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Old 08-17-2014, 10:40 AM #1
Idiopathic PN Idiopathic PN is offline
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Default Just an update.....

Hi Everyone, its been a long while since I posted because of my long treatment for my lung infection. I have Mycobacterium Avium and Bronchiectasis. Due to this chronic infection, my lung function has gone down. Shortness of breath has been, sort of, become the "normal" thing. I finished my treatment and the great news is my last culture is negative! But, as the nature of this condition, the incidence of reinfection is very high. So, as I continue to deal with the day to day challenges of protecting myself from another infection, which is a toll order, I live one day at a time.

As to my neuropathic pain, I still continue to take the usual Gabapentin and the compounded pain cream. It helps me with the burning, electric zaps, pins and needles.....but it does not help with the deep pain in both feet. This relief from the unpleasant sensations MAYBE from the cream OR from the weather but I think its more on the weather. Please hear me out....right now I am in a tropical country with hot and humid weather. Every time i am in an airconditioned room, the unpleasant sensations bother me a lot but once I am out in the sun with my shorts, i feel fine. Its been consistent that when I go out in the sun, wear shorts, and no aircon, I am OK. I am not sure if i am making sense but that is the way I feel. While this weather makes my pain VERY tolerable, it makes my breathing more difficult. 😢. Anyone has the same experience as mine? Does warm weather make the pain less?
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Old 08-17-2014, 01:31 PM #2
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Originally Posted by Idiopathic PN View Post
Does warm weather make the pain less?
No, but cold weather sure makes it worse...

Glad you got the infection under control. I know how it reeks when what makes one pain better makes another pain worse. You feel danged if you do and danged if you don't.

Hang in there & do what ya gotta do.

Doc
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Old 08-17-2014, 07:10 PM #3
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Quote:
Does warm weather make the pain less?
I think it has more to do with the humidity. I just came back from a tropical country with warm and very humid weather. While there, my feet "plumped up" (not sure if this is the correct term but I hope you get what I mean) and I virtually felt no symptoms. Now, back at home, where the summer weather is hot but a lot less humid, my feet have "shrunk" and are back to looking dry, papery, and wrinkly. Neuropathic symptoms have come back too .
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Old 08-17-2014, 09:22 PM #4
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I know I feel a lot better in the warm weather. I still have pain though. When the winter comes my symptoms are brutal.
Unfortunately, my in PA and we haven't had a very warm summer.
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Old 08-17-2014, 10:03 PM #5
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I too feel better in warm weather and humidity is a big plus.

...and like Doc said, cold makes it worse.
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Old 08-17-2014, 11:17 PM #6
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Thanks for the update!

I too think cold makes it worse.
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Old 08-18-2014, 06:46 PM #7
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Quote:
Originally Posted by Idiopathic PN View Post
As to my neuropathic pain, I still continue to take the usual Gabapentin and the compounded pain cream. It helps me with the burning, electric zaps, pins and needles... but it does not help with the deep pain in both feet. This relief from the unpleasant sensations MAYBE from the cream OR from the weather but I think its more on the weather. Please hear me out... right now I am in a tropical country with hot and humid weather. Every time i am in an airconditioned room, the unpleasant sensations bother me a lot but once I am out in the sun with my shorts, i feel fine. Its been consistent that when I go out in the sun, wear shorts, and no aircon, I am OK. I am not sure if i am making sense but that is the way I feel. While this weather makes my pain VERY tolerable, it makes my breathing more difficult. 😢. Anyone has the same experience as mine? Does warm weather make the pain less?
Curious, is the "deep pain in your feet" constant or is it brought on by pressure?

BTW, my IPN is MUCH more tolerable when the temperature in/out is above 75 degrees...
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Old 08-18-2014, 10:51 PM #8
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Quote:
Originally Posted by Idiopathic PN View Post
Every time i am in an airconditioned room, the unpleasant sensations bother me a lot but once I am out in the sun with my shorts, i feel fine. Anyone has the same experience as mine? Does warm weather make the pain less?
I experience EXACTLY the same thing except I gave up wearing shorts because of allodynia (the wind hurts my skin). The AC at work or home bothers me a great deal and when I go outside and feel the heat from the warm Hawaii sun -- it is like a magical relief, it feels so-oo good.

Thanks for the update!
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Old 08-20-2014, 08:17 PM #9
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Originally Posted by Joe Duffer View Post
Curious, is the "deep pain in your feet" constant or is it brought on by pressure?

BTW, my IPN is MUCH more tolerable when the temperature in/out is above 75 degrees...
The pain is not constant and is not caused by pressure. Even when I am just sitting down or resting my feet, i could feel the gnawing (not sure if gnawing is a right term) deep pain. It seems beneath my muscles but when you press the spot to check if it it hurts, nothing hurts to pressure! Its hard to describe but it is painful.Do you also a similar pain?
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Old 08-20-2014, 08:28 PM #10
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Originally Posted by amike View Post
I experience EXACTLY the same thing except I gave up wearing shorts because of allodynia (the wind hurts my skin). The AC at work or home bothers me a great deal and when I go outside and feel the heat from the warm Hawaii sun -- it is like a magical relief, it feels so-oo good.

Thanks for the update!
The shorts, not the bermuda type, give me relief because of its minimal material touching my skin. The pants or anything that touch my whole legs is torture. i tried to slowly introduce my skin to more materials like wearing bermuda shorts because i will be back to the states just in time for the cold weather, darn, I really cried. It was so painful!!! ..I thought i need to force my skin to get use to it again, but I guess, it will never be. Just the thought of wearing pants or the very though of the cool weather makes me anxious.
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