Fibromyalgia & Body temperature PT. 2

Bekah Community Member July 03, 2008
  • Just wanted to post an update for you all.

    I saw my doctor today regarding my FM and asked her the burning question (no pun intented, haha!) "Why am I so HOT!?"

    She told me that there are a few possibilities. It could be thyroid related, a medication side effect (Amitriptyline has increased body temp. as a side effect) or it is very possible that it is just one of those nasty quirks that goes along with FM. She hasn't had many patients complaining of over heating with FM but she wouldn't rule it out. It is not uncommon for chronic pain to increase body temperature.

    I wish I could have more answers so we can all get some relief!


    Feel free to keep on posting comments to this sharepost and the previous post about FM and our body temperature. It has been very interesting (and comforting!) to read all the replies.

    Cheers! Laughing

    Bekah

26 Comments
  • tobias 1234
    Nov. 07, 2010

    hi my name is Tobias i am 16 years old male and live in sweden. 

    i have a problem every time i start freezing my hands,fingers and parts of my face turn purple or red now i am a little underweight so im thinking could that be the problem but i dont know, it dosent even have to be cold outside it can be around 15 Celsius and down,...

    RHMLucky777

    Read More

    hi my name is Tobias i am 16 years old male and live in sweden. 

    i have a problem every time i start freezing my hands,fingers and parts of my face turn purple or red now i am a little underweight so im thinking could that be the problem but i dont know, it dosent even have to be cold outside it can be around 15 Celsius and down, i do not know what to do, i cant increase my body weight  because i can not start eating more or eating more unhealthy stuff

    because i been having for three years now bad skin problems and i dont wanna effect or hurt my skin more than it already is. by skin problems i mostly mean pimples, and there we have another problem of mine i dont know how to get rid of (pimples) i have tried proactive and a bunch of different products and nothing seem to work, so to anyone who is reading this i would very much appreciate some tips or just anything that you think can help me thanks.

     

     

     

    • a28a7d2
      Sep. 13, 2014

      Look up Raynauds Syndrome and MPN disorders

       

       

  • Mary Ruh
    Feb. 20, 2010

    I have been experiencing night chills.  I thought that could be FM.  The pain has been awful lately.  I don't know what to do.  I tried taking Sierra Sil but have had little pain relief. 

  • Anonymous
    Sue B
    Sep. 25, 2008

    Hello,

                      My name is Sue and I have FM, to tell you the truth it get's no better with age. (it get's worse) I tryed lyrica the new drug out for FM and it didn't work for me I live with this pain day in and day out everyday and it is getting worse. I am...

    RHMLucky777

    Read More

    Hello,

                      My name is Sue and I have FM, to tell you the truth it get's no better with age. (it get's worse) I tryed lyrica the new drug out for FM and it didn't work for me I live with this pain day in and day out everyday and it is getting worse. I am 49 yrs. old soon to be 50 and very active. It scares me that how much worse it this gonna get? After sleeping at night and getting up in the morning I feel like 100 yr. old lady  I could hardly walk and my whole body is swollen (hands and feet real bad) Fatique forget about it and just the pain 24/7 . I was taking like 4 advil for just an anti-inflamatory but now I can't take that because of IBS and tearing my stomach up. There has to be something to do, some Dr.'s think it's a fake DX when they just don't know what the cause is, I did hear that if something tramatic happened to you at a young age that could trigger FM. I did have a tragic accident at age 14 and (got hit by a car) I had a cast on my leg for 1 1/2 yrs.   Well all my FM friends may God Bless us and have Mercy and Grace upon this terrible disease.  We all need to Pray for ourselves and others.

                                                                              Blessings,

                                                                                                        Sue

  • natgurule
    Sep. 24, 2008

    I have had FM along with other spinal problems since I was a child. Saw dozens and dozens of different doctors, but was not diagnose until I was in my mid thirties. Late last summer I started getting these areas of swelling, about the size of an olive in different areas only on the left side of my face. There was little if any warning, no...

