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Neuropathy, anyone?
#266033 - 09/02/12 11:58 AM
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Hi,
I wish everyone well and say thanks to those taking the time to read my inquiry.
I was wondering if any of you are dealing with or have been diagnosed with neuropathy? If so, would you mind sharing what your symptoms are or have been, and if there are any tricks to dealing with it?
I ask because my doctor thinks I am beginning to show signs of HIV-related neuropathy, but she is not sure, because it seems that it's not the easiest thing to concretely diagnose. Since having a cold a few weeks ago, I sometimes wake up at night with tingling in my arms, hands, and shoulders. A couple of these times it has been so bad that I cannot seem to move my hands, and I have to make myself roll over and sit up for a while. After a while sensation and movement returns and the severe tingling subsides. It seems to happen less if I sleep flat on my back. I have also noticed that in the daytime, I get strange sensations of hot and cold on the surface of my legs and arms, and my hands and/or feet sometimes feel kind of itchy. I get up and move around, and things then feel better, but it just feels like something is not right.
About 10+ years ago, I had a repetitive stress injury related to my shoulders, neck, and arms, but I haven't had symptoms in years, since I changed my line of work.
My doc is not 100% sure about this (but definitely suspects it), so I am wanting to hear any of your experiences. As I say, this seemed to start a few weeks ago when I had a pretty bad chest cold, which coincided with the beginning of what has been a blistering heatwave (even by Thailand standards). The cold went away after about a week, without incident and without medications or complications, but now this seems to have picked up. Many of my friends who are negative are complaining about not feeling well from the high heat, so I'm wondering if it could just be that? As you can see, I'm confused about this, and can't find any concrete answers. Any information or insight any of you may have would be much appreciated. I have noticed that cool showers seem to stave off the symptoms for a while, but then the odd sensations come back after a couple hours. Is it just the heat? I'm on the Atripla cocktail - could it just be that mixed with the heat?
Thanks!
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alive2
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Guardian
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Reged: 03/08/07
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Posts: 336
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i have it, and it goes from tingling to throbbing and is often very painfull. i have been dealing with it for about 5 years now. it affects both hands and both feet. some days it doesnt both as much but then there are days it is like i want to cut off my limbs.
i take gabapentin, and celebrex for arthritis and they seem to help lesson the pain.
i like using hot water and soak for hours in the tub, cold water agrivates it.
staying ahead of it and making an effort to keep down the pain does take work and alot of effort. good luck.
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Thanks for the info. It's interesting that cold water aggravates it for you, while for me it seems to shut it down for a while. I'm starting to get the feeling that it's something that has different patterns for different people....
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AIDS2HIV
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Legend
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Reged: 12/19/05
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Posts: 2161
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ask your dr to consider putting you on neurontin... it works in relieving,reducing, and eliminating neuropathy... i had it, its not a part time, come & go type thing, it will definately make it unbearable for you to even tough the outter extremities...
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Hey! Thanks for the tip, I will ask her about that.
I wanted to give a little update about the neuropathy situation: when I went in to our doc last week to pick up our next installment of ARV (a crate, practically!), she pulled me aside and said that she had been doing some asking around and wanted me to go on even a bigger dose of vitamin B supplements - she DOUBLED the dose! over last weekend, I noticed that I was feeling better and not so sensitive to my clothing and fans in the room. Now, by the end of this week, I'm feeling almost normal again. I suppose it could be just the power of suggestion, but it doesn't feel that simple. Anyone else have this experience? I have seen it mentioned in a few threads at other sites, but I figured since I was already on a vitamin B supplement that it wouldn't solve it.
If it picks up again, then I guess I'll ask for the neurontin.
Thanks again!
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The extra B vitamins seem to be doing the trick! I'm feeling great again, thankfully! I hope this can help others out there too.
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