It is probably best to be brutally honest here: neuropathy is essentially nerve damage and as of writing, there is no cure for nerve damage and nerves where the cells are dead cannot be repaired. Anyone who claims to be able to "cure" your neuropathy is exaggerating at best!
That said, many of the worst aspects of neuropathy, and that means the symptoms, can be helped or alleviated, so that life becomes more bearable. Doctors may also tell you that some forms of neuropathy can be cured but that means that the cause of the neuropathy may be curable and if the neuropathy is not very advanced, the nerves can theoretically regenerate as long as the nerve cells themselves are not destroyed. In general though, HIV-related neuropathy can be made to feel better but it can't be taken away.
That's obviously not good news for those who are trying to think positively about their condition and are hoping, if not expecting, that it will eventually be cured. We are so used to taking a pill, or undergoing an operation to cure us of our illnesses, that it almost seems inconceivable that there's a disease that can't be completely cured. Then we remember that we also have to deal with HIV and although it's a cruel truth, neuropathy is just as difficult for the medical researchers to find a cure for. Two incurable diseases then ... no escaping it ... life's a bitch!
Okay, once you've got your head around that, you can move on and explore the many ways that neuropathic problems are currently treated and hope that one or more will work for you. After that, your optimism can kick in and you can evaluate your options with your doctors, and aim for a more comfortable life.
Step one involves finding a home doctor who will listen to your story and symptoms; will believe and sympathise with you and if not a specialist himself, will refer you to a neurologist. That may seem to go without saying but many neuropathy patients have to jump several hurdles and stamp their feet before they are taken seriously and this of course increases stress and causes unnecessary frustration ... not a good start to your treatment.
Let's assume that you've reached a specialist. If he's very experienced, he may listen to your story and make a diagnosis there and then (neuropathic symptoms are pretty much unique to neuropathy) but most will send you for a series of tests because illnesses need to be "officially confirmed" for all sorts of reasons, in order to try to establish the extent of the nerve damage.
At this point you should be aware that a large percentage of neuropathy patients emerge from the testing with inconclusive results, and the cause cannot be established although their suffering from neuropathy is not disputed. The condition is then referred to as idiopathic neuropathy and in the case of HIV-positive people, the cause is often assumed to be either the HIV meds or the virus itself (although it could easily be any of the other well-known causes). Most specialists will not expose you to further forms of testing; it's expensive and intrusive and will frequently also lead to inconclusive results.
Having been given a diagnosis of which sort of neuropathy you have, based on testing, whatever your symptoms are and the details of your experiences so far, the specialists seem to pretty much universally follow a standard series of medication treatments, until one is found which will alleviate your symptoms and these are discussed below. If you're lucky your HIV specialist may well be very experienced in dealing firsthand with HIV-related neuropathy, otherwise you may receive treatment from a neurologist or even your home doctor -- they nearly all follow the accepted sequence, if only because this has already been the way for decades and the disease is not known for innovative "light bulb" moments when it comes to medication.
In principle, any other underlying conditions are treated first, followed by symptomatic treatment for neuropathy.
You can read about the various options in much more detail by following the links at the end of this post. They can give you a much better explanation than I could ever do. What follows is a short summary.
Strange as it may seem, after you have been told to try the common, over-the-counter analgesics, (aspirin, ibuprofen, paracetamol etc.) which have little effect on nerve pain, you may commence treatment with an anti-depressant. (You may well need one at this point!) Amitriptyline is the most common starter drug to try to control the tingling, burning or dull pain most often in the feet and legs; closely followed by Nortriptyline. These are so-called TCAs (tricyclic antidepressants) and the intention is to inhibit painful signals to the brain but they do have side effects (like all anti-depressants).
If these don't work then your doctor may move on to SSRIs (selective serotonin reuptake inhibitors) which are basically another form of anti-depressant. Drugs like, citalopram, fluoxetine, fluvoxamine, paroxetine and sertraline are just some of the options.
