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?'
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.
'My neurologist says that my neuropathy probably comes from a back injury; is this possible?'
Oh yes; it's mainly called radiculopathy and is one of the many causes of neuropathy. It occurs when a nerve becomes trapped between discs and vertebrae (in the hands, it may result in carpal tunnel syndrome) and this is quite common. There is some light at the end of the tunnel for radiculopathy patients in that the trapped nerve may be able to be surgically 'released' thus relieving the pressure and the symptoms. However, the longer a nerve is damaged due to impaction, the less likely it will recover fully. A study in the British Medical Journal, showed that three quarters of back pain sufferers who receive no help will have pain or disability a year later, so the quicker you get your condition checked out the better.
'I've been told that neuropathy is a natural result of aging; is this correct?'
This is by no means true. Many neuropathy sufferers are older people but it affects people of all ages, especially in cases of diabetes, chemotherapy, or HIV-related neuropathy. Many African HIV positive children suffer agonies from neuropathy thanks to being supplied with older HIV drugs and neuropathy amongst Western children is unfortunately more common than you think.
'My doctor told me I just have to learn to live with it.'
Personally, I'd change doctor if I was told that but to be brutal, it's partly true at the moment because there's no cure for the condition. However, there is a series of about 10 medicinal treatments (plus many alternative treatments) which you can work through until one of them reduces the symptoms for you. That's not having to live with it; that's finding the best current way of making your life easier and you shouldn't accept anything less.
'Lots of people I know have different symptoms and my pain isn't the same as theirs. Have I got something else?'
Just like the causes and types of neuropathy, the symptoms can vary widely but generally fall under one of the following:
Numbness, tingling, burning sensation, pins and needles, twitching (even restless leg syndrome is a form of neuropathy), loss of balance and sharp, severe pains. These are most often felt in the feet (soles of your feet), legs to your knees, hands and arms but can appear on other body parts as well.
If you have what they call 'Autonomic neuropathy' then various involuntary functions of the body may be compromised (breathing, digestive functions and sexual performance amongst others) and bring further misery.
So just because your symptoms are different doesn't remove the possibility if neuropathy. Personally, I believe the symptoms you 'feel', are pretty much unique to the disease and you know it if you've got it but both the degree of discomfort and the range of symptoms can certainly vary.
'My doctor told me I have Idiopathic Neuropathy; what on earth does that mean?'
Actually it means very little. Idiopathic neuropathy is not a disease on its own, or even a form of neuropathy; it just means the doctors can't identify the cause of your problems. Many people leave the doctor's appointment feeling both dissatisfied and perhaps even disbelieved if they are told their neuropathy is idiopathic and it's the doctor's job to reassure you that your problem is no less serious for it. Up to 40% of all neuropathy patients have idiopathic neuropathy but that says more about the efficiency of the testing systems than the severity of the symptoms. With causal diseases like diabetes or HIV, the doctor/ specialist/neurologist will probably make a reasonable estimate that the cause is linked to those external problems. Similarly, if you have undergone chemotherapy after cancer, that is a common cause of neuropathy but in many cases, the diagnosis is made on the basis of your symptoms, which are so clear that there is little dispute as to what you have. If you tell your story and describe your symptoms, you should never feel that you're exaggerating, or being underestimated. The cause is not the end of the matter; the treatment that follows the diagnosis is what's vital for you.
'Although I've worked my way through the medication lists, my neuropathy is now being controlled by opiates. The problem is that I have a feeling they're not working as well anymore.'
This is a problem that many people eventually face. They work their way through this, that and the other medication and nothing has worked for long, if at all. They may also have reacted badly to the side effects of certain drugs and end up on opioids just to control the pain. The problem with opioids is that eventually, you need more of the same to achieve the same pain relief. This can be a horrifying scenario for many neuropathy patients and it requires careful and thorough monitoring by both your specialist and your home doctor. You should never be issued an opioid prescription and be left to get on with it; they're not M&Ms. They are powerful and potentially addictive drugs which need careful handling. If you are in the position where your current opioid seems to be losing its power, then consult your doctor straight away; don't wait until you are totally dependent and don't ever try to go cold turkey. With careful handling, you should be able to move onto another sort of opioid but the after-care and medical control is vital.
'Why am I being given antidepressants for my neuropathy?'
That's a very good question and one which every neuropathy patient should ask their doctor. Almost as far back as the Second World War, there has been an accepted course of treatment for neuropathy and there are roughly 10 drugs which can be tried until something works (or doesn't).
