, makeup literally running off! It is very embarrassing and not a good look for a hairdresser/beautician Thought it may have been hormones but I am post menopausal, aged 60 (last period five years ago) and I dont have other severe menopausal symptoms. I am so pleased to have found a cause for this and will talk to my rheumatoligist at my appointment next week. I have also recently been diagnosed with hypothyroidism and on further reading this may be connected with my fibromyalgia as well. Thats fibromyalgia, diabetes and hypothyroidism in four years. But I am lucky to get a disability pension due to depression and fibromyalgia so am better off than most as I dont have to work to support myself. Life is good!

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    • Hi, Joy. I just had my disability hearing a few weeks ago so I am still waiting for a verdict. I was only 45 years-old when I entered menopause. I continued having hot flashes and excessive sweating for at least 10 years after. I was so happy when it finally stopped. Now instead of hot flushes and sweating my skin stings and burns when I get overheated. But you’re right, life is good. Take care!

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  • Frist let me say, God bless us all with this unfortunant MESS …… i have thi crap. i sweat excessively from my head only an freeze from my neck down so that make it JUST SOOOO WRONG. My pain is threw the roof i stay depressed i feel sooo sorry for any one who has to try to live with this . some times i have to change clothes 3 to 4 tines a day if i have to clean my house or cook alot for my family its horrible. an nothing helps. so God bless yall

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    • God Bless you too, Gina. I am sorry you are having a rough time.

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  • I also have fibromyalgia and am constantly so cold it’s painful (plus I live in a part of Canada which has two seasons Fridgid and Hot and Humid lol). A heated blanket has been really helpful for my cold sensitivity. This illness is so infuriating. Nothing in my body seems to work properly anymore.

    Thanks for the info!

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    • Happy to have you here, Stephanie!

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      • Hello.
        I’m 45 years old and have had problems with hypermobility and pain since I was 15.
        I did a big fibro test 1996 but the doctors couldn’t agree so no diagnos. Got a fibro diagnos last year. Have psoriasis migreens and eyemigreens and small fiber neuropathia in hands and feet arms and legs and some other miss funktions. I have problems with heat. I rearly swet I get over heated and fast. My skin looks like a red and white leopard and it realy hurts when some one tries to cool me down. It feels like the skin will crumble and fall off. I also itch espesialy my feet and hands when they get hot.
        When I get cold I mostly get numb.
        Dropping things and hurting my self and some times others..should have a fumble zon sign on my forehead …but its better than the over heating thing.
        I think I have boreliosis ore some other tic thing going on .Maybe not fibro at all..ore both ..who knows
        Have a nice day /Liselotte

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        • Hi, Liselotte. I am so sorry you are going through this. I grew up out in the country and have often wondered if I really had Lyme disease…or both. Take care!

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          • Hi Sue
            I live in Sweden and whats most anoying is that it doesn’t matter if its a tic disease ore fm. Here is no cure for neither. Exept trail and error in the herb garden lol 🙂
            At least I can still work and now I have 140 minuts till my nightshift ends need some sleep now. Cant spell or speak….
            Night night and may your day be sunny 🙂

  • I also have sensitivity to hot and cold! I have even had heat stroke.

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    • Hi, Brenda. Once I was cutting the grass and became overheated. But then I felt really cold and almost passed out. I couldn’t breathe either. I don’t know if it was heat stroke or my first asthma attack.

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  • I have fibromyalgia n I’m one of the people that are always cold. Often tell my friends I’m cold blooded I swear coz no matter what I do I’m freezing all the time. Even with the lovely weather we had today I was still cold xxx

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    • Happy to have you here Sarah. I am cold a lot more than I used to be. It is really nice today and I am wearing a sweatshirt and I am still cold. A few years ago it would have been the opposite. Take care!

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  • I am having problems with being extremely Hot all the time. Now my skin on my back burns, from the knees down is a burning sensation inside my legs that moves up and down. My thyroid has been nuked so i take meds every day. I can feel the ac is blowing in cold air but if I wrap up i am kicking covers off quick. I have crohns, the doc says fibromalgia too. If I question my thyroid doctor about having low thyroid and yet my symptoms says the opposite on some question I feel she shrugs me off due to she is the doc and most doctors hate internet and googling medical issues.

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    • Hi, Teresa. Some doctors do hate it when you tell them you read something on the internet. It helps if you mention a reputable website or name of a research study. Sometimes you have to change doctors until you find one that really listens without being condescending I once had a doctor say “Well if I went on the internet and said dandelion tea cures fibromyalgia I would make a million dollars.” I got up and walked out and never went back to her again. Gentle hugs.

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  • My doc just said if I’m too hot it has nothing to do with fibromyalgia?? I’m either too hot or too cold. It’s not good when I’m working too hot. When I’m sitting relaxing too cold. Tired all the time no energy

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    • Hi, Dolores. The truth is that many still do not know much about fibromyalgia. Some are just uninformed, some are close-minded, and some still don’t even believe fibromyalgia exists. This is why it is so hard to find the right doctor and why self-care is so important. Take care.

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