body temperature totally out of whack

[GardeniaGirl]

This has been a problem for at least a few years now, but it is slowly driving me insane.

Its like my body cannot regulate temperature anymore. If it is cold out, I am beyond cold, cannot warm up, hands and feet are white due to lack of circulation. But if I eat a bowl of hot soup or any type of hot food, instantly, I am sweating. I feel very hot, overheated, and have to do something to cool down. My hands get really hot and I have to put them under cold water.

Then, if its hot out, my body overheats, I sweat like crazy. But, if i drink a freezing cold drink, I can start shivering.

I think it is partially from my connective tissue disorder and partially from the morphine I am on (I noticed this increased when I went on morphine).

Its soooo frustrating. The only time I feel "normal" is when I am in a nice, mildly cool temperature, without any drastic changes.

Does anyone else go through anything similar to this? How do you deal with it??

[Mark N]

I think what I go through is different than what you are describing. Mine is what women would call hot flashes. I break out in a sweat and get so hot I am uncomfortable and have to strip down to my shorts and t-shirt. It passes after 20 - 30 minutes. Mine started up when I began taking Cymbalta. My MIL tried Cymbalta but gave it up because of the sweats.

It sounds like just another uncomfortable conditions that we deal with like we don't have enough to deal with. I am sorry you are dealing with this because it sounds very uncomfortable. Maybe someone else will have some experience with it and have a solution for you.

[shotspine]

Oh Gosh GG....
I thought I had a bad thermostat, but you have me beat by a long shot. That has to be miserable for you. Myself, I am usually much hotter than anyone else. I can't tolerate heat over 75 tops. I prefer 65 daytime and 55 nighttime. I've noticed that during this last winter I never could get comfortable. Either too hot or too cold....but living in Washington with the dampness is a killer. I lived in Alaska from 83-2002 and was most comfortable there all year around. It was dry cold so didn't go to the bone like the damp cold does.

I'm not looking forward to summer at all. When it gets 75, I can barely breath. I live in a small 1 bdrm apt. and have 6 fans going in summer, 2 even in winter. I need the coolness of the air to breath comfortably.

When my Dad was in a nursing home, I couldn't visit very long because it was so HOT. It made me feel so guilty but I just couldn't do it. I also can't stand to be in a closed anything without open windows.......don't care if it's -20......must have open windows.

Would you maybe have a thyroid problem? What does your Dr think? I'd be interested to hear if you get any answers...........and better yet........a fix for you. Have you tried just drinking a beverage at comfortable room temp to see if you can keep a steady temp? If you are cold, drink beverage at 65-70 degrees instead of Hot. Or same thing if you are too hot.

Hugs!

[spoiledbeth]

GG,
My question was going to be if you have had your thyroid checked. I didn't used to have this problem at all, but now my internal thermastat doesn't work at all. I don't get cold easily though, just overheat at the littlest thing. You might talk to your doctor about doing some blood work to check your hormone levels, you will probably want your thyroid and cortisol levels checked. Just a thought!

[moose53]

((((((GG)))))),

I was thinking the same thing -- get your thyroid tested. ...check for enlargement of thyroid too.

Some other things to think about: are you overweight?? are you peri-menopausal??

I've noticed that when I go from temperature to another, I sweat. If I take a shower and then come out of the bathroom, I sweat <<-- hate that one. If I go inside-to-outside or outside-to-inside, I sweat.

I just came from 4 days in the hospital -- clinical trial. One of the nurse's kept saying, "I'll just turn the thermostat up, you must be uncomfortable". I wanted to whack the #ITCH. I kept waking up and getting my mini flashlight out and hauling my self over to turn it back down to 60.

In my own case, I figure a lot of it has to do with overweight and with post-menopause. But, my son also has trouble controlling his temperature -- always has had the problem -- so there might be something genetic there.

I carry a nice big man's handkerchief in my bra :o so I can 'clean myself up'. I carry a small Japanese paper fan with me all the time -- it's a more 'ladylike' way of cooling yourself and when other people who have control over the thermostat notice you sitting there fanning yourself, they tend to leave the dang thermostat alone :D

Make sure you have a real good workup of your thyroid and your other glands to make sure everything is okey-dokey, they you can arm yourself with some portable A/C. Of, if you're at work or at home most of the time (someplace with a fridge) -- I keep a bottle of astringent in the fridge (that feels good and cools you down fast).