- You start with 'normal' analgesics, most of which you can buy over the counter
- Then you move on to anti-depressants (either Selective Serotonin Reuptake Inhibitors (SSRIs) or Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)). Those names may not mean much to you but the most common antidepressants used for nerve problems are amitriptyline and nortriptyline (Aventyl, Pamelor), which were originally developed to treat depression. In theory these can reduce pain by interfering with chemical processes in the brain and spinal cord. In the second group of antidepressants (SNRIs) you will often see duloxetine (Cymbalta) prescribed but there are others in both groups. The problem is the potential for side effects (nausea, drowsiness, dizziness, constipation and lack of appetite) and many people find these worse than the neuropathy symptoms themselves.
- If the anti-depressants haven't worked or been effective enough (and unfortunately this is true for most neuropathy patients) then you will probably be moved on to anti-convulsants, or anti-seizure medications (drugs meant for epilepsy). These include; gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) but once again, the side effects can be a big problem. These drugs work on the sodium channels and neural signals in the brain and spinal cord. If you're having problems with a drug, don't keep going because you don't want to complain; discuss it with your doctor. By the way, Pfizer, the makers of Lyrica, have withdrawn their own promotion of the drug for diabetes and HIV-related neuropathy because a) it has been proved to be largely ineffective and b) they were being confronted with more and more court cases thanks to the side effects. When a major drug company withdraws positive advice for its own money-spinner, you should take note, despite what your doctor may say.
- If the anti-convulsants haven't worked then your doctor may well ask you to try a number of other treatments before moving on to the serious stuff. These include lidocaine patches, capsaicin patches (based on chili pepper extracts); various supplements such as Acetyl-L-Carnitine and Alpha Lipoic Acid (there are many more) and even yoga, acupuncture and courses of exercise. Even marijuana is being recognised as being an effective neuropathic pain suppressor (depending on the laws of your area). These treatments should also not be taken lightly however, especially the patches, which the FDA hasn't approved and can cause painful burning if not applied properly.
Finally, if all else has failed, you may be put onto drugs from the opioid family such as Tramadol, Oxycontin, Tapentadol and morphine. The previous question above talks about how these should be approached and it cannot be overstated that you need help both beginning these drugs and coming off them if you need to. Constant monitoring of progress is essential to avoid addiction and unnecessary suffering from side effects. Your doctor should do this but if possible, get your specialist to double check; you should never be allowed to plot your own course through opioids. They will however, work if used properly but remember, if your pain is much less, it doesn't mean that your neuropathy is being cured, it just means that the symptoms are being suppressed by the drugs.
'I'm at the end of my tether. I've tried everything and nothing takes the pain away completely. What can I do?'
I wish that I could offer you more than platitudes but at this moment in time, the drug companies are working very hard to develop new treatments for neuropathy. They have finally woken up and recognised the scale of the problem and have realised that using drugs meant for other diseases is like putting a plaster onto a severe injury; it can only be a temporary and unsatisfactory solution. Furthermore, they have realised that finding effective treatments for neuropathy will be a huge money-spinner and without being cynical, that's their bottom line. Consequently, extensive research is being done at molecular, cellular and even at DNA level to discover how nerve pain actually works and what can be done about it. The bad news is that it will be some years before anything gets onto the chemists' shelves and is available for most patients. Quite rightly, all new treatments have to go through assessment procedures, trials and approval from medical authorities before they can be deemed safe for the public. It's frustrating but better that than serious mistakes.
In the meantime, if all the accepted treatments have failed, you do unfortunately have to learn to live with neuropathy, and the way it's affecting your life, in the best way you can; but you're not alone and there are many strategies which you can try to relieve your symptoms. Following the links below will provide you with lots of information to do just that. What you need to remember is that everybody reacts differently to current neuropathy treatments; what may work for one will not work for another. You need to plough your way through the minefield until you find a single drug, or combination of drugs, supplements and alternative treatments that will help you.
If, despite all your best efforts, like the questioner above, you're still plagued by almost unbearable symptoms, you need to get support from your specialists, your doctors, your families and your friends. You may not look ill from the outside but you need to convince people that you have a serious problem and that occasionally you need a listening ear, or a hug or a good chat to unburden yourself. You may be surprised; people may not be able to feel your pain but they can be amazingly empathetic at times. Neuropathy support groups and forums may help fill in the gaps.
Further information (there are many more sites -- just Google and see)
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.