[adelina]

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 - .

[NeuroLogic]

Originally Posted by adelina

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.

Every week, I spend about three hours in my autoregulation laboratory teaching my patients how to flush their cold hands and feet with warm blood by allowing their arteries to open up by shutting out the thinking mind. I do not recall a single laboratory session in which one or more patients did not see their skin temperature shoot up from below 80 degrees to 90 degrees or over. Clearly, this is an autonomic function. (The term autoregulation actually derives from my early work in this area, when I used to call it autonomic regulation. My patients shortened it to autoregulation, then to autoreg.) Equally clearly, such a rise in skin temperature cannot be attributed to thyroid manipulation because no thyroid hormone is used in such work. Furthermore, temperature regulation through thyroid hormone therapy takes several days or weeks, whereas I observe changes in the skin temperature in minutes.

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

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

[daniella]

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.

[mrsD]

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/

[adelina]

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!

[adelina]

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

[daniella]

Originally Posted by adelina

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!

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.

[mrsD]

Do not get magnesium OXIDE, it is not absorbed and is a laxative.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Start at 1/2 the RDA which is about 200mg, elemental.

Any chelate is okay
gluoconate
citrate (may be laxative too)
lactate
malate
taurate
carbonate

or chloride which is called SlowMag, or Mag64-- two of these a
day is a typical dose of this type.

Magnesium OXIDE is in many things, so read your labels carefully. Do not get any with "mixture" of magnesiums in it.
OXIDE is the primary ingredient in the mixtures too.

If you use gabapentin or Lyrica you cannot take the magnesium at the same time as either of those. You have to space them out.

[NeuroLogic]

What do you know about sustained-release alpha lipoic acid for cold hands and feet? (Or the upgraded r-alpha lipoic acid?) I've read it's an effective vasodilator and recommended for those with diabetic neuropathy. So it should work for everyone else, too, right? And since it's such a powerhouse for the mitochondria, that would also help increase core/extremity temperatures?

[mrsD]

I guess R-lipoic is worth a try. It is so good for everything PN it might help too.

I have been less cold this winter than last, and I am using the new stabilized form (I guess the other type of R-lipoic as not working well for me). But I also use, benfotiamine and 300mg of theanine now too.

One of my blood pressure drugs (diltiazem) also dilates so that muddies the ability to attribute effect for me.

Having nerve damage only in the arms suggests some TOS issue or cervical damage IMO. Whatever is causing that needs to be addressed.