Information blog for people suffering from both Neuropathy and HIV. An opportunity to exchange experiences, tips and opinions.
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Unfortunately, many HIV patients have taken to drinking over the years and given the pressures of having HIV plus maybe other health problems, it's perhaps understandable. No judgements here! However, one of the results of heavy drinking can be neuropathy and as we all know, once it becomes established it's difficult to turn back the clock, both for the alcohol addiction and the neuropathy itself. In fact, neuropathy may make the drinking more attractive as people try to escape the symptoms! This article, written by a doctor Neill Neill Phd in answer to a patient's question(see link below) throws some light on the subject but the fact remains, once alcohol abuse has brought on the nerve damage, the story is the same as for most neuropathy patients. HIV patients should try to avoid heavy drinking if at all possible - they already run a big enough risk of getting neuropathy through the medication or the virus itself.
Alcoholic Neuropathy: Symptoms
Excessive drinking, usually over years, can lead to nerve damage. The first sign of nerve damage may be in numbness or tingling in the hands, legs and feet. Ulcers or sores may develop on the legs and feet. There may be pain or burning sensations in the feet, or cramps in the calf muscles. The leg muscles may waste, leading to leg weakness and frail ankles. Alcoholic neuropathy often shows up first as clumsiness and uncoordinated movement.
Furthermore, there may be confusion, memory loss, speech slurring or incoherence, even when sober.
Nerve damage can be anywhere in the body. It may lead to incontinence or male impotence. In some cases, there is damage to the autonomic nervous system, which, among other things, affects heart rate and breathing.
If he or she is a heavy drinker, it is irrelevant whether he is a functioning alcoholic or a skid-row alcoholic. Symptoms of alcoholic neuropathy in a heavy drinker are also signs and symptoms of advanced alcoholism.
Caution
Diabetic neuropathy has some of the same symptoms as alcoholic neuropathy. Furthermore, alcoholics have an increased risk of diabetes. Only your medical doctor has the knowledge and skills to make the differential diagnosis and make a referral to a specialist for a neurological exam. Your doctor may detect signs of neuropathy, which the patient cannot.
Alcoholic Neuropathy: Treatment
Abstaining from alcohol and eating a balanced diet may alleviate some of the symptoms, if the damage is not too extensive. There are prescription meds that can further reduce neuropathic pain.
One can only hope that most alcohol abusers will recognize they have a problem and deal with it long before it reaches the stage of alcoholic neuropathy.
We know that neuropathy is a disease of the nervous system and have a rough idea that it's to do with the disruption, or breakdown of signal paths, thus creating all the symptoms that we're well aware of - short circuits in the system, that sort of thing. However, what do we really understand when we are told we have a neurological disease? What do the nerves actually do and why do they stop working as they should wwhen we get neuropathy?
This article from Medifocus Health (see link below)gives an excellent explanation of exactly how the various nerves in our bodies work and what goes wrong when we suffer from neuropathy. Very much worth a read.
The Nervous System
The nervous system controls the smooth functioning of all systems in the body as well as all interactions between the human being and the environment. It consists of two networks:
•Central nervous system - includes the brain and spinal cord
•Peripheral nervous system - includes the nerves that lead from the brain and spinal cord to all parts of the body. This is the system affected by peripheral neuropathy. There are two components to the peripheral nervous system:
◦somatic nervous system - regulates body movement through control of skeletal muscles and connects the brain to the outside environment through the five senses. It is the "voluntary" nervous system that enables people to react to environmental stimuli.
◦autonomic nervous system- controls automatic, involuntary functions including heart rate, blood pressure, breathing, digestion, and bladder function. This system is responsible for maintaining homeostasis, the state of equilibrium where all body systems are working and interacting correctly.
An extensive system made up of three types of specialized nerves makes up the peripheral nervous system:
*Motor nerves - carry messages from the brain to organs, muscles, and glands, and are responsible for the ability to move any part of the body. These are called efferent nerves. * Sensory nerves - carry information from organs (e.g., the skin) to the central nervous system where it is processed into sensation (e.g., touch, temperature changes, and vibrations). These are called afferent nerves. * Autonomic nerves - control involuntary functions such as heart rate, digestion, respiration rate, and perspiration.
Each peripheral nerve cell (neuron) in the human body has three parts:
•Cell body (also called soma), which is similar to the cell body of all other cells.
•Dendrites - fibers of varying sizes which extend from the cell body and are the sensory terminals of the neuron. They receive messages from neighboring cells and transmit them to the cell body.
•Axon (also called a nerve fiber) - a long slender projection that extends from the cell body and transfers a signal from the cell body to another nerve or muscle cell. Axons can be either myelinated (insulated by the myelin sheath made up of specialized cells) or unmyelinated. The presence or absence of myelin affects the speed of transmission of impulses; conduction speed is significantly faster in myelinated cells.
Nerve fibers may be either large or small.
Large Nerve Fibers
Large fibers are long nerve fibers that are myelinated and enable very fast conduction of impulses to the brain and spinal cord. They carry non-nociceptive information and are not normally associated with pain. Lesions or injury to large fibers can affect many functions including:
•Motor function
•Vibration perception
•Positional sense
•Perception of temperature
Symptoms associated with large fiber neuropathy include:
•Numbness
•Tingling
•Weakness
•Loss of deep reflexes
Small Nerve Fibers
Small nerve fibers may or may not be myelinated and each type involves different sensations. Regardless of whether or not they are myelinated, they contain nociceptors which are highly sensitive to pain and paresthesia (abnormal sensations such as tingling, pricking, or burning).
Symptoms of small fiber neuropathy are many and include:
•Pain described as burning, stabbing, prickling, jabbing, or lancinating (piercing)
•Sensation of "broken glass", "burning sand", or "ice pick in the bone"
•Tight band-like pressure
•Insensitivity to heat and cold
•Autonomic dysfunction (malfunctioning of the autonomic nervous system)
While small fiber neuropathy may be caused by conditions such as diabetes or HIV, the cause of most cases of small fiber peripheral neuropathy is unknown and is called idiopathic peripheral neuropathy. It is estimated that an underlying cause for small fiber neuropathy is found in less than 10% of patients. Small fiber neuropathy is the most common type of PN in people over the age of 50 and is often unrecognized by physicians. It is very painful to the point of being debilitating and responds slowly to medication, if at all.
In peripheral neuropathy involving both large and small fibers, small fiber damage usually precedes large fiber dysfunction and occurs typically in the lower limbs.
Everywhere you look for information about neuropathy, whether it be on information sites, advertisements for private clinics and practices or the many forums where people exchange experiences, you will come across some strange names for complementary treatments. TENs, FREMs, MFT, ATS,acupuncture, biofeedback and massage treatment, are all widely mentioned on the Internet. There are a lot of people, especially in North America, who undergo these treatments with apparent success, although I wonder once more; if they're so effective, why aren't they standard practise for neurologists? Anyway, today's post from Medifocus health (see link below) examines some of the most commonly seen complementary treatments and describes in simple terms what they are.
Treatment Options for Peripheral Neuropathy
There are no studies to prove the efficacy or safety of most complementary and alternative therapies in the treatment of peripheral neuropathy. It is important that individuals notify their health care provider if they are using any alternative therapies no matter how insignificant or benign they may seem. Various complementary therapies have been used to help manage discomfort and anxiety of peripheral neuropathy, although not all of these therapies are approved by the U.S. Food and Drug Administration (FDA). Treatments include:
•Transcutaneous electrical nerve stimulation (TENS) - Also known as electrotherapy, TENS has been shown to be effective in reducing localized pain and discomfort for the duration of treatment in diabetic peripheral neuropathy. Electrodes connected to the portable TENS unit are placed on the skin. Electric signals are then sent to the painful area, blocking or "interrupting" pain signals before they reach the brain. Pain reduction is experienced in up to 80% of patients and some data indicates that when amitriptyline is administered in conjunction with TENS therapy, pain reduction is noted in up to 85% of patients with diabetic peripheral neuropathy. Treatment is reported to be effective even when used over a prolonged period. Various TENS stimulators have been approved by the U.S. Food and Drug Administration (FDA).
