The Painful Reality of Neuropathy
By Dave R.
May 14, 2014
Internet links shown in these posts are designed to provide more detailed information if required.
Occasionally, everybody tingles, or has numb fingers or toes, or feels the nerve at the back of their leg twitch to give them shooting pain. They may be woken by restless legs that shudder without reason, or recoil if they touch something too hot or too cold, or conclude they've got a trapped nerve somewhere on their bodies. These are all perfectly normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode!
When that happens, you may well find out what it's like to be one of the millions of people across the world who are living with neuropathy.
Neuropathy is nerve damage, disease or disruption. That's simple enough isn't it ... and the cure is? That's also simple ... there isn't one.
However, those bare facts tell people who aren't affected absolutely nothing about what life is like with this mysterious, indistinct and difficult to treat condition. Most people have little or no concept of how nerves work and how essential they are to daily life anyway (why would you, when everything works as it should!) and therefore find it nigh on impossible to understand what happens when the system breaks down.
The neuropathy sufferer is then faced with the task of explaining his or her weird symptoms to a largely glassy-eyed and disbelieving audience. When the patient can't put it into words himself, he or she quickly feels frustrated, not taken seriously and even under suspicion that they're on a sympathy quest or even committing some sort of fraud.
In a Nutshell ...
Often resulting from damage or degradation to the nerve itself, its cells, or the (myelin) lining that protects the nerve, neuropathy sufferers are subjected to a series of confusing, functional breakdowns which send out wrong signals, or no signals at all. It really can be compared to a short circuit in a domestic electrical system but the resulting feelings and sensations are pretty unique to the disease.
Now the mechanics of it all, why it happens and its 100-plus causes, with special reference to HIV, can be found by reading earlier posts:
It's important to remember that neuropathy affects all sorts of people from all categories of society. It's most common amongst diabetics and affects more than 20 million people in the USA alone but between a third and a quarter of all people living with HIV will eventually suffer neuropathic symptoms. But what does that mean? What does it feel like and why are its symptoms so difficult to explain to a largely disinterested public?
As I said before, there are over 100 causes and also over 100 types of neuropathy, so pinning down exactly how someone feels with the disease really depends on where your nerve damage is happening and what part of your body is being affected. That said, the vast majority of neuropathy patients have sensations they can instantly recognize, irrespective of the cause. Generally, neuropathy falls into one of the following four categories:
So, Where Is Neuropathy Most Likely to Strike and How Are You Going to Recognize It?
In general most people suffer problems in their feet first. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. It's maybe logical that problems happen there first. The nerves there are part of the peripheral nerve system. You can think of the nervous system as consisting of the spinal cord leading to the brain (central nervous system) and all the nerves radiating out from there are peripheral nerves. Some specialists regard the digestive system as being the 4th centre of nervous activity, controlling the stomach, bowel and excretory functions but these are generally only affected if you have autonomic neuropathy.
So back to the feet, where the majority of people first notice something going wrong but neuropathy is never an overnight happening -- it can take years to develop and creeps up on you without you really noticing a pattern developing -- part of the reason why it is so difficult to diagnose and treat.
At first, you may suffer a loss of feeling or numbness in a toe, or toes. Nothing remarkable there but it is a first sign. Then gradually, you begin to feel as though the toes are both numb and painful, along with tingling, or other strange sensations. It's as though the toe is anaesthetised on the surface, yet just underneath it's painful, or tingling. This set of feelings often spreads to the other padded areas of the foot or leg. People talk about feeling as if they are walking barefoot in snow; or barefoot on soft sand; or they have socks on filled with clay. It really is a weird feeling and very uncomfortable. Many people call it the 'glove and sock' sensation, where you are walking on bare feet, or have bare hands but feel that you're wearing something on top. It can also perversely feel as though you're walking on bare bones.
The problem is that the numbness can lead you to walk strangely, or lose your footing, or take miss-steps. You feel as though you're doing the right thing to make your feet move in the right direction but they do something else and this can lead to stumbling and falling. Basically the wrong signals are being sent out and there's a communication breakdown between the brain and the feet. Another parallel with an electrical short-circuit.
Not only this but your legs can feel heavy; or you feel that your muscles aren't responding and becoming weaker. This especially affects the calves and in extreme cases can lead to muscular atrophy. Climbing stairs can be both painful and tiring and walking the streets can feel like an assault course, as you're constantly tripping over loose pavings you would normally avoid, or just stumbling when you least expect it. Many people end up using a cane to act as a 'third leg'; partly because of muscular weariness and partly to give the feeling of more security when you walk. You sometimes feel as if your leg muscles are spasming and this can be because you unconsciously put strain on the wrong muscle as you try to walk properly. People often clench their feet in order to get a better grip on the ground beneath them, which naturally leads to loss of relaxation and muscular cramping. Balance becomes a major issue and people have often been accused of being drunk or high, because they're walking like demented spiders.
