Fibromyalgia & Body temperature

I myself am always colder than everyone else. Sometimes to the point of if I get chilled i am in more pain and have to sit under an electric blanket for hours to get warm.

I usually say my thermostat must need to be changed!  Yes, I have waves of body heat even in the cooler winter months.  I have found some relief sleeping with a cooling pillow called a "chillow" pillow.  It slips under your pillowcase and over your pillow.  The only problem I found was that it has a tendency to slip off the regular pillow during the night as I am so restless when I sleep.  I simply applied some velcro strips to the back of the chillow pillow and on the top of my regular pillow so they just move together.  You don't need to put the "chillow" in the fridge or anything.  It just stays cool, even when my body temp. feels so hot.

The odd thing is that I feel so hot and sweaty, but my actual body temp usually runs below the 98.6 standard for everyone else.  When I reach 98.6...I am running a fever.  I know this doesn't answer any questions as to why, but maybe you can find some relief if you want to try the "chillow".  It usually runs about $30 and you can just use any search engine for "Chillow Pillow".  It was definately a good investment for me.  Best wishes...I understand.

Hi Bekah, I have daily chronic pain but have never been officially diagnosed with FMS--however, I'm always feeling too warm (much the same way as you explained how you feel).

I have been dealing with this for several years, but it has gotten worse in the last year.  I also freeze everyone at home.  In the last year, I have been sweating profusely with sweat running down my face, hair, back, etc.  The only thing my doctor has done is give me an ointment to put on the worse spots at night and then you have to wash it off in the morning.  It makes you miserable.  Does anyone have any suggestions on how to deal with this?ajmdogtwo@aool

I have the total opposite problem with Fibromyalgia.  I am ALWAYS freezing, and not comfortable unless it is close to 80 F.  I wonder if it has something to do with thyroid and hormone differences and malfunctions?  I do know of other fibro sufferers who are always too warm, so I guess it can hit either way.

Yes, I am always too warm. I have a little 6 inch fan that I run almost all winter at work. Drives the others crazy. I live alone so I can keep the temp around 63 and no one complains. Good question, I have often wondered this myself.

Hi.  I registered just so I could respond to your question!  I was diagnosed with FM 15 years ago and have noticed a big changed in my body temperature.  Like you, I always feel warmer than everyone else and have the ac turned much lower (which also drives MY husband crazy too).  Interestingly enough, when I'm having a bad flare up of FM, my face feels hot, but I'm having body chills.  I'll be interested to see if anyone else responds and has the same problems.  Good luck!

Constantly... I have a hard time with the heat anyway, it makes me physically ill... I'm hot almost always... I'd rather be cold it's easier to deal with... can always pile more on... funny thing is when I was younger I was always cold... but since fibro, life has changed drasticly...

Glad to see that I'm not the only one! I'm going to show all these replies to my husband. He thinks that something has to be wrong with me even though I told him that I'm pretty sure it's just the FM making hot all the time. I have an aunt with FM as well and she is always hot too.

I like the sound of the Chillow pillow, thanks for sharing! I'm definitely going to look that up

Ah, the crazy things our bodies do to us!

I never imagined this could be related to FM. I was diagnosed with FM about 3-4 yrs ago but the sweating did not started until the last year. I thought it might have been perimenopause, only because I had nothing else to attribute it to. The sweating always starts on my head and then seems to work its way down to my waist. So I have found that wearing a bandana around my forehead (Charming, eh?) can slow the process down. Thank God I am self employed and can wear a bandana while I work, I can go through 3-4 in an hour !!

I am definately ordering the "Chillow Pillow" and I`m thinking I will probably just velcro it around my head !!

I would be happy to hear of any other suggestions and am open to almost anything at this point.

You're not the only one. I have been diagnosed with a fibromyalgia-like illness ( I also have other issues) and I am always burning up. To make matters worse, I live in southwest Florida. I noticed that this issue became worse after I began experiencing the FM symptoms.

Your problem is not at all unusual.  In fact, I don't think I've ever met someone with FM who was not hypersensitive to either heat or cold or both.  More FM patients seem to be sensitive to cold, but I'm like you – I can't take heat at all.  I keep my house so cold, people tell me it feels like a refrigerator.  Many of us also have lower "normal" body temperatures, as another member mentioned.  For example, normal for me is 96.8 – although few doctors believe it or give it any significance. 

One theory as to why we have this problem relates to the thyroid.  The thyroid regulates our body temperature and a large number of people with FM are hypothyroid.  A few doctors even go so far as to say that hypothyroidism causes FM, but that is not a widely accepted theory.  Since the symptoms of hypothyroidism are very similar to the symptoms of fibromyalgia, I personally think it's possible that some people diagnosed with FM may actually have hypothyroidism.  At the very least, they are conditions that often occur together. 

It's certainly worth having your thyroid tested to see if that may be part of your problem.  Now here is where things can get tricky.  The standard test that is used to test thyroid levels is the TSH (Thyroid Stimulating Hormone).  The range considered to be normal for many years has now been found to exclude a significant number of people who are actually hypothyroid.  However, labs and doctors have been slow to accept the change and are often hesitant to treat patients whose levels fall within the old norms.  Mary Shomon, who has written several books on thyroid disease, has an excellent article explaining the TSH standards and even gives you information to share with your doctor: "Does Your Doctor Know About the New TSH Lab Standards?"

Thanks to the member who recommended the Chillow Pillow.  I'm definitely going to look into that. 

Here's to keeping cool!

Karen

Hi there,

I too have this side effect of fibro, It seems to be the normal for us. Do however keep track and know what is your normal high temp, because you need to know when you have a real fever with a possible infection.

As far as your husband is concerned it is easier to put clothes on and keep warm you can only take off so much when your hot.

lisa

Hello Tatoogirl

It's really nice to see you again!

I had to laugh when I read your posts, as it was just last week that I was having issues with cold/hot/humid/etc.  and just an all around trouble with regulating my body temp and I too wondered if this was a Fibro issue or another problem all together.

For me it's a constant problem and I seem to be working all the time to find a comfortable temp for me.  I have cold sweatie hot flashes and then turn around and I'm freezing.  Sometimes or most times when my FM is flaring and the pain is bad, I feel like it is even worse than at non flare times and even though I've never read any where that a FM patient runs a fever when they have a flare, I still find my self checking my temp at times cuz when the pain is at it's highest, I seem to have a temp with the similiar Flu like symptoms and I don't really understand why.

Thanks for asking this question and I look forward to reading through all the great replys you've gotten.

Take Care

Betty

PS any new pug pics on (Monti's) I think) myspace page?  We love Pug pics in our family and have tried to check in on Your pug page.

ME AND COLD DONT GET A LONG MAKES ME ACHE . RAIN AND MOISTER  MORE PAIN SOME OF THE MEDS THE GIVE ME I THINK MAKES ME SWEAT MORE THEN NORMAL.

yes.  I can't regulate mine at all.  I am always hot as hell and it seems to be getting worse.  When I take a shower it can take a couple of hours for me to "cool down"

Hi,

Just happened upon your post about body temperature.  I have fibro and also have issues regarding my body temperature.  My pain clinic does regular blood work and always checks for the proper nutrients, etc.  Last month they found I was low on folic acid.  I looked it up and that particular vitamin (one of the Vitamin B's) actually had an effect of improper body temperature regulation when someone is low.  Plus they finally started me on HRT last week.  I'm really hoping that it helps, because, I don't have to tell you how miserable it is to be sweating all the time!  I'd ask your doc to check some of your blood work.  Just a thought.  Good luck with it!

I am interested in what you wrote.....as a kid, I always had head sweats.  As an adult I would have these off and on; and now I am the same as you with the A/C etc.  Have always felt warmer than most people. I don't think I have FM., but you have caused me to investigate this....appreciate your posting.  I had polio in 1944; & have had limb problems all my life....could be linked where I am concerned.  Did you ever have polio??  If so, you will always be sensitive to temperature....feeling the cold and/or the heat worse than most.

I cannot warm up.  Most people around here are already using their air conditioners and I am still using my electric blanket.

I have the same problem.  My entire body is warmer but my feet and hands are extremley hot. I have to wear flipflops and can not wear shoes with socks because my feet get soooo hot.  My hands feel like they are on fire as well. The Ac stays on all the time.  Don't know how to treat this. If anyone knows jump on board!

yes i have the same deal going on and also mastered driving my husband nutts!