•Frequency-modulated electromagnetic neural stimulation (FREMS) - In a study involving 31 patients with diabetic peripheral neuropathy, FREMS was applied to the lower extremities of each patient using four electrodes that were stimulated for 30 minute sessions, with ten treatments over a six week period. Results indicated a significant reduction in pain, a significant increase in sensory tactile perception, an increase in motor nerve conduction velocity, and an increased sensation of foot vibration for at least four months. For more information about FREMS, please view the following link: http://www.ncbi.nlm.nih.gov/pubmed/15834546
•Magnetic field therapy (MFT) - MFT involves the use of magnets which may be taped or placed over the over the area of pain in patients with peripheral neuropathy. The mechanism of action of MFT is not understood. One possible explanation of its beneficial effect on the body is its ability to change the alignment of the body's electromagnetic fields. In a study investigating the use of special magnetized insoles for patients with diabetic peripheral neuropathy, encouraging results were noted. To read more about this therapy, please click on the following link: http://www.ncbi.nlm.nih.gov/pubmed/12736891
•Acupuncture - Acupuncture has provided relief for some patients, although the benefits tend to be short term and frequent treatments may be required.
•Biofeedback - Biofeedback is a technique that teaches individuals how to deal with pain by learning to divert their attention or to perceive the pain differently. It is also useful in increasing the temperature of hands and feet. This is a safe treatment method that can be very effective for some patients.
•Relaxation/Massage therapy - Apprehension or anxiety about neuropathic pain may be alleviated by massage therapy for some patients.
•Anodyne Therapy System (ATS) - ATS is a near-infrared medical device that may bring relief to patients with diabetic and non-diabetic peripheral neuropathy through improving circulation. Pads containing infra-red photo energy heat are placed on the skin over the affected area. The energy penetrates into the skin and the patient feels relief. Patients with painful neuropathy report an improvement in balance, sensation in their feet, and reduction of pain. Anodyne therapy has been approved by the FDA since 1994 and is used also in the physical therapy setting. While an article appearing in 2004 in Diabetes Care (vol.27(1):168-72) indicated that there was benefit to anodyne therapy, another article published in 2008 in Diabetes Care (vol.31(2):316-21) indicated that there was no difference between anodyne therapy and a sham procedure.
•Rebuilder device - This is an FDA-approved device that sends nerve stimulation signals through the limbs via a pad placed over the affected area resulting in increased circulation, rebuilding of nerves, and strengthening of muscles. The device can be used with a wet (limb immersed in water) or dry option.
For a review of electrotherapy treatment for the management of painful diabetic neuropathy, please view the following link: http://www.ncbi.nlm.nih.gov/pubmed/20461329
You may well have read about certain surgical procedures for neuropathy; especially for releasing trapped, or pinched nerves. However, surgery for peripheral neuropathy was generally thought to be unworkable. Peripheral nerve surgery as described below, is based on nerve decompression procedures, the aim of which is to restore nerve sensation and relieve pain. However, it must be done early because if the nerve fibres are already dying the chances of restoration are slim. This article comes from the New Jersey Peripheral Nerve Surgery Restoration team (see link below) and describes clearly what's involved. I'm not sure if this is regarded as experimental surgery, or is accepted practise...maybe someone can supply more information?
Peripheral Nerve Surgery By Wendy Sweet
As featured in Tucson Lifestyle, January 2005
Peripheral nerve surgery - it's not a term that just rolls off your tongue. But if you or someone you know suffers from pain in your feet or joints, peripheral nerve surgery could be a life changing experience. As many people with diabetes can tell you from first hand experience, one of the most common complications of diabetes is neuropathy -- which affects the peripheral nerves and leaves you with numbness or tingling in your fingers or toes.
One local team of physicians believes that they have the answer for peripheral nerve problems.
The Cause...the Cure?
Peripheral nerve surgery is the brainchild of A. Lee Dellon, M.D, the director of the Institutes for Peripheral Nerve Surgery in Tucson and Baltimore. A professor of plastic and neurological surgery at Johns Hopkins University and a clinical professor of plastic surgery, neurosurgery and anatomy at the University of Arizona, Dr. Dellon has pioneered nerve decompression procedures to restore sensation and relieve pain in the lower extremities, especially in patients with diabetic neuropathy.
"Peripheral nerves are all the nerves in the body that are outside your brain and spinal cord," explains Dr. Dellon. "These nerves give us feeling in our hands, feet and face. They are how we interface with our environment; these nerves tell us about movement and pressure, hot and cold and pain. A disease that affects peripheral nerves can be called a neuropathy," he says. "If the nerve is choked or pinched, it doesn't get enough oxygen. The nerve makes you aware of this lack of oxygen by sending you a warning message. The symptoms of neuropathy can be pain, a tingling or buzzing sensation or numbness. The most common cause of neuropathy is diabetes."
However, Dr. Dellon is quick to point out that diabetes is not the only cause. "Other diseases that can give you neuropathy include thyroid problems, vitamin deficiencies, alcoholism, and some kinds of arthritis. Some of the chemotherapy drugs given to cancer patients can also cause neuropathy " particularly Taxol and compounds that contain platinum," he notes. There are also many patients with an undetermined cause. "In the United States there are equally as many people with neuropathy of unknown cause (known as idiopathic neuropathy) as those with diabetes," he states.
"The mantra of doctors used to be neuropathy is progressive and irreversible," says Dr. Dellon. A patient would be given drugs to deal with the problem, he says, adding the drugs had their own side effects and monetary cost. "I was a hand surgeon, and I would treat diabetics with carpal tunnel syndrome. Afterwards, the patient would say - 'My hand feels great. Can you do the same for my feet?' And I would say no that's peripheral neuropathy, and I can't help you. Then one day, I decided, why not see if we can restore sensation and reduce pain in the feet?" That was about 20 years ago, and this physician says he has been successfully treating patients ever since.
Dr. Dellon, who says he has operated on more than 15,000 nerves in the past quarter of a century, has written three books and is in the process of writing his fourth. He has also published more than 340 scientific articles and has written 50 chapters in other author's books.
How the surgery works
Dr. Dellon compares nerve decompression to loosening your belt after a big meal to make room for dessert. "With this surgery, we open tight tunnels in the body that are usually pushing the nerve against the bone. We make a straight cut over where the compressed nerve is and release the tight area through which the nerve passes by dividing a ligament or fibrous band that crosses the nerve. This gives the nerve more room, allows blood to flow better in the nerve and permits it to glide with movements of nearby joints. The surgery takes about two hours and is done as an outpatient procedure," he says. As with any surgery, there are risks. "The biggest risk is the risk of anesthesia," he states. "There will be a scar, and diabetics have to have enough circulation in their feet to promote healing (for the surgery to be successful)." There are also the risks of bleeding and infection. In addition, "if the patient does too much walking too soon, the stitches may tear out."
You must have this type of surgery done soon enough for it to help, Dr. Dellon stresses. "When the surgical decompression is done early in the course of nerve compression, restoration of blood flow to the nerve will stop the numbness and tingling, and permit strength to recover. When the decompression is done later in the course of nerve compression, and nerve fibers have begun to die, decompression of the nerve will permit the diabetic nerve to regenerate. If you wait too long to decompress the nerve, recovery may not be possible," he explains. "If you already have ulcerations on your feet, or have lost toes, then very little sensation may be recovered because the damage to the nerve has become irreversible."
