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.