Let's keep it simple here. If you've had neuropathy for some time, you'll already know what we're dealing with but if you're just beginning to encounter strange sensations in your feet or hands, or numbness which makes it feel like you've got wet sand in your socks when you walk, you may be wondering what on earth's happening to you. You may also be concerned that it's something that may happen to you in the future, or maybe already know a family member or friend with neuropathy and want to understand what's involved to be more supportive.
Basically, neuropathy is nerve damage. You can equate it to an electrical short circuit, which causes a breakdown of normal service in the nervous system. It's a highly complex condition with many causes and equally many variations and although the symptoms are like no other disease, it can be very difficult to diagnose. Once diagnosed, a prognosis is almost impossible because its progress is dependent on your personal situation. It's another auto-immune disease, where in this case, the immune system more or less attacks the nervous system.
Our nervous system is made up of two parts: the central nervous system and the peripheral nervous system. The central nervous system comprises the brain and the spinal cord and the peripheral nervous system concerns the nerves which spread out from the central nervous system. Confused already? Hopefully not yet.
In general there are two types of neuropathy. If we're talking about damage to a single nerve, then we would call it mono-neuropathy; if several or more nerves are damaged then it is called poly-neuropathy. The peripheral nerves (extensions growing out of a nerve cell or neuron) are also called neurites and they can be compared to electricity cables because neurites also have an external insulating material called myelin. Myelin protects the neurites against both physical damage and electrical impulse damage to the tissue. Neuropathy occurs if the nerve cells or myelin are damaged or destroyed. That's why you can compare it to a domestic short circuit, which makes it easier to visualize.
Most people have one or another form of peripheral neuropathy: nerve damage in the longest nerve channels, furthest away from the brain and spinal cord. This is characterized by the well-known symptoms found in the extremities (the hands, arms, legs and feet) but can also be seen in the internal organs. The symptoms can vary, with amongst others, tingling or loss of feeling; a burning feeling (especially on the feet and hands); itching, chronic pain, or combinations of some or all of them.
Unfortunately, the potential problems don't end there.
The Nervous System
Neuropathy can also attack the so-called Autonomic Nervous System, a term for the part of the nervous system that works involuntarily -- we have no control over it. This system controls things like heartbeat, blood pressure, digestion, certain muscular and lung functions, liver and kidney operations, sexual activity and so on: to put it simply, things which work in the body without us being consciously aware of them.
If neuropathy begins to affect the autonomous nervous system, then a whole range of activities may cease to function normally. Blood pressure problems, (dizziness on standing upright); drying up of sweat, saliva and tear glands; urine retention (not being able to empty the bladder completely); impotence, constipation, stomach contents retention (not being able to clear the bowels); heart rhythm problems; breathing difficulties and so on.
Most people on the street have never heard of neuropathy and certainly most HIV-positive people are unaware that it's a real possibility in their lives; which is strange considering that is generally accepted that around twenty million Americans (and therefore a proportionate number in other countries in the world) suffer from neuropathy in one form or another. Most of them have neuropathy as a result of diabetes, or chemotherapy treatment, or alcoholism, or physical trauma, (up to a hundred causes in all) but the disease still remains relatively unknown; why?
As you know all publicity costs; and because there is no cure and therefore, no world-beating medication for the drug companies to compete over, there is no new money to be made, so few pharmaceutical companies are going to promote neuropathy as a cause. Instead, they boost their older pain killers, anti-depressants, or epilepsy drugs, which work for some people in suppressing the discomfort -- no cash to lose there. Apart from that, there are very few high-profile role models (Angela Lansbury and Johnny Cash are hardly likely to bring in the big bucks!) and the media doesn't find images of neuropathy patients to compare with the AIDS orphans in Africa.
No Outward Signs
That's another major problem for neuropathy campaigners: neuropathy is a disease which, if you stand still, doesn't usually have any outward signs: no rashes, lumps, or malformed limbs, or swelling, or wasting; you can look the picture of health and yet still be in agony from neuropathy. It can be a major issue convincing people, from doctors to family members and loved ones, that you've really got a problem. Little wonder that the anti-depressants are sometimes more useful for the depression resulting from the disease, than helping the symptoms!
The longer you live with the disease, the more you grow to understand what's happening to you but in the beginning, it's like sifting through mud trying to find answers and solutions. Many doctors will still just shrug their shoulders, sympathize and tell you that you'll just have to learn to live with it; which for a patient already living with HIV, is the most negative and depressing thing they could hear. Why don't doctors realize that?
The problem is that patients living with HIV need doctors who will look at their situation holistically because every side effect, medication, or virus-related problem is linked to another medical area. Luckily, most HIV specialists are fully aware of that and have become "Jacks of all trades" in the medical world. You don't just treat the virus HIV; you treat everything that comes with it and for some people that's like the contents of a small medical dictionary! Neuropathy, in whatever form, is the unexpected sniper that hits you just when you thought everything was settling down in your medical life. It doesn't come with the virus, or when you begin the drug regimes, but appears later, as a result of the medication, the virus itself, or a host of other reasons. It's a mean, life-changing disease that has different causes and is different for everyone and that's precisely what makes it so difficult to treat and why doctors are just as frustrated as we are.
That said; neuropathy doesn't affect everyone with HIV. Current estimates and statistics show that at least a third of HIV-positive people will encounter neuropathic problems but that means that two thirds won't! Still, one in three, or four is pretty significant and the longer people survive with HIV, the more cases of neuropathy (amongst other things) are appearing. Then, if you do have neuropathic symptoms, they may begin with as little as numbness in one toe ... and stay that way; or tingling in the feet and hands, combined with numbness and paradoxically, pain which eventually lead to muscle weakness and some form of permanent disability. It's just that sort of disease; it ranges from mild to wild, with everything in between. The doctors try to treat the symptoms with a variety of drugs and/or supplements and alternative therapies and what works for one person, doesn't work for another with exactly the same symptoms -- are you getting the picture? Unfortunately, however much the many symptoms can be helped or not, the disease itself is, in 2011, still incurable.
Don't Get Depressed!
This article is not meant to depress people but it is meant to be realistic. If you know what you're dealing with, then it's much easier to find a place for it in your life. Moreover, worst-case scenarios are just that: you will probably be able to find something to help your own neuropathy experience become more bearable. It may take a while, as you try this, that or the other treatment but most people will find some relief amongst the many options available. It's very important to learn as much as possible about your condition and if your doctor tells you there is nothing he or she can do, that may be strictly true in terms of curing the problem but that is never an acceptable approach in terms of living with the disease; change doctor and find someone who will support you in your efforts to control the worst aspects of neuropathy -- with a bit of luck, your HIV specialist may be the very person. Armed with facts, you can work with the medical specialists, rather than passively accept a one-sided relationship. However, most first-port-of-call doctors are not neurologists and may have a limited experience of neuropathy. Plus, busy as they are and under the burden of time restrictions, their very human instinct may be to usher you out as quickly as possible, to try to clear the day's backlog of patients. If you can save them some time by doing your own research beforehand and maybe setting your symptoms down on paper, you'll earn respect and establish a constructive treatment program much more quickly.
After all, you're already living with HIV; you deserve some acknowledgement for what you've already gone through but as Sir Francis Bacon said in 1597, "Knowledge is power."
Dave also writes for The Body.com here, where this article first appeared
Bio: 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.
I'm here as 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 website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.
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.
Next week Dave asks “Why Do People With HIV Suffer From Neuropathy?”