"If you have symptoms, you should have neurosensory testing (which measures the degree of sensory and motor loss). It is non-invasive and not painful," Dr. Dellon relates. "The American Diabetes guidelines say every diabetic should have sensory testing once a year to know if they have neuropathy and are at risk for ulcers and amputations. If your doctor cannot provide the testing, you can have it done here at the Institute." In fact, Dr. Dellon has developed the Pressure-Specified Sensory Device to do such testing. "This is done with a computer and does not hurt because there are no needles and no electric shocks," he says.
As to the effectiveness of peripheral nerve surgery, Dr. Dellon states, "Overall, about 80 percent of those diabetic patients who have had a nerve decompressed have had decreased pain and improved sensory and motor function," he says. Because sensation is restored to the bottom of the feet, balance also is improved. Peripheral nerve surgery can also result in lower health care costs, according to Dr. Dellon. "Patients can take less pain medication. Because they get their balance back, they don't fall and break their hips. They're not admitted to hospitals for infections."
If you have just been told you've got neuropathy, it can be a confusing time and your first, second or third, visits to the neurologist or HIV consultant regarding the disease, can be over before you know it and before you can absorb the details of what's happening to you. Instead of sitting in the chair and waiting for the doctor to feed you information, why not be a little more pro-active and have some questions pre-prepared before you go in?
This article from Healthcommunities.com(see link below) provides you with a list of pertinent questions you can print out and take with you to your appointments. You don't have to ask them all but select those which you really want to know the answers to. There probably won't be time to answer them all either but at least you'll know what to ask next time. Don't think you're putting the doctor on the spot; he or she, will be happy to have a structured set of questions to answer and you won't feel panicked into rushing from one subject to the other, or forgetting what you really wanted to say.
Patient Information about Neuropathy
Neuropathy, also called peripheral neuropathy, is a condition caused by nerve damage. Neuropathy can affect movement, sensation (e.g., temperature, pain, touch), and functions, such as breathing and digestion.
Peripheral neuropathy can occur with no known cause, but the disorder often is associated with diabetes (called diabetic neuropathy) and other medical conditions. Neuropathy can result in neuropathic pain and chronic numbness, tingling, and weakness.
Here are some questions to ask your doctor (e.g., neurologist) about peripheral neuropathy. Print this page, mark the questions you would like to have answered, and bring it with you to your next appointment. The more you know about neuropathy, the better you will be able to make informed decisions about your condition.
Questions to Ask Your Doctor about Neuropathy
•What do you suspect is the underlying reason for my neuropathy?
•Might my peripheral neuropathy be related to an undiagnosed condition, such as diabetes?
•What are other common risk factors for developing neuropathy?
•What are the most common signs and symptoms of neuropathy?
•What should I do if my condition worsens or I experience new symptoms?
•How will you determine for sure if I have peripheral neuropathy?
•What types of diagnostic tests will be performed?
•How should I prepare for these tests?
•Is the underlying cause for my neuropathy curable? Is it treatable?
•How will my condition be treated?
•What are the benefits, risks, and possible complications of this treatment?
•Will my neuropathy be treated with prescription medications? If so, how will these medicines be administered?
•What are the side effects of these drugs?
•What should I do if I experience severe medication side effects?
Telephone number to call:
•If left untreated, what are the possible complications of peripheral neuropathy?
•If prescription medicines are ineffective, what other treatment options are available?
•Might any alternative treatments be effective? If so, what do these treatments involve?
•Can you recommend any resources for support or additional information for people who have neuropathy?
•Next appointment:
Doctor: Date: Time:
Telephone number to call:
Physician-developed and -monitored.
Original Date of Publication: 31 Mar 2009
Reviewed by: Stanley J. Swierzewski, III, M.D.
Last Reviewed: 31 Mar 2009
Last Modified:19 Jul 2011
When you're running an information blog like this one, it's so easy to forget that many people arrive here for the first time and are looking for basic information but won't go trawling through the previous posts to find it. For that reason, it's important to repeat the basic information every now and then although in different words and by different authors. This post neatly sums up the three sorts of neuropathy sent to plague us and comes from the Canadian Neuropathy Association and is written by The Cleveland Clinic Foundation (see link below). New, or repeat visitor, there may be something new for you here.
PERIPHERAL NEUROPATHY
The term peripheral neuropathy describes a problem with the functioning of the nerves outside of the spinal cord. The symptoms of a neuropathy may include numbness, weakness, burning pain (especially at night), and loss of reflexes. The pain may be severe and disabling.
There are many possible causes of peripheral neuropathy. Some of the most common causes include repetitive activities such as typing or working on an assembly line. In this case, the neuropathy may be isolated to the upper extremities, such as with carpal tunnel syndrome.
Pressure on a nerve can cause a peripheral neuropathy. For example, pressure on a nerve that comes out from the groin to the skin in front of the upper thigh can cause burning and tingling in this location. This particular problem is called meralgia paresthetica and can be caused by wearing a tight belt or other restrictive clothing. Additionally, it can result from being overweight or pregnant.
Many illnesses can result in peripheral neuropathy. Some examples include diabetes, syphilis, AIDS, and kidney failure. Other causes include nutritional deficiencies, such as B-12 and folate deficiency, medications and chemical exposures. Medications known to cause peripheral neuropathy, include several AIDS drugs (DDC and DDI), antibiotics (metronidazole, an antibiotic used for Crohn's disease, isoniazid used for TB), gold compounds (used for rheumatoid arthritis), some chemotherapy drugs (such as vincristine and others) and many others. Chemicals known to cause peripheral neuropathy include alcohol, lead, arsenic, mercury and organophosphate pesticides.
Some peripheral neuropathies are associated with diseases which are inherited (hereditary). Others are related to infectious processes (such as Guillian-Barre syndrome).
MONONEUROPATHY
Mononeuropathy is damage to a single peripheral nerve.
Physical injury is the most common cause of a mononeuropathy. Often, the injury is caused by prolonged pressure on a nerve that runs close to the surface of the body near a bony prominence, such as a nerve in an elbow, a shoulder, a wrist, or a knee. Pressure on a nerve during a long, sound sleep (especially in alcoholics) may be prolonged enough to cause damage. Pressure may result from a misfitting cast, improper use of crutches, or staying in a cramped position for a long time, such as when gardening or when playing cards with the elbows resting on a table. Damage due to pressure may also occur in people who are under anesthesia for surgery, in those who are bedridden (particularly older people), and in those who are paralyzed.
Less commonly, strenuous activities, accidents, prolonged exposure to cold or heat, or radiation therapy for cancer may also damage a nerve. Repeated injuries, such as those due to tight gripping of small tools or to excessive vibration from an air hammer, can also damage nerves. Infections, such as leprosy and Lyme disease, may destroy a nerve, causing mononeuropathy. Cancer may cause mononeuropathy by directly invading a nerve. Some toxic substances and some drugs can cause mononeuropathy.
Certain peripheral nerves are more vulnerable to injury. Examples are the median nerve in the wrist, resulting in carpal tunnel syndrome, the ulnar nerve in the elbow, the radial nerve in the upper arm, and the peroneal nerve near the knee.
When the Foot's Asleep
A sleeping foot can be considered a temporary neuropathy. The foot falls asleep when the nerve supplying it is compressed. Compression interferes with the blood supply to the nerve, making the nerve give off abnormal signals (a pins-and-needles sensation), called a paresthesia. Moving around relieves the compression and restores the blood supply. As a result, nerve function resumes, and the pins-and-needles sensation stops.
AUTONOMIC NEUROPATHY
Autonomic neuropathy is a group of symptoms caused by damage to nerves that regulate blood pressure, heart rate, bowel and bladder emptying, digestion, and other body functions.
Autonomic neuropathy is a form of peripheral neuropathy. Autonomic neuropathy is a group of symptoms, not a specific disease. There are many causes.