   Hello.I have the same symptoms from a disorder of the spine known as spinal adhesive arachnoiditis.I sometime sweat from the meds,but mostly from the arachnoiditis.My wife is always cold and I am always hot!  We are planning to move to are hometown which is a 2 hr drive and the area has distinct four seasons. The temp is about 10-12 degrees cooler there as well.We have  lived  in a desert area for the last 23 years where we had our business until I  became  disabled in Jan.2004.Good luck! Nicoletti.

I sweat profusely and part of it is due to my pain meds for fibromyalgia and the rest to perimenopause.  I have my heating pad on my aching joints ( I use an old sock filled with long grain rice- not minute rice, that I heat in the microwave) the air conditioning on 68 and a fan on me at night.  I find the combination works well for me!  Cold makes my joints ache like crazy and the heat makes me nauseous hot.  Got to make the best of a bad situation.

Like you, I always have my AC on sooner in the year than anyone I know and it stays cooler in my house than most walk in coolers. Now, in the winter time, I often have the opposite problem with really cold extremeties like hands and feet, etc. I also noticed this more often after my diagnosis w/FM. Sometimes when I am shopping in an airconditioned store or sitting in a meeting where everyone else is shivering from the AC, I am sweating and overheated. Good luck... Fall and Winter will be here soon, it's always easier to warm up than cool down.

 Oh yes girl I know where you are coming from with the body temperature.  My husband sets around with his jacket on & I have on shorts & a T Shirt.  And at night it is from hot to cold for me there isn't any happy medium.  Good Luck

I have found this to be true with me as well.  Although, I don't know how much being 2 years post menapause, and the effect of certain medications I am on factor into this heat wave.  It really drives me nuts.  I can tell the difference between a hot flash and the heat wave effect, but I still don't know how much my medications factor in.  I have gotten used to carrying around a towel to wipe the sweat off my face when doing even minor work at home.  It really bothers me at night when it keeps me from going to sleep.

I wish I knew what to do to identify the exact cause of my personal heat wave.  My daughter is amazed when she just happens to stand by me when I am extremely hot and she says that she can feel the heat coming off of my body.  I would love to know if anyone has any ideas about getting to the bottom of this.

My mother was diagnosed with FM and had the same problems you were describing. It was also at the same time and age that a woman could normally start menopause. She just chalked it up to that. She went back to the doctor several times and complained later on because the hormone supliments were not working. Long story short she went to a menopause specialist, found out that she did NOT start menopause. Test were done and she was diagnosed with something diffferent than FM. After two years of reaserch and multiple doctors she found out that she did not have FM. She fell victim to what a lot of doctors are doing in the past and still today, diagnosing FM when the symtoms seem to fit the bill. My mother had Lyme desiese and even after two false negatives for that she found the right doctor who was a Lyme specialist along with a pain specialist (one who specialized in FM and LYME treatment of dabilitating pain and discomfort) FM treatments can cause exactly what you are going through if you don't have FM. I AM NOT SAYING YOU DON'T HAVE FM!! I am only giving you the experience my family went through for three and a half years. Mom went on the specific Lyme ani-biotics, FM symptoms went away, she turned around 180 degrees and 9 months later went into menopause!!

I really read thoroughly your last paragraphs of your bio and would really like for you to talk to your husband and doctors about getting a full LYme series of tests done. Being originally fron Connecticut, 6 towns away from the town of Lyme I have a lot of friends and family that have been affected by Lyme. The effects of Lyme vary so much that it often gets overlooked. I have had close personal friends contract Lyme without showing the tell tale bite mark with the circle ring around it. Only a percentage of the population react and show this mark. Do the research for the tests. Even an experienced Dr. misses the diagnoses 30% of the time, that's a lot. For shits and giggles ask your Dr. to go on the ani-biotics for Lyme and see what happens. Either way look into it. BTW FM is a symptom of Lyme!! The symptoms range from aching joints, headachs, swelling of joints, mood swings, neurological issues, insanity, TMJ, weight loss, bells palsey. the list is huge!! Go to http://www.lyme.org you will be amazed and maybe get some more hope!

Yes! Yes! Yes! As an FM sufferer since 1999, and diabetic since 2005, summer's heat (of 78 degrees and over) tend to bother me greatly. I swelter, the sun feels like it is burning my skin and I tend to stay indoors (enjoying my AC) only to venture out in the evening air. When I have to go out in the heat, I wear a little battery-operated, (Dollar Store) portable fan around my neck and rely on cool compresses to get me through the day's challenges. I also carry a purfied, cold bottle of water to drink (at all times)to keep from getting dehydrated. In winter, I prefer to sleep in a cool room (65 degrees) and feel absolutely fine and refreshed upon waking. Otherwise, if the room is too warm, I wake up sluggish and feel drained and have difficulty starting my mornings.

Diagnosised with fibromyalgia in 1985 after suffering from joint pain since the mid-70s. Always sweaty, even in airconditioning, even when a teenager. Not any better now that I have been menopausal since 1990. On max dose of estrogen and still too hot. Can't keep the AC high due to cost but it sure makes it cheaper in the winter. Kept it about 65 all winter and was fairly comfortable. There is good in everything. Have more problems than fibromyalgia. DDD, osteoarthritis, failed back surgery x 2, 16 fractures, mostly on left side of body, torn ligaments, both knees, rotater cuff problems in shoulders and none of that is helped because I am also obese, 38 BMI. Finally found a compassionate MD that is trying to control the pain enough that I can function as far as activities of daily living but barring a miracle I doubt that I will ever be able to work again, and I liked my work. Other than enjoy the winter I wish I could give you something that would work in the summer except drink plenty of fluids and stay in the shade. My legal name really is catt napp. I had it changed, trying to improve my outlook on life.

Hello, I am an on-going chronic back pain sufferer. I have a morphine pump inside me and ,like you I am always running on the  Hot side. I can be wringing wet with sweat when everyone else is cold. My pain management  doctor says that there is nothing we can do to alleviate the hot feelings and sweats. It's all part of the medicine and the pain condition. I've tried on and off of different medicines the only thing I've found that even remotely helps me is ( and as a woman you can't do this),,Androgel testosterone  supplement. This slowed down the wild random sweats, but I still feel hot all the time and sweat at the slightest exertion, no matter what the temp. These sweats are a horrid thing, but a fact of life for some of us . Sorry to give you this news , but hope it helps explain that we are not alone with this.  take care,

hi there! i forgot to mention this. I carry a product caled ''creat antiphlogistic capsules'' talk about getting rid of heat! in the Phillipines & Africa whereive been a Missionary i didnt even sweat while taking 4/day  you get 100 for $10.00 Most people need 5-8 pills a day to regulate the temp. I found in tropical countries i only needed it for 5 days then the heat didnt bother me Too many of them can make you feel cold as it rids the body of toxins & heat. You can easily decide for yourself how many you need. Check out a chinese herbalist--if he cant get them, i can.   best of health!    ken [ Sho-tai health care]

I was getting hot flashes quite a few nights, and I have been on Estraderm 25 for a number of years. My gynecologist prescribed Clonidine and I haven't been bothered since.  I didn't connect the discomfort to my Fibro.  However, the Clonidine works well.  I take half a 0.1 mg every 2nd night.  It works for me.

I have had problems regulating both body tempt and diastolic # of blood pressure. I am finding that since I have been diagnosed with hyperactive thyroid, I am doing better with the temperature of my body. I have said for some time my internal thermometer doesn't work. Hopefully, with synthroid, both problems will resolve themselves.

I was diagnosed by my family doctor after a car accident 10 years ago and I have found that my body does not like it cold or hot.  When it is cold and/or drafty I get goose bumps all over and I always make sure I have a coat or sweater with me, even in the summer and if I am cold for more then a few minutes my muscles start to tense up and sometimes it takes days for them to stop aching. I really don't like air conditioning.  When it is hot out ( over 25 celius) I get exhausted really fast and I tend to spend alot of time in my basement then.   But like alot of things with FMS there are no set guidelines for people to help them understand it. No two people are alike when it comes to this curse and that is why alot of doctors scoff at the condition.  All I know is that if something that you are exposed to (be it food, temperature, stress, etc) causes you pain then that is FMS at work. 

