Monday, March 25, 2013

Dealing With Neuropathy Caused by HIV-AIDS

My husband, Ken has been dealing with neuropathy in his feet for a few years now and when it first started it was just a little tingling, pin pricks of pain. Now though, even though he's taking medicine that's supposed to help with the pain, the pain has gotten worst and he is thinking about taking more drastic a nerve block.

What is Neuropathy?
Taken from..  - Medical News Today

"Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. The condition is generally referred to as peripheral neuropathy, and it is most commonly due to damage to nerve axons. Neuropathy usually causes pain and numbness in the hands and feet. It can result from traumatic injuries, infections, metabolic disorders, and exposure to toxins. One of the most common causes of neuropathy is diabetes.

Neuropathy can affect nerves that control muscle movement (motor nerves) and those that detect sensations such as coldness or pain (sensory nerves). In some cases - autonomic neuropathy - it can affect internal organs, such as the heart, blood vessels, bladder, or intestines.

Pain from peripheral neuropathy is often described as a tingling or burning sensation. There is no specific length of time that the pain exists, but symptoms often improve with time - especially if the neuropathy has an underlying condition that can be cured. The condition is often associated with poor nutrition, a number of diseases, and pressure or trauma, but many cases have no known reason (called idiopathic neuropathy).

 In the United States, about 20 million people suffer from neuropathy. Over half of diabetes patients also suffer from the condition."

Ken doesn't have diabetes, he wasn't in an accident that caused damage to his nerves and he wasn't exposed to toxins. What my husband does have is AIDS and his doctors informed him that because of the disease he has, he can get all sorts of different diseases and conditions like neuropathy. Ken found out he was HIV positive back in 1992, when our daughter was just a year old. Thankfully neither our daughter or myself were exposed and we are both HIV negative.

When the pains in his feet first started, the doctors told us that they could treat it with different medicines and so they tried Gabapentin first and he's still on that because it works a little bit. I looked around online and found something called Neuragen gel, so I bought some of that and while it works on some of the minor pain, the scent of this stuff is so bad that Ken hates using it. It gets on his socks, shoes and won't wash off easily and since it doesn't work really well, he only uses it when the pain gets really bad just to mute some of the really bad pain.

Ken's doctor didn't know what else to do because nothing has been working, so he sent him to pain management but they just want to throw pain pills at you..which is exactly what they did. The Lortab didn't do a thing to lessen the pain and he told them he didn't want anymore and asked if there was something else they could try. The doc said they could try a nerve block, where they give you a series of shots in your spine.


This sounds kinda risky to me. I haven't done my research online about it yet, but I'm wondering how much feeling he would have in his feet after a nerve block? Would he be able to walk? I still need to find these things out before he goes in and says yes to something like this. If they could just target the nerves that are causing the pain and shut those off and he still had feeling enough in his feet to be able to walk, that would be wonderful but I have no idea if they can do something like that.

While we are waiting to see what else they decide to try, I decided to try some massage oil on his feet because he said that sometimes if I rub his feet, it lessens the pain for a while. Now I don't know if you've ever had one of those sharp shooting, stabby type pains in one place where it feels like someone is taking a needle and poking you with it? Yeah, I have and Ken said that's the kind of pain he feels in his feet all the time. I know from experience that rubbing that pain does sometimes make it go away, so I figured massage oil and a foot rub might help.

I was right!

Although, the foot rubs don't make the pain go away for very long, Ken said that when I do it at night right before bed that the pain is so much less that he can actually fall asleep and is able to stay asleep for a while because the pain isn't keeping him awake.

He's still talking to the doctors about other alternatives but at least this is working to give him a little relief for a while.

Do you know anyone with neuropathy? If you do, what do they take for the pain?


  1. Not sure that is what I have but my nervous system is completely shot to hell, and I mean completely. Feet, hands, arms, legs, rump(SI joints) and straight across the middle of my back and into my ribs. Sucks big time, can't even work out as it will just flare things up. Stupid friggin gluten garbage did it to me. Getting jabbed with some stuff they use in germany at the moment, procane or something I think it's called, working a bit and with diet getting a bit better, the burning is gone, knock on wood, but the damn tingly crap is there, hate it. So yeah know what that is all about.

  2. That does not sound pleasant. Hope you find something that works for what your going through.

  3. I do have neuropathy in my feet (damage to my spine, bulging disks cause it). The Gabapentin (Neurotin) works well for me most of the time but there are times when my feet burn so bad that I have to soak them in very cold water to just numb them. A med that does seem to help me sleep at night, helping with RLS and other symtoms in Klonipin. I also use a TENs unit on my back. It shocks you a little to kind-of short out the pain in nerves. I don't know if either of those might help him or not. I hope they find something to help him soon. Living with pain is awful :(

  4. I'm sorry. I don't have any solutions for you, but I hope you find something helpful soon.

  5. Thank you, June. I will definitely tell him about those things and have him ask his doctor. I know it's so hard being in pain from neuropathy so I hope they find something to help you too.

  6. I'm another with no clue on this one but it sounds awful. I hope you find something that helps him soon. I can't imagine how bad that must hurt having those pains all the time. Lots of good thoughts headed yalls way!


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