    RHMLucky777

    Read More

    I have had FM along with other spinal problems since I was a child. Saw dozens and dozens of different doctors, but was not diagnose until I was in my mid thirties. Late last summer I started getting these areas of swelling, about the size of an olive in different areas only on the left side of my face. There was little if any warning, no real pain and after a couple of days it would be gone until the next one would show up, after the fifth one my PCP sent me for a C-Scan and diagnose sinus infection. Put me on a month of Bactrim twice a day. After two weeks of the antibiotic another swelling pops up, but this one was different. This time it was in front of both ears down into the jaw and neck. This gave both me and my PCP a really big scare because I have Chiari Malformation II and any swelling in my neck can cause some very serious problems. So she send me to see an ENT, she says I don't feel anything and doesn't see why I am so concerned about any swelling in my neck. FYI I still cannot pinch any skin in front of my right ear nor can barely feel my jawbone on that side. This Feb. I got another sinus infection, felt like the top of my head was full of concert, could breathe through my nose, but could not smell anything, after 6 weeks things started getting back to normal. Sorry to make a short story long, but I thought a little info would help. Last fall when the first infection was going on I would get very hot and sweat severely even with the least amount of attactive, sinus infection clears up heat and sweating go to. Infection comes back and so does the H&S. My Pcp sent me for an Electrocardium and blood work, everything fine, but still dealing with this H&S problem.   

  • Jo
    Jo
    Sep. 10, 2008

    HEY GIRL.I AM SORRY FOR YOUR PAIN.YOUR LIFE SEEMS TO HAVE BEEN ONE THAT IS EXCITING AND WONDERFUL UNITL THE FIBRO AND THE JAW DEAL.RIGHT NOW I AM IN A LOT OF PAIN.(HAH...AS IS ANYONE WRITING HERE ISN'T) AND MY NECK IS HURTING AND I DO HAVE THE FLU.I AM WRITING BIG I CAN'T FIND MY GLASSES SO PLEASE DONT THINK I AM SHOUTING I AM NOT.ONE THING YOU SAID OUT OF...

