Neuropathy and HIV

Okay you’ve learned that you’re HIV positive. You’ve learned to live with the facts (difficult enough) and are possibly one of the more fortunate ones who can take their meds daily and lead a relatively normal life.
On the other hand, you may already have had problems with secondary infections, or side effects, from either drugs or the virus itself and are finding that living with HIV is anything but the ‘one pill a day covers all’ fallacy.

One thing’s for sure, the last thing you’ll be hoping for is yet another problem; especially one for which there isn’t a cure and may develop into something very painful and debilitating. That’s the sort of confrontation that neuropathy can bring.

The key words here are, ‘can’ and ‘may’, because neuropathy is a condition that ranges from tingling or loss of feeling in a single toe, to serious pain and invalidity but its seriousness varies and progresses at a different rate for every individual. Yet almost all statistics on the subject, suggest that in the Netherlands alone, there are approximately 400,000 patients who have polyneuropathy to a lesser or greater degree. Two to eight percent of all adults have symptoms or signs of polyneuropathy and the older you are, the greater the chance of developing neurological damage.

These statistics are by no means all HIV patients. Neuropathy can emerge in cancer patients who have undergone chemotherapy; diabetes patients and people who have had physical traumas and therefore the vast majority of neuropathy sufferers in the Netherlands are not HIV patients. However, it is estimated that 30%+ of HIV patients will develop neuropathic symptoms and that works out on current estimates at 5,500 to 6,500 people which is a truly staggering figure when you see how little media attention is given to it!

Okay, you can prove anything with statistics and at the moment, relatively few HIV patients go on to develop serious neuropathy to the point of invalidity but HIV is a relatively young disease and the longer people survive, the more chance they have of developing long-term conditions such as neuropathy. Time will tell how widespread this problem will prove to be.

What is indisputable, is that if you are suffering from neuropathic pain in your feet, legs or hands, or have little or no feeling in the same organs and need to watch how you walk and what you touch; or if it is already affecting secondary functions such as urination, erectile function, breathing and so on, you won’t be interested in statistics, you’ll just want someone to do something about it.

If only it were so simple!
Unfortunately, finding the cause of the neuropathy, whether it’s caused by the virus itself, or medication, is extremely difficult and that’s without mentioning how difficult it is to measure! Via tests on the central nervous system and the patterns of signals to the brain, signs of neuropathic damage can be seen but more often than not, the tests show little in comparison to the extent of the symptoms and a proper diagnosis often depends on the alertness of your doctor.
Far too often you’re told:
“That’s neuropathy; you’ll have to learn to live with it I’m afraid.”
And fighting to be taken seriously when busy doctors depend more and more on concrete evidence, only adds to your problems.

This website is designed to fill in some of the gaps in knowledge and background information so that we can make considered choices and ask the right questions of our medical practitioners. It will attempt to look at both conventional and alternative treatments all which may help but probably not cure and will provide links to other websites, which give more extensive information.

It is specifically aimed at HIV patients but of course not exclusively. Neuropathy is neuropathy and can affect a broad range of people.

Accepting that neuropathy is one of those conditions that can drive you to distraction is a very important first step because the frustrations associated with neuropathy are aggravating for both doctor and patient alike. In the Netherlands, there is a fair amount of support for neuropathy-suffering, diabetes patients and also those recovering from chemo treatments but almost nothing for HIV patients. HIV patients can also go to general sites dealing with those other problems – the facts are the same for everyone but as we all know, HIV patients have to deal with more than just neuropathy and hopefully on this site, ideas can be shared via the Blog because as every neuropathy patient knows, all tips are helpful and sometimes just knowing that you’re not the only one feeling this way, helps enormously.