Autonomic neuropathy involves damage to the nerves that run through a part of the peripheral nervous system. The peripheral nervous system includes the nerves used for communication to and from the brain and spinal cord (central nervous system) and all other parts of the body, including the internal organs, muscles, skin, and blood vessels.
Damage to the autonomic nerves causes abnormal or decreased function of the areas connected to the problem nerve. For example, damage to the nerves of the gastrointestinal tract makes it harder to move food during digestion (decreased gastric motility).
Damage to the nerves supplying blood vessels causes problems with blood pressure and body temperature.
Autonomic neuropathy is associated with the following:
Alcoholic neuropathy * Diabetic neuropathy * Parkinson's disease * Disorders involving sclerosis of tissues * Surgery or injury involving the nerves * Use of anticholinergic medications * Symptoms
Swollen abdomen * Heat intolerance, induced by exercise * Nausea after eating * Vomiting of undigested food * Early satiety (feeling full after only a few bites) * Unintentional weight loss of more than 5% of body weight * Male impotence * Diarrhea * Constipation * Dizziness that occurs when standing up * Blood pressure changes with position * Urinary incontinence (overflow incontinence) * Difficulty beginning to urinate * Feeling of incomplete bladder emptying * Fainting* Abnormal sweating
A post about a familiar topic today but at least with updated research results which seem to confirm the benefits of Qutenza patches. It had been suggested that the patches weren't any more effective than applying a small amount of Capsaicin but these trials show distinct improvements over the three months after application. Side effects? Unfortunately yes; for many people it can be a painful process. I hate that saying: 'No pain, no gain!'(Qutenza is still not approved in all countries)
Pooled Trial Results Suggest Capsaicin Patch Relieves Neuropathy Pain March 28, 2011
The pooled results of two clinical trials suggest that a skin patch with the chili pepper–derived chemical capsaicin could relieve HIV-related neuropathy pain by about 30 percent. These trial results, presented at the annual meeting of the American Academy of Pain Medicine (AAPM), were reported by the website Medpage Today.
Chili peppers and mustards have been used for centuries in topical balms to treat chronic pain. Only during the past few decades, however, have scientists figured out how capsaicin—the chemical that gives chilies their pungency—works as an analgesic: It depletes a neurochemical called substance P responsible for transmitting pain.
NeurogesX, based in San Mateo, California, has spent several years testing capsaicin in skin patches to treat a variety of chronic pain conditions. The company now has a skin patch made up of a gel containing 8 percent capsaicin, called Qutenza, which is approved by the U.S. Food and Drug Administration (FDA) to treat pain from shingles and from diabetic neuropathy. Qutenza is applied for one hour in a single application, and the pain-relief lasts for about three months.
NeurogesX has also conducted trials of Qutenza to treat HIV-related distal sensory polyneuropathy (neuropathy), a condition marked by nerve damage, which can cause pain, tingling and numbness in the extremities and sometimes lead to permanent disability.
“To date, medications used to treat neuropathic pain have yielded disappointing results in large randomized controlled studies among HIV-associated neuropathy,” Steven Brown, MD, from the AIDS Research Alliance in Los Angeles, told Medpage Today.
Brown, who presented the results of the two trials at the AAPM conference, also noted: “The only substances that have shown any impact on the pain appear to be the [Qutenza] patch, smoked cannabis and recombinant human nerve growth factor, but none of these treatments has yet been approved by the FDA for that use.”
Two clinical trials of Qutenza for HIV-related neuropathy conducted before 2008 had mixed results, with one showing improvements in neuropathy pain and another finding that Qutenza wasn’t significantly better than a gel patch containing a miniscule amount of capsaicin. A 2009 article in Wired magazine detailed how the placebo effect—whereby patients’ symptoms can significantly improve just by thinking they are getting a real medicine, even if they receive only a sugar pill—is particularly strong in trials of pain medication. This means that a medicine often has to be quite potent to show a statistical difference.
At the recent AAPM conference, Brown presented data on an analysis that pooled the results of two newer studies. The studies compared 239 people who received a single application of Qutenza (8 percent capsaicin) with 99 people who received a single application of a control patch containing only 0.04 percent capsaicin.
Brown and his colleagues found that those receiving Qutenza had a 27 percent decrease in their neuropathy pain compared with a 15.7 percent decrease in those who received the control patch. The improvement was highly statistically significant, meaning that the difference between Qutenza and the control was too large to have occurred by chance.
What’s more, when Brown’s team looked at those who received a higher degree of pain relief—a 30 percent or more reduction in pain scores—36 percent of those on Qutenza saw this higher level of relief compared with 22 percent on the active control.
The three-month improvement in neuropathy pain doesn’t come without side effects, however. David Walk, MD, of the University of Minnesota in Minneapolis, who has used Qutenza for non-HIV pain care, told Medpage Today, “This treatment can be painful. Even with the lidocaine that is delivered before the patch is applied, patients report some pain associated with the patch for as long as a week afterward, so we usually send them home with analgesia to cover that period.”
NeurogesX reports on its web site that it is still working to seek FDA approval for Qutenza for HIV-related neuropathy.
It's something your doctor may not have time to address but unless you have help from elsewhere, the psychological effects of neuropathy are easily underestimated, whilst contributing to making your life a misery. This article from Medifocus Health (see link below) shows what happens to many neuropathy patients, sometimes without them realising it themselves. It's very important to be aware of how quickly your mental state can change when you're continually under stress from ill health. If you're also HIV positive, these problems can become exaggerated and friends and family become more important than ever!
Psychosocial Considerations and Quality of Life Issues in Peripheral Neuropathy
"Quality of life" is a measure of how well patients adjust to their condition. It measures many factors related to living with a medical condition, including:
•Physical and material well-being
•Social relationships with other people (e.g., spouse, siblings, or friends)
•Social activities (e.g., helping others, getting together with other individuals or groups, community/religious involvement)
•Personal fulfillment (e.g., career, creativity, pursuit of intellectual interests)
•Recreational activities (e.g., sports or relaxation)
•Health status (perceived and actual)
A significant aspect of quality of life and ability to function daily is related to how individuals with peripheral neuropathy perceive themselves and regard their situation. Physical well-being has the greatest influence on a person's perceived health status and on most other measures evaluated in quality of life test scales.
Chronic neuropathic pain can be very debilitating and can affect several dimension of daily life as reflected in lower scores of quality of life scales including:
•Psychological health (e.g., depression, anxiety)
•Work-related problems (e.g., reduced levels of productivity, absenteeism)
•Sleep disturbances
•Feelings of isolation
•Sense of disappointment that expectations of recovery are not being met
Peripheral neuropathy affects a wide range of people and its impact on quality of life is closely related to the severity of this interference in daily life. In some people it is very debilitating and chronic, while others may be affected only intermittently with varying degrees of discomfort ranging from mild to severe. Pain management programs play an important role in teaching individuals how to live with their condition. These programs focus on pain control, as well as social and physical functioning, and emotional health. Another benefit of pain management programs is that they usually consist of several types of professionals, including psychologists or psychiatrists who can help monitor emotional status and try to prevent secondary conditions such as depression and withdrawal from society in individuals with peripheral neuropathy.
Depression is not uncommon in persons with peripheral neuropathy due to the chronic aspect of the pain, loss of function, emotional burden, and reduced quality of life. Some of the medications used to treat peripheral neuropathy are actually antidepressants and may help to control depression as well. However, it is very important that patients share feelings of depression with their health care providers so that they can be addressed appropriately. Support groups are helpful for many persons in coping with the pain and discomfort and its impact on daily life.
Response to medications is extremely variable and many patients try numerous types and doses of medications before finding one that brings some measure of relief. Some doctors and patients find that keeping a daily pain diary is a useful tool to monitor responses to medications and therapies so that changes or adjustments to patients' pain management programs can be implemented as needed. Response to monotherapy (one drug) is estimated to bring a 30-50% reduction in pain, at best. Multi-drug therapies that target different parts of the nerve pathways may be more effective. Although there are no clinical trials to date regarding multi-drug treatment of peripheral neuropathy, this strategy is often practiced by physicians.
