Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome

This is not a MINOR symptom to me. In fact this is one of the worst symptoms. I become SO HOT so fast, and it is NOTHING like a hot flash! People say to me, I get hot flashes too, you should take hormones, or you should take supplements, but TRUST ME, it is not a hot flash and it feels nothing like a hot flash. I went through Menopause in 1991 after surgery, and I have been on Hormones for years. I have had some hot flashes and its not anything like it. This is heat that comes on so fast over my entire body and it doesn’t go away after a few minutes. It lasts for hours, sometimes all day. It is intense heat, and it HURTS. ALOT. Its as if my body feels it as pain, not just heat. And it exhausts me to a point of going to bed. Its embarrassing, its a pain in neck for me and my family. So for me, its one of the worst symptoms of Fibromyalgia.

It’s not minor to me, either. I have learned that when I wake up freezing in the morning, I quickly sip hot tea, put on my electric shoulder pad heater, and wait to unfreeze. Sometimes I put a little electric heater on in my bedroom, expensive as it is to run.

When too hot, in class, for example, I sip on iced water. That usually cools me down quickly. We have to dress in layers, even in bed, bed jacket on or off, shawls, etc. It’s very difficult to get comfortable and stay that way for a little while.

Yesterday I went to a lecture, it was stormy outside, but usually is too hot inside, so I wore a light shirt, a warm vest, and over these: a rain cape with hood. I might look silly but I needed to strip it all off (except the shirt) when the room filled and got heated. It’s all part of the Princess and the Pea syndrome, over-sensitive to everything. Well, it won’t keep me from going out there!

This is SO not a minor issue for me. I love winter because if I am cold I don’t sweat. In warm or hot weather my hair literally drips with sweat. I train on my job and have stood in front of my company with my hair soaking wet and me just burning up. Gettting bloodwork this week and hope they find something to treat.

The temperature reading to my body as pain is a very familiar thing to me. Too cold or hot and racking pain everywhere. Gasping for air like a fish out of water, eyes bugging. Oh and trying to say walk across a large parking lot in the heat … yah right.

With fibromyalgia I can feel the weather drop outside when still in bed I ache more and more stiff from head to toe. Heat helps the pain.

I have issues with temperatures too. The winter months are the worst for me now as I’ve developed neuropathy in my hands and feet. I often wear fingerless gloves to keep my hands warm. I also use heating packs for my hands and feet when stretching out on the sofa.

I often have trouble staying asleep at night. I’ll wake up too hot and I can’t find a cool spot. After doing some research I bit the bullet and bought a Chili Pad. Now I find that I can’t do without it. It consists of a pad that goes on the bed between the mattress and fitted sheet. It is connected by tubing to a control unit with water reservoir. I set the desired temperature using a remote control and it pumps water through tubes in the pad and maintains whatever temperature I set. You can set any temperature from 47 to 118 degrees.

I’ve found that my best temperature is 62 degrees. I set it here and then bundle up under blankets and I’m good for the night. It works like a heat sink, drawing heat away from my body.

There are times that I’ve been very cold when I went to bed and on those nights I set it to 105 degrees and the bed is nice and toasty warm when I get in. Then I set it back to 62 and I’m good for the night.

Since getting this I haven’t woken up with night sweats either. When I bought this I used my pre-tax flexible spending which made it much less expensive.

John,

Like you, I have neuropathy on top of fibro and chronic fatigue. My temperature bounces around at a moments notice and I have a hard time with sleep!

Could you please share where you found the best deal on the Chili Pad?

Thank you for your time,

carolyn

This has been a problem to me for years. Mostly I’m cold – very cold indeed in winter – but as soon as I am slightly stressed (e.g. five minutes late for an appointment) or the temperature rises, I start sweating profusely! This has restricted the kind of clothing I can wear (need to conceal large wet patches!), and makes it impossible to join in with activity classes of any kind (people are embarrassed for me and don’t like me dripping all over the floor!). I keep my hair very short so it can be dried quickly. People simply assume I am extremely nervous, and try to reassure me.

I did hear a mention of some herb that can help a little with this, but have forgotten what it was. Can anyone help?

Oh wow, I didn’t realize that this was directly related to my fibromyalgia. I am HIGHLY sensitive to the temperature and have been for years, and people are always telling me to deal with it. I have a picture of me from a year or so ago at my parents house where I’m clearly dripping sweat and had been begging for them to turn a fan on or anything, and I’m standing next to my dad who looks fine. :/ Many times I go straight from way too cold to way too hot with nothing in between. It’s good to know I’m not alone–and I’m definitely going to go check out the tips now.