    RHMLucky777

    Read More

    HEY GIRL.I AM SORRY FOR YOUR PAIN.YOUR LIFE SEEMS TO HAVE BEEN ONE THAT IS EXCITING AND WONDERFUL UNITL THE FIBRO AND THE JAW DEAL.RIGHT NOW I AM IN A LOT OF PAIN.(HAH...AS IS ANYONE WRITING HERE ISN'T) AND MY NECK IS HURTING AND I DO HAVE THE FLU.I AM WRITING BIG I CAN'T FIND MY GLASSES SO PLEASE DONT THINK I AM SHOUTING I AM NOT.ONE THING YOU SAID OUT OF ALL THE STORIES CAUGHT MY ATTENTION.SOMETHING THAT UNTIL NOW NO ONE HAS MENTIONED.AND THAT IS ABOUT BODY TEMPERATURE.I SLEEP WITH AND ELECTRIC BLANKET BUT I NEED THE AIR ON COOL.I CAN'T EVEN TAKE A SHOWER WITHOUT GOING THROUGH THE PAIN OF THE WATER STINGING MY SKIN AND THAT RUSH OF COLD AIR WHEN YOU TURN OFF THE SHOWER .WHEN THAT HAPPENS ALL THE MUSCLES IN MY BODY GO INTO SPASMS.AND IF MY HUSBAND SHOULD BE TOO COLD AND TURN THE AIR DOWN ONE DEGREE I AUTOMATICALLY WAKE UP.IT SEEMS LIKE MY BODY IS SO SENSITIVE TO EVEN THE SLIGHTEST CHANGE IN THE ATMOSPHERE AROUND ME.WHAT DO YOU SUPPOSE CAUSES THAT.I CANNOT GO INTO A SWIMMING POOL BEFORE AUG.I HEAR EVERYONE SAY YOU'LL GET USED TO IT.BUT THEY DONT HAVE FIBRO.I TELL THEM I DON'T GET USED TO IT.I HAVE PAIN.AND THAT PAIN CUTS ME OFF FROM SOCIETY AND FRIENDS AND PARTIES AND THINGS TO DO THAT I USED TO DO.THEN ONE BY ONE MY FRIENDS HAVE LEFT ME.OH THERE ARE A COUPLE THAT SINCERELY LOVE ME BUT THEN AGAIN THEY HAVE THEIR OWN PROBLEMS AND I UNDERSTAND..BUT NOW I AM A HIGH MAINTENENCE FRIEND.THEY NEVER WANT TO COMPROMISE AT ALL.SURE I CAN'T WALK THE ENTIRE MALL.BUT WHY CANT WE GO TO A COUPLE OF STORES AT ONE END OR THE OTHER.SEE THEY JUST DON'T UNDERSTAND WHILE THEY ARE WORKING JUST HOW SLOW A YEAR IS TO US.IT PASSES FAST WHEN YOU ARE WORKING AND NOT IN A LOT OF PAIN.OR EVEN IF YOU ARE BUT YOU ARE STILL ABLE TO WORK THEN YOU ARE A HECK OF A LOT BETTER OFF THAN I AM.I ALWAYS WANTED TO WORK UNTIL THE AGE I COULD GET MY BENEFITS AND ME AND THE OLE BOY COULD GO TO A CRUISE OR JUST TRAVEL.WELL I GUESS THAT DIDN'T WORK OUT.I AM SO TIRED OF BEING JUDGED AND OF PEOPLE DROPPING OUT OF MY LIFE BECAUSE I CAN'T DO WHAT I ONCE DID.WHY IS IT THAT WE ARE DENIED THE HAPPINESS THAT EVERYBODY ELSE HAS.I GUESS ALL OF US WILL NEVER UNDERSTAND BUT I DO PRAY FOR ALL OF US.I HOPE THAT SOMEDAY THIS WILL HAVE SOME KIND OF CURE.I TRIED LYRICA AND I GAINED OVER 25 LBS IN 3 MONTHS.NOW I CANT GET IT OFF.BUT MAYBE THAT DRUG WILL HELP OTHER PEOPLE.IT JUST DIDN'T WORK FOR ME.I HOPE IN OUR LIFETIME THERE WILL BE SOMETHING.WE MUST STCIK TOGETHER BECAUSE OTHER PEOPLE ARE TIRED OF HEARING US WHINE I GUESS.BUT EVERYONE OF YOU KNOW WHERE I AM COMING FROM.I PRAY FOR US ALL EVERY NIGHT.FOR HOPE,FOR FAMILY,FOR LOST FRIENDSHIPS,FOR A BETTER DAY.TO EACH OF YOU IN PAIN.....I WISH YOU HOPE.....LOVE TO EACH AND EVERY ONE.....JO

  • lunablue
    Sep. 10, 2008

    I find that keeping a fn on near me really help's. I'm also the only one I know who keep's their window open all year round.

  • sunidayz
    Aug. 28, 2008

    I have also had 99.5 or so temp whenever I am in flare.  I feel so hot inside.  (Does this make sense?)  I have had this for 5 yrs now.....

  • honora2929
    Aug. 05, 2008

    Hi im new here ,i totally have a heat problem of the hot type and i have fibro i also take amatryptyline so dont know what the answer there is but if you find an answe i would love to know .Hon

  • Anonymous
    Anonymous
    Jul. 22, 2008

    I have exactly the same thing.  I always thought it was due to menopause.  However, someone (a nurse practitioner) finally listened to me, spoke with a neurologist and after much testing found that I not only have Fibromyalgia but also dysautonomia (autonomic dysfunction).  There is a problem with your system whereby you cannot regulate your...

    RHMLucky777

    Read More

    I have exactly the same thing.  I always thought it was due to menopause.  However, someone (a nurse practitioner) finally listened to me, spoke with a neurologist and after much testing found that I not only have Fibromyalgia but also dysautonomia (autonomic dysfunction).  There is a problem with your system whereby you cannot regulate your temperature (among may other things).  I cannot be outside when it very hot and humid or on the reverse side when it's extremely cold (I turn purple).  I would suggest that you speak with your physician and ask her/him to refer you to a neurologist who specializes in autonomic dysfunction (very few physicians do).  This is very important!  NOT all neurologists are familiar with this disorder.  It an uphill battle but sometimes they are able to help you cope with the various problems that come up with the disorder.  Not uncommon to have both fibromyalgia and dysautonomia.