This is more a general post explaining why HIV medication sometimes causes side effects and what they might be. Of course, neuropathy features strongly amongst those. It's from a U.K. site called 'Positive Gay Guide' (see link below)and is useful background information for any HIV patient.
Side effects of anti-HIV drugs
Side effects from anti-HIV drugs occur either because of an allergic reaction to the drugs, or because of the action of the drugs themselves. HIV enzymes that anti-HIV drugs target are similar to the enzymes your body needs to function normally. When you take anti-HIV drugs they don’t only inhibit the enzymes in HIV, they can also start to affect your body’s own enzymes causing unwanted side effects.
Anti-HIV drugs are very powerful, and so it takes time for your body to adapt to them. There are ways to cope with side effects when they happen. The most common side effects such as nausea or diarrhoea can be managed with anti-nausea or anti-diarrhoea medication. Another common side effect in the short term is a body rash, and this can often be managed with antihistamines. However, a rash can also be a sign of a more serious allergic reaction which we talk more about later on this page. For this reason, if you do get a rash you should go to see your doctor straight away.
Your doctor will use your regular blood tests to monitor you for a wide range of problems that anti-HIV drugs can cause, such as anaemia (which is a deficiency of red blood cells) and kidney or liver toxicity. If the drugs were causing any of these problems then they would be spotted during your routine appointments and blood tests.
Since most side effects disappear after a while many people decide to push through the first month or so, as long as the side effects are not too severe. Make sure you always tell your doctor about any side effects you experience since he or she will need to check that nothing serious is going on.
Obviously, if the side effects are too severe then you and your doctor would want to think about changing one or more of the anti-HIV drugs you are taking to a combination that you would find easier to tolerate.
We talk more about this in the section on changing treatment.
It’s important to note here that you should never just stop taking your anti-HIV drugs, even if the side effects are really bad, without the advice of your HIV doctor. He or she will be able to tell you how to change to a different combination with minimal risk of developing drug resistance to your anti-HIV drugs.
Drinking alcohol or taking certain recreational drugs can make side effects more severe. For instance, ecstasy can increase the levels of the protease inhibitors in your blood. This would increase the chance that you would experience severe side effects.
You can read more about alcohol and recreational drugs and how they can affect HIV and HIV treatment in the section on looking after yourself.
Severe allergic reactions
More serious side effects of anti-HIV drugs can be caused by allergic reactions to certain drugs. One of these is caused by abacavir in 4% to 8% of people who take it, and is known as a hypersensitivity reaction. There is now a genetic test which shows whether you are likely to get this reaction, although the test may not be available everywhere. If you are thinking of taking abacavir, ask your doctor about this test.
Abacavir hypersensitivity reaction usually occurs within the first 6 weeks of treatment, however it can occur at any time and so people taking abacavir are advised to carry a warning card in their wallets. All boxes of abacavir, Kivexa or Trizivir (which both contain abacavir) have a pull out warning card which you should carry with you.
The symptoms of hypersensitivity reaction get steadily worse over a few days and can include a rash, fever, gastrointestinal problems, nausea and vomiting. If you develop these symptoms after starting abacavir you should go to see your doctor immediately. If you were diagnosed with a hypersensitivity reaction then your doctor would ask you to stop taking abacavir. Once you have stopped taking abacavir you must never take it again. Taking abacavir again after you had a hypersensitivity reaction the first time can lead to a very quick and severe allergic reaction which can be fatal.
Metabolic changes
Metabolic changes refer to changes to certain chemical or physical processes used by your body, such as the way it converts fat into energy. Your doctor will keep an eye on certain indicators of metabolic changes each time you have your regular blood tests, such as your cholesterol levels.
It’s unclear why some people experience metabolic changes when taking anti-HIV drugs, however those that have been seen in people with HIV include high cholesterol, diabetes and insulin resistance, high blood sugar and high blood fats (which can be related to body fat changes, and we talk about these later on this page).
If your blood tests indicate that you are experiencing problems with metabolic changes, your doctor may recommend changing the combination of drugs you are taking to one that your body will be better able to cope with. Your doctor may also recommend that you alter your diet to help with problems such as high cholesterol or he may even suggest that you exercise more often.
You can read more about your diet and exercise in the section on looking after yourself.
Body fat changes
A long-term side effect that has been associated with certain anti-HIV drugs is lipodystrophy and lipoatrophy. Lipodystrophy is fat redistribution around the body, usually fat gain around the abdomen. Lipoatrophy is fat loss from parts of the body, often seen as facial wasting or wasting from the arms and legs. These side effects can often be managed with appropriate anti-HIV drug choices, however if you have resistance to some anti-HIV drugs your options may be limited and you may not be able to avoid the drugs that could cause lipodystrophy and lipoatrophy. Protease inhibitors have more commonly been associated with fat redistribution around the abdomen, whereas the NRTIs such as d4T, ddI and AZT have been associated with fat loss. However, other factors are also likely to contribute to lipodystrophy and lipoatrophy, including HIV infection itself.1
If you are having problems with lipodystrophy or lipoatrophy then you and your doctor could think about changing the combination of anti-HIV drugs you are taking. For example, it has been shown that men who have lost fat from their face because of taking the NRTI d4T can actually start to regain some of the lost fat when switching from d4T to abacavir, another NRTI.2
There are also reconstructive treatments for people with facial wasting. One of these is polylactic acid, also known as New Fill or Sculptra. This is given as injections into the areas on the face where fat has been lost, and it helps to stimulate collagen growth and increase the skin thickness. This is a very safe treatment, and has been shown to greatly improve the quality of life of men in a number of studies.3 However it’s not available everywhere on the NHS, and even where it is there could be a long waiting list. Speak to your doctor if you think you may be interested in finding out more.
Peripheral neuropathy
Another long term side effect of certain anti-HIV drugs is peripheral neuropathy. This is a painful condition caused by damage to the peripheral nerves, usually in the feet, legs and hands. It’s often described as feeling like burning pins and needles, and can range from mild tingling and numbness to very intense pain.
The drugs that have been associated with peripheral neuropathy are the NRTIs d4T, ddI and to a lesser extent 3TC, however peripheral neuropathy can also be caused by HIV itself. Alcohol and some recreational drugs are neurotoxins, meaning that they are toxic to the nervous system. Taking recreational drugs, such as amphetamines or cocaine, or drinking too much can make peripheral neuropathy worse.
If you do develop peripheral neuropathy from your anti-HIV drugs you and your doctor would want to change the combination of drugs you are taking if possible.
If you aren’t taking any of the drugs that are associated with peripheral neuropathy or the condition continues after stopping the drugs which could cause it, it may be that there’s another cause. Your doctor would probably do a blood test to check your vitamin B12 levels, as a B12 deficiency can cause neuropathy. It could also be HIV itself that’s the cause.
There are some treatment options available for peripheral neuropathy. The anti-convulsant drug gabapentin has been shown to improve the condition in some people, but not all. Other treatments include a low dose of amitriptyline, a drug normally used to treat depression, and acetyl-l-carnitine, an amino acid which may actually reverse the nerve damage seen in people with peripheral neuropathy. However, medical opinion is divided about how effective these and other treatments for neuropathy are. If you are experiencing pain from peripheral neuropathy that isn’t caused by any anti-HIV drugs you are taking, you could ask your doctor to refer you to a specialist neurologist who can investigate the causes further.
If you are in quite a lot of pain then you could also ask to be referred to a specialist in pain management or palliative care who will explore with you different ways to manage the pain you are in. It may be worth asking about trying a Transcutaneous Electrical Nerve Stimulator, more commonly referred to as a TENS machine. This passes a small electric current through your nerves and has been shown to be beneficial to people experiencing neuropathic pain.
