My docs have helped control the pain of that walking on cactus, but the tingling is maddening. From my numb feet to my chest, & from my fingers to my arm pits tingling 24/7. I've had several emg tests both locally and st johns Hopkins university. I wasn't given a lot of encouragement. I've tried homeopathic as well, but it doesn't help. I don't know if it's the longevity of my 29 years of hiv, long term antivirals or what and neither do my docs. I'm open to suggestions.
I'm told by more than one Dr that age had nothing to do with it. I've seen Dr's locally and my neurologist referred me to johns Hopkins. The mythology sub socialist there have been studying huv/neuropathty combined. As of now the common belief is not one it the usher but rather both the meds and the virus. There are a few different studies out where patients have neuropathy with different variations of med history, viral load and t cells... nothing in common except the virus itself and yet we ask have variations of neuropathy. Another study links perfectly healthy people being tested for drug studies as having reported neuropathy. So the Dr's believe it's both. Mine just happens to be extremely bad...
I've tried switching meds, tried different pain killers, yet it keeps getting worse...
I will deal with it..... Sorry you're not having any luck getting rid if it either. Mine just keeps traveling north... It does suck when your nipples tingle all the time, but I will take that in a heartbeat as opposed to not feeling them at all luck my feet. They either hurt like hell or I don't feel then at all...
I was given neurontin for my neuropathy and it's been working so far
I would recommend eating organics and lots of fruits and vegetables. I've learned we are more prone to getting cancer as well. I have totally redone my pantry and fridge.
My docs have me on an evenly high dose if that. 1200mg, 4 times a day. It helps but doesn't stop...
I also suffer from severe peripheral neuropathy, mostly in my feet, spreading up through my ankles and most severe at night. It’s beginning to impact my fingers so that it’s difficult to do things like playing piano and typing and picking up stuff — I tend to drop things because I can’t always feel what’s in my fingers. All of my doctors have tried different techniques including wearing loose fitting shoes, exercise, stimulation of nerves, homeopathic. The only relief I can get at night is using gabapentin, baclofen and oxycodone (as needed). Tried Lyrica — did NOT work and I had nasty side effects. Once I get to sleep, I’m OK now. Used to wake me up with great pain in my feet. Very similar to diabetic peripheral neuropathy. But, I’m pre-diabetic so far. I’m looking at changing from Atripla as some say it is a side affect. One doctor says that he has several patients who have this complaint and that it’s now known to be related to HIV. But, they’ve not determined if it’s only HIV or is it medications or both? At any rate, it is quite annoying during the day — sometimes I’ll come out of my slippers at home and not realize they’ve come off my feet — LOL. It’s gotten worse in the past year. I’m 71.