     

    Take care,

     

    • wanderer
      Jul. 24, 2008

      Thanks so much for this information - I have never heard about this, and will discuss this with my pain doctor. I've never mentioned my problem with excessive perspiration/feeling extremely cold - always thougth it was hormonal or menopause.

       

      wanderer

    • Anonymous
      Anonymous
      Jul. 24, 2008

      Actually, the autonomic system regulates almost everything in your body.  I have heat and cold intolerance but I also do not sweat (except under my arms), some people sweat excessively.  I also have something called POTS which means postural orthostatic tachycardia syndrome.  My heart races for absolutely no reason.  If I eat just a little...

      RHMLucky777

      Read More

      Actually, the autonomic system regulates almost everything in your body.  I have heat and cold intolerance but I also do not sweat (except under my arms), some people sweat excessively.  I also have something called POTS which means postural orthostatic tachycardia syndrome.  My heart races for absolutely no reason.  If I eat just a little too much (even a few bites) my blood pressure goes down and my heart rate goes up.  I've had a rate of 113 an hour after I've eaten. 

      It's an interesting disorder.  See if you have an autonomic disorder support group in your area or look up dysautonomia on google and it might give you some more insight into the disorder.  You can then take your little articles to your physician and see what he/she has to say.  It might not be the problem but it's worth looking into but remember----very few doctors know anything about this disorder.  You need a neurologist who specializes in autonomic dysfunction.  There are physicians at Mayo in Minnesota, Vanderbilt in Nashville and The Medical College of Wisconsin in Milwaukee who have been trained specifically in this specialty.  There are probably others but these are the ones that I know for sure. 

       

      Good luck.

    • Ann P.
      Feb. 03, 2011

      I have the very same thing going on,racing heart,very hot sweating at night after I fall as sleep.Very cold before bed.

      I have been looking for answers for years......

  • Anonymous
    Anonymous
    Jul. 17, 2008

    Hi  I have dealt with FM for a long time and I have many different things going on and have tried different meds and of course Drs.  It is a temp control thing.  I get hot and cold all the time and can never controll my temp and different medicines can make it worse.  I was on one medicine that for an hour every morning and night I would...

    RHMLucky777

    Read More

    Hi  I have dealt with FM for a long time and I have many different things going on and have tried different meds and of course Drs.  It is a temp control thing.  I get hot and cold all the time and can never controll my temp and different medicines can make it worse.  I was on one medicine that for an hour every morning and night I would just start to sweat.  I would have it pour off me.  Yuck!!  But it helped me a lot so I stuck with it for a while.  Plus the weather outside affects me real bad too.  The heat drains energy from me and the cold makes me hurt worse.  People tease me cause I put the sweater on and take the sweater off but I try to keep some kind of a consistent temp. at all times if thats possible.

  • SHARON FELDMAN
    Jul. 10, 2008

    i have found that i get very hot when i sleep and sweat so my clothes are wet and my hair.  no, i am not going through menapause.  way past it but i do have this happen.  not every night but enough nights.

    i also suffer from being very cold.  especially as the day goes on and i usually need to sleep with a sweatshirt and afghan.  kind...

    RHMLucky777

    Read More

    i have found that i get very hot when i sleep and sweat so my clothes are wet and my hair.  no, i am not going through menapause.  way past it but i do have this happen.  not every night but enough nights.

    i also suffer from being very cold.  especially as the day goes on and i usually need to sleep with a sweatshirt and afghan.  kind of crazy since i live in south florida.

    oh we, fm is a nasty disease but i also suffer from Sjogrens and Osteoarthritis.  also some other things too so i am not in a good place but i do keep a good attitude and try to be positive and motivated every day i wake up.

    any one hot and cold like i am?

    love

    sharon

    piax2

    • Anonymous
      Sue B
      Sep. 25, 2008

      Hey Sharon, I go thru  the same thing hot, cold also done with menopause and live in south Fl.  The pain is the worse for me hand and feet swollen and fatique all the time.  Hang in there and God Bless

                                                                                                           ...