You can find more information about the side effects of the specific anti-HIV drugs you are taking, or thinking of taking, on NAM’s website, Aidsmap.
This article throws light on what some major drug companies, or BioTechs are doing regarding neuropathy. It's difficult to say how accurate the information is but it's an interesting insight into the thought processes behind drug development. The article comes from an Australian daily digest of equity news (not normally your first port of call when investigating neuropathy!)See link below.
NEURODISCOVERY: CAREFULLY STRUCTURED WITH PROFITABLE ARM, FOCUSSED ON NEUROPATHIC PAIN RELIEF By Jenny Prabhu and Gerald Stanley
Biotechs, like explorers of metals and energy, run on news of the success or failure of their flagship drugs and the strength of their collaborations and are largely impervious to moves in the broad market - often becoming a focus of speculative investor interest at times when there is uncertainty on the direction of the other major sectors.
NeuroDiscovery which listed on August 15, has attractive credentials for an early stage biotech. NeuroDiscovery’s only business at this stage is NeuroSolutions, based in the University of Warwick, UK. NeuroSolutions has been self funding since inception in 2001. The business has two distinct arms - a profitable international service business (revenue of $A1.2 mil and net profit of A$350,000 to year end March 2005) and an R&D arm financed via its profitable service arm which has a potential neuropathic pain relief lead compound that works in oral form rather than needing to be injected.
Subject to discussions with regulators the company’s planned 2005 Phase 1 trial for its lead compound may proceed straight into a Phase II trial since the compound was previously shown to be non toxic (although ineffective in the treatment of inflammation). The company also has three other early stage compounds under development for neuropathic pain.
NeuroDiscovery is well known in the biotech world through its service arm since numerous high profile drug companies outsource their electrophysiology test work to NeuroSolutions.
NDL has a tight share structure (36.425 million shares of which only 13 million are tradeable, the rest are in escrow), a prestigious management team with international credentials, a very low cash burn rate and $2.4 million in cash.
Definition of neuropathic pain
Neuropathic pain does not generally respond to treatment with non-steroidal anti-inflammatory drugs. It is chronic pain that arises from damage to sensory nerves.
It includes pain arising from trapped or compressed nerves; drug induced nerve damage; diabetic neuropathy, post-herpetic pain, phantom limb syndrome following limb amputation; peripheral neuropathy and fibromyalgia as well as arthritis, including both rheumatoid arthritis and osteoarthritis.
Treatments
There are several products on the market for the relief of neuropathic pain, including Pfizer’s US$ 2 billion drug gabapentin, considered to be the “gold standard”, opioids like morphine (sedative and addictive),,non-steroidal anti inflammatory drugs (NSAIDs) (largely seen as ineffective) and cyclo-oxygenase II (COX II) inhibitors (the recent discovery that several of the leading COX-II compounds have unwanted cardiac related side effects created alarm). In addition there are injectable toxins under development.
This market report is provided in good faith from sources believed to be accurate and reliable.
OzEquities directors and employees do not accept liability for the results of any action taken on the basis of the information provided, or for any errors or ommissions contained therein.
This seems to be a case of constructive thinking based on current trends regarding combination therapies for neuropathy, by the Whyte Ridge Pharmacy (Specialty Compounding and Integrative Consultation Services - I know, I haven't a clue what that means either!) in Winnipeg (see link below for further explanation).
By using transdermal creams and applications which are compounds and combinations of various well-known drugs, they claim to avoid many of the side effects seen with drugs taken orally. I only have one question and maybe this shows my ignorance but I always thought that neuropathic pain was a brain-centred pain, so applying drugs, for instance, to the soles of the feet, where the pain seems to be...how does that affect the reaction of the brain to what is essentially, a broken signal?
Once again, their focus is on diabetic neuropathy but in this case the theory fits all.
Diabetic Neuropathy
Neuropathic pain includes a variety of conditions such as diabetic neuropathy, phantom limb pain, reflex sympathetic dystrophy (RSD or Complex Regional Pain Syndrome), and pain caused by blunt trauma or crushing injuries. Symptoms of neuropathic pain may not be evident for weeks to months after the injury. Optimal treatment may involve not only the use of traditional analgesics such as non-steroidal anti-inflammatory drugs (NSAIDs) and opioids, but may also include medications that possess pain-relieving properties, including some antidepressants, anticonvulsants, antiarrhythmics, anesthetics, antiviral agents, and NMDA antagonists. “Combination therapy is frequently the only effective approach for managing the complex array of chemical mediators and other contributors to the individual pain experience.”
“As topical formulations are developed, they provide hope for more effective drug combinations, with fewer systemic adverse drug effects and drug-drug interactions.”1 For example, research has shown that topically applied ketoprofen provides a high local concentration of drug below the site of application but decreases systemic exposure and significantly reduces the risk of gastrointestinal upset or bleeding. When properly compounded into an appropriate base, tissue concentrations of ketoprofen were found to be 100-fold greater below the application site (knee) compared to systemic concentrations.2 Sever disease is the most common cause of heel pain in pre-pubertal children. A case report described the use of topical ketoprofen 10% gel as an adjunct to physical therapy to relieve pain and inflammation.3
1 Advanced Studies in Medicine 2003 July;3(7A):S639
2 Pharmaceutical Research (1996) 13: 1; 168-172
3 Phys Ther. 2006 Mar;86(3):424-33
Neuropathy Foot Cream
The following testimonial appeared in the December 1999 issue of Neuropathy News, a patient newsletter:
“My local [compounding pharmacist] has created a cream to help alleviate the pain of foot neuropathy. It reduces the burning and sharp, needle-like pain. All you need is a very thin coat. The directions call for using it four times a day, but I find it particularly helpful at night. [The formulation contains] 2% amitriptyline and 2% baclofen in a transdermal gel.”
“Compounding pharmacists have the unique training and ability to create medications that address the individual needs of patients. One of the most helpful products they use are transdermal gels that allow for the passage of medication directly through the tissue into the area of pain. Many of the medications typically prescribed for neuropathy patients such as amitriptyline, lidocaine, mexilitene, ketamine and [gabapentin] can cause significant side effects when taken orally. Transdermal gel minimizes systemic side effects and maximizes local pain relief. Compounding pharmacists have many resources that offer relief from neuropathic pain.”
In Diabetes Interviews, January 2000, Neil A. Burrell, DPM, CDE, of Beaumont, Texas, writes “We have a very high success rate using amitriptyline and baclofen mixed in a gel component. This compound is applied to the feet three times per day, and offers immediate relief… [For] recalcitrant neuropathic pain, many times we use a combination of tramadol, gabapentin and amitriptyline.”
At our compounding pharmacy, we work together with physicians and patients to prepare formulations containing the medications and doses that are most appropriate to meet each patient’s specific needs. Let us know how we can be of service.
Arginine Transdermal
Diabetes Care, January 2004; 27(1):284-5
Improvement of Temperature and Flow in Feet of Subjects with Diabetes With Use of a Transdermal Preparation of L-Arginine – A pilot study
Eric T. Fossel, PHD
Strategic Science and Technologies, Wellesley, Massachusetts
PubMed PMID: 14694013 No abstract available.
Topical doxepin could be an alternative and relatively safe treatment in alleviating neuropathic pain in the diabetic patient, especially when the use of systemic treatment is contraindicated. In the following case study, the soles of the patient’s feet were treated with topical doxepin 5% twice daily for four weeks. The patient responded dramatically with loss of the severe burning sensation and no side effects reported.
