Freezing to death
 

Anybody got any suggestions or idea. I am freezing. The temperature here is 85 degrees today. I've been wearing winter pj's and a warm robe. My hands and feet won't warm up at all. This has been going on for awhile. I kept thinking it would go away. Well it isn't. Sometimes I have rigors (chills) and I shiver. I actually went outside in the back and sat on the edge of the deck in the sun. I wanted to lay down in the sun, but there wasn't any way I could get down that low and get up. But I stayed about 15 min. Tomorrow I have to drag myself down to the swimming pool. It gets harder and harder. It's the pain. I love the water and I've made several friends. But the water is pretty cold too and I have chills the entire time I'm in the pool. That makes my muscles so tight and they already feel as if I'm wearing too tight panty hose.
Didn't mean to rant. Just wanted you to know that this freezing is really messing with my life!

Billye

I saw a cartoon a while back with a bunch of naked old people in hell, surrounded by flames. They were complaining about how cold it was.

Seriously, have you taken your temperature? If not, please do. You may be ill with some kind of infection and need to see a doctor.

Nope nothing
 

We've checked David. No Temperature. Blood pressure is a little low, but no big deal. Not sure what is going on. And I beg your pardon, I'm NOT OLD yet!!! I'm just well worn. We have a Texas saying. "Rode Hard and Put up Wet". That describes me better. Back to the problem. I'm anemic according to my last checkup. Not sure why yet. The doc is waiting two months and then is going to check it again. I changed Multi-vitamins to a liquid high potency to see if that helped. With my mouth being so sore and my compromised digestive system, I thought it couldn't hurt. I don't eat a lot because it hurts to eat.

Billye

((((((Billye)))))),

My legs are like that when I lay down. I use an electric blanket even when it's 95 degrees out. Mine is a circulation problem caused by the blood condition that's causing my neuropathy.

I'm wondering if you have some sort of a circulation problem.

Have you tried putting your hands in a sinkful of really warm water?? Does that make you feel more comfortable??

My son thinks I'm totally weird 'cause I go to bed in the summer with two fans, two air conditioners, and my electric blanket :p

Hope you find a solution. I know how uncomfortable it feels when you're so cold, it's painful. Hugs.

Barb

Billye, Barb - did you know?
 

that Sunbeam has an 'electric lap robe'? I've had it over a year and It's great in 'my chair'...keeps me toasty w/o all the bulk of a bigger e/b.
That and lite [very lite-to help circulation] massage when things feel like my extremeties should/are turning blue are the best help I've found so far.

As for the fans, a/c & e/b situation Barb, gee I've always thought that's been my NORMAL!

To feeling 'JUUST RITE" where you should feel just rite! - j

Hi SilverLady,
(I love your screen name. It's so evocative... silver screen, lady of the lake, shimmering movement... )

The cold thing is so bewildering.
I have to keep my feet under the covers even in the hottest weather.

Before I had all these problems I used to always have to keep my feet out from under the covers because that helped to cool me off. My feet used to always be boiling.

Do you take B12? I do and it doesn't seem to have helped with this. I do have a lot more feeling in my feet than I did, which I am pretty sure is from the B12, but the temperature thing hasn't improved... at least not so far.

I'm not sure what kind of pain you have, but my peripheral neuropathy pain decreased significantly when I was having a shot a day of B12, which is about equal to 6 to 8 or the 5 mg lozenges a day. (though when I go to just the lozenges I get twinges back.)

The other thing is serrapeptase. A friend of mine who is a certified family herbalist told me about it a couple months ago, and it seems to have helped the pain in my back. That pain hasn't gone away as much as the burning pain in my thigh from the peripheral neuropathy, but it isn't as bad as it was judging by how I can be up a little longer now...

http://www.health-boundaries-bite.com/Serrapeptase.html

I'm slow and I don't get everything at once.

I had huge mouth problems too. I don't know what yours are. Mine are so scary... but not to go into that here.

Two things: 1. Does your multi vitamin have methylcobalamin in it? that's the kind of b12 that works. If it doesn't and you aren't taking methylcobalamin, you may find that taking it helps. (I would guess that it would make a huge amount of difference -- it's good to keep notes so you can see the difference.)

2. Brown rice was easy for me to eat, with some protein, like Parmesan in the little shakers, and it does this totally amazing thing with my digestive system, totally sorting it out. Brown rice also has B vitamins in it, so it's good that way. I remember seeing it recommended for people with pernicious anemia... those are long ago articles, the ones about pernicious anemia, because today there are more diseases identified and it is less often discussed.

(((((((((Silverlady)))))))))))

is your temperature LOW? Thyroid deficiency can make it low, and it often happens iwth autoimmune disorders.

