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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 ...

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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:

  • Motor neuropathy
    Motor means movement, so motor neuropathy is damage to the nerves that control muscular activity and movement in the body. It generally affects feet, legs, hands and arms but can also affect speech.
  • Sensory neuropathy
    Sensory means touch, so sensory neuropathy is damage to the nerves controlling what and how you feel. So it can affect how you feel pain, or even the lightest of touches.
  • Autonomic neuropathy
    Autonomic means involuntary, so autonomic neuropathy affects the nerves directing bodily functions you aren't aware of and have little control over, such as breathing and heartbeat but also digestion (including bladder and bowel functions), sexual response and circulatory problems. It's easily the neuropathy with the most serious ramifications.
  • Combination neuropathies
    A nightmare for many, when you have a combination of the above problems.


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.


Related Stories

Neuropathy: Facts and Fiction
The Opioid Solution and HIV: From the Frying Pan Into the Fire
Neuropathy and HIV: A Progress Report
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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Reader Comments:

Comment by: Dr. Leonard Coldwell Thu., Aug. 28, 2014 at 2:09 am EDT
A person can be saved from the harmful laser treatments that may cure the existing disease but may cause some other side-effects or toxin buildup. To summarize, though naturopathy is a slow method of treating diseases, it has the ability to treat the disease from the root so that the same disease many not occur again.
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Comment by: Kathy (Austin, TX) Mon., Jul. 28, 2014 at 5:16 pm EDT
I write this in hope it will help others. My husband was diagnosed with small fiber neuropathy 8 yrs ago. He lived in constant pain 24/7 burning needles, shooting pains, sometimes the pain was debilitating for weeks at a time and he was unable to get out of bed. I bought him Dr. Kings natural medicine Sciatic Nerve Formula. He uses 3 sprays in the am and 3 in the pm. His pain is gone. I thank God every day for this blessing. I hope you try this and it helps you so that you may pass this information on to others. This has been a miracle for us. This is the first time in 8 yrs my husband has not been in pain. He has been using it for a month now. I hope and pray it's continued use will keep the pain at bay. We have tried all the usual - lyrica, gabapentin, wellbutrin etc. nothing worked. He even has a prescription for morphine for when it gets worse than usual. I tried to post this information on Dr. Kings's website but it's not set up for comments. I am not affiliated with them in any way. My only hope is to aid in the end of someone else's suffering. When you watch someone you love suffer and are told there is no cure, or you are that someone then you understand. May God Bless.
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Comment by: Karen (USA) Sat., Jul. 5, 2014 at 9:13 am EDT
Thank you for putting this awful condition in words anyone can understand. I don't know why I have neuropathy, and no one seems to care enough to do the detective work involved to find out. My PCP says I may never find out. I've burnt through three neurologists already. It's sad, frustrating, and expensive.

