low body temperature

Hi,
I have ACM type 1 with syringomyelia and just wanted to know if my 'normally' low body temperature is related to my condition. I know that this low body temp has been ongoing for many years (10+ years).
My temperature rarely goes above 36C. It can and does go as low as 34.5. Most of the time I feel normal, but I find that I get very cold very quickly even in very hot outside temperatures. I also often have very cold hands even if my body feels warm. My fingers will also change colour to become waxy and pale looking.
A NS showed me the damage on my mri from my syrinx and said this had something to do with my body temperature, but that was about all he said - he was pretty rubbish to be honest and I dont think he was a ACM specialist.
I do have a whole range of other symptoms related to my condition, but wondered if I should see my doc about the body temp thing? If yes, what do I say?
Thanks
Lisa

[selmaS]

Hi Lisa....I also have low body temps as well as low BP...I was told I had Raynauds, but later found it is Raynauds effect??...something like that...but it is from a related condition to chiari called Ehlers-Danlos Syndrome.

Plus I also have Hashimoto's which can cause issues with colder weather....

DO look into EDS as a possibility as well as Hashimoto's thyroiditis.

"selma"

[n40066]

hi lisa!
this could very well be related to nerve damage caused by your syrinx.  but it could also be caused by raynauds disease.  there is a lot of info on the web on this....google it and see if it sounds like a fit for you.  it may be that you have developed raynauds because of the nerve damage?  you really should be seen by a cm specailist so you can get the best treatment available to you!  and yes, you should def. tell him about ALL of your symptoms!  good luck and keep us posted!
elizabeth

[summertump]

Hey Lisa!

I just had a Posterior Fossa Decompression and a C1 Laminectomy due to my Chiari herniating 7mm. I also have the low body temp thing but I also have Raynaud's. Look it up. My hands and feet turn blue when I am cold and blood red when I get warm. During the time I was in the hospital for my surgery, my temp stayed around 98.1. I also see a rheumatologist for the Raynaud's.

Good Luck!

[selmaS]

Hi Lisa....I also have low body temps as well as low BP...I was told I had Raynauds, but later found it is Raynauds effect??...something like that...but it is from a related condition to chiari called Ehlers-Danlos Syndrome.

Plus I also have Hashimoto's which can cause issues with colder weather....

DO look into EDS as a possibility as well as Hashimoto's thyroiditis.

"selma"

[LisaRiu]

Hi Elizabeth,

Thanks for the info. I had considered raynauds some years ago, but didn't really get all of the symptoms related to it. My nan does have raynauds though, so it could be a possibility. My hands don't tend to go blue, but they go very white & waxy looking and they do feel awful when they get hot. Sometimes i prefer the cold hands because it's more comfortable than having hot hands. (my husband might disagree tho. lol).
I have also looked into other suggestions by Selma and Summertump too. I will keep looking and mention it to my doc when i see her next.

Thanks everyone for your prompt responses
Lisa

[*Stormy*]

I have what you describe too, I was told that it may be Raynaud's but I think that it is another effect of Chiari. I don't have a syrinx but still had many issues affecting my legs. I have had the surgery and still deal with cold hands and feet, and like someone else said, when they do actually get warm the are bright red and throb. I think sometimes it may also be caused by poor circulation. Also, I find if my hands are cold and I am trying to do something (like type) I find my coordination is very bad or if I am driving and my hands are cold, they don't want to uncurl when I take them off the wheel.
The best prevention I have found is to try to keep them from getting too cold, that means gloves and slippers!
Carolyn

[blondeballerina07]

Hi Lisa,

I have had surgery and actually asked this question post op. Before surgery my body tempe was always 4-5 degree lower than normal. After surgery my body temperature flies all over the place from 5 below to 3 above. This is the information i was given, the spinal cord partly functions in maintaining body temperature, when there is damage to the spinal cord body temperature can vary along with the regulation of body temperature. For me I had severe decompression of my cervical spine and a bent spinal cord. My surgeon feels strongly that this has caused my body temperature disregulations, and because the damage is done he feels it will not change. Hope this helps.

[LisaRiu]

Hi Blondballerina07,

I have researched how the spinal cord plays a part in body temp and understand it a bit better now. I think my problem is related to that damage and as you say it will probably be permanent. I also have trouble when I'm driving too. If I'm driving and my hands are cold, I feel like I've lost my hands (especially if driving at night).
I've had 4 surgeries (not related to Chiari) and I am always freezing cold beforehand - in fact so cold that they struggle to get the venflon in my veins. When the surgeries were finished, they always struggle to get me warm again. Its just something I'll have to learn to live with. Like you and some others have said, prevention is best - keep the hands & feet from getting cold in the first place.
I was referred to a NS but he said no surgery so I'm being looked after by a NL. I don't even know what the mm decent is, because the NS didn't think it was an important piece of info. Unfortunately, I dont think he was a ACM specialist because he didn't even know where the line was to measure from. Anyway, I'll keep plodding on.
Thanks for the info.

[blondeballerina07]

Well he at least has one part the size of the herniation is not always very important, and it doesn't determine if there will be symptoms or not, but if he did not know where the line was to measure from he needs to go back to medical school!

[jpurple]

I also have low body temperature, usually 97.  It's important to remember that if your normal body temperature is low, you may not show as having a fever to a medical professional.  Make sure they (doctors/nurses) know your temp is normally low, because a reading of 98.6 is actually a low grade temp for you.  This would drive me nuts, i know i have a fever because you can tell the way you feel and chills etc, but go to md and my temp is 98.8 and they say you don't really have a temp.  Actually yes I do!!  omg

[LisaRiu]

Hi,
I know what you're saying about having a low 'normal' body temp and that a fever for me will probably be a 'normal' temp. I have tried to explain this in the past but not been believed. If I do have a normal temp, like you say, it drives me mad too. If my hands and feet are hot, that also drives me mad.
I have had surgeries not related to cm and been FREEZING when I've come around. It always takes ages to warm back up after each surgery. I always explain that I am sensitive to the cold, but it usually falls on deaf ears. Frustrating when people dont listen, or even worse, when they 'think' they know you better than you know yourself.
My temp rarely goes above 36C (96.8F), and most commonly is around 35C (95F) but is lower than that in the mornings. I must be cold blooded. lol. Never mind eh, Just got to keep plodding on.

[ploink]

I noticed sometimes I was getting cold because my hands got so stiff I could not type anymore. When I got up my whole body was stiff and cold to the core.
After exercise I often feel so hot like I am melting and I cannot stand the heat very well, but my temp is below 37 then.
When I was in hospital in March, they measured 35.5C before surgery and said that was quite low. I got a tracheotomy then to help me sleep. I have been sleeping better since and it seems my temp does not get that low very often anymore.
It is normal that your body temp is lower at night when you sleep. When this happens during the day, I think it is a sign of fatigue or sleep deprivation. Your body just wants to go in hibernation mode I guess.

[selmaS]

Well no matter how much sleep I do get I always am fatigued and feel sleep deprived.....so I guess that could be a part of it.

: )

"selma"

[Stephiec79]

I am totally the same way. 97.6 on the money. I do not like to be cold. my fingers & toes are cold all the time, even if the rest of my body is warm. I've also had issues with waking up from anesthesia and be FREEZING!!! That was the worst part!!!

[selmaS]

Same here...I also feel like I am lying in ice after waking from anesthesia......brrrrr

And being hold, my hands and feet hurt.

[LisaRiu]

Thanks everyone, now I know I am not alone in being 'cold'. I dont think it's raynauds but I will definately let my doc know the next time I see her.