Dear Silverlady,
 

LizaJane could have hit the nail on the head. Here's a link to the hypothyroidism article put out by the Mayo Clinic: http://www.mayoclinic.com/health/hypothyroidism/DS00353 .

The cartoon I saw had old people in it, but my meaning was for people who feel cold when everybody around them feels comfortable or warm. No offense was meant, not that I think there's anything ofensive about being "old". Being "old" certainly beats being dead, or being as socially insecure and unhappy as many young people are. At 64 I'm getting there myself. I put "old" in quotes because I don't know that "old" is a good description. I remember being in kindergarten and thinking that there was no difference between the 6th graders and the teachers. Both groups were big people and both were old people.

A recent study found that people get happier and more content the older they are, even into the 90's as long as they are reaonably healthy. If not, it's the health that's an issue, not their age. You and I are both pretty sick right now. I think we'll both be very happy to get our health back and go back to our fun, satisfying, and often joyous lives.

When do you go to Mayo?

That's neat to know about increasing happiness. Thank you!

I hope you get your health back, too.

(((((((((Wing42))))))))))

Thyroid
 

Liza Jane,
My temp is 98.2. But I'm freezing. The last time my TSH was checked it was normal. I see some symptoms I can relate to but not many.
Billye

Hi SilverLady,
I forget what a normal temperature is...

Do you feel afraid at all? I get so cold when I'm afraid.

Also, is there any chance you have an infection of some kind? is your temperature a little high?

Maybe your body knows something that scares it a little.

I am always so much warmer when I am relaxed...

I think low grade infections are a huge drain.

(((((((((SilverLady))))))))))

chart
 

Yeah, I know I'm obsessed with charts, but could you chart your temperature maybe 4 times a day, for a few days? What you'd be looking for is two things:

Is the average much lower than what it is now?
Are there big swings?

The body feels cold when it's "central thermostat" is set higher than what the temperature actually is, and hot when the thermostat is higher than the reading. So, you get a chill before a fever, because the thermostat was raised, and you got cold before the body temp could be raised. Once the body temp and the thermostat are the same, you're not cold. Then, when the fever breaks, you sweat. Same thing, now the thermostat is set lower, back to normal, but you're still hot.

So, if you're cold, my guess is your thermostat is set high, and perhaps that will be evident if your temperature rises and you begin to feel okay.

Your body "wants" to be higher than 98.2. Perhaps it will be happier at 98.6.

This won't necessarily answer the question of why your body is not matching what its thermostat wants, but it might give you a sense of what is going on.

Good luck with this one. Wrap yourself up warmly.

LizaJane

Liza Jane?
 

Hi,

Jumping into the thread here - sorry - but quickie question.... My normal body temp is about 96.5, and after IVIG closer to "normal" - around 97.5 - you mentioned autoimmune causes low temp - but should I also askk for any specific thyroid tests? (seeing a doc next week who could order them...)

(this morning it was 101 - I KNOW thats not good but going down now)

:confused:

Hi kmeb,

Please can I ask you, do you take vitamin C at all?

I have found that it helps with infection type things.. When my eyes burn and I take it, the burning tends to go away.

I don't have a thermometer.

Consider This...
 

Hi -

I dont take any separate vitamins because my only nutrition due to gastroparesis (basically a paralyzed stomach due to autonomic neruopathy that has damaged the nerves the cause digestion)..... is Ensure, a nutritional liquid supplement only - and it is pure vitamins... My stomach gets very upset if I try to take separate supplements - but my docs also tell me blood counts are ok in that area and that since the Ensure is pure nutrition I'm getting all the vitamins I need... I am seeing a nutritionalist next though - and she may have some suggestions.....

(I need to gain weight but cant digest fat - or eat ice cream or anything like that - so thats a challenge we're trying to deal with)

KMEB

Oh, Kmeb, I am so sorry that I said that when it could have been hurtful to read.

I'm so sorry.

I'm glad you have such a good attitude. You have a brilliant attitude!!!!!!

Consider This
 

Dont worry ! I've actually called Ross, makers of Ensure, and asked them exactly the miligrams of vitamins in each can of Ensure - because they list them as percentage.... they did a lot of research for me - and got back to me with it - they were great... however, I do need to expand my diet - and I'd kill for a french fry!!!!!!!

:)

I agree w/KMEB about the temp & Liza about the Thyroid
 

6 mos after my 'onset' my toes turned into swollen mini-hot dogs & the feet? well, THEY swelled up at least 3 shoe sizes - I'd been up and down the thyroid dosage scale for over 5 years...until then. Thyroid tests resulted in a 20+ mcg dose increase. Stable since then. Now with my other things happening, my docs are screening my blood w/a very fine tooth comb -more often than is the norm. It's a small comfort, I think.