Hugs.

Barb

[Lea]

I hear you loud and clear.I am dealing with the thermostat issues right now. They have ruled out peri menopause and I'm having my thyroid levels checked next week as soon as I can get to the lab.

Mark made a good point regarding meds side effects doing this as well.

According to my doctor, there can be several diseases or conditions that can cause a whacked out thermostat.
I appreciate Barb's tips to cool down.

[GardeniaGirl]

Thanks for the suggestions, Barb, those are helpful.

I noticed this started much worse after I began taking morphine.

But my methotrexate also screws with my hormones.

And, I am 37, so not sure if perimenopause could be at play. The past few months I have had several episodes of sweating without any temperature changes, and have had 3 or 4 irregular periods (normally like clockwork to the day) in the past 8 months or so.

Hormone fluctuations trigger migraines for me, so I am sure things are going to be real fun for me over the next 10 years. (/sarcasm)

[Matuboo]

For about five years, lasting from 1995-2000, I would get occasional fevers out of nowhere, going as high as 101 (normal body temp is around 97.8 for me.) This would occur at least two or three times per month. Initially I thought it was some kind of infection but was tested for everything, all the tests came back negative (including STD's.) Yes, I was wild and reckless at one time so it was frightening. A little off topic as I don't know if we're talking about actual low-grade fevers here but something I thought I'd share.


Back to present day, I still get this occasionally although I don't concern myself with it, I simply use medication or showers, whatever works. I think, for me, it's all part of the CFS/Fibro thing, my body simply doesn't work like most. Sometimes it feels like it doesn't work at all, I wouldn't mind having a new one, to be quite honest.;)

Happy Easter,

M

[ErinENj]

I have an issue with heat, and a little with cold. When it's cold out, I have some issues warming up if I've been cold for awhile, and my finger and toe nails have this habit of turning bluish-purple. Heat is my major, major problem, to the point where, even though we have central air conditioning in our house, my mom went out last year and bought me my own window air conditioner because it's too expensive to run the house's air all summer and she hates 'canned air,' and that she doesn't want to hear me b$%ch and moan all summer. I just can't stop sweating. It's gotten only into the 70s and nearly 80s so far this spring and as soon as those days pop up, I'm starting to wonder if it's too early to put the air conditioner in. My windows were wide open, there was a fan in one window trying to get an air flow going, and I had a circular fan directed right on me and I was still sweating.

Some of my sweating comes from my pain though. I went through a bunch of meds thinking it was that, and then through dozens of tests and blood tests to see if it was something else because it wasn't the meds, on and on.. No one could figure out what was wrong with me. So I started keeping a sweat-diary, along with a pain diary, because I had a thought that it might be my pain, but wasn't sure. So I kept track of when I would sweat, what I was doing and what my pain level was at the time and the average for the day. After a few weeks, I noticed a pattern: when my pain levels shot up quickly, almost always through activity, I would start sweating profusely. One of the most often things I did to provoke the sweating was shopping. If I had to go to two or more stores, or was out running errands that would get me out of the car each stop for more than about 45 minutes, I started sweating like a pig. Bookstores were the worst, along with Best Buy, because in both stores, I can spend absolutely hours browsing. I finally worked it all out with a little research. When the body experiences pain, one of it's reactions can be sweating. These meds don't get rid of the pain. They work on the brain to tell it not to make us feel the pain, but the pain signals are still being sent to the brain. The only difference is what the brain does with those signals. So, just because I'm on meds, doesn't mean that I won't have any of the symptoms of pain. When my pain takes sudden and huge jump, like what happens when I'm on my feet for awhile especially with shopping, my body still feels that and has a physiologic reaction to that pain. I'm feeling the spike in pain, but not nearly as much as my brain is, so while I know I'm hurting worse than usual, my brain is freaking out, screaming "Stop, please, just stop what you're doing! We can't take anymore!! You've got to stop!" So it's still reacting as anyone would when they are in severe pain. My brain is used to a certain level, so it doesn't have that kind of a reaction to my regular pain and it doesn't have that kind of immediate reaction to sudden increases when it slowly increases like it does throughout the day. But when I go from one level to a much higher one within an hour, then it has the physiological reaction, i.e. sweating.