Hey here is a very interesting response. I too have FM now just found out recently and im 25 years old so age has nothing to do with it folks. But to ur question I have always had a problem regulating my body temperature like you said u r always burning up i am always freezing cold no matter what and at home it drives my husband crazy.....lol. Well maybe with body temp and FM there is some correlation....who knows guess we have to wait for more research....

i appreciate all of your imput regarding heat regulation.  I too experience my environment (no matter where I am) as either too hot or occasionally too chilly.  I have Fibromyalgia and early onset osteoarthritis.  My 5 back surgeries and fusions have left me with chronic pain.  My medications, like many of you, add to the discomfort with heat.  Cymbalta and many of the same types of medications actually list "increased sweating" as a side effect.  Pain medications also tend to make s feel warmer than others.  But I am convinced that since my Fibromyalgia began in 1995 (when I was in a body cast and sustained whiplash in a car accident)my internal "thermostat' has been off- big time!!

My husband also complains that we live in a freezer, because I tend to run the a/c more than he feels is necessary.  But I rarely find a time of the day that I am actually comfortable.  I go barefoot or wear sandals whenever I can.  I believe that helps.  I also always were my hair up and wear clothes made from natural fibers (cotton, silk...).  My pain management specialist considers this issue minor and not worth much discussion.  But if it was happening to him, I believe he would be keen on finding some remedy.

     As to the comments about pugs, I can assure you that pugs are my favorite breed.  I now have two 8 year old pug sisters, that are my pride and joy.  I encourage anyone who wants a bright, affectionate and loyal companion, to get a pug.  They will never disappoint you.  They however do have a habit of following you everywhere you go.  They are very inquisitive and like to be with their owners. So they tend to often be under your feet. Check your area for a Pug Rescue organization.  They often can offer you an orphaned or lost pug. It is a economical way to get an adult pug.

    To all you who have Fibromyalgia, take solace in the fact that the pharmaceutical companies are finally getting medications past FDA approval (Lyrica and Cymbalta) for treating  Fibromyalgia. Stay cool and stay hopeful. 

i feel the same way.i stay real hot on the inside like im burning up and can sometimes feel heat coming off of me.are you always real tired to and think that something is wrong.when i get tested they say im fine but i dont feel fine.i used to have alot of energy ,now i just sitr around.i dont know what fm is,but i take pain pills because im in pain always and they give me a little energy back.i live with a fan in every room and freeze my wife and kids to death.ha ha.

I know some of these posts are older about body temp, but I just stumbled across them while doing some research on Skelaxin (the newest thing added to my therapy). I find it fascinating that most of the folks here seem to be burning up, while I am freezing most of the time. Now wait, this was not always the case. Over 2 years ago, I swore I was going to spontaneously combust if I had to sit in a conference room, where a jacket - ever - (you might have seen me around, the crazy woman in a t-shirt in December). A full-body- meltdown-sweat could be easily produced by showering, getting dressed, laundry, doing the dishes, walking to a meeting, getting the kids to the car, or just wearing my hair down (I think I still have permanent ponytail marks). I couldn't dress the way I wanted or shop where I wanted or even attend the meetings I wanted. I was constantly checking my makeup to see if my 'waterproof' mascara was dripping off my chin.

Yep, I had the desk fan and sat under the open air duct and was the scurge of the office for having it open in the winter. I 'loved' sitting next to the other women who were wrapped in blankets, wearing turtlenecks under sweaters, under blazers....gross I am having trouble breathing just picturing it.

Get to the point? What changed? Sleep. WAIT...don't stop reading...hear me out. It's not as easy as it sounds. I went for a sleep study. While for me, I was diagnosed with sleep apnea, there are other sleep disorders and issues related to FMS that can be treated that can help regulate your body temp.

What my study found was that not only was I not breathing well at night, I was not entering the sleep phase when your body heals itself. I would 'wake' myself dozens of times a night to move, to breathe, to twitch etc. and never entered REM sleep or did not stay long enough for my body to produce enough natural healing to help. During this time my chronic fatigue was at it's worse (of course) where I would have to stand at my computer at work to stay awake. I could no longer drive, and I was in bed at 5 p.m. every night. So why would I think I had a sleep disorder?

I had night sweats so badly, however, that I would wake up and have to change to be comfortable again.

After 6 months on a CPAP (breathing machine) I no longer have night sweats. After 8 months on the CPAP I also managed to lose some weight (not all sleep disorders are weight related, so please don't think this cannot be you if you weigh 110). At 10 months so much had changed...I was no longer HOT...that sounds like a long time for relief I know, but it's worth it.

Let me tell you what has changed: I wore a winter coat last season for the first time in 3 years, I was able to wear a long sleeved blouse and jacket to work, I can use my heating pad for my back, I can wear jeans around the house instead of shorts, I can wear my hair down, I can get dressed up (makeup and all) and go out! I was outside this weekend and it was in the 80's and I was not even sweating!

Most days I am cold! I have turned the AC up to 72 and am still cold. I have had to put on a sweatshirt while my husband is complaining how warm it is in the house!

Just think about your sleep habits and if you are really getting sound restful sleep, it is at least worth discussing with a sleep specialist.  You may not need a CPAP machine, but there are other ways to help you fall asleep and stay asleep so that your body can help heal itself.

Hello,

    I have had RA and FMS as well as lupus erythematosis and necrobiosis lipoidica (no diabetes either!) for 13years now. I have had the unfortunate luck to develop a form of autonomic disreflexia as well. Therefore my body temp usually cannot regulate itself. We moved from Texas to the Pacific NW and that has helped some but.....if it gets above 70 degrees I'm usually in trouble! My husband teases me about thinking there must have been a sale or bargain buggy on autoimmune disorders! I tell everyone that I don't really have hair, it is my very own black cloud that follows me wherever I go!

Yes, ever since I have been told I have FM, my body temp is alway and I mean always on the warm side.  It drives my wife crazy and it is so bad that our next vehicle will have dual control temp controls.

I'm impressed that this topic  has received so many replies! It's nice to know that I'm not alone in all of this.

Just wanted to let you all know that I'm seeing my dr. on July 3rd and am going to ask her what she thinks about our heat problem.

Cheers!

Bekah

Well, I have issues both directions, which is really annoying. Right now I'm freezing, but sometimes I'll be hot to the point of nausea... and it's all with the thermostat set at the same point! I tend to get cold when I'm tired/at night, but otherwise it's pretty much minute to minute. I'm rarely at a comfortable temperature regardless. Meh. Oh, and my mouse hand always gets freezing even if the other hand is fine! Maybe because it's higher? Anyway. I didn't necessarily put my temperature issues as a fibro thing, but then, almost everything could be it seems like. In any case it's all annoying.

I was always the warm one in the group. Now I am the one who is freezing and just hopes for a hot flash.  I did not relate it to my fm until I found this site. Thanks for the info.

I know that for me, the last several years I always feel like I am in a sauna.  I thought it was part of life changes.  But I like the air on 70 degrees and wear shorts in the house.  I sleep with the ceiling fan and a stand up fan at night plus the air is on.  I can be sitting at work and feel the sweat rolling down my back.  So if anyone has any ideas, I would appreciate it and I know that my boyfriend would too.

I am from London Ontario and I have MS and fibro. I have severe chronic pain. I accidently came across your post and I read info. You were asking about body temperature. I have a serious problem with body temperature. If I get too hot I feel like I am going to pass out.

Have you ever considered that you have MS? I was diagnosed with MS 2 1/2 years ago. I had same issues. When I was diagnosed with MS I look back at all the health issues and complaints it was very clear that I had MS. Take a look at information on MS and then look at health problems you currently have. I was 35yrs old when I was diagnosed but looking back I could have been diagnosed with MS almost 8 yrs prior to final diagnose.

Good luck and keep cool!

Kim

bitz_1224@hotmail.com

Yes, I am almost always too warm, and have to be careful not to freeze my husband. He keeps a small quilt at his chair all the time. I am 64 however, and I thought maybe that menopause might have something to do with it. Now, I'm not so sure. Sweat literally drips from my hair at times.

I guess it's another symptom of Fibromyalgia.  I notice when I'm sick and feel feverish, my temperature drops to 97 or less instead of over 98.6, so that is again something weird to my notion. Thanks for sharing Tatoo Girl. I am new to this and my handle is tired08.