All these feelings and sensations can spread to your hands and arms (more extremities on the peripheral nervous system) but that's not a given. Many people suffer with foot and leg neuropathy without problems in their hands and arms and vice versa. If you have problems in your hands; you can lose control of your grip and dropping cups, keys etc. can be a costly irritation. You have to imagine the effect this has on people. They lose their trust and confidence in their own actions and are often frightened and confused as to what is happening and that isn't taking into account neuropathy pain!
The Pain Neuropathy Brings
Without intending to sound overly-dramatic: oh my god, where do I start!
The most difficult thing for friends, family and co-workers to understand is the pain neuropathy can bring. It's like nothing else you've ever experienced. It can range from mild tingling or burning, to pain that can leave you screaming in agony, especially at night. It can feel as though the affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it's extremely painful and then you long for the numbness that you began with. People often complain of 'electric shock' symptoms and that doesn't need too much explanation. Often the muscles will spasm, leading to cramps which together with the shocks, the burning and the tingling can lead people to literally crying or screaming the hours away. It has to be said, everybody's neuropathy is unique to themselves, so the symptoms you see here can be anything from mild to wild. It's little wonder that opiates can be the only course of action in the end but even they have their limitations, leading to increased doses and addiction.
With all these sensations, you can experience the strangest reverses of feeling. Stepping on a pebble may feel like treading on broken glass and hot bath water can feel cold (or vice versa) leading to many cases of burn wounds. People with neuropathy need to use an unaffected part of their body to test textures and temperatures, or they can land in trouble. Even bed sheets that you normally hardly feel, can cause severe discomfort and many resort to invented strategies to keep sheets off their feet and legs at night.
Paradoxically, areas where you experience numbness can be the most painful. The surface may be numb but just underneath Dante's Inferno is raging. Try explaining that to friends and family -- unless they've experienced it, they just don't understand what you're telling them. "How can it be numb and painful at the same time? That doesn't make sense." The problem is that some or all of these symptoms can in the worst cases, lead to being confined to a wheelchair, or even death, if autonomic functions are severely impaired.
Many people living with neuropathy experience abnormal sweating, or don't sweat at all. Waking up with the sheets drenched (as many older HIV patients will know) is very unpleasant. The nerves to the sweat glands are affected and this changes the pattern and frequency of sweating. The same goes for urinary problems and digestive malfunction. It's very difficult to relate these to nerve damage but they are common symptoms of autonomic neuropathy. The nerves to blood vessels, intestines and bladder are damaged by the disease and give out faulty signals leading to abnormal behaviour in functions which we take for granted. You may feel bloated after eating small portions; you may have difficulty emptying a full bladder yet the brain tells you the bladder is empty. This sort of thing leads to secondary infections, constipation and diarrhoea. Sexual malfunction in both sexes is a common side effect of autonomic neuropathy and can be very upsetting. Blood pressure changes are also alarming results of this type of neuropathy, leading to all the consequences of too low or too high blood pressure.
"Patients who have chronic neuropathic pain [often] have more than one type of pain. For example, a man who has post-herpetic neuralgia at high and mid thorax may have constant ongoing pain that keeps him awake all night; mechanical allodynia [pain resulting from a stimulus that ordinarily does not elicit a painful response] and hyperalgesia [increased sensitivity to painful stimuli] that prevent him from wearing any clothing so he cannot be active and socialize; secondary myofascial pain in the shoulder so that use of that arm is limited; and after a few short weeks of his pain, the patient is by now sleep deprived, depressed, anxious, and very irritable." (Backonja and Galer, Neurol Clin 1998; 16).
Hopefully, this article gives you some idea of what it's really like to have neuropathy in your life. It's a horrible disease because it's so unpredictable. Some people go for years with only mild discomforts (a little tingling here, a little numbness there) but others suffer dreadfully and need to be on the heaviest medication to control the symptoms. The medication only helps to control symptoms (see earlier links for more information); it doesn't cure anything.
Unfortunately, in 2014, although there are many more research studies at molecular level being carried out on things ranging from fish venom, via natural supplements, to the most sophisticated opioids, there's no sign of a cure on the horizon. People have to live with neuropathy as best as they can and find the best treatment available to help their own nerve problems. Diabetes is by far the most common cause but between a quarter and a third of all HIV patients will end up with neuropathy too, either thanks to medication or the virus itself attacking the nervous system.
All people ask for if they tell you they have neuropathy, is a little sympathy and understanding that their lives are difficult. Chronic pain is a feature of our age but the chronic pain of neuropathy is possibly one of the meanest of them all and not to be underestimated.
HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
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.
Subscribe to Dave R.'s Blog:
June 23, 2014 - When Push Comes to Shove ... How Far Would You Go to Eradicate HIV? A Blog Entry by Dave R.
May 14, 2014 - The Painful Reality of Neuropathy: A Blog Entry by Dave R.
March 3, 2014 - The Bug Chaser's Tale: An Interview -- A Blog Entry by Dave R.
January 22, 2014 - Please Don't Leave Me Because I Need You: An HIV Take on Separation Anxiety -- A Blog Entry by Dave R.
January 14, 2014 - Please Don't Ask Me to Say I Love You: An HIV Take on Commitment Phobia -- A Blog Entry by Dave R.
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