So, my internal temperature is a bit off, especially when the temperature gets above 50-60 degrees, but there's a lot of my sweating issues that are directly linked to my pain levels.

Gardenia: No matter what it is, I hope you can get it worked out so that you can be at least comfortable temperature-wise. There's nothing worse than being in pain AND miserable because you're either so hot you can't stand it or so cold that you can't function!!

[GardeniaGirl]

Some of my sweating comes from my pain though. .... After a few weeks, I noticed a pattern: when my pain levels shot up quickly, almost always through activity, I would start sweating profusely. One of the most often things I did to provoke the sweating was shopping. If I had to go to two or more stores, or was out running errands that would get me out of the car each stop for more than about 45 minutes, I started sweating like a pig. Bookstores were the worst, along with Best Buy, because in both stores, I can spend absolutely hours browsing. I finally worked it all out with a little research. When the body experiences pain, one of it's reactions can be sweating.

Erin, I am glad you wrote about this sweating and pain connection that you uncovered.....it makes a lot of sense and I think that is sometimes a factor in my sweating.

Too many errands in a row or too much shopping where I stand around a lot always do me in.

If I alternate between standing, sitting, and walking, I can go for longer - lots of standing really does a number on my poor feet.

I feel bad for my body sometimes -- it is so darn screwed up inside.

thanks for sharing about your "research" !

[Lea]

Erin,

Boy does that make alot of sense. The pain itself is masked, but not the physiological responses. I would guess the responses would be dampened, but not eliminated completely.

I have been struggling just like Gardenia. It is just as disabling as the pain itself.

[ErinENj]

I'm glad I could help a little bit! I actually had an incident today while at my grandmother's house celebrating Easter. I was a bit misinformed about what exactly the plans were for lunch today (our traditional ham lunch. the only thing that has changed over the past 25 years is where my grandparents' house is, what we wear (no more of those cute little easter dresses for me, and of course, no more of the hats with those elastic bands around my neck that hurts a lot!) and who buys the ham. It's a little bit of a hard day, since my grandfather was always the one who bought the ham, one of those spiral-cut ones, but since he passed, it's fallen to others.) so when I found out that 1- lunch was at 1 not 1:30, and 2- the people coming weren't just me, mom, my brother and his girlfriend, and the standard token appearence by my dad, but basically the entire family cousins, uncles and aunts, except for 1 of the four aunts I have on that side of the fam, it was 12:30 and I hadn't even gotten into the shower or run down to the pharmacy to pick up the scripts I had forgotten to get the day before and had to have today. So I ran around for about an hour to try to get showered, dressed, and down and back to the pharmacy, and managed to get to my grandmother's at 1:30 exactly, the time I had thought lunch was being served.

