Living with peripheral neuropathy

I didn’t know, at first, why my feet hurt so bad. I would wake up every 90 minutes or so every night.

Because of the ‘way’ they hurt I thought they were just cold. I tried wool socks. Wore wool socks at work. (Came to find out later heat exacerbates the pain.)

Then one day, sitting in a bar reading a gay-rag advertisement for HIV meds, I saw it. PERIPHERAL NEUROPATHY. That had to be it.

Why didn’t my doctor tell me about possible side-effects I should watch for? Is there some medication that could help? Would I always deal with this pain?

My doctor confirmed the diagnosis and said that some patients deal with the pain anywhere from 6 to 18 months. He explained the reason for the way my brain was ‘sensing’ that my feet hurt. He prescribed an antidepressant that works on nerves that may eradicate the pain.

I was so hopeful! How desperately I needed a full night’s sleep! Well, the medication DID help me sleep but the pain persisted.

After two or three medication trials and a pain specialist intervention, as well as about 10 years later… I still suffer the with pain of peripheral neuropathy. Everyone has heard of a cure, something that helps, how I can deal with this pain. I’m beginning to understand now, that I have become a completely different person because of this pain. Consider for yourself the possibility of a headache or toothache for ten long years. At times I joke that the original antidepressant was prescribed to prevent me from going crazy with this pain.

Don’t doubt for a second that I haven’t considered suicide. I’m not going to make this a long philosophical discussion that has become my life (my HIV status is playing second fiddle now). Everyone listens, everyone cares, everyone hopes and prays for me, people love me, and for that I am grateful.

Someone with a physical abnormality has no way to hide so that people won’t look and wonder or show compassion. Maybe that WOULD actually be harder to deal with on a daily basis than to just be in pain with no one noticing. Maybe I’m the cry-baby now, wanting somehow to make people know about my pain. Funny thing is that when the same people who know of my condition ask "how are you doing?" and I answer "okay", I sometimes want to scream “THEY HURT AS BAD AS ALWAYS AND EVEN WORSE TODAY!”

It would be very easy (let me tell you, very VERY easy) to give up. You may want to as well if you are reading this in between medicating yourself, whether physically, mentally or spiritually. I’m still here. I don’t wanna stick around all by myself. Hang in there. Tough it out with me. Rub some dirt in it. We’ll be OK some day. If not in this world, well for sure in the next…

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.