Hey everyone - doing really bad today so its gonna be abit of a sloppy post probably. I tried to clean up after the x-mas influx - ughh!

When my pain reaches 5ish my arms begin to get very, very cold. My neuro has explained that it is a pn reaction to pain and is a reduciton in the circulation. He did not explain why my arms do this. He is very smart and well known in his feild and loves to hear my sympptoms. Because my condition is so umcommen to last so long(ganglioneuritis) he gets really excited when I describe my symptoms and we tend to focus on what my symptoms are, but not much how many different ways to help (he really focuses on meds - he invents cancer meds).

What I would like to know is what other pner's go through - do you experience this? What do you do for it? Is ther eanything topical, internal, ANYTHING i have missed.

I do use a moist heating pad and it does help, but only a little and only so long as my arms are kept under hte heat. That is the only thing I have found that helps. Even the pain meds don't help this phenomena. My hands are ALWAYS cold t othe touch, and ICEY if my pain is over a 5 (about 30% of the time this time of the year).

Thaks i would love to hear what is out there - I tried a search but I couldn't think of the correct words to use so it didn'y come out very well - to many meds I guess right now - .

The only things that work for me are walking or a nap. For some reason it has a vasodilatory effect, opening up the circulation to the ends of my fingers and toes. It happens very quickly and works almost every time. The challenge is sometimes my feet/hands are so cold I can't get to sleep.

I've also noticed a few times in the past when I'm about to fall asleep and there's a transition to the autonomic nervous system, my sense of temperature can drop a lot very quickly.

Dr. Majid Ali, a chronic fatigue expert, says he teaches his patients with cold hands/feet a trick which opens their arteries. In a very short time it raises the temperature, he says, from 80 to 90F. He calls it "autoreg." I'm trying to find out his technique so I can warm up while I'm still awake. It sounds quite clever because it requires no meds.

I'm trying to boost my mitochondria to generate more heat. (I took my temp today and it was only 96.1F.) Ali says a drop of less than that from 98.6 is serious:

"Even a small drop in body temperature, such as three-quarters to one degree, can significantly impair enzyme efficiency, sometimes causing as much as a 50% drop."

P.S. Dr. Ali seems to expound on his temp control/autoreg methods here:

http://www.majidali.com/ghoraa.htm

Yes and it is worse in cold weather and why I moved to warmer climate.
Baths help,keeping the limb moving which is hard when in pain and frozen. Also doing my best and this is also hard to not be in certain climates. High winds,extreme cold,high humidity sends my pain high. It seems what ever the temp is my body processes it more. I did not used to have heat issues and now have that too with burning. In cold I freeze.
As for meds I feel overall when my pain is lower I am less sensitive so the other symptoms like temps or if I knock myself for ex are not as bad. So maybe if you can find a med that controls your pain or treatment that will help the whole combo.

I think magnesium helps alot with blood vessel dilation and
will improve circulation. You can use it as a lotion, right on your arms too. Epsom-It is one, and CVS may still have some of their Epsom lotion left in your area (they are discontinuing it for some insane reason).

http://www.myfootshop.com/detail.asp?productid=899
Works on feet too. This link is the best price I've seen.

Another thing to try is l-arginine. This amino acid dilates also.
It has to be used carefully if you have any shingles history however, as it can stimulate shingles.

http://www.youtube.com/watch?v=NBPjZJSHr4A

http://healthiswealth.net/

Thank you Nuero - I am definetly going to look into that website. I do notice that when I am able to mediate (which isn't often - i think my meds really impair my ability to focus and mediate) or right before I fall asleep I can feel a change in my arms as well. Thank you so much for bringing me this website and information.

daniella, how long did you have pn before you had to move from where you were? I live in sunny CA and thanks goodness the cold weatheris only 3-4 months long. But with this condition my arms are icey all year long. It is rediculous when it is 95' outside and I have a heating pad on. Unfortunalty movement exacerbates the pain in my arms so I cant move them to warm them up. Once my pain levels reach 7 or so the rest of my body my body begins to react as well so i have found that remaining still is the best med so far. That wont help with the circulation though. I have tried baths but in the winter our tub in inadequate for soaking - gosh this all sounds like whining! i'm just frustrated these past fewe days when it feels like i cant get anything done even if I feel "okay". It sounds like you also have problems with heat as well - so I have alot of sympathy for you.

Thank you mrsD - I will look at the supplements and try them one by for certain - thank you!

Actually mrsD, before I go to the store, what oral form (are there alternatives?), brand and amount of magnesium should I begin with?

Hey neighbor I am in Ca too. Well I have been back and forth around from MI my home state,FL which made me swell 2 full sizes,and CA. Overall and let me tell you I am in a lot of pain but CA is the best in terms of weather. I moved from MI after my 1st winter. Then the following year I tried winter again and by Dec was in FL. I can't tolerate boots or at that time socks so that was part of the issue as well. I have RSD as well.
I take magnesium which I do find my best supplement but who knows. I would suggest that. I am also trying to keep with my omegas and have read a lot about that so would suggest that unless you have a medical issue.
Hang in there and I wish I could offer more. I do feel in general treatments that help the overall conditions will help things like this. I remember when I went to the pain doctor because I have super tight calves and he said the treatment for the condition should help that as well. Who knows but trying to hold to hope.

Try using the standard safe drugs for neuropathy: Lyrica or Neurontin Just ask your MD

Thanks!
mrsD I have been taking the Slowmag and have found definite positive results! I started with just one slow mag dailty and have been taking it in the morning for three weeks now and have found that my arms and hands do not get no where near as cold as they had been. It is amazing this is the best result I have ever gotten from a supplement. I have been in agony with flare-ups lately but not with the feeling of icey-ness. Thank you so much. I will really have to look into more of the other supplements you have recommended for me when we finally balance our budget - thanks again!

This is a good start, then!

I'd increase to two a day, one in the morning and one at night.

Think about getting a magnesium lotion or cream. Rubbing it in may help too.