I've talked with quite a few people with FM that have lower body temperatures. Mine usually runs about 97.5º.  Just another SNAFU in the Fibro world.

I was DX with FM and since that DX I have noticed each year my tolerance to the heat gets worse and worse.  The heat makes me feel itchy and uncomfortable. I must have a fan on me at all times or I can't stand the feeling.

Prior to my FM DX I was always on the cool side.  Even my body temp was below normal. Now I run fevers very easly, and my body temp norm now is above the 98.6

I asked my doctor about it, and he told me, most his patients could not take the cold. Now to be completly honest I cannot take the very cold temps either, however it takes very little to warm me up when I am cold.

Yes, I absolutely have trouble regulating my body temperature.  I use to always be cold.  In the winter I would wear a large jacket in my office to keep warm.  I would die if I did that now.  In fact, heat makes me feel much worse.  I must keep my AC on in spring and summer much lower especially to sleep.  I don't what causes it but it is not fun is it?  Hope you're having a good day.  Debbie

Mine is just the opposite.  My legs gets so cold, I think they will snap like a twig.  That's where I get the coldest.  And when they are cold, I experience leg weakness and pain.  It takes me forever to warm up, most people are sweating to death waiting on me to warm up.

Another area the causes me a lot of trouble are my arms.  I don't know if it is Fibermyalgia or Tendenitis.  All I kow is that it hurts.  If you find a cure for the body temperature, let me know.

JCZgirl

Hi there,

  I have Fibromyalgia and yes I find My self hot and cold. So don't worry your not the other one out there with the same problem. I all ways find it easier knowing that I'm not the only one with the problem.

Hi, I also have a whacky thermostat! Mine causes me to be either cold or hot regardless of outside temp. I keep my electric blanket on the bed all year and frequently use it in the summer (Florida). There seems to be no reason for the ups and downs of body temps I experience. To date, I have not been able to find anyone with the answer to this.

Take care.

Becky

Have your Thyroid checked. 

Dear Tattoo girl,

I too have had problems with body temp (warm) .  I have lyme disease for 9 years

now.  I went four years without diagnosis.  This has manifested in the last 2-3 yrs.

It is real bad in summer.  I am lucky my lyme dr. in NY has tested me for thyroid,

and other things that could crop up along the way.  I am a registered nurse and

can work.  So you have joint pain, chronic fatigue as well?  I am 53 now so there

was also the hormone issue to assess but it did not seem to be the cause.  Have

you had tests for other underlying causes for your symptoms?  I find the overheating

to be dibilitating at times and cannot stay in sun of do outside activities past May in our area (Newport, Rhode Island).Would love to communicate and share.

Sincerely yours,  Patricia Zammer

I forgot to add...I also run my air for the same reasons and my husband will tell me he is freezing. There are times the air conditioner will cause me to ache all over. The fatique is relentless. I was an avid camper, gardener, hiker...I can steer you to the proper lab.  Do you experience muscle twitches? Memory loss?  Wierd symptoms???

Your body temperature is controlled by hormones. Read What Your Doctor May Not Tell You About Fibromyalgia by Paul St. Amand, M.D. and it will explain his theory on why that is happening to you.

It is the "bible" of FMS.

i hate being hot all the time! I hate the pain the docs are worried i will become a addict since i have been on everything and now they put me on tramadol! I have to take alot to dull the pain. How bout you?

Absolutely - it can be irritating for co-workers at the office, too. Wild temperature swings are a common daily occurance for me. 

My husband does the same thing now days, he's on me to turn the air up so it dont run so much .  Im setting there burnning up and sweat rolling off me and he's in a sweat shirt.  They haven't said I have FM yet.  They dont know whats wrong, been at it for a year.  Pain all the time, some days worse then others. 

Yes it's true! I have been the same way myself. I'm driving my family nuts with the cold room and sweaty body. I have the AC and THREE FANS going all night. 6yr son sleeps with me at times and wears sweats to sleep.                

Hi Tatoo girl~

Late to this months info and comments but want to share with you that I too have a major problem with regulating my body temp. I am always warm too, a fan even in the winter when it's 30 degrees and below.

I am a lot older than you (53) and am almost relieved to find that a younger woman with fibro also has this problem. I did have to have a complete hysterectomy in my mid 30's and have used estrogen replacement therapy on & off over the years.The only symptom they have not addressed have been the body temp issue. I have over the years a gamunt of tests ran, had my thyroid checked over & over. I too am convinced it has to do with fibro and reading your comment/question has validated that belief even more.

One thing I do a lot this time of year to cool myself down is wear a damp cold towell around the back of my neck. Sounds like the greatest news in fashion I know, but there are times when a gal needs a break. I lay down for about 30 minutes with the towell and find that my coping level increases which always helps my pain level. A friend from Georgia here in the states shared this ip with me when I lived in seattle Washington and the humidity was awful.

Good luck, be good & gentle to yourself

~ Tj ~

YES! I drive people crazy. I am usually hot; no matter what Al Roker says. I can't stand the heat blowing on me in the car or inside. It makes me sick. I can't sleep wearing much of anything. I'd sleep nude, but I'm afraid if there's a fire, I'd scare the neighbors. I dress in layers and always have a sweatshirt with me. I could be in a camisole one minute or wrapped n a blanket (shivering and complainng about achy joints) the next. I'm a joy to live with.

I have the same problem, however I have terrible sweats since fibromyalgia, only in the face and back of my head no where else. It drives me crazy and it is very embarrassing.

I am 50 years old, just diagnosed with fibro this year and have also tried a variety of meds recently.  So I cannot tell which of these contributes to my hot flashes, but I hate them.  I can suddenly get the sweats especially on my scalp and face.  It can hit anytime, but I really love it (not!) when I am trying to apply make-up in the morning!

So lately I am going around at work in sleeveless blouses while others are bringing their sweaters to combat the a/c.  At home, I range from hot to cold to hot.  So I am really never happy with the thermostat!  I think this has to be the fibro because I can be very sensitive to cold also, which never happened before and doesn't seem likely from menopause or the meds.  It can be frustrating, but I just swing with it and have a variety of clothes on hand for how I'm feeling at the time.

So I don't have the answers, but I hope this helps.

At one time long ago, I was told that I had fibromyalgia but was never confirmed.  I constantly am in pain (for years) and found that a few years ago, I started feeling very hot and sweaty.  I am constantly dripping from sweat and the doctors do not know what is causing this.  They say that I am going through menopause and I am 72 years old.  I had hysterectomy when I was in my early thirties and never had any problems with menopause.  I am hoping (not that I'm looking for any kind of illness) that this might have something to do with my constant sweating and something can be done to help me.  If any of you out there have any ideas and willing to share with me, please do.  I am at my wits end.  Thank you. Rose

At one time long ago, I was told that I had fibromyalgia but was never confirmed.  I constantly am in pain (for years) and found that a few years ago, I started feeling very hot and sweaty.  I am constantly dripping from sweat and the doctors do not know what is causing this.  They say that I am going through menopause and I am 72 years old.  I had hysterectomy when I was in my early thirties and never had any problems with menopause.  I am hoping (not that I'm looking for any kind of illness) that this might have something to do with my constant sweating and something can be done to help me.  If any of you out there have any ideas and willing to share with me, please do.  I am at my wits end.  Thank you. Rose

My body temperature wakes me up which is annoying, I usually take a blanket off or PJ's.

My life has changed so much since developing fibro, the sun was something I always enjoyed. Winters I loved being out in the snow, how I've changed just to accomodate this syndrome. If I overdo gardening, walking, swimming or any repetative motion, I have a big pay back time that goes on for weeks. I have been to Fibro meetings but these meetings don't address pain per sae, and that is frustrating. I could see others suffering just listening and sitting in one position, how polite we are.

A from Canada 

Wow I thought it was me alone or the menopause but i to have FM and am always HOT, i just can't do anything to help it and i actually perfer cool showers because of it.

