The Truth about Neuropathy and HIV

Oh my God...this is it exactly! Some people are so good at describing how neuropathy feels! From a blog called 'Surviving Aids & PML' with the subtitle: 'HOW TO GET OUT OF MY OWN WAY Accepting who I AM...letting go of who I WAS. Trying to figure it all out.' (see link below)
Somebody wrote in a comment on this post: "So, Neuropathy is like watching 'Lost?" You could say that yes!

THE TRUTH OF MY NEUROPATHY April 15th 2011

I have tried to explain neuropathy to others, to mostly non-HIV folks who are not in step with the various aches & pains of those of us who have been living with HIV , nor those unfamiliar with the same pain of those who live with MS, Diabetes, and a plethora of other neuropathy associations. Trying to describe the pain itself EVEN to someone who is knowledgeable of these matters still seems like a monumental task. I am not dissing you for not knowing, sometimes even I don't know, just let me try to explain: to me, the pain of neuropathy is sort of like a television show; you never really know who going to make a cameo appearance, who is a regular cast member, who is guest starring, who is the summer replacement, when is it on hiatus, when does it begin repeating previous episodes..... a strange analogy, but that is how it feels to me Somewhere, we are not quite sure exactly where, it is arbitrarily decided how it all plays out. At times, my feet feel like they are huge blocks of ice, or my calves are burning, or there is a pain shooter up my entire leg, or my feet feel like they ares on fire, or my calves feel as if a thousand needles have become embedded in my leg, or it hurts to even just trying to move, my feet are unbearably itchy & I scratch uncontrollably until I bleed (which I do not feel)). Yet there is still a sort of stigma ( THAT F..ing word AGAIN) even among the neuropathy educated, that the pain just cannot be THAT bad. But it is. Believe me when I tell you that I am incapacitated because the pain is almost unbearable. The neuropathy that I have is most likely due to the fact that I was in clinical trials with the earliest HIV drugs, pre HAART, pre-cocktail, pre-almost everything. I was given the ones that were later discovered to be the most toxic d4T-(zerit), those big disgusting chalky DDI tabs, ddC, AZT, Ziagen (still take),Norvir (still take a low dose), HIV itself (still have) plus I have been on many, many other HIV meds. Plus the earlier combo drugs were later found out to be even
MORE toxic if used together, like in the clinical trials that I was in that were the beginnings of combination therapy. So I have many factors not in my favor I do not begrudge being a part of these trials. They probably played as part in my current longevity (despite the rumor that I am way tooo curmudgeonly to die).

I have been to 3 pain clinics, I am on a boatload of meds to combat the neuropathy (Neurontin, Lyrica), tried many pain medications, even a pill form of methadone (synthetic heroin), which although very effective, also VERY addictive, it took me a year and a half to kick ( Pure HELL). The last pain clinic, where I refused to rely on any pain meds, was by far the most effective. I learned holistic, NON narcotic coping skills-meditaton, guided imagery, breathe work, qigong, bio-feedback, TENS unit, change thinking patterns, exercise, proper nutrition. So you see, to me OUR pain is very real. I've had to learn how to respect the pain, address it, or just rest. But NEVER to try to ignore it, as I and many others may have a tendency to try to do. This is REAL pain for lots of people. Believe us. It hurts.

http://pozrob.blogspot.com/2011/04/neuropathy-advanced-class.html