Peripheral neuropathy – the sting in the tail

To begin: It is estimated that between 30% and 40% of HIV patients will develop neuropathy. In the United States alone, there are 20 million sufferers (from all sources, not just HIV). It’s one of those diseases that is so un-cool, it barely makes a ripple in the public consciousness and yet if you know someone with mono, peripheral, or autonomic neuropathy, you’ll know how much it has changed their lives.

Becoming an HIV statistic was bad enough but despite all the problems with the various medication regimes and side-effects and assorted crises here and there, I eventually learned to live with it and put it in a file alongside the arthritis and lung problems which had affected me at an earlier age. Okay, I thought, enough is enough; although there are always people much worse off than yourself, I figured I already had my fair share of life-changing health problems. Not so apparently because then, almost unannounced, neuropathy arrived in my dossier.

It started off, like for so many people, with tingling in the toes, then loss of feeling in the toes and feet, then confusingly dull pain in the same places, especially in the soles of my feet. I felt as though I was walking on bare bones. It didn’t happen quickly, over a couple of years actually and although I mentioned it to my HIV doctor, I didn’t make a big deal of it and nor did he. Then gradually, it began to affect my calves and other functions in my body but because the joint problems from the arthritis muddied the waters, it was some time before someone attached the ‘peripheral neuropathy’ label and the treatment roundabout began.

To keep it short, I tried everything, from amytriptiline to capsaicin (chilli-pepper cream) and nothing worked without bringing its own side-effects along to make my life that bit more miserable. The pain and lack of energy got so bad that I found myself staying at home for days on end (thank God for my roof terrace!) My social life disappeared in the mist and my real friends couldn’t take the whining over something they couldn’t grasp anymore – which I really understand but doesn’t make it any easier.

The HIV specialist is sympathetic; he’s seen it before and knows how neuropathy can take over your life, yet strangely enough the neurologist was less sympathetic. He threw out the diagnosis, ‘Yes, you’ve got peripheral neuropathy but because the EMG tests don’t show much, there’s nothing I can do; you’ll just have to learn to live with it...’ and then just as casually, washed his hands and threw me back to the HIV specialist. What he failed to tell me was that the nerve tests very infrequently show the results in glorious technicolour – it’s called idiopathic neuropathy and is very common. My rheumatologist saw no connection between the neuropathy and his field and I had to go to Germany to arrange costly MRIs of my spine to show how joint degeneration and subsequent nerve entrapment can very much have a bearing on your neuropathic status. Ho hum, the medical treadmill can be very wearing, especially when you’re ill.

In the end, the HIV specialist put me on oxycontin because the pain was just too much to live any sort of normal life and that’s pretty much where I stand now. The problem is that oxycontin, just like almost every other form of neuropathy treatment, has side-effects. In this case, an hour before my next pill, I’m sweating and almost crawling up the wall with pain...because the oxycontin says so! I refuse to up the dosage because I don’t want to be completely dependent on a morphine derivative.

Last year I decided that I needed to take control of what was happening to me and if that was not possible, then I needed to know what was going on and why. I trawled the internet and came up with hundreds of sites about neuropathy but they were either rip-off commercial sites, trying in devious ways to sell you something; or they were so basic they weren’t worth reading; or they were directed at diabetics or cancer sufferers (who also suffer in vast numbers from neuropathy) but there were very few sites directed specifically at HIV patients with neuropathy. So to help myself, I did the research both to improve my own knowledge and to act as a distraction from the nagging discomfort and created both a website and a blog. The intention is to provide HIV patients with a readable source of information both about the disease and the options you have in dealing with it. Certain neuropathy treatments don’t work in the same way for HIV as for diabetes patients for instance. Because I live in Amsterdam, the website is in both English and Dutch but the blog is English-language only.

A final twist in the tail is that strangely enough, most studies have come to the conclusion that almost nothing helps with nerve repair, (not just masking the pain), apart from capsaicin, or smoked marijuana! In my case, the laws of the land aren’t the problem; the fact that I gave up smoking four years ago because of my lung problems, is! Damn! Just when pleasure became legal again!

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Thanks to Dave for sharing this story. Dave produces a website in English and Dutch and an English-language blog on living with HIV and neuropathy.

Visit Dave's blog >
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

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