December 7, 2011
Becoming an HIV statistic in 2004 was bad enough. But despite all the problems with the various medication regimens and side effects and assorted crises here and there, I eventually learned to live with it. I 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, and 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. Although I mentioned it to my HIV doctor, I didn't make a big deal of it, 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.
I was stretched, prodded, injected and plastered with electrodes to satisfy testing protocols. I tried everything current medical thinking has to offer and none of it worked, either permanently or effectively. Some things helped with the discomfort and pain. Others created a drug dependence which is hard to believe was officially sanctioned. But nothing got to the root of the problem, or allowed me to live a normal life.
In the end I came to my own conclusion that there simply isn't a cure for neuropathy, in the same way that there isn't a cure for HIV, something that was confirmed later after a series of "yes/no" questions to the neurologist. I decided then to take some responsibility for my own lack of knowledge and trawled the Internet looking for answers. That was a surprise! There are so many commercial clinics and medical practices with fancy names that promise to "cure" your neuropathy -- at a price -- and actually can't; or information pages, which end up trying to sell you this product or the other; it's frustrating.
Because most neuropathy sufferers are also diabetics, or have contracted neuropathy from chemotherapy treatments, there is information widely available on diabetes or cancer sites, but very little indeed for people living with HIV who have neuropathic problems. Most neuropathy patients, especially those with HIV, have learned over time that what they need is practical and easy-to-understand information which will help the patient learn to deal with their disease.
To that end, I decided to take the best of what the Net has to offer, consult with my local hospital and use my own experiences to gather it all together in one place, which can be used as an information resource. I created a basic information website, initially in Dutch (language of the Netherlands, my adopted homeland) and then in English. I quickly realized that this wasn't enough and linked an English-language blog to the site. I found that, for what seems a relatively specific subject, there was a surprising amount of interest.
I was lucky enough to get the chance to contribute this blog for TheBody.com, and hope in this way to be able to spread as much useful information about neuropathy as possible. Each post will contain one or more links to articles or posts on the original blog, mainly to give more detailed information about a particular point. These are all written by professional or experienced people and each post has a link to the original source. The information they contain has been checked as far as possible, by researching as to whether the same facts are presented independently elsewhere. That said, of course nothing you read on the Internet should be taken 100% at face value.
I must add here that I am also not a doctor and would always advise people to consult a professional before embarking on any course of treatment, or taking any medication or supplement. The more opinions you can get, the better balanced your decisions will be.
If you're already suffering from neuropathy, you'll know what a ruthless, complex and unpredictable disease it is. Hopefully, by exchanging information we can help each other to make it clearer and easier to live with. It's not going to go away and the problem will, unfortunately, over the next few years, only grow amongst HIV-positive people.