I have had FM for nearly 20 years now, and I can not remember what it feels like to be cold. I am always hot and turning my A/C to the coldest setting possible. It's like living in a "deep freeze" my family tells me. I contribute my warm body temp. to my FM and I wish I had an answer about how to control it! I love sweaters and wish I could wear them!!!! Sandy

At first I thought I was over hot compared to my family.  In the summer, I couldn't sleep because I was so hot.  Now I realize it is areas of fever.  You can feel cool areas and hot and burning areas where the flare up is coming or  where I worked the muscles to much.  But it always ends with fevers now.  I can melt two ice packs trying to get the fevers down.  Some times I can't sleep with hardly any clothes on because it just holds in the heat more.  At night, it can be on the side against the bed and I have to keep turning over to cool down the skin.  In winter, if I'm in sweats, I will fall asleep only to awake in a few hours with a raging fever and then the skin starts to feel like it is icy hot.  I have to peel off the warm clothes and let my boby cool down before I can go back to sleep.    These last two years, its been the worst.  I have tried to exercise and biuld up my weak muscles which seems to cause more fevers.  It just  repeats every night.  I have lost so much sleep just on the fevers alone.  But yet I have to be very careful about fans and air conditioners.  They can tigger the flu like flare up which makes my muscles weak and in pain from the cold.  And thats an entirely different pain.  I ususally have to go to bed with heavy meds when I have these flares.  But they too, can end with fevers and my skin feeling like it is burining.    I can't win for losing.

At first I thought I was over hot compared to my family.  In the summer, I couldn't sleep because I was so hot.  Now I realize it is areas of fever.  You can feel cool areas and hot and burning areas where the flare up is coming or  where I worked the muscles to much.  But it always ends with fevers now.  I can melt two ice packs trying to get the fevers down.  Some times I can't sleep with hardly any clothes on because it just holds in the heat more.  At night, it can be on the side against the bed and I have to keep turning over to cool down the skin.  In winter, if I'm in sweats, I will fall asleep only to awake in a few hours with a raging fever and then the skin starts to feel like it is icy hot.  I have to peel off the warm clothes and let my boby cool down before I can go back to sleep.    These last two years, its been the worst.  I have tried to exercise and biuld up my weak muscles which seems to cause more fevers.  It just  repeats every night.  I have lost so much sleep just on the fevers alone.  But yet I have to be very careful about fans and air conditioners.  They can tigger the flu like flare up which makes my muscles weak and in pain from the cold.  And thats an entirely different pain.  I ususally have to go to bed with heavy meds when I have these flares.  But they too, can end with fevers and my skin feeling like it is burining.    I can't win for losing.

All my life I've been very cold-natured. I was diagnosed with Fibro in 2000 and just recently I have noticed that I'm quite hot quite often. I had initially chalked it up to the fact that I just turned 38 and am possibly entering pre-menopause.  Although I've been dealing with fibro for 8 years, I still have to remind myself to consider fibro as the culprit when things that are going on in my body. It really takes some getting used to.

Would love to get a professional's opinion on this temp regulation.

Queenie Brown

http://www.TheSelfLoveMovement.com

I used to break out in sweats (horrible plus embarrasing). Can't explain it but the answer was 5Htp. I run a low body temp too. I go back and forth between hot and cold but I can deal with that.

i do understand what your talking about, i just went to the doc today and asked him why i have certain symtoms and its always followed by getting hot and sweating. he then touched different spots and told me its fm. so here i am tonight on this. when it starts my skin feels like its on fire, tingling in hands legs feet with pain in different degrees and then the sweating. it gets bad sometimes with sex, but just sitting around it can hit, i get all sweatty and everyone else is ok, sucks but i have to live with it.  

I never associated my heat to the FM, I just thought it was either pre menopause or menopause itself but I am constantly cooking with the fan going all night and the windows open with my husband freezing under quilts.  I take thyroid medication as well as a study medication for the FM and I have also been diagnosed with connective tissue disorder but after freezing for years with the thyroid inbalance the heat in a nice cost saver especially with the rising price of gas we use a lot less heat in the winter.

OMGoodness!  I can SOOO relate!  I was diagnosed w/FM back in the '80's, and have been struggling with the many symptoms ever since.  Trouble regulating body temperature has been a MAJOR problem for me all these years!  I HATE feeling like I'm on FIRE the majority of the time!  You can only take off so much clothing before being arrested!  I keep a hand-held fan (like the Spanish women use) in my purse, and am always reaching for it, to fan my dripping face!  I get a lot of looks, but when you're desperate for any amount of relief, you don't care what other people think!

I am just the opposite.  Air conditioning hurts my body.  I can't stand for it to be cold or to have cold air blowing on me.  I need it warmer

Preacher Man

i've had breast cancer twice, and have had major thyroid issues since radiation 'fried' my thyroid.  i have been attempting to regulate it for 10 years now.  never happens.  i also suffer from severe, chronic pain similar to fibromyalgia.  i have, however, been diagnosed with ankylosing spondylitis (a form of arthritis), and have had cortisone shots in my hands (they fall asleep at night), knees (including the rooster comb, synvisc), etc.  i live in houston, and have found it impossible to even walk outside.  i used to love the beach, now i can hardly walk to my car and am sopping wet by the time i get it cooled off.  i run the a/c constantly (our bill was $1,300 last month) -- and this has my husband moaning.  of course, in the winter, i absolutely refuse to turn the heat on, and have told him i want my heat savings applied to the a/c bill, but of course it doesn't work that way.  when visiting his sister (wisconsin), it went into the 40's and she blasted the heat.  when i opened a door to get some oxygen and told her it was 'boiling' in here, she said, 'no . . . it's not and slammed the door.'  bottom line?  i want to move to canada.  health care and cold air -- that's my motto.  does anyone else have chronic foot pain?  i feel like i have places in my foot that are just broken.  plus, i cannot stand to be touched on the sides of my thighs, or back side and front side of my  hips.  it's excruciating -- like a 'bruised' feeling.  i've tried lyrica, but i don't see it makinga difference.  i have meds for the pain -- but it's a constant battle, mostly keeping them 'hidden' so as not to be called a drug addict.  i'm furious that they are making people on t.v. (that have supposedly been in accidents, shot in iraq (see lifetime's army wives' husband 'trevor,' the 'cleaner' (where did they come up with that name??), etc.) look like junkies for being in pain and needing to take their meds.  when is 'addiction' going to be just that and 'dependence' on a drug that you NEED be understood?  never as long as it gets this bad rap.  people watch this junk and then apply it to their loved ones (been down that road as well -- while going through 5 surgeries).  again, i'm for moving to canada . . .

i found a battery operated fan at walmart -- in the camping department.  they have a larger one that holds eight D batteries, it's pretty heavy.  but there is a smaller one that holds only 4.  i take it EVERYWHERE.  in stores (especially dressing rooms!!), in my car, EVERYWHERE!  i also found (at walmart) a little fan that looks like an big ipod.  it sucks air in the front and shoots it out the top -- you are supposed to wear it around your neck.  it's great except that the cord sweats my neck.  it also has a little stand so you can put it on a table or something to blow on you.  it's small enough to put in your purse and i never leave without it.    i keep one of the bigger fans in the car for whenever i need it.  i ALWAYS have women running up to ask me where i got these things.  good luck.  oh -- and even with being hot, my body temp runs low.  i have thyroid disease and if more people would get to a doctor that deals with bioidentical hormones and not these endos that send you on your way . . . "you're normal -- just go home and suffer! ;) right??"    ARGH!!!

i have had fm for a number of years and i wonder if you have had your blood pressure monitored? i find that with the warm feeling is \due to the blood pressure rising. i also wonder if you are of menopausal age?  also i find the barometric pressure can cause irregular temperature regulation. hope this helps.

Yes I have problems with my body temperature to i've found out now that my temp goes way over 100 and my legs from the knees down sometimes feel like they are on fire and hurt real bad.

Yup yup yup!  I am always burning up.  Hubby is freezing.  I often feel feverish - but never run a temp.  Its odd!

Cuz

www.reaching-out.info

I find that I am always cold... Summer I seem to be wearing sweats and sweaters.. but there are the off days where I dont mind wearing shorts and a tank, but I think I am the opposite with you..

hi

im jenny jenny5019@hotmail.com  my doc has not said i have fm but i know i have as i am in so much pain 1st thing in the morning make me cry some times . and yes i never have the heating on never cold and my grand daugther lives with me and she goes mad as she is cold and im not . i can not work with fm can you as if i sit for to long im in bad apin ihad to give my job up though it . i dont slep well from about 2am to 6am is about the longist time . iv had this for 4 months no pain killers help im 58 but im young at heart and its hard for me as im 35 in the head if you know what i mean i thought i was going mad thinking i was the only one with this pain .

jenny

Yes, I have the same problem.  It started when I was diagnosed with FM 5 years ago.  I can't take the heat.  We used to go camping in a tent, but now, when I am in heated temps, it causes severe flair ups of my FM.  I keep the AC on all winter long in my home as well as my car.  My husband has the same problem as yours.  I found a book on FM that listed sensitivity to heat as one of the symptoms of FM.  I showed it to my husband and he has been a lot more tolerant. Take care.  Cindy

   I was just diagnosed with FM & CFS. I too have noticed that my body temp changes constantly. At night I just can't get warm and during the day I get so hot that I don't think that I can stand it. Any suggestions?