Amna Al-Muhairi, MD, Tania J. Phillips, MD, FRCPC
The print version of this article was originally certified for CME credit. For accreditation details, contact the publisher. Tanya J. Phillips, MD, FRCPC, Boston University School of Medicine, Department of Dermatology, 609 Albany Street, J-106, Boston, MA 02118; Phone: 617/638-5540, Fax: 617/638-5552
A post with a difference today. Johnny Cash had diabetes-related, autonomic neuropathy - there's the connection; nothing more but how many celebrities do you know who have neuropathy? Be warned, it's not exactly a barrel of laughs!
Doctor Erickson from the Health and Wellness Center in Denver, Colorado again with a very clear explanation of how neuropathy actually feels and the three nerve types that are associated with the disease. He speaks rather quickly but I haven't found anybody who explains the science so simply and in language that's easy to understand. Definitely worth five minutes of your time.
The best advice concerning today's post is, a) the standard, 'make your own mind up' b) use it as a starting point for investigating homeopathic alternatives (there are plenty of sites to compare and evaluate) and c) consult a qualified doctor before taking most of the things mentioned here (many good homeopathic doctors are also doctors of medicine and many doctors of medicine have sympathy for homeopathic treatment). That all sounds slightly negative; it's not meant to be but I know what it's like when you're desperate for something to help - you read an article on the Net and take it as truth - it's seductive but it can be dangerous...but as experienced neuropathy patients, you know all this don't you!
Neuropathy Natural Remedies By Dave Card, who is a Natural Health Practitioner consulting clients in nutrition and supplements in Salt Lake City, Utah. (see link below)
Modern medicine may use opiate pain relievers (addictive and dangerous), anti-depressants, or anti-convulsion medications. These medications, while somewhat effective to alleviate symptoms of neuropathy, often don’t address the cause and may add to the toxic burden on the liver.
Natural solutions for neuropathy include examining a person’s medications, with their doctor, to look for drug causes or other more serious conditions. Most commonly, there is a vitamin deficiency and a lack of blood sugar control (diabetics).
Nutrition for Neuropathy
Start with 100 milligrams of Vitamin B-1 and 2000 micrograms of Methylcobalamin in conjunction with the following herb, cell salt and homeopathic remedies for neuropathy. Other nutrients should include about 400 milligrams of Alpha Lipoic acid as a powerful antioxidant containing blood sugar normalizing properties.
Natural Healing Protocol: Combining supplements will do more to support your body's ability to function properly than using just one. Use the following remedies for best results -- your ability to heal will depend on the severity and length of time your symptoms have been present.
Herbs are plants valued for their specific strengthening/ tonifying properties.
Cayenne cream or ointment (Dr. Christopher’s or other) – on affected areas for relief of neuropathy symptoms.
Gogi berries, a handful a day, eaten over several weeks may help to repair nerves.
A combination of the following herbs may prove helpful to strengthen and repair the nerves.
California poppy is used to calm nerve pains, and is anti-spasmodic as well, soothes nervousness and anxiety, and is mildly sedating.
Corydalis – diffuses energy to relieve pain better than most herbal products (without creating an addiction). It also helps with spasms and nerves.
Passion flower is an excellent nervine (for nerve calming and repair), and calming for the heart and nervous system.
Lobelia is primarily antispasmodic for the nerves, and both digestive and respiratory systems.
Prickly ash bark is used in small quantities to make herbal formulas work better. It is stimulant, and helps circulation and blood supply to the nerves.
To make a cell salt solution, put up to 10 tablets of each cell salt in a 16- to 24-ounce bottle; fill with water and swirl to dissolve tablets. Sip throughout the day.
#6 Kali phos 6X – for calming nerves nerve and repair
#9 Nat mur 6X – neuropathy from stress or grief
#12 Silicea 6X – for connective tissue weakness
Homeopathic remedies are non-toxic natural medicines safe for everyone including infants and pregnant or nursing women. You may use 6X, 30X, 6C or 30C potencies. Learn more about homeopathy >
Rhus tox (#1 Homeopathic for neuropathy) – pain and neuropathy symptoms worse at change of weather or in cold damp conditions, and while resting. Sensation as if walking on needles, burning, and cold water. Stiffness while resting, pain on first movement but better from continued motion. (Tin Man Remedy)
Aconite – numbness and tingling, especially left arm; shooting pains; icy coldness; limbs feel lame, bruised, heavy and numb; hot hands, cold feet; twitching; weak, lax, lame tendons.
Arsenicum album – severe weakness of limbs, twitching, spasms, heaviness; atrophy; sciatica; burning pains; restless feet, cramps, neuritis; person is restless and tidy, perfectionist; symptoms better from warmth.
Mercurius vivus – weakness and pains, especially at night; bone pains; trembling of hands with stiffness; fingers numb; temperature sensitive (very small temperature range of comfort).
Nux vomica – nervous irritability; cramps and spasms; weakness of liver; desires for stimulants; crawling sensation under skin; loss of strength in feet; digestive complaints, food sits like a rock in the stomach.
You may not automatically associate hospices with neuropathy patients; after all neuropathy, for all its painfulness, is not fatal. However, many aids patients have terrible problems with neuropathy in the last stages of their suffering and if you put that into the context of a South African hospice, it becomes more understandable.
You may be aware of much of this information but the overview it gives is thorough, clearly explained and accurate and if you're overwhelmed by the amount of information on neuropathy,you can never have enough of those!
Neuropathic Pain: A Patient Information Booklet Hospice Association of the Witwatersrand
Introduction
Neuropathic pain ('neuralgia') is a pain that comes from nerve problems. There are various causes. It is different to the common type of pain that is due to an injury, burn, pressure, etc. Traditional painkillers such as paracetamol, anti-inflammatories, codeine, morphine, etc, may help, but often do not help very much. However, neuropathic pain is often eased by antidepressant or anti-epileptic medicines - by an action that is separate to their action on depression and epilepsy. Other pain relieving techniques are sometimes used.
What is neuropathic pain?
Pain is broadly divided into two types - nociceptive pain and neuropathic pain.
Nociceptive pain - This is the type of pain that all people have had at some point. It is caused by actual, or potential damage to tissues. For example, a cut, a burn, an injury, pressure or force from outside the body, or pressure from inside the body (for example, from a tumour) can all cause nociceptive pain. The reason we feel pain in these situations is because tiny nerve endings become activated or damaged by the injury, and this sends pain messages to the brain via nerves. Nociceptive pain tends to be described as sharp or aching. It also tends to be eased well by traditional' painkillers such as paracetamol, anti-inflammatory painkillers, codeine, morphine, etc.
Neuropathic pain - This type of pain is caused by a problem with one or more nerves themselves. There is often no 'injury' or tissue damage that triggers the pain. However, the function of the nerve is affected in a way that sends pain messages to the brain. Neuropathic pain is often described as burning, stabbing, shooting, aching, or like an 'electric-shock'. Neuropathic pain is less likely than nociceptive pain to be helped by traditional painkillers. However, other types of medicines often work well to ease the pain (see below). The rest of this leaflet is just about neuropathic pain.
What causes neuropathic pain?
Various conditions can affect nerves and may cause neuropathic pain as one of the features of the condition. These include the following:-
• Trigeminal neuralgia
• Post herpetic neuralgia (pain following shingles)
• Diabetic neuropathy—a nerve disorder that develops in some people with diabetes
• Phantom limb pain following an amputation.
• Multiple sclerosis
• Pain following chemotherapy
• HIV infection
• Alcoholism
• Cancer
• Atypical facial pain
• Various other uncommon nerve disorders
• Infiltration or compression of nerves by a tumour
Note: you can have nociceptive pain and neuropathic pain at the same time, sometimes caused by the same condition. For example, you may develop nociceptive pain and neuropathic pain from certain cancers.
More about the nature of neuropathic pain
Related to the pain there may also be:
Allodynia. This means that the pain comes on, or gets worse, with a touch or stimulus that would not normally cause pain. For example, a slight touch on the face may trigger pain if you have trigeminal neuralgia, or the pressure of the bedclothes may trigger pain if you have diabetic neuropathy. Hyperalgesia. This means that you get severe pain from a stimulus or touch that would normally cause only slight discomfort. For example, a mild prod on the painful area may cause intense pain.
