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Neuropathy: Facts and Fiction

By Dave R.

May 3, 2013

Internet links shown in these posts are designed to provide more detailed information if required.

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This article originally appeared on PositiveLite.com, Canada's Online HIV Magazine.

Neuropathy is one of those diseases that affects millions of people (20 million in the USA alone) and between 30% and 40% of people living with HIV and yet if you ask 100 people on the street what it is, the vast majority of them won't have a clue what you're talking about. This article is based on some of the commonest questions from people new to the disease and is meant to establish some facts and clear up some misunderstandings, especially in relation to people with HIV.

'What is neuropathy?'

Simply put, neuropathy is damage to the nervous system. The nerves have been attacked or compromised for one reason or another. Very often the protective layers surrounding the nerves themselves or the nerve cells have been destroyed or eroded and this leads to what you could term 'short circuits' in the nervous system. This means that signals that normally travel between the brain, spine and the organs and limbs to enable normal function, are disrupted, causing both erroneous instructions and sometimes strange and painful symptoms. Neuropathy is categorised as a disease of the nerves, so it's not just a random happening caused by an unexpected accident (except in those cases where physical injury is the obvious cause).

'I've seen lots of sites on the internet about neuropathy caused by diabetes, or as a result of chemotherapy: is my HIV-related neuropathy the same, or totally different?'

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That's true, you'll see many more sites about diabetes-related neuropathy than anything else because diabetes is the commonest cause, especially in the Western world. There are however, over 100 different categories of neuropathy and over 100 different causes but that doesn't mean that the neuropathic symptoms you may be feeling are generally any different to those brought about by other causes. Many things will bring about nerve damage but once you have neuropathy, you're sharing symptoms with about 90% of all other neuropathy patients.

'I don't understand why people with HIV get neuropathy?'

Don't worry, you're not alone. At first it was thought that people who had been on older HIV drugs (d-Drugs, Kivexa, Videx and others) were more likely to suffer nerve damage as a result. That is certainly still true in places like sub-Saharan Africa where older HIV meds are still distributed because they are cheaper. The neuropathy cases there are much higher than in the rest of the world. However because people living with HIV are still getting neuropathy, despite being on modern combinations with no record of causing nerve damage, scientists began to look into why that was and have established that the virus is perfectly capable of attacking the nervous system on its own and without outside help. However, it's important to remember that people with HIV can still be diabetic, or get cancer, or have alcohol problems, or any of the many other contributors to neuropathy. Finding the exact cause of your neuropathy can often be tricky but in the end, the cause is not as important as reducing the effects of the disease on your daily life.

'I saw an advertisement from a local clinic that claims to be able to cure neuropathy for good; is that possible?'

No, unfortunately, nerve damage cannot be cured at the moment. There are cases where nerve damage is caused by injury and if the surgeons are quick enough, they may be able to repair the damage at the site of the break but in almost all other cases, when the nerve damage is established, it is virtually impossible to repair. You can assume then that the clinic is exaggerating at best. These clinics are in the business of making money and unfortunately they have few scruples about promising people the impossible to boost their bank accounts.

However, what clinics, doctors, specialists and neurologists may be able to do is reduce the effects of the symptoms but that is entirely different to achieving a cure.

'I've been told that the numbness, burning, tingling and pain will go away by itself; is this true?'

This is where neuropathy can confound even the experts. Sometimes, if you haven't had the symptoms for very long, they may gradually disappear, possibly due to the body being able to repair the nerve damage itself. However, in these cases, the nerve damage was probably only slight to begin with. In the vast majority of cases, if you have had neuropathic symptoms for more than 6 months to a year, you're more than likely to be stuck with them and there's a good chance that they will be progressive and get worse. At that point, you will need some help to cope with the effects and keep them under control.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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