As for temp- I also have a normal thats a few decimal points below the considered 'norm'. It will chug up to almost norm during the 2nd hour of IVIG. I believe that's the only time my tootsies ever feel 'normal' now.

Somebody! KNOCK WOOD QUICKLY! I'd said the words 'feel normal'!

Good thoughts and warm foot inventions to all! [gotta find them first!] - j

I have considered, but not actually done it - putting bricks in the oven and using them [wrapped of course] as old fashioned foot warmers. Has anyone tried this?

((((((((((kmeb))))))))))

What is it about French Fries?

That's really nice to hear that Ensure was so helpful.

re:Too cold
 

I like to use the warming bags I make....fill a fleece bag with flax seed, then micro 3 minutes....or use a clean sock and tie the end.
Can use rice, barley, crushed corn (polenta)...works wonders for cold extremities.
PS...glad I found you guys....again....sure miss the old BLT!

consider this
 

french fries....

its been literally almost six years since i was able to eat solid food - so i dream about being able to eat - (literally - peope in my dreams tend to have normal heads - but sandwiches as bodies) - i miss eating - ever notice how many food commercials are on all the time!! and french fries just sound so good (and pizza, and sushi, and a big fat burger, and.......)

yum!:)

oh how sad!
 

why are you not able to eat solid food?
I have Crohns disease....so I can relate, but only a teeny tiny bit!
Sounds awful. Crytearszzzz aka crytears on the old BLT!

That sounds so neat, what a good idea!!!!!

crytearszzz
 

I have gastroparesis - assumed from from atuonomic neuropathy, so my stomach just doesnt digest food like it should - even liquids just sit in there for hours....

Crohns disease from what I understand is very painful - you have to be super careful about what you eat right?

Its amazing what we can get "used" to in order to survive eh?

Hang in there!
:) KMEB

Your dreams are ... wow, very ... wow, sandwiches as bodies...
boy what a hard thing to live without eating solid things. I have great respect for you!

Will it ever get better?

I was scared when I read your description because tetanus affects the stomach muscles, and it feels so uncomfortable. I started being afraid ...

Have to put a lid on being afraid.

So do you get B12 injections at all?

I was just thinking that the injections aren't like having to take a solid vitamin. OH... but then neither are the sublinguals.

(As far as I can tell, 6 of the 5 mg methylcobalamin sublinguals a day do not equal one B12 shot a day...)

((((((((kmeb)))))))))

Answer to Liza Jane,
 

No I don't mind charting my temp. Might be a good idea anyway. I'll set it up on Xcel. Easy to do. Then I think I'll make an appointment with an indocrinologist. It has bothered me long enough. My t3 &4 were off in the last test I had run. But when I saw the new rheumatologist, he thought they were fine because the TSH was fine. T3 &4 weren't but he told me it didn't make any difference because the TSH was fine. I decided not to argue at that point and I wasn't sure.

Anyway...
Billye

((((((((((Silverlady))))))))))))

I hope it goes well for you!!!!!

Thyroid...
 

Most important....see an endocrinologist to sort out thyroid problems. Most docs just cant handle it.
150 mg of Synthroid sure helps me.
When you mentioned being cold....Hashi Motos came to mind. ITs an auto immune thyroid disease....another malady I picked up along this ugly journey. My feet, hands, nose....ice cold....sweat pouring off my face as I'm sweating so profusley.....can't even wear make-up.....ugg! Change clothing often, must wear only cool cotton with no sleeves or collars. I hate this disease!
On top of this mess....diarrhea makes me miserable ALL the time. I do get some sleep....when I wake up and simply swallow, my gut starts doing it again and I'm off to the toilet.....trying to make my muscle weakness behave long enough to get my bunns on the white throne. Having a huge butt certainly helps!
Ya know....I've complained for eons about food sitting down there for hours. I did that pill camera and all it did was die in my stomach...didnt go anywhere or show anything...then stuck in my intestines...had to open me up a week later to retrieve it...thank God they did...found the cause of my severe anemia....5.1 hgb the lowest....2 years of transfusions....they found 3 feet of rotted intestines but not the source of my bleeding.....several feet up my intestines they found an AVM.....arterioveinous malformation...basically an intestinal anuerism the size of a baseball....bleeding away. Once the bad sections removed I was doing much better....but they failed to advise me on the B12.....so weak I could hardly swallow....a summer spent in bed thinking I was dying...I found BT and Rose advised me about sublingual B12. What a difference it made! But sadly....life has not been easy....especially lately.
No one knows whats wrong....I say its mostly tied to vitamin and mineral deficiencies but finding the right combo has been a real crap shoot.
What ever! Blessings, cheryl