Paresthesia. This means that you get unpleasant or painful feelings even when there is nothing touching you, and no stimulus. For example, you may have painful pins and needles, or electric shock like sensations.
In addition to the pain itself, the impact that the pain has on your life may be just as important. For example, the pain may lead to disturbed sleep, anxiety and depression.
How common is neuropathic pain?
It is estimated that about 1 in 100 people in the UK have persistent (chronic) neuropathic pain. It is much more common in older people who are more prone to developing the conditions listed above.
What is the treatment for neuropathic pain?
Treatments include
Treating the underlying cause - if possible
Medicines
Physical treatments
Psychological treatments
Treating the underlying cause
If this is possible, it may help to ease the pain. For example, if you have diabetic neuropathy then good control of the diabetes may help to ease the condition. If you have cancer, if this can be treated then this may ease the pain. Note: the severity of the pain often does not correspond with the seriousness of the underlying condition. For example, postherpetic neuralgia (pain after shingles) can cause a severe pain, even though there is no rash or signs of infection remaining.
Medicines used to treat neuropathic pain
Painkillers - The usual 'traditional' painkillers may be tried at first such as paracetamol, anti-inflammatory painkillers, codeine, morphine, etc. These may help. If they do not, or only partially help, then a antidepressant or anticonvulsant medicine is usually advised.
Antidepressant medicines - An antidepressant medicine in the 'tricyclic' group is a common treatment for neuropathic pain. It is not used here to treat depression. Tricyclic antidepressants ease neuropathic pain separate to their action on depression. It is thought that they work by interfering with the way nerve impulses are transmitted. There are several tricyclic antidepressants, but amitriptyline is the one most commonly used for neuralgic pain. In many cases the pain is stopped, or greatly eased, by amitriptyline. Imipramine and nortriptyline are other tricyclic antidepressants that are sometimes used to treat neuropathic pain. A tricyclic antidepressant may ease the pain within a few days, but it may take 2-3 weeks. It can take several weeks before you get maximum benefit. Some people give up on their treatment too early. It is best to persevere for at least 4-6 weeks to see how well the antidepressant is working. Tricyclic antidepressants sometimes cause drowsiness as a side-effect. This often eases in time. To try and avoid drowsiness, a low dose is usually started at first, and then built up gradually if needed. A dry mouth is another common side-effect. Frequent sips of water may help with a dry mouth. See the leaflet that comes with the medicine packet for a full list of possible side-effects.
Anti-epileptic medicines (anticonvulsants) - An anti-epileptic medicine is an alternative to an antidepressant. For example, gabapentin, pregabalin, sodium valproate, and carbamazepine. These medicines are commonly used to treat epilepsy but they have also been found to ease nerve pain. An anti-epileptic medicine can stop nerve impulses causing pains separate to its action on preventing epileptic seizures. As with antidepressants, a low dose is usually started at first and built up gradually if needed. It may take several weeks for maximum effect as the dose is gradually increased.
Sometimes both an antidepressant and an anti-epileptic medicine are taken if either alone does not work very well. Sometimes a traditional painkiller such as codeine is combined with an antidepressant or an anti-epileptic medicine. As they work in different ways they may compliment each other and have an additive effect on easing pain better than either alone.
Capsaicin cream - This is sometimes used to ease pain if the above medicines do not help, or cannot be used because of problems or side-effects. Capsaicin is thought to work by blocking nerves from sending pain messages. Capsaicin cream is applied 3-4 times a day. It can take up to 10 days for a good pain relieving effect to occur. Capsaicin can cause an intense burning feeling when it is applied. In particular, if it is used less than 3-4 times a day, or if it is applied just after taking a hot bath or shower. However, this side-effect tends to ease off with regular use. Capsaicin cream should not be applied to broken or inflamed skin. Wash your hands immediately after applying capsaicin cream.
Other drugs - Some other medicines are sometimes used on the advice of a specialist in a pain clinic. These may be an option if the above medicines do not help. For example, ketamine injections. Ketamine is normally used as an anaesthetic, but at low doses can have a pain relieving effect.
Physical treatments
Depending on the site and cause of the pain, a specialist in a pain clinic may advise one or more physical treatments. These include -
Physiotherapy
Acupuncture
A TENS machine (Transcutaneous Electrical Nerve Stimulation)
Nerve blocks with injected local anaesthetics
Spinal cord stimulation
Psychological treatments
Pain can be made worse by stress, anxiety and depression. Also, the perception ('feeling') of pain can vary depending on how we react to our pain and circumstances. Where relevant, treatment for anxiety or depression may help. Also, treatments such as stress management, counselling, cognitive behaviour therapy, and pain management programmes sometimes have a role in helping people with chronic (persistent) neuropathic pain.
An interesting article from eHOW health (see link below) about the link between kidney inflammation (Nephritis) and neuropathy. It is clearly explained how the relationship between the kidneys and the nervous system is a close one, although that may not be immediately apparent.
Relationship Between Nephritis & Neuropathy By Michael Drwiega, eHow Contributor
Kidneys regulate the blood's contents, affecting the entire body, including the nerves
Nephritis, or inflammation of the kidneys, can affect more than the nervous system. Neuropathy, a disease of the nerves, may appear to have nothing to do with the kidneys. Yet kidneys and nerves are intimately related. In fact, symptoms you might consider neurological, from fatigue, disorientation and delirium to cramps, convulsions, impaired heart rate or tingling in the hands and feet, could indicate kidney failure---something that might have begun with nephritis.
Movement, sensation, heart rate, mood, thinking---the kidneys affect them all
Kidneys
The relationship between nephritis and neuropathy reflects the function of the kidneys. This includes clearing wastes from the body, maintaining the body's acid-base balance and regulating the concentration of potassium in blood, according to "Understanding Pathophysiology," by Sue Huether and Kathryn McCance." By damaging the delicate loops, tubules and vessels by which the kidneys filter blood, nephritis can impede these functions.
You can lose three quarters of your kidney function before suffering symptoms
Nerves
Initially, nephritis may produce no symptoms. In fact, symptomatic changes in kidney disease do not usually appear until renal function declines to less than 25 percent of normal, note Huether and McCance. If allowed to worsen, however, nephritis will lead to renal failure. This will cause an accumulation of wastes in the blood, as well as a disruption in the acid-base balance and potassium concentration. Any of these three dysfunctions will have neurological consequences, note Huether and McCance.
Uremic symptoms include anorexia, nausea, vomiting and weight loss
Uremia
Urea, a waste product resulting from the breakdown of protein, is the chief nitrogenous constituent of urine, notes "Taber's Cyclopedic Medical Dictionary." A decline in kidney function impairs the excretion of urea, which causes uremia, a syndrome that includes elevated levels of urea in the blood, according to Huether and McCance. Just how uremia causes neuropathy is not well understood, according to the National Kidney Foundation. Undeniably, though, uremia is associated with widespread impairment of neural functions, note Huether and McCance.
Cellular activities depend on a precise balance between acid and base
Acidosis
The normal functioning of the body, including the nervous system, depends on maintaining the blood's acid-base balance. On a scale of zero to 14, the acid-base balance of the blood usually lies at 7.4. A drop to 7, or rise to 7.8, would kill a person in minutes, indicates the book "Biology," by Neil Campbell, Jane Reece, and Lawrence Mitchell. Excessive acid in the blood (acidosis), which may issue from kidney failure, causes neurological changes, note Huether and McCance.
Besides impairing the nervous system, abnormal potassium levels can cause cardiac arrest
Hyperkalemia
Acidosis can impair nerve function indirectly, through causing excessive accumulation of potassium in the blood (hyperkalