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Severe Cold Intolerance 
2nd-Sep-2007 03:23 am
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Do any of you have a severe cold intolerance that was diagnosed as a fibro symptom first, but found to be caused by something else?

I have a very severe cold intolerance. When I say severe, I mean my body does not warm up on its own whatsoever. I wake up freezing. I use heat pads to warm up (even in summer). The temps have to be 85 F. or above for me to warm. Anything lower and I get the shakes, severe headaches, pins and needles feeling in my extremities and I feel terrible lethargy and brain fog. I also have increased joint and muscle pain and limited mobility when I'm cold.



In the summer, I have to wear socks indoors and sometimes I use blankets when I'm in my air conditioned house (I share it, so I can't have it as warm as I need). I have to carry jackets to wear in public places because the A/C causes so many problems for me. It takes a lot for me to sweat. I can stand on summer sun-heated concrete for several minutes before I even feel the heat (and by that time, I've burnt the soles of my feet, but didn't feel it). People around me say they wish they had my problem because they hate the heat. What they don't seem to realize it that I'm in pain and discomfort all the time because of this problem.

My GP and rheumie cleared me of autoimmune diseases that I suspected could be the cause. They told me it's "just fibro" and to basically live with it. But the intolerance is actually getting worse. With fall and winter approaching here, I'm not looking forward to the crippling effects those have on my health because of this cold sensitivity. I'm wondering what I should be looking into test wise to see what my docs might have missed.

Thanks for any help.
Comments 
2nd-Sep-2007 08:44 am (UTC)
I'm the same and have been diagnosed (finally) with an underactive thyroid, but not sure if you've already been tested, which you probably have. My GP is quite concerned how the tips of my fingers and my feet are always cold though, but he doesn't think that I have Raynaulds, just poor circulation or something different.

Sorry I couldn't be much help!
2nd-Sep-2007 08:56 am (UTC)
I have been tested, but I've heard that the tests can sometimes show false negatives. I keep wondering if it's my thyroid and they're just missing it. Are you being treated for the thyroid and, if so, is it helping your cold intolerance?

I have been diagnosed with Raynaud’s, but I feel like the intolerance is spreading to other areas of my body, not just extremities, like an overall poor circulation issue.

You actually have helped. You put the thyroid concern back into my list of things to ask the doctors.

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2nd-Sep-2007 09:29 am (UTC)
Thank you so much! I knew there was more to testing than the one test I've been given. This arms with more info to give to my docs.
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2nd-Sep-2007 09:34 am (UTC)
my genetics are the suck. =P

Oh, I greatly empathize there. I half joke with my family, "Why did you pass these on to me?!" Filling out forms on family medical history takes awhile..
2nd-Sep-2007 09:25 am (UTC)
Def push for retesting, or speak to another Doctor-it took another Dr to diagnose me, and he was so angry that I'd not been treated for it before, the other Dr said I was 'slightly underactive'.

I'd originally seen the new one because my hands and feet swell up and the other Dr had just mentioned in passing that Fibro shouldn't cause inflammation, so the new guy checked my files and the Thyroid readings popped up.

I'm taking 25mcg of Levothyroxine at the moment, but have only been on it a month so far, so haven't felt much different-have a bit more energy, but am sure that they will raise my dosage. The Dr said that things won't properly start getting better Thyroid wise for 6-9 months from start of treatment, but I hope that it makes things much easier for me, shifts a lot of the fatigue and then I can concentrate on dealing with the pain every day instead!
2nd-Sep-2007 09:32 am (UTC)
Interesting that you have swelling. I have hand swelling and I've been told repeatedly, "fibro doesn't cause swelling." But no one has looked into exactly why it happens to me.

I can understand why a med like that would take awhile to get adjusted to, being hormones and all. I hope it does help with your fatigue. It would be nice to not have to juggle, right?
2nd-Sep-2007 09:37 am (UTC)
I found out last night that Thyroid problems can cause swelling, let me just find the link.... http://thyroid.about.com/cs/basics_starthere/a/couldyou_2.htm
They have a list of the symptoms and it's shocking how many I have!

It would def be nice not to have to juggle! Would be so much better for work too-suprisingly my Head of Department also has Thyroid issues.... although now he only has part of his left!
2nd-Sep-2007 09:49 am (UTC)
Wow, that link is helpful. That reads like a checklist of what I experience! I may print it out and show it to the docs.

Eek, thyroid surgery. That's a big reason why I want to get this checked out if I do indeed have it. I don't want it to get worse untreated.
2nd-Sep-2007 10:09 am (UTC)
It's good isn't it? And the list at the bottom is helpful too, esp seeing as though it basically says that if you have Fibro you have more chance of having Thyroid issues too... bloody hormones eh? My sis is Type 1 diabetic so we obviously have a lot of hormonal issues in our family!
2nd-Sep-2007 10:07 pm (UTC)
Yeah, there's diabetes and lupus in my family, so I'm hyper-aware of the genetic causes for some of my health issues.
2nd-Sep-2007 10:55 pm (UTC)
I have hand and ankle/foot swelling, as well. Not everyday and not all the time, and not always with the same action before hand (it happens whether I eat salt or don't, whether I drink alchohol or not, whether I eat a lot of a little -- it is never the same preceding actions to an episode of swelling).
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2nd-Sep-2007 09:37 am (UTC)
I'm sorry you deal with both heat and cold intolerance. I do feel grateful that I have at least a small window of comfort, but where I live, it doesn't last long. Once spring hits, everyone turns on the A/C, so it's always cold to me.

Thanks for all your help here and above. I really appreciate it. :)
2nd-Sep-2007 09:23 am (UTC)
I am being treated for thyroid and am in the same boat as you, in fact my baseline temperature is actually 95.4, if I'm 98.6 I'm running a high fever. I've been diagnosed with reynauds as a child, i wound up in a hypothermic coma on the school bus stop one winter, the had to take me to the ER (I forget how low my temperature had dropped) and it took them two days to get me out of it. I frostbit my ears, feet and hands, despite and insane number of layers of clothes I wore. Layering does not help, hell, I used to use my locker AND a friends locker when I got to school to hold all my coats, jogging jackets, sweaters, etc that I wore.
2nd-Sep-2007 09:42 am (UTC)
I have a low baseline temp too - 97.0, usually. Layering doesn't help me either. I try and explain to people who suggest it that I'm cold at my core and no amount of blankets, jackets, etc. get down deep to that mind numbing cold I feel. Plus, layers hurt my fibro'd body. I wear them anyway, but usually have to take pain meds or wear pain patches for the increased pain from the weight. And to all those who say they wish they had my problem, I tell them, "Take it, please!"
2nd-Sep-2007 08:17 pm (UTC)
I have that exact baseline temperature. I also have Raynaud's. People still don't seem to get it when I say that I'm freezing even when I am under layers (which I hate) or blankets on top of blankets. And with the Raynaud's, I can't be outside in the dead of winter for more than ten, maybe twenty minutes at a time, before I can't feel my hands or feet, which I also can't move. Cold weather also causes the muscles affected by my cerebral palsy to clench and tighten and tense up and spasm badly. I'm also more prone to epileptic seizures, asthma attacks, and sciatica flare-ups in winter.
2nd-Sep-2007 10:11 pm (UTC)
I can stay outside in the cold 5-10 mins tops before everything pretty much locks up and spasms on me. Then it takes me several hours to warm up, if I ever do. Like you, I get the domino effect on all my health issues because of the cold and winter. I wish there was something more we could do than just "deal" with it. Quite honestly, I don't deal with it very well because it limits my life so much more.
2nd-Sep-2007 10:06 am (UTC)
I have difficulty with extreme temperatures. I'm constantly chilly once the mercury goes below 55, and I wear those stick-on heating pads under my clcothes. On th other end, if there is a heatwave (like we're having in my region right now), I can't cool down no matter how much water I drink or how cool the room is. The moment I venture outside into the heat, my day is done, so I pretty much stay inside until evening.

What's strange is that I figure skate (got into it to help combat fibro), and I'm fine on the ice. I'd even go so far as to say that my body is happiest temperaturewise when I'm skating. This may be due to the physical activity keeping my body warm while I'm in a cool environment (my rink is not frigid, although some are). On really hot days, though, even being in the rink wearing just a t-shirt can't cool me down. That's tough.

I hate summer heat. I can't wait until this heatwave is over.
2nd-Sep-2007 10:20 pm (UTC)
I've heard a lot more people with fibro are affected by extreme temps than just one or the other, which is why I'm hoping mine is a symptom of something other than fibro so it can be properly treated.

Hopefully I can keep the summer heat for you. Then we'll both be winners.
2nd-Sep-2007 03:22 pm (UTC)
Unfortunately, I'm the exact opposite. I have no tolerance for heat. I'm terribly hot and sweaty year round. Keep A/C as cold as anyone else in the house will tolerate. Set heat low in the winter. Rarely ever wear an actual coat - just a jacket.
Suffer miserably b/c of the heat.

Honestly? I'm stunned that your doctors don't look for other reasons for your cold intolerence. I know of several metabolic disorders that cause thermoregulation disorders in animals. Unfortunately, I do animals and not humans. But, I imagine that it is very similar. So far, what I've seen - most diseases regardless of genus are similar.

I'd consult with another doctor.
2nd-Sep-2007 10:23 pm (UTC)
I live with someone who is heat intolerant. It's a difficult living situation for both of us, to say the least.

I haven't had the best medical support for treatment (aka "deal with it"). After I get some things resolved with my medical insurance, I plan on changing things.
2nd-Sep-2007 07:56 pm (UTC)
Hmm, interesting.

I've found that I can't really warm up my hands or feet anymore. My hands only get warm when tucked into my jacket all day, and only if I'm lucky...

When the joint pain gets worse, my hands do not warm up at all, nor do my feet (I sleep with socks on in those times and still have icecubes).

I just thought I was 'just' cold, but apparently it's a symptom of fibro too... Ack.

Does anyone have a site/link of a page where ALL the symptoms of fibro are listed? Would be greatly appreciated!
2nd-Sep-2007 10:29 pm (UTC)
>Raynaud's is something that I know a lot of people with fibro seem to deal with. I know I didn't have cold intolerance until I developed fibro. But I haven't heard of it becoming worse like it is with me. That's usually a sign of something else going on.

I have yet to come across a comprehensive list of all fibro symptoms. Maybe because the illness varies from person to person.
3rd-Sep-2007 05:40 am (UTC)
Hmm, I'm the exact opposite. Maybe that sounds crazy but I never seem to fit the norm. I'm always hot! I've always got to have the A/C on & a fan blowing. I can't wait for the fall & winter as the cold doesn't have as much of an effect on me (though I am sensitive to both extremes), whereas the summer heat & high humidity of spring is nearly intolerable for me! I can't eat real hot & spicy foods either otherwise it just raises the level of heat in my body. Frequently, my ears/nose/face/hands/feet will flush and turn bright red and I literally feel like I'm on fire! Which leads to me feeling like crap! Very nauseated, fatigued and almost faint as if I were suffering from heat stroke. I can't be outside for too long, only a few minutes or my skin & eyes feel like they're burning! I'm thirsty a lot, always carrying a water bottle and sweat easily & often, having night sweats. I wear cotton pj pants & a tank and go barefoot regularly and find it difficult to wear long sleeves & socks/shoes even in the winter! *sigh* Don't know what else to tell ya, just that I understand your frustration. My family gets upset at me when I try to turn the temperature down in the house because they're usually cold while I'm burning up! =\
3rd-Sep-2007 06:10 am (UTC)
I know a lot more people who cannot tolerate heat like you than people who are cold intolerant. So you're definitely not alone.
4th-Sep-2007 12:07 am (UTC)
Really? I was told the cold intolerance is more common with Fibro (like 1/3 of all sufferers experience it) or with Hypothyroidism and I get strange looks from doctors when I say I'm the complete opposite. I'd say if you don't think it's just the Fibro, get your thyroid checked, though I've heard thyroid tests aren't always reliable. Just because the results come back negative doesn't mean you don't have thyroid problems.
4th-Sep-2007 12:16 am (UTC)
I have the same problem! I'll have my window AC on in the winter with my other window wide open and a fan blowing. It drives everyone in my house crazy!
3rd-Sep-2007 11:48 pm (UTC)
I have a kind of weird love/hate relationship with temperature. I do better with hot than cold, as long as I'm drinking Gatorade (I think I might support that company all by myself...) and wearing sunscreen (I am EXTRA white, and come in spots or tomato-red). Cold is the weird part. I can deal with cold IF I have a while to adjust. If you throw me from one temp range into another, it takes me a bit. I found out just this week that going from Atlanta summer to LA summer is enough to make me cold in LA. I've hit the first stage of frostbite (the one that doesn't do any damage, just hurts like hell when you thaw) several times in my feet and hands.

I've found, however, that clothing is a HUGE thing. Don't do cotton when you're cold. I went through some training because I was an alternate for a 4 month mission to the Arctic, so I got a lot of cold weather training, and cotton is terrible for keeping warm. It's all about the wool and polar-tec. If I wear wool socks, my feet are happy (I often wear them to bed, even if it's warm outside). I recently bought gloves that actually FIT and I got a wool coat for Christmas, so I'm hoping that this winter, I'll actually be warm.
4th-Sep-2007 12:17 am (UTC)
I know what you mean with the Gatorade. I use to drink it all the time before I discovered Hydralyte which I feel actually works better for me. Has all the electrolytes and less sugar. You have to try this stuff, it's amazing! ;)
4th-Sep-2007 08:41 am (UTC)
Thanks for the no cotton tip. That explains why my feet never warm up. I need to get some good wool socks for the winter.
4th-Sep-2007 12:15 am (UTC)
I seem to have the exact opposite, I cannot tolerate heat. I need to keep my bedroom at 66 degrees or have the window open in winter. I was told heat intolerance as opposed to cold can be a symptom of MS but luckily (perhaps?) I definitely do not have MS (just a duel diagnoses of CFIDS/FM)
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