Karen
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Comment by: Dr. N. Patel (London UK) Sun., Jun. 22, 2014 at 12:02 pm EDT
I would like to congratulate you on such an objective and accurate article about a disease that affects more people with HIV than many think. I am a GP in London and have a high percentage of HIV+ patients. So many of them suffer from nerve damage to one extent or another and as you point out, it's very difficult to treat effectively. I would say that most of my neuropathy patients who also live with HIV, first encountered it after taking certain older Hart medications but lately, younger patients are appearing who have no history of drug-related neuropathy. We are concluding more and more that the virus itself attacks the nervous system in some way; probably at an early stage and before treatment commences and as you know, it's rarely reversable. You certainly do the community a favour by highlighting the problem and reassuring patients that they are not alone in the way they are feeling.
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Comment by: Michael (Scottsdale AZ) Thu., Jun. 19, 2014 at 3:36 am EDT
I've noticed from other pieces you've written that you're always saying that neuropathy has a low profile among ordinary folks and that hardly anybody knows what you mean when you mention it. This must be even more true for people with HIV and neuropathy. I've looked at the sites of the Neuropathy Association and they are always trying to get more publicity by selling wrist bands and advertising wherever they can but it doesn't seem to make any difference. I've had bad neuropathy for years now and recognize a lot of what you say here but it's true, I tell people what I've got and they have no idea what it is. Maybe we all need to make more noise until ordinary folks know what we're talking about. If everybody wrote a mail to their local TV stations asking for coverage maybe that would help. I can't understand why it's so invisible.
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Comment by: George (Visalia, CA) Tue., Jun. 17, 2014 at 8:56 pm EDT
Your article on HIV related neuropathy was spot on. The information described what I am going through. What I find just as irritating is the the lack of qualified physicians in our rural area, or worse the lack of belief from the doctors.
Most just jump to the conclusion that I want drugs to support my habit even though my blood work comes out clean.
All I want is to sleep four or five hours at a time. I would like to be able to wear a good pair of shoes without it feeling like I got rocks in my sock and shoes.
I would like to catch the SOB who drives nails down my toes and in my heels every now and then. I've stopped use real glass wear because I am afraid I will drop and break the glass or even worse step on it and not know and track blood through the house.
Your article was clear and very well written, THANK YOU!
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Comment by: Dave R (article author) (Amsterdam) Sat., Jun. 14, 2014 at 3:44 am EDT
Important! Someone on Facebook has commented that Lyrica is the best non-addictive drug to help with neuropathy. I'm sorry to say that this is somewhat misleading. In May 2012, Pfizer, the manufacturers of Lyrica (pregabalin) withdrew their own support for the drug in relation to HIV and diabetes-related neuropathy. This was followed by negative advice from the FDA regarding Lyrica and neuropathy. Not only have several studies shown that the drug is ineffective in the majority of cases but the cases of severe side-effects have just been too high, leading to court cases and suffering for patients. If your doctor prescribes Lyrica (pregabalin) for your neuropathic problems, I strongly suggest you discuss it thoroughly with him or her, or even get a second opinion. There are other options with less side effects. Lyrica may not be the best option for you.Discussing your prescription with your doctor is good general advice. Remember, every drug prescribed to help with the symptoms if neuropathy has been originally designed for another disease or condition and side effects are unfortunately far too common.The following article may help you understand the issue a little better: http://www.positivelite.com/component/zoo/item/neuropathy-and-hiv-a-progress-report
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Comment by: SANDI (MONROE,LA.) Tue., Jun. 10, 2014 at 10:43 am EDT
CELIAC DISEASE CAUSED MY NEUROPATHY
I WAS TAKING NEUROTIN 4 TIMES A DAY..I DISCONTINUED THAT.
I TAKE 2500 MCG OF B-12 DAILY-WHICH SEEMS TO HAVE HELPED THE MOST. I AM WONDERING IF OTHER SUPPLEMENTS COULD HELP....
YOUR ARTICLE IS VERY INFORMATIVE. THANK YOU,GOD BLESS
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Comment by: Ichube (Windhoek, Namibia) Mon., Jun. 9, 2014 at 4:29 pm EDT
I read your neuropathy article and want to tell you if you don't mind, that in many parts of Africa, people with HIV and neuropathy are often told to go away and live with it. The doctors don't seem to recognise it or they say it is part of HIV and comes from the HIV drugs. But they won't give us medicines to help with the pain. We can pay for them but we don't have the money and the doctors also say that drugs for depression don't work on this sort of pain. Yet everywhere on the internet I see that dperession drugs are often used to help the pain. There is not much we can do if our doctors won't help us. I have sent your article and some others to our regional health service and hope they will better educate the doctors in the countryside. Because when you say that the pain feels like all those things, we know what you mean but many of us have bare feet or very bad shoes. It's a very bad situation for people with neuropathy in Africa.
Yours sincerely
Ichube Ehafo
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Comment by: Jackie (Portland Oregon) Fri., Jun. 6, 2014 at 5:26 am EDT
Wow this really hits the nail painfully on the head. I've had neuropathy since being on Kivexa for years and coming off it was too late to reverse the damage. So much of what you say is true for my life and you're right, nobody believes you or understands what sort of pain it is.
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Comment by: Prisca (South Africa) Wed., May. 21, 2014 at 1:35 am EDT
I am both diabetic and HIV positive and the story about neuropathy is so touching as I also experiencing the same. All I want to know is do we have here in South Africa medication that can help to ease the pain. I have reported this condition to my doctor several times but he never prescribe anything for me. Please help
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Comment by: Bob (Seattle WA) Tue., May. 20, 2014 at 6:04 pm EDT
Thank you for this information. I have dealt with peripheral neuropathy for five years, most likely caused by the D drugs (ddI ddc and d4t) and Hydroxyurea which I took in the 1990's. You described the symptoms I have exactly as I have them. I am moving to Palm Springs CA because the warm, dry weather seems to be of some help. I think we need another ACT UP to get the attention this problem deserves. I want a cure or at least some real treatment before I lose complete control of my nervous system. Thanks again.
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Comment by: Grant (Rockford Il) Mon., May. 19, 2014 at 8:01 am EDT
I'm so glad you're writing about this much underestimated side effect of HIV and the HIV drugs. It still doesn't get the publicity it deserves and that's probably because most people don't understand it. Your posts make it so much more accessible. Keep up the good work.
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Comment by: Greg Zuiderveld MD (Pretoria, South Africa) Sat., May. 17, 2014 at 4:53 am EDT
Excellent article. Says it all with accuracy and without exaggeration.
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Comment by: Bruno (Milano,Italy) Wed., May. 14, 2014 at 2:27 pm EDT
Dear Mr Dave R, I thank you so much for this story. You have described my life with neuropathy completely. My doctor says I have to take Tramadol 4 times a day and I hate it but it is the only thing that will keep the pain away. I got neuropathy because I was given old HIV drugs for so many years and when I got better drugs, the neuropathy didn't go away like the doctor said it would. Like you say,it attacks you slowly without you knowing but at least the Tramadol lets me have an almost normal life. I hope your story will tell so many more people about this disease because most of my friends have never heard of it. I will translate your story and email it to them and then they will have to believe me.
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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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