                                                 Wishes of good health . . .

                                                     Morgan

My thermostat is always at 60, so is my office, has always been that way, anything higher than that and I am burning.

Phoebe

I too have my temperture to regulate, I wear long sleeve shirts in the summer time, rarely wear short sleeves due to my veins so pronnounced since childbirth, at first I thought this is normal. But as years traveled on in my life I began to feel different. When Diagnosed with FM, PVD, and abnormalities, my body doesn't know the difference , most of the time I'm cold, at night I'm so warm I can't sleep, at thats not having any sheets around me, so I was told its hormonal.

I have had severe sweating episodes. In the beginning I thought it was my meds. My hair has not been dry since about April. The sweating is embarrassing at times, people ask me if I am having hot flashes from menopause.( I am not according to my gyn) I always carry a washcloth or hand towel to wipe the sweat away. It is difficult to prepare a meal without dripping all over it. I had an ice cold cloth for around my neck which only works while it is still cold.

This comment is not related to body temp but I thought it would be good info,  6 weeks ago I had blood work done and my Dr. had my vitamin D checked(vitamin D is not normally a part of routine blood work).  It was very low - 56 points and the low normal is 95.  Since then I have been taking 1400 I.U. a day and calcium and my level of pain has drastically improved .  Anyone interested may want to ask their Dr. specifically about having their vitamin D levels checked as this is the vitamin you must have for your body to properly absorb calcium.  I have been diagnosed with FMS for 10 years and I have found that little things add up for my day-to-day control.  For the really bad days that are triggered by my nemesis I use good pain killers but it really comes down to those good days in between when life feels normal - that's what really counts. 

I have had this horrid problem for years and was beginning to think I was crazy. I hate going out shopping or anywhere in public because I start sweating and my hair becomes soaking wet and my face becomes bright red. I look like a freak! I have been having more issues in last year with horrid cronic pain in the right arm, wrist and hand with my fingers swelling like hotdogs then peeling. The pain is unbearable. I don't know how much longer I can continue to work because I feel so bad, but I really need the income. It is a horrible disease. The Dr's and let me assure you I have seen numerous ones have no clue why I have started to have all these other issues and are not sure what diagnosis to give me. They all agree it is an "Autoimmune disease of unknown origin" and they refer me to yet another Dr. I have developed fatty lipoma's on my back that grew huge and needed surgically removed...horribly painful, I developed kidney issues, gained weight and now the swelling of hands and now my feet. I constantly run a low grade fever and never feel rested. I am so depressed over not feeling good and hate it when the Dr. says "your depressed." Of course I am you nut, you be depressed too if you felt like crap everyday and did not have energy and constant severe pain...DUH  I refuse to let this disease run my life until I have no strength left, but it really helped to read all your posts as I was beginning to doubt my own sanity here. Good luck to all of you with this disease and I pray they find some relief for us SOON!

I have had FM for 15 years and am on oxycontin 20 mg 4 times a day. That helps with my daily pain but doesn't help with the stiffness and swelling I get. I, too, have my air-conditioning on 68 at all times-it seems at times I still feel real hot, but the coldness does help. Its so hard to have FM-at first I thought I had MS,which is so similar.Good luck with the FM, I can relate how you feel,some days are worse than others, but trust me-there is no 1 way to do things right.

With Fibromyalgia you run a slight temperature most of the time which can cause you to be thirsty alot because of dehydration.  My eye doctor told me also your eyes get very dry and it causes headaches.  So its a good thing to moisten your eyes a few times a day also.  So it's not just you who is hot its probibly everyone who has Fibromyalgia.

Sabine.

I am always to hot, but I am also going through the change of life and have been for over 10 years.  Soon after I was diagnosed with FMS I was put into early meopause because I had endometrous (I can't spell) I am still going through menopause today.  I found that Vitamin E and soy milk help keep my hot flashes away.  When my hot flashes are at bay then I freeze because of the FMS.  It's a loose loose situation.  I pretty much stay in the air conditioning in the summer and infront of the fireplace in the winter.  You might want to have your doctor check and see if you are going into menopause or if you have a hormone imbalance.  You never know he may actually have something that can help or at least give you some information on how to cope with them.

My poor partner feels the same way as your husband.  Some told me it was hot flashes--I said 9 years is a really long FLASH!  When we go skiing, I wear spring ski clothing and tank tops going out for dinner...I was diagnosed 11 years ago with FM, and have suffered with being too hot ALL the time.  So, you are not alone!  I am also extremely sensitive to small noises, any little flashing lights, repetitive rattles.  It's like our bodies are in overdrive.  Carry little fans with you wherever you go-sometimes it helps you make it through the airplane ride or wait at the post office.  Good luck!!

Before my wife developed Fibromyalgia, she was always colder than me.  She needed sweaters when I was hot.  She slept under more blanket than I did.  Now, she constantly complains about being too hot.  She wears very light weight clothing, seldom puts covers over herself in bed.  When I'm cold, she's hot.  I think it's related to her thyroid, but can't prove it.

Yes I seem to have the same problem. I have had my thyroid checked because sometimes that has something to do with body temperature. Have you?

To answer your question about regulating body temperture....yes, yes, yes! I totally agree with you. I have my A/C on 65 all year around. I can't even get my friends to visit because they state that it is too cold. I stay so very hot all year round. Once I get over heated it takes me a while to cool off and while I'm overheated I become very ill feeling. It's terrible. It all started two years ago right after I was diginosed with Fibro. I'm in a support group with about 15 members. Not all of them have this problem but when I asked about half of them responded that they too have the same temp problems. I'm worried about how I'm going to continue paying my electric bill. It was over four hundred dollars last month (August) and I'm afraid to see what it will be this month (Sept). What are we to do? Is there anything that could help us? I also walk around  with ice packs inside my bra while I'm at home to help keep me cool. Let me know if anyone has any suggestions. I would love to hear them. Thanks for posting your comment about body temp. Now I know I'm not crazy or alone.

Dana Timmons 39 years old mother of two

Fibromyalgia, CFS, and possibly other medical problems

Charlotte North Carolina

Hi there!!

I must tell you that I was surprised to see this.. I thought it was just me.. but now that I have read your question, you're right...

I was always cold, from the time I was a teenager up until I started having symptoms of FM... Since it took 10 years for my FM to diagnosed properly, I never thought about the weird change in body temperature that I had... So, I thought back and realized that once my symptoms started for FM, my body temperature changed also...

Now I'm always having a  problem with being "overheated"... The doctors kept trying to tell me that it was early menopause.... But that didn't fit, since I didn't have one other symptom of menopause, including the obvious symptoms associated with menopause...

So now that I know I have FM, and have a great doctor (who unfortunately doesn't have one other patient with FM), I realize that the body temperature thing has always been connected to my FM...

Since I did really go into early menopause (they are now saying that it was brought on by my FM!! LOL) I can definately tell the difference between the "hot flashes" from menopause and the constant back and forth of overheating from my FM..

I have however found that a reccommendation I got from another patient regarding the hot flash problem, has been really helpful... Not a cure by a long shot, but it has helped tremendously... She suggested I try taking Black Cohosh and Soy Isoflavins... And it has really, really helped.. Hasn't gotten rid of the sweats completely, but for the first time in probably 6 years I can finally wear makeup again!! Had to stop wearing it when the menopause hit, since between my FM and menopause, I was literally walking around with a towel to wipe off the sweat constantly..

So, you are not alone!!! Since I am not a medical professional, please don't take my advice as "the word" LOL.. But I would try it for a good 2 or 3 months and see if it makes any difference for you.. And both Black Cohosh and Soy Isoflavins are easily found in any "natural" vitamin type section of your phamacy or store...

I wish you good luck with finding some kind of relief of this symptom... I know what a pain in the butt it can be...

Kataclysmic

 I am so happy to had from this. I too suffer with RA, EBS, FM, etc.....

I use to be the cold one in the family. In fact my husband use to make our room so sooooo cold. But now I am hot all the time, I have the AC on in my room, plus a circular fan, now a small fan for my head and face. My husband now compliant is , he is cold. I have night and day sweats, never get cool. The small rotating fan I use for my face and head does help some, Help this hot and damp from head to toe.

I am new as of today, so not sure what I am doing, hope this helps, thanks for your article, friend in need Dee.

I have been Dx with fybro as well as RSD/CRPS  which is a debilitatin chronic pain condition also involving the sympathetic nervouse system. The two are very close in symptoms and even some Dr's I have seen consider the thoughts they may be related or the same thing over all. However RSD it is very common to have issues in regulating the bodies temperatures due to the interuption of the vasuclar system being able to dialate and constrict when needed as this is the #1 way the body regulates it temp. I do have huge issues with this and heat is the worst for me though extreme cold also effects me as well. Heat is however the killer as if I get to hot and temps go even over the mid 70's I will get dizzy and go into what feels like the start of heat stroke honestly. I was wondering if it is possible that you may have RSD rather than Fybro due to your issues with body temp regulations. Also generally with RSD the heat and or cold will increase pain as well. I hope this may help some as it is from and based on my experiences with this disease over the last nine years.

God Bless, Jeff

My body temerature also changes like crazy. I will just be sitting and I will just start sweating up a storm for no reason. I never even considered that it could be the Fibro. I thought it was maybe some of the millions of medications that I am on. So you are not the only one that is like this.

Hello.   I have the same problem you  do.  I don't know if the cause of warmer

body temperature is fibromyalgia itself, or a side effect of one of the medications.

I sweat a lot and am   almost always very hot.

Pink Flower 

And here I was thinking it was just my meds or premature menopause. I had my son 4+ yrs ago and since then I've been suffering from FM.  I have the air on in the winter, fans constantly blowing. I was living in WI for awhile and taking my dogs out for walks in a zip up sweatshirt. Now I'm back down in TN and absolutely miserable. I never go outside. Unless it's 70 degrees or under I can't handle it. I had my thyroid checked but it was OK barely (just above underactive which makes absolutely no sense) Due to have it checked again soon. I have done so much research on autoimmune disorders and FM every doc I see hates me. I also have a HUGE problem with swelling when it's hot. Does anyone else have that problem also? I'm so fed up with docs and their blanket FM diagnosis I'm disgusted. Ever test I've had comes back OK but I still swear the FM is a symptom of something else, but the docs just haven't figured out where to look. Sorry, just venting.

Wow . . I thought it was just me and my going through menopause.  I have to take hormone replacement or I am miserable, soaked and very cranky.  I thought my temperature rising moments were controlled, but then I noticed that I was sweating for no particular reason.  I, too, have always been on the warm side.  Normal temperature by a thermometer, but my body always felt hot to the touch.  I am constantly finding other 'symptoms' that are attribtued to the Fibromyaliga that I have had for years, but never knew the connection: IBS, tinnitus, thyroid problems, the bouts of overwhelming fatigue and weakness . . . and far too many doctors do not even believe it is a serious condition and some do not believe it is a legitimate condition.  Has anyone out there had a neurological work up in regards to their Fibro?  The AMA validated Fibro as legitimate, chronic pain condition, bit also a neuroloigcal one . . something to do with the pain receptors in the brain. Has anyone found a neurologist who has helped them in any way?

I used to be hot all the time like you.  Since fibro, my temperature swings all over the place!  One minute I'm freezing, the next I'm dying of heat.  Check out this poll about fibromyalgia & temperature sensitivity:

Do You Run Hot, Cold, or Both?

Adrienne

I can share that one with you.I have FM,and yes most of the time i am very hot,and then out of no where i get real cold.I do not know if it is from the FM.  Laurie.

I have tried for about 3.5 years to find people that have symptoms even close to mine through many various searches using all sorts of key words to get there. I have been diagnosed with some many, many, many illnesses and have come to the conclusion: 1/3 of the medical community does not believe FM and CFS even exists; another 1/3 thinks that "something" exists but are waiting for some research or magical insight to fall into the research; and finally, another 1/3 KNOWS that there are a number of D/Os that seem to exist on this spectrum that encompasses all these complaints and more. How one describes the pain can determine whether you get appropriate medicine and care or if you are given anti-psychotics, mood stabilizers, or even a referral to find a new Doctor! We all KNOW that something is there and the symptoms are REAL! We feel and think we MUST be crazy for the medical community to just allow us to go on and suffer, in many cases and somehow exist and expected to just live our lives. Are they insane, mean, ignorant- what in the hell is the deal??

In psychology there is a term called "secondary gain" which basically means (in this discussion) that if someone makes all the complaints and reports all the horrific symptoms that there MUST be something that the individual is getting or gaining from making these "claims." For instance, someone that merely wants to get a disability check or merely wants attention. Anyone reading this feel that they like the attention and $$$ enough to allow your pain and discomfort to continue? Would anyone here trade their very soul to just feel "bad" instead of desperately insane, alone, suffering pain and agony to go about life in some staggering fashion? I bet that even some of you that are not experiencing the level of pain and discomfort as others still would gladly give anything for some kind of homeostasis, right??

Please do a search on the following topics/diagnoses and see what you think so that in case you happen to have the misfortune of finding yourself in the care of that 1/3 of disbelievers, or even the 1/3 of speculative folks and have not gotten someone to take you seriously. The very term FM or CFS can make some medical folks that have not been properly informed and/or trained in the research and facts give the patient the brush off without a thought! Some of you know this to be the case! Try looking and comparing these:

Pan Dysautonomia

Reflex Dystrophy or Complex Regional Pain Syndrome

Small fiber neuropathy

Poly neuropathy

Wegener's Granulomatosis (God forbid, since it is awful!)

I cannot say that any of these will help and a label is only a small part of the peace of mind that we seek. But, sometimes it helps just knowing that we have a name for whatever this horrible "thing" is that makes us all contemplate how life would come to this state.

Call it what you will, but make sure that you are walking into the offices of the medical world with notes to make certain that you have your thoughts, symptoms, and such in order. I have in all the rounds I have made with a couple of dozen or more Doctors found that bringing documentation from the internet only helps these folks to disregard you as a bonafide chronically ill patient. Somehow, I think that it makes them unsettled and insecure about their judgment. One must possess a bunch of Ego to become a Doctor and the training only serves to put the exclamation point at the end of the sentence. I cannot figure out why this is the case, but it is. I say now at the end of this that I and my spouse are trained Psychologists and have some experience in all this. Even though you are a supposed colleague and have many years and experience of training in the human mind and physiology, it does not guarantee that you are taken seriously, What I have been told would shock many people but doubtfully anyone here.

I wake many mornings feeling like I have been in the blistering cold with pain, weakness, low body temperatures, sometimes sweating to the point that I am soaked other times having a cold pallor without a bit of dampness. Putting on gloves, and 4-6 socks does nothing. I have BP that averages 275/110 and drops to 80/38 other times. Body temperature is often slightly high at 99-101 or it has been as low as 95.6 which I was told is impossible, even though my spouse and I each checked it repeatedly with two different thermometers. As others, I have digestion that shuts down and can go as long as 11 days without a BM. And the complete reverse. I have nausea to the point that I cannot even speak without gagging. I have memory impairments, cognition issues such as not finding words, mixing up words, and concentration and tangential thinking. I get a rash of bright red skin and makes people actually stop me in the grocery store to ask if I am okay? I have severe vertigo and dissiness and have fallen so many times that I am mistaken for Chevy Chase! :-0)

Small fiber nerves and the autonomic nervous system have a large role in ALL of this. If you remember your Anatomy 101, the body has the Central Nervous System and the Autonomic Nervous System. Take a gander online to remind yourself of all the aspects of the Autonomic Nervous system- I think that you many of you will be amazed at the list and how it parallels our symptoms! One can have Autonomic nervous System dysfunction and/or failure.

I am long winded and likely many of you skipped down and I would not blame you but I read all these entries and find some comfort in the fact that I am not alone. I would NEVER want to know that someone has any of this symptoms, but I imagine that we are all here to feel less alone in these waters adrift without destination or rutter. Godspeed to us all and hope that someone that needs it finds some element in here that will aid in there search for help! Best wishes, humpty dumpty

For years, its been on the warmer side.  A day or so before a major flare up though I am cold but sweating and clamy.  At least most of the time I know ahead of time that a flare is coming and try to do whatever work I have to so I can be a couch potato during major flares.  Hubby thinks I am insane too, but just grabs a jacket!  lol

I have RSD (somewhat related to FM) and a lot of us suffer from what is called; Hyperhydrosis. A condition that causes you to feel like you are sweating and hot all the time. Please look this up on any medical site you want. I think it can give you some clear answers on what this is.

I had it for many years after getting RSD back in 1999. I don't recommend this but taking Xanax for anxiety and panic attacks have actually made it stop. I didn't know this would help or work but have discussed this with several people that have the same condition. The ones who were put on Xanax for other reasons said the Hyperhydrosis stopped or wasn't as bad. I am NOT a doctor or a nurse; just another person suffering in chronic pain.

Now I am cold all the time. I have lost weight and I know that is part of it but also I have noticed with many RSD sufferers that are actual body temp is lower than 98.6. My temp usually runs about 94.7 to 95.9. If my temp gets to 98.9, I feel like I have a low grade fever. I do if you can understand that for many years now that my body temp is so much lower than normal.

It is horrible to suffer from feeling like you are having hot flashes all the time. I know...

If you are not a candidate or someone that takes Xanax for prescribed reasons, I don't recommend "trying it" as it takes a long time to actually change or stop the heat.

Please look it up and see if that is more of what you are actually feeling and talk to your doctor about this the next time you see him/her.

They may want to check your thyroid as they did mine but it was okay and then it was diagnosed Hyperhydrosis OR Hypohydrosis; Can't remember because of pain. LOL

I hope this helps you and many others out there.

Sincerely,

Rhonda

YES!!!! Finaly someone else has problems with body temperature.  I've have repeadetly asked my Dr about this and his response is "your medications".  He has always blamed the medications that I'm on.  In the warmer months my head is always drenched.  Even is the winter, I live in VA, if I start moving around I will look as if I've been in a Sauna.  I'm always warm and sweating.  I've looked up the meds and of course the pain meds mention one of the side affects as "persperation"... So I guess it's all in how the body responds to the meds...If you look up the meds I'm sure you'll see some of the side affects is "bady warmth"...It's like a perpetual "Hot Flash".  Good luck...I tend to dress in layers that way I can take off a layer or two as I "warm up"....

Cathy

Aka Irishiisrsmilin

YES!!!! Finaly someone else has problems with body temperature.  I've have repeadetly asked my Dr about this and his response is "your medications".  He has always blamed the medications that I'm on.  In the warmer months my head is always drenched.  Even is the winter, I live in VA, if I start moving around I will look as if I've been in a Sauna.  I'm always warm and sweating.  I've looked up the meds and of course the pain meds mention one of the side affects as "persperation"... So I guess it's all in how the body responds to the meds...If you look up the meds I'm sure you'll see some of the side affects is "bady warmth"...It's like a perpetual "Hot Flash".  Good luck...I tend to dress in layers that way I can take off a layer or two as I "warm up"....

Cathy

Aka Irishiisrsmilin

YES!!!! Finaly someone else has problems with body temperature.  I've have repeadetly asked my Dr about this and his response is "your medications".  He has always blamed the medications that I'm on.  In the warmer months my head is always drenched.  Even is the winter, I live in VA, if I start moving around I will look as if I've been in a Sauna.  I'm always warm and sweating.  I've looked up the meds and of course the pain meds mention one of the side affects as "persperation"... So I guess it's all in how the body responds to the meds...If you look up the meds I'm sure you'll see some of the side affects is "bady warmth"...It's like a perpetual "Hot Flash".  Good luck...I tend to dress in layers that way I can take off a layer or two as I "warm up"....

Cathy

Aka Irishiisrsmilin

YES!!!! Finaly someone else has problems with body temperature.  I've have repeadetly asked my Dr about this and his response is "your medications".  He has always blamed the medications that I'm on.  In the warmer months my head is always drenched.  Even is the winter, I live in VA, if I start moving around I will look as if I've been in a Sauna.  I'm always warm and sweating.  I've looked up the meds and of course the pain meds mention one of the side affects as "persperation"... So I guess it's all in how the body responds to the meds...If you look up the meds I'm sure you'll see some of the side affects is "bady warmth"...It's like a perpetual "Hot Flash".  Good luck...I tend to dress in layers that way I can take off a layer or two as I "warm up"....

Cathy

Aka Irishiisrsmilin

YES!!!! Finaly someone else has problems with body temperature.  I've have repeadetly asked my Dr about this and his response is "your medications".  He has always blamed the medications that I'm on.  In the warmer months my head is always drenched.  Even is the winter, I live in VA, if I start moving around I will look as if I've been in a Sauna.  I'm always warm and sweating.  I've looked up the meds and of course the pain meds mention one of the side affects as "persperation"... So I guess it's all in how the body responds to the meds...If you look up the meds I'm sure you'll see some of the side affects is "bady warmth"...It's like a perpetual "Hot Flash".  Good luck...I tend to dress in layers that way I can take off a layer or two as I "warm up"....

Cathy

Aka Irishiisrsmilin

That is me, all the time. I thought I was going through menopause in my 40"s. I had a hysterectomy at 34 so I wasn't sure about my monthly schedule. My doctor checked my hormone levels ma;ny times, but no it was fine. Now that I am experiencing real menopause, it isn't much different than before. Now I just open up the doors and windows and bear with it.

I am either really really cold or really really hot -- do have FM -- but shook it off as being something related to Menopause.  I am now rethinking that crazy up and down temps I experience are from FM.

Good luck with the temp thing - I have a fan in the bedroom pointed at me - makes my husband crazy - but he know I need it while I sleep.

Hello,   I  have  had Fbro since 1986 along with CFS and other  lower  back problems.  I am  always  cold.  It has to be  really hot outside for me to be comfortable and  I live down in the south. A  light breeze at night and I'll wear long sleeves or have a jacket.

When the winter  months come around, I dress well for outside and try to keep warm  in my home without turning the heat ( electricity ) up. My hands are always  cold, too. My body temperature runs between 96.8 and 97.8 as  normal and 98.6 and higher when I am sick.    

Is there anyone else  with Fibromyalgia that is cold like this and not  hot, as so many others?     Please reply.                                 

Oh yesssss.  I am almost ALWAYS warm.  At night I perspire like crazy and my pillow and upper part of my body is literally wet when I wake up.  I get cold of course what with our weather changing however, being warm/hot is a way of life with me.  Not in a perspiring way i.e. underarms etc., but....always warm.  Hate it.  When I'm applying makeup, I frequently have the fan on cause my face perspires and makeup gets messed up.

gravity is a pull to the center of the earth.. force is a push or pull against a object.. hypothosis is a good guess.. and i for one am made up of 65% water.. and it is healthy for you to cry.

I never knew that FM gave me the trouble of regulating my body temperature. I applied for a MS concession- not what i wanted AND WAS ACCEPTED! it was not until then i realised i couldn't control my own temprature. I thought i had a bad case of menapause. The heat... my house is a fridge 365 days a year to cope. neighbours complain - i tell them to wear a jumper. I am just learning a lot of my illness "cross over".I have obstructive sleep apnea, osterarthritis, osteporosis, IBM/PM, epilepsy, and 3 blood diseases that taking drugs makes worse. still i am soooo happy to find out it is my illness, and i don't have to worry why? any more. I will try that chillow pillow and see if i can get a bandana. thanks.

I am a 35 yr old female who has been diagnosed with FM in Sept 08. I seriously injured myself trying to do pull ups and have had nerve pain and muscle spasms and specificially my upper back and neck. since then it has debilitated me. for the past few months now, on top of my nerve pain, arthritis and muscle spasms, I have had started getting these unbearable burning heat like fire inside of my body that starts in my neck i feel and then affects the rest of my body. I have a history of epilepsy and live alone and can barely take care of myself to get food. I do not know if this is a progressive of FM or what for i am so sick and get stomach pains every morning. Can someone tell me if this is normal or what to do. I use a cold cloth around my neck but looking for why this is happening and what to do about it and if this is part of Fibro. Please help!!