      RHMLucky777

      Read More

      Hey Sharon, I go thru  the same thing hot, cold also done with menopause and live in south Fl.  The pain is the worse for me hand and feet swollen and fatique all the time.  Hang in there and God Bless

                                                                                                            Sue

    • Anonymous
      Sue B
      Sep. 25, 2008

      Hey Sharon, I go thru  the same thing hot, cold also done with menopause and live in south Fl.  The pain is the worse for me hand and feet swollen and fatique all the time.  Hang in there and God Bless

                                                                                                           ...

      RHMLucky777

      Read More

      Hey Sharon, I go thru  the same thing hot, cold also done with menopause and live in south Fl.  The pain is the worse for me hand and feet swollen and fatique all the time.  Hang in there and God Bless

                                                                                                            Sue

  • Anonymous
    Holly
    Jul. 10, 2008

    Has anybody ever suggested that you might have RSD (Reflex Sympathic Dystrophy)?  I'm not sure of your smyptoms, but you might want to look into that.  I have the "Hot" side of RSD.  I am told FM is it's little sis...I have that too as do many RSD suffers.

  • Mariepi
    Jul. 10, 2008

    Hi.

    I have a huge problem with body temp.( I think I reply once to a similar posting) To the contrary of most of you , My body tremp is low. About 96-97 but at time I feel very hot and brake into a majoor sweat with a rise in body temp. to 98.

    The last time I saw a dr. ( sleep dr. also a generalis)   he took me of  Amitriptylin to...

    RHMLucky777

    Read More

    Hi.

    I have a huge problem with body temp.( I think I reply once to a similar posting) To the contrary of most of you , My body tremp is low. About 96-97 but at time I feel very hot and brake into a majoor sweat with a rise in body temp. to 98.

    The last time I saw a dr. ( sleep dr. also a generalis)   he took me of  Amitriptylin to no avail, I had gone off all my meds when I started this crazy round of sweating. Summer is worst a lot worst. My Gp prescribed me clonidine 1/4 to 1/2 of a pill and .5 ativan I take it before going out like for grocery or other . It seem to work but the worst of my problem shows non announced. It is not tied to me feeling nervous or else it just shows and that's it. The minute I do something a bit demanding( like using the phone) I  brake up into one.

    I have this going for about 9 years and saw 2 endocrinologists one was for my thyro out of wack too but in normal range with thyro. supp.

    If only I can get rid of that problem........There is a new Chinese dr. in town apparently very good with acupuncture I feel like trying him

     

  • Anonymous
    Kat
    Jul. 09, 2008

    I have done alot of research over the past 9 yrs since I was diagnosed with FMS. Along with a multitude of other painful conditions and operations..but back to the point. In ppl like us with FMS, we can't regulate our temperature due to our Parasympathetic and Sympathetic Nervous Systems are outta wack. We also don't produce ATP, which every cell in the body...

    RHMLucky777

    Read More

    I have done alot of research over the past 9 yrs since I was diagnosed with FMS. Along with a multitude of other painful conditions and operations..but back to the point. In ppl like us with FMS, we can't regulate our temperature due to our Parasympathetic and Sympathetic Nervous Systems are outta wack. We also don't produce ATP, which every cell in the body uses. (See Krebs Cycle)

     

    So to answer one of your updates; it may be the meds your on, it also could be your hormones, but most likely I'll lay a Ben Franklin down that it's your CNS isn't functioning properly.

     

    Try to find a Rheumatologist that specializes in Fibromyalgia.

     

    One question: why are you on that medication? For sleep? Just curious, as that's what they put Bipolar ppl on. Sounds like you need a great Doc that keeps up with Fibro and not the drug reps.

     

    Good luck....

    WolfClan63

    www.myspace.com/ladywolf63

    • Bekah
      Jul. 13, 2008

      My doctor is FANTASTIC and is very avid in Fibromyalgia treatment.
      I am on Amitriptyline because it WORKS FOR ME. I do not have any side effects from the drug (except perhaps being over heated sometimes) I also suffer from chronic headaches and this medication works wonderful at controlling them. My doctor likes to use Amitriptyline because it is one of the...