By the time I got to nana's house, I was hurting really badly. It was a bad morning because I had overdone again on Saturday, after overdoing on Friday (my mom got me two pieces of furniture from Ikea, so they had to be put together. And with me, Ikea is like getting a present, so I want to open it as soon as I can and get it all put together asap so I can see the final product and feel like I accomplished something), so by the time I got to sit down, I was sweating profusely. My grandmother asked me why I didn't take my sweater off to cool down a little bit, and I had to explain to her that it was the pain, not that I was hot. And, as is standard with my family's understanding of my pain, it took a lot more explaining to try to get her to understand it all (plus, it doesn't help that Nana's cheese is very quickly seperating from her crackers, or that's what we call it. She has some substantial dementia issues and has had 1 or 2 major strokes and a dozen or more TIAs, so her memory is horrible and she's almost perpetually confused.). Then, two of my aunts also asked me why I didn't take my sweater off, and of course, it's the two aunts that really, really don't get this whole thing and the ones who think I'm both a drug addict faking pain to get meds and a wuss because I just can't quietly deal with the pain, so it was somewhat frustrating. It wouldn't be a family gathering if I didn't have a problem with at least one of them, and as is usual, I had more than one issue. My most un-understanding aunt asked me what my plans were for after I graduate (another one actually asked me if I was graduating. As if I hadn't been talking about it for months, and as if I hadn't, just after I got my audit and found out I really was graduating, had told her the good news and her response was 'I know,' said in her snottiest 'i really don't care' voice. Yeah, I felt really validated. :rolleyes: ) and when I told her that I was going to Amsterdam, she practically flipped out. She just couldn't believe that I was being rewarded for for spending 7 years in college, and then asked each and every one of my other aunts and my mother what they got when they graduated college, to make sure that I understood that I didn't deserve that trip. When my mom rightfully stuck up for me and told her that I definately deserve this trip and have worked really hard for the past 4 years to get done, my aunt said, "well, you deserve it too. Heck, we all deserve it for dealing with her situation." My eyes bugged directly out of my face, and I worked really hard not to take her head, bite it off, chew it for awhile, and spit it back down her throat for a comment like that. I just said, "I know my mom deserves it, so that's why she's coming too and I wouldn't hear anything about her not coming. She deserves this trip just as much as I do because I know I wouldn't have made it through the past 4 years without her love, support, and help." And I walked away. Another typical family function where I end up walking out feeling like a complete burden and loser and drug addict and wuss, and all those other things that my aunts seem intent on making me feel horrible for. Anyway...

Sorry, I had to rant about that for a moment...,back to the point...

Also, I had to do some work on getting my closet organized, and it had to be done today because one of the two pieces from Ikea I had put together was for the closet and I had to get it in there since it was amazingly in the way in my room and there was nowhere else to put it. It took me about an hour to box up some clothes I am putting aside that don't fit now but will fit eventually, put together this completely ghetto-fabulous shoe rack to get rid of the dozen shoe boxes I had in my closet, and get all the miscellaneous stuff out of the way so my mom could come in and help me move these two giant rubbermaid containers of other "I will fit into this wardrobe again, so I'm not getting rid of it since I can't afford to buy new stuff" and then help me move the one piece into my closet. By the time I was done, I was drenched!! It was cold enough today for it to snow shower all day, and I had both windows wide open. My room was so cold that mom couldn't stay in my room for more than a few minutes before she started freezing, so she went downstairs and got this major winter coat so she could help me!! I just couldn't stop sweating! And I was positive it was the pain. Plus, I know it was especially bad simply because I had already had one major spike earlier, and this was just adding insult to injury so to speak.

Oh, I wanted to tell you one of my tricks. My sweating stops almost immediately as soon as I lie down. If I find that lying down isn't working as well as usual, I have two ice packs, one for my neck and one for my low back that seem to work miracles for getting me to stop sweating.

I'm really glad that my information can help you. It's really hard to deal with this pain, so trying to determine what the body temp changes are from is beyond frustrating! It took me a long time and a lot of dead-ends before I figured it out. Our brains still feel the pain and our brains are still getting the pain signals. The meds just mask those pain signals on the return trip (the pain goes up the spinal cord to the brain and then the brain sends the signal back to tell you that x,y,z hurts) so we don't feel it, but it's still there, so it's perfectly normal that our bodies will still react to that pain as it would if the meds weren't there. And, Gardenia, I feel really bad for my body too!! :D

Have a happy Easter!! I'm off to get to bed since I have a Latin test tomorrow and still have a bunch to do for that AND I have a bunch to do before I can get to bed! I'm shooting for before 2:30am which means that I'll probably be in bed by 4am. :rolleyes:

[BrokenBladder]

Erin thanks for your info on sweating and pain. I had always thought about doing a journal to figure out my body temperature problem, but never got around to it.
GG I'm so sorry that you're dealing with this to such an extreme. Wow!! I get hot alot, but not the cold shivering that you're talking about. That would make me crazy!! I do agree that you should have your thyroid checked out, just in case, and then maybe do the pain journal. I would also research morphine. Hope you can get a handle on this!!:)