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.

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.

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

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

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.

 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

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!!

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.

Cats5

6/17/08 1:35pm

I have had problems  with heat since I was in my 20's but wasn't diagnosed with fibromyalgia until in my 40's. It's gotten worse in my 50's. If I'm hot at night I too wake up exhausted. I live in TExas- it's in the 100's now and I am suffering. I used to be able to tolerate going to the store in the day, but I can't stand being in teh sun anymore. I get sick to my stomach- throw up and have diarrhea!! Weird symptoms from heaat??? But it happens every time. I think I'm going to get the cool neck scarf and the chillow pillow- when I HAVE to be outside- I just dump water on my head and try to stay in the shade- I even carry an umbrella when walking from my car to work.

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,

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 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. 

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 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.

croppled1

8/16/08 5:36pm

I know sleep makes a big difference . For me what helped was a gift of a 12 inch memory foam mattress . It came in three peices with a cover . It was supposed to be for trucks or boats they sell them on Ebay I would mention the vendor but people would think I am a plant . Anyways I was sleeping in a chair I woke up in so much pain in a bed . My insurance bought a super cheap hospital bed with a 312 coil mattress and wires for a frame support like a cot . They want to put me in a cronic pain program but I have so many little things I do to cope with my pain to cope I was scared . They required I had to sleep in a bed . People said try memory foam or temperpedic it works for some with FM and or chronic pain . I thought since i sweat at night ( plus I am poor ) there is no way this would work . I sure wasnt going to spend what they want to just try it . To wind this up my family bought me a 12 inch twin xl mattress on ebay it was $184.95 . I was so sick I just threw it on top of the other mattress . I didnt even think the adjustable bed would work . It does . I sleep and have not woke in pain once . I am never hot as long as I keep my bowels working atleast every second day . For me I am suffering the same as you the functions supposed to be occuring in sleep dont work anymore . I used to wake in pain from bowel or colon spasming ..some is drug related too . However that memory foam works for me . They say you could try it for 90 days but you could never send it back if your sick . I am not a plant you can check me out on the net I have 12 years of posting under this alias and being in pain . Its called sleepy mountain mattress for anyone interested . It looks like hell sitting on my bed but I sleep better then I have in years . ITs a longshot but your talking to a guy who bouth the q-ray bracelet . Tried coral calcium , Did the bowel clense , Went to chronic pain school to use imagery , bought a sound machine ( l love buggy ride on the sharper image machine ) Tried inversion , Chiropractic care , accupuncture , Tens units ..You just keep trying you dont care how or why but when something helps your greatful . 12" TWIN XL 5.5 MEMORY FOAM MATTRESS BED SLEEP SYSTEM http://cgi.ebay.com/ebaymotors/ws/eBayISAPI.dll?ViewItem&ih=007&sspagename=STRK%3AMEWN%3AIT&viewitem=&item=170236431230&rd=1 you can check it out its three pieces of loose medium qaulity memory foam with a mattress pad it does shift around . I know many who wouldnt like it but a real temperpedic is 2000 plus . This is worth trying to see if you can sleep on foam you can get it on any bed size and lay it ontop of your regular bed at first . I think it would work best in a wooden homeade frame keeping the edges from squishing out . sleepymountainmattress their really distribute out of Kansas City . It may be second quality stuff I dont know . But yes a big part of this issue has to do with processes that occur when one is asleep , It has ties to hormones too . Very good info is being given here . My Fm started with a car accident though . Narcotic use and medications get into the mix as the years progress . Some in the goverment are studying now that opiates drain adrenal secreations , testosterone or progesterone , and one other hormone I forget thats related . Some people were taking pig adrenalin and hormones this deal with steroids ( HGH ) has made it a area Doctors are scared to discuss at all . If anyone has trouble with opiates I suggest they read Dr Dave Arnesons paper on methadone withdrawl . I know he advocates abstinence from opiates but the supplements he discusses to rebuild a person in detox helped keep me sane on my pain meds and them working again when used with opiate rotation ..again read and you will learn and understand . You almost have to get a phd in personal health along with coping with this . Insurance companies dont want to treat you they want to save $$$ this area is one little is known about .

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 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.

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

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

Bekah

7/13/08 9:51pm

We are definitely sure that I have FM and not Lyme, especially since there are no ticks where we live and I had not been in an area where they are when my symptoms started. I had blood work done last week and it all came back A OK.

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

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

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 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.  

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'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 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.

Bekah

8/ 7/08 6:42pm

I do have my BP checked regularly and it is fine.
Being that I am 24 I am definitely no where near menopause.

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

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

crzyinga

8/15/08 1:01pm

You are talking about me!!!  That's exactly the problems I have, except I can't tolerate the cold.  I wear a jacket everywhere.  If I go shopping in the refrigerated section, I am hurting so bad by the time I get out I can barely walk.  First thing the morning, I'm so stiff and hurting so bad.  I have noticed I have had soaking wet hair in the mornings from sweating, but my body is cold.  I know all of this is related to the FM.  I have had it since 1984 and am still trying to find the right combination of medications, etc. to help.  Maybe one day...

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 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.

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.

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.

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

Lois Laedlein

10/13/08 7:47am

I have had 4 saurgeries for hyperhidrosis and the sweating is worse than ever.  I have been told in passing that I have Fibromyalgia but I don't know.  I am also hot all the time and my husband is cold.

 

People like us need some serious help.  Can't somebody tdo something?

 

Please!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Adrienne

10/13/08 2:09pm

If you think you may have fibromyalgia, the best thing to is learn more about it and see if it fits.  The earlier you start treatment the better your prognosis is.

 

Here's a good place to start: What is Fibromyalgia?

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

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 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!!

nannax

9/23/10 10:42pm

Hi, I kinda have the same symptoms but now I have chronic diaria and cant eat. You can go to the symptom checker for free online. Give them your symptoms and they can tell you if that is normal or if it might be something else, I am not a doctor but i have been in pain for 4 years now and have done various test that come back normal, my doctor said I have miofasial pain. He was wrong, I fired him and my new doctor ordered mri's of the my hip and shoulder which has been hurting for a long time/ mri's show I have a tear in my hip and arthritis in my shoulder. It could be what u have been diagnosed with but you should look into it before you get worse. I am still fighting the doctors to take care of me but I am a fighter. 

I am the opposit, I am always cold and the cold air drives me crazy lol. My bones always hurt so when its cold they hurt worse, not looking forward for winter.

I too get so hot and skin is clammy, sweat is pouring off me all over, even if it is cold.  We turn down the heat to 60 at night  This is so embarrassing.  I do have a intollerance to heat and cold.  My poor husband has to suffer because of me.  Help.  Fibromyalgia is so terrible. I'm 66.

Annie Girl