      RHMLucky777

      Read More

      My doctor is FANTASTIC and is very avid in Fibromyalgia treatment.
      I am on Amitriptyline because it WORKS FOR ME. I do not have any side effects from the drug (except perhaps being over heated sometimes) I also suffer from chronic headaches and this medication works wonderful at controlling them. My doctor likes to use Amitriptyline because it is one of the safest medications out there as it has been around for ages. Amitriptyline doesn't work for everyone, but it is great for those it does help. This medication works well for many kinds of illness, not just depression or Bipolar....which BTW I have never heard of it being used for that purpose, but if it works, then great! This medication has also been used for migraine and tension headache patients.

    • Bekah
      Jul. 13, 2008

      Also, all my blood work came back A OK! Laughing

  • Betty Boop Too
    Jul. 06, 2008

    Hello again tatoo girl

     

    Since you created the original post on temp, I began trying to figure out why I'm always so cold and figure some things out.

     

    I started taking my temp daily or sometimes multiple times per day and I discovered that my regular resting temp is only about 97.4*.  So when I'm up to norm or 98.6, I feel & react like I...

    RHMLucky777

    Read More

    Hello again tatoo girl

     

    Since you created the original post on temp, I began trying to figure out why I'm always so cold and figure some things out.

     

    I started taking my temp daily or sometimes multiple times per day and I discovered that my regular resting temp is only about 97.4*.  So when I'm up to norm or 98.6, I feel & react like I have a fevor?? it's a little interesting to discover this and I'm going to be discussing this with my primary care on tuesday to see what he thinks.  I'm not sure yet If I should consider me having a fevor when my temp is at 98.6 or not to worry if it flucuates up & down like that.

     

    you mentioned amatryptaline and I take nortryptaline so I'm wondering if mine is possibly the reason for my temp issues too.

     

    Thanks for keeping this one going, it's been really interesting reading all the post you've been getting.

     

    Hugs

    Betty

  • Anonymous
    izzy
    Jul. 05, 2008

    Ran across your post while looking for something else but I have to put my two cents in. My husband worked with a survey crew for many years here in New England and he contracted Lyme disease. Two of the major symptoms were chronic pain and an inablity to regulate body temperature. Have you been tested for Lyme? If it is possible that you were infected then...

    RHMLucky777

    Read More

    Ran across your post while looking for something else but I have to put my two cents in. My husband worked with a survey crew for many years here in New England and he contracted Lyme disease. Two of the major symptoms were chronic pain and an inablity to regulate body temperature. Have you been tested for Lyme? If it is possible that you were infected then get tested asap. DO NOT let a doctor talk you out of it AND get ALL the lyme tests, not just one or two. I think they're up to six of them now. This crap hides so don't think of all the testing as overkill. Untreated Lyme is hell on earth. Also, the best treatment is tetracycline BUT don't think three weeks will do it, especially if the disease has had time to settle in and "party". Get a doctor who specialises in Lyme. My husband was on Tet for 18 months before he shook his infection. Good luck!

  • Anonymous
    Anonymous
    Jul. 04, 2008

    I am over heated all the time and my husband sleeps rolled up in a thick blanket, even covering his head much of the time.  That changes though, just before a flare of severe pain I get freezing cold and can't get warmed up no matter what I do and then after the chill finally breaks I begin to hurt really bad.  It seems to come on spells.  I...

    RHMLucky777

    Read More

    I am over heated all the time and my husband sleeps rolled up in a thick blanket, even covering his head much of the time.  That changes though, just before a flare of severe pain I get freezing cold and can't get warmed up no matter what I do and then after the chill finally breaks I begin to hurt really bad.  It seems to come on spells.  I will chill daily or every other day bringing on severe pain.  Then for no apearant reason it stops.

  • amebaluv
    Jul. 03, 2008

    I was told I had Fm before I found out I have Dystonia. My temp ran at 99.7 for like 3 years. Now I wouldn't know if I had a temp because of all the ibuprofin and percs I'm on everyday...Angela