If one of these doesn't help then the next step is to move on to try anti-convulsant medication (epilepsy drugs) which for reasons which are poorly understood can have a calming effect on neuronal activity. The most common of these are: carbamazepine and phenytoin, followed by a sort of second generation with fewer side effects such as: pregabalin (Lyrica), gabapentin, lamotrigine, levetiracetam, oxcarbazepine (a metabolite of carbamazepine), tiagibine, topiramate, and zonisamide. Carbamazepine, pregabalin and gabapentin are by far the best known of these but the side effects are still too much for many people.
I realise that lists of drug names and their drug classes have absolutely no meaning for most people but the likelihood is that you will meet one or more of these in the course of your treatment, and knowing what sort of drug they are will help you follow up with your own research later.
Remember, every drug you take may have an effect on your HIV medication -- always check with the doctor for potential clashes. It's a fact of life ... your HIV meds must come first.
It's also possible that at some stage you will be prescribed so-called topical anaesthetic therapies, which are delivered via patches or creams. Lidocaine and capsaicin (chili pepper component) are the commonest to tackle the pain more or less where you feel it, on the feet or wherever it is worst. High-strength capsaicin patches (Qutenza) can bring very promising results, although the treatment is not easy and not without discomfort at first. The benefits are that you're not swallowing chemicals every day and you only need a treatment every few weeks.
For many people, one or more of those drugs will be enough to make their neuropathy bearable but if none of the above have worked for you, or you can't get used to them because of the side effects, or if the pain has reached such a level that they are just ineffective, you may be advised to move on to stronger medications such as opioids. Doctors will begin with relatively low doses of opiates like oxycodone, or tramadol and they may well take the edge off your pain but very often, higher doses are needed to mask the pain completely. The problem is that the body eventually needs more to achieve the same effect and they are potentially very addictive with all the associated side effects that brings. If you're taking opiates, you need a doctor who will keep an eye on your progress and not let you become addicted and believe me, that's easier than you think.
The side effects of neuropathy treatment drugs lead many people to explore other options to help with their pain. Many doctors will advise physical therapy but mainly because they feel they should, especially due to the fact that inactivity through pain can lead to muscle wasting and weakness but many patients find it almost impossible to keep it up -- the discomfort is just too great. Psychological therapy may also help but is often required to treat the side effects of the drugs, or the desperation many people feel when the drugs just aren't working. Many patients may try yoga, acupuncture, biofeedback, relaxation techniques, hypnosis, imagery, or a host of other meditative techniques to help reduce tension and help the mind to deal with the symptoms of neuropathy.
Many clinics and neurology departments also offer techniques involving electrical stimulation, ranging from TENS (transcutaneous electrical nerve stimulation involving applying small amounts of electrical stimulation to the skin) to invasive surgery using spinal cord stimulators and surgery on the nerves themselves. However, with no guarantees of success, these can be expensive and/or last-resort treatments.
Finally, encouraging research is finally being done in the field of nutrients and supplements, especially in the area of B-vitamins, anti-oxidants and co-enzymes such as acetyl L-carnitine and alpha lipoic acid. Again, every patient reacts differently and what works for one is useless for another, but the evidence is mounting that several of these supplements can play an active role in helping with the symptoms.
Every individual is different and responds differently to the various treatments available and many people respond well to a particular drug or therapy. If only it were possible to take one form of neuropathy and apply a standard treatment to it with a reasonable chance of consistent success! Unfortunately, it doesn't work that way; the symptoms may be similar but its effects are pretty much unique to its sufferer, as are the treatments that are applied to it. The absolute minimum we can hope for from our doctors is sympathy, a constructive approach to treatment and on-going support as we move through the various stages of the disease. Without those basic elements, neuropathy can be a very lonely disease and its effects can limit your life more than you ever imagined. Support from your doctors, family and friends, both physical and emotional, can make its worst effects more bearable and give you a positive outlook regarding dealing with the disease but it's not easy for anyone involved.
The specific links which follow provide much more detail regarding the general treatment of neuropathy and many of the other posts on my blog Neuropathy and HIV cover individual drugs, therapies and alternative treatments. It is strongly advised to do as much research into your own neuropathy experience as possible; only then, (after discussions with your medical professionals) can you make informed decisions.
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.
Arriving here is 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.