Neuropathy - 'a very lonely illness'

Today's post is a personal story by Andrew from London. It describes how neuropathy dominates his life and poses questions which will be familiar to many other people and deserve to be answered. Unfortunately, as we all know, the combination of neuropathy and HIV is anything but an exact science and there are unfortunately no easy answers. Some people who read his account will recognise some of the problems he is experiencing but there will be relatively few for whom it has become so serious and most will hope that their own situation never reaches this stage. That doesn't help Andrew but his story does help publicise how serious the problem can become. It also highlights the frustration that neuropathy brings; the sense of helplessness in the face of a remorseless disease and that, as Andrew says, "It seems to be a bit of an 'invisible' and poorly understood subject, even though the effects can be very distressing".

Many thanks for getting this resource out on the web. I was alerted to it by Treatment Update which dropped on my doormat this morning.

I must say I have found it very difficult to find any website where experiences and suggestions for alleviating PN pain can be shared. It does seem to be a bit of an 'invisible' and poorly understood subject, even though the effects can be very distressing.

I first noticed numbness in the end of one finger of my right hand about 5 years ago. My HIV doctor suggested it might be caused by a trapped nerve in my neck! I had already been HIV for 23 years by that point, but only on meds for 3 and a bit years, the first 2 years of which involved taking DDI (Videx) as part of my triple combo.

Odd then that I had no PN symptoms whilst taking DDI but it only started in a minor way a year or more after stopping that particular culprit drug.
This is contrary to the oft expounded medical view that stopping a culprit drug should stop the PN!

Since that first minor symptom, my PN has got worse and worse steadily to the point that both my hands are now extremely numb and painful (the paradox of PN) all the way from the tips of my fingers to the middle of my palms. I find myself continuously gnawing and chewing on my fingers both consciously and unconsciously until the skin is raw and broken, I presume due to some instinct to try and stimulate feeling or circulation. The best way to try and explain the sensation in my hands is - imagine your hands have been amputated and then reattached - the burning, aching and throbbing results from the trauma and damage to severed nerves, the numbness from severed nerves not being fully reattached or healed.

Why do I have such painful and damaged hands (in relation to the PN in my feet) when the conventional wisdom on PN suggests feet are worst affected? (PN is supposed to decay the longest nerve fibres in your body at their periphery first, hence those running down to your feet; those running down your arms to your fingers should be relatively less affected).

Why do I still have steadily deteriorating PN when my HIV is stable and controlled (undetectable in blood tests for the last 8 years), and I have not taken any implicated drugs for over 6 years?

Your description of PN in the feet as being like walking on the bare bones with no fat or muscle on the soles to cushion the impact is exactly how I described it to my doctor. Fortunately this pain can be mitigated by keeping off my feet as much as possible and wearing soft cushioning footwear. Keeping the feet raised by either lying in bed or in a recliner chair with feet raised on a footstool also makes them much more comfortable than standing or sitting normally with feet down on the floor, which only exacerbates the throbbing and aching sensations.

As it has progressed, PN has also started to affect other parts of my body - my thighs are now extremely sensitive to the lightest touch - trousers or jeans brushing on my skin as I walk feels like sandpaper being rubbed on burnt skin, for example.

PN may also be implicated in the muscle stiffness and pain (fibromyalgia) which finds me crawling out of bed in the morning barely able to move due to the aching stiffness. This has also caused me to attend hospital.
I have tried to include as much useful information as I could without rambling on endlessly because I wanted others to be able to share a little of my experience of living with neuropathic pain and the way doctors have dealt with it.

It's very strange that there are so many hiv+ gay men in London and the UK but no-one ever mentions their problems with neuropathy. HIV viral load, Hep C etc yes, but not a murmur about the difficulties of living with PN and trying to manage the pain.

It does make it a very lonely illness. You feel, "is it only me?"

Even living with a partner doesn't help much, as they cannot see anything visibly wrong with you so keep forgetting that you are in distress from the never ending pain. So frustration and short-tempered-ness are often order of the day.

It's just a shame that there isn't much in the way of treatment that really works to stop the pain at source. Or to get the feeling back into these horribly uncomfortable 'wooden' digits.