I too suffer with temperature sensitivity…the cold really bothers me- i cannot be out in the cold weather very long- it really makes me have horrible head issues like i am going to pass out- i get severe dizzy spells as well…it’s def no fun and a minor symptom for me either- the sweats come on all at once as well- GRRRRR

The cold has the same effect on me too Gina Then the hot flashes – as some ppl call them – just hit to the point I can literally soak 3-4 night shirts in one night and I actually get heat blisters where my skin touches ie: under breasts NOT fun and I feel for anyone with this problem

Doesn’t help if you have perimenopause as well..argh..but yeah, I can go from a hotflash(outside when it is below zero to cool off to freezing w/in an hr..uff’da. Nicole

Carol, you get the dizzy spells when you are out in the cold – almost like you are going to pass out?? i hate that feeling and when i do a lot of walking or over exerting i feel like this too

I have these problems when I exert to any degree! I will begin to sweat horribly and begin to black out. I must find a place to sit down or I’m down (and out). It’s brutal. if I go to the market, by the time I get to the car I’m about to pass out and have to get in the car and turn the air conditioner on high, btw, I can’t go alone cause I can’t put any groceries in the car and I’m parked near the store because I got a handicapped sign. I have to do the bulk of my shopping by email. The market delivers it right to my kitchen and I can put it away slowly, frozen food first! I dread the heat, I hate that summer is coming, I can’t even go outside!

I thought it was just me!
I spoke to the doc about this and she told me I was probably having menopausal symptoms, explained to her that Im well thro the menopause and these hot moments are nothing like the hot flashes!
I can be shivering in the heat of the day and as night draws in and the temperature drops I sweat!… profusely!
Its a nightmare, never know how to dress, hate being in a social environment now because I literally drip perspiration.
The beta- blockers the doc said might help did zilch for the heat.. just made me feel spaced out and shaky.
Ah well, thses things are sent to try us I guess, and try us they certainly do!

The fibro-fog has cleared and I’ve now remembered which herb is supposed to help with excessive sweating – sage – though all the writeups I’ve looked at today suggest it is most useful for menopausal hot flushes, and these are just not the same thing! However, I remember seeing a tv program in which a young man was helped by taking sage tablets.

Fluctuate like crazy! Grrrr….Can’t stand extreme temp changes, such as going from outside in winter to a heated building or outside in summer to an air-conditioned one. Try to keep same temp in the house, but the heat of the day warms it up too much (I start getting hot), then the air kicks on (I start getting cold), just can’t stay comfortable! Summer is the worst for me, because I also swell up like a balloon as soon the temp reaches 80 — which it already has for a few days, so it’s going to be a long one

So glad to know I’m not alone with this sympton, but on the other hand, so sorry to hear you all are also suffering from this symptom. I definitely do not consider this a minor symptom.
When I get cold, it is so painful and very difficult for me to warm up again. But I do think the heat is worse. And it seems to happen if I exert myself just a little bit….if I take a shower and don’t sit down to rest before I finish getting ready, I’ll be dripping in sweat by the time I am done blow drying my hair. Going to the mall is a joke….I usually end up with my hair soaking wet and a beet red face after we’ve walked around for 30 minutes. Grocery shopping is the same unless I go really really slow.
I’ve talked to my doctor about it several times and he says it’s a fibro symptom, but doesn’t have any ideas how to treat it.

My choir is singing in Italy this summer. The biggest reason I decided not to go is that Italy is very, very hot in July and I didn’t think I could handle that. Just one more restriction.

I get so hot in an instant, flushing and sweating it’s horrible. Needless to say I don’t like the summer months anymore. I get the same thing when I’m out at the grocery store etc. all of a sudden my face is beet red and I feel horrible & dizzy too. I didn’t realize it’s part of having Fibro. and CFS, I wish they would find something to help us all.

Hello my “sweating sister sufferers!” …I’m sorry to hear so many have this problem but relieved to hear I’m not alone!
My trouble regulating my body temp is awful too…I would actually put it up there as bad as my pain-{Have to take morphine 4x day plus other meds} I like some others will over heat so fast that I begin shaking, seeing stars & feel as if I’m going to black out. It takes a long time before I can cool back down & my face will be so flushed it looks like I’m recovering from some sort of facial chemical peel. It’s so bad that I have trouble showering & getting myself ready…Now on top of my chronic illness/pain keeping me back from social activities-etc, the inability to regulate body temp is another huge factor! Sensitivity to temps have always been an issue for me but with time learned how to deal with it. I’m lost with how to regulate body temp because everything sets it off! I would so appreciate any helpful suggestions from anyone. Best of luck to everyone, I so wish our bodies would say “April fools!” to us. ~peace, laughter & gentle pain-free hugs*

I read that this is one of the sympathetic nervous system symptoms of fibro. Makes it really hard to tolerate anything but
very stable temperatures. I am rarely comfortable and often have to either cover up or uncover. I doubt there is a cure for it.

When I get very cold, I know I am going to have a major flair up of my CFS symptoms. Maybe becoming cold is one of the symptoms, too? I am usually even temp, but I can get the chills so fast, and then I have to get to bed to get warm, due to the cold that comes into my body. It also starts making me ache all over. One think I notice is that I sweat much more than I have ever had in the past. I used to walk several miles after work, before I got sick, and never sweated, now, I do maybe a quarter to a half mile and I start sweating away!

I’ve been reading these posts for a long time, relating to so much of what has been written, but this really hit home! For years I thought I was going crazy, hot as blazes one second, freezing the next, never knowing how to dress, dreading having to go out with my husband for fear I’ll have a heat attack & sweat so bad that it actually drips off my hair! I get very cold, very quickly, so I have a blanket in every room of my house, and yet I can only stand to be covered for a few minutes, because then I get so overheated I can’t stand it! One of my doctors told me it was because of the meds I’m on, since I’m already way past menopause, and said I’ll just have to deal with it!
It makes it hard to deal with the aches & pain that we all deal with – I can’t stand the heating pad for more than a minute or two, and an ice pad actually feels like it’s burning to me, and makes my pain so much worse! Not one of my doctors has ever mentioned this as a symptom of Fibro – go figure! Thank you all for your comments here!

I’m exactly the same way, Sue. I’m shaking with cold…put my sweater on…dripping with sweat…take my sweater off – with only 3 or 4 minutes in each cycle. Recently, I was awake for nearly 4 hours in the middle of the night, because I was playing the same game with the quilt. Fibro is so maddening!

I’ve got Raynaud’s syndrome, too, so my fingers and toes become non-functional, in addition to screaming at me when they’re cold, but excessively-warm weather isn’t much better. Hot rice packs help with the cold, and cold wet washcloths on the back of my neck help with the heat – sometimes.

Yes, I also have temperature issues. When I get cold, it is that “to your bones” cold, and it takes forever to warm up. Usually getting too cold leads to an entire day of pain because it lasts so long and my muscles are aching.
On the hot side, I am in the middle of menopause, so I have hotflashs often, but can relate to Elizabeth. The “heat” from fibro stays longer and causes me to sweat more, also, I loose focus with the fibro overheat. It can also, sometimes cause me to feel sick to my stomach, which I believe my brain is sensing “pain” with the heat! And fibro heat seems to affect me more when I am active and need to focus, i.e. grocery store, watching younf grandaughter, driving somewhere unfamiliar…
It’s awful to be in public with this happening.

I get dry heat at night. Or, I freeze under a pile of blankets, like last night. I did find when starting Savella that I sweated like a kid in puberty after PE. Clinical Strength deo/antiperspirant, although two-to-three times as expensive helps me with the underarm sweating. One of those good finds on the top shelf.

Oh man, I have had really bad hot flashes. I thought it was menopause, but maybe it’s more. My sleep is bad anyway, then this. Then this, does it ever freakin end.

I hate when people say “I can’t wait for the Summer.” because it’s pure hell for me. I have MS, Fibro and Raynaud’s. Although the cold bothers my fingers, toes and nose, I’m looking forward to retiring in 10 years so that I can move north of where I am (NY). It’s easier for me to add another layer than to try and cool off.

I’m in Law Enforcement, so I work at night to alleviate some of the pain from the daytime heat. When the temperature goes past 60 degrees, I’m literally a hot mess. The heat kicks in pain, swelling and fatigue so it’s very important for me to stay cool and hydrated.

Otherwise, life is great!!!

Hello everbody,like all of you I was suffering from severe sweating,I wrote an article in another department about the anticholinegic drug that stops sweating if taken{ 5mg B D or maybe even three 5mg tablets a day}
I hope this may help someone like it did me I have been taking the drug for six years now and can not go a day without the tablets.
Look up in this department on Sweating, you should find out more about it there if not you can email me ,I live in N Z and my email is murna@xtra.co.nz
All the best,bye.

Hello everyone,there is a drug called Oxybutinin that is an anticholinegic that helps sweating I have been taking the drug for nine years with great success.\
I wrote an artical in
the other place called SWEATING you may find out more there,all the best

I also have temperature sensitivity. Mine an get a little odd. I can be BURNING inside like a furnace, but my outer skin is COLD as ice. So I’m sweating and shivering at the same time.

I also have trouble in the shower. We live in a multi-home dwelling without a regulator. If the neighbhors flush their toilet, turn on a tap, or start laundry — the water can go from fine to cold in a flash. The cold water will hit my skin and hurt worse then a 2nd degree burn to me, and often takes hours to regulate. And if I take too hot a shower, I get dizzy, black outs.

I spend the ENTIRE winter under the covers in bed with an electric blanket. And when that’s not enough, I often have to take a long bath to ‘regulate’ my temp. It’s the only thing that seems to regulate the inside and the outside.

When those awful dual hot/cold flashes come, blankets won’t work. Only water seems to work.

omgoodness! i was thinking i had to be the only one alive with this severe sweating disorder with fibro. i ran across an article about how sage helps with this. i been taking about 9 capsules a day and finally it is getting under control! i can still feel the “heat” in my body but today i went to walmart and was able to do so shopping without sweating. it is so embarrassing when your head is just wringing wet and people look at you like you are from another planet. seriously if they only knew how miserable it is to be so sensitive to any heat. and yea you get the its “hot flashes” its “high blood pressure” whats your cholesterol levels? mine had nothing to do with any of those. or you get you need to exercise! hahahah ohhhh really want to come help me take care of my 10 acre garden and see who plays out first? i am thankful for the internet because without it i would have not found this information to help me not to sweat like i am in a sweat lodge. i pray that all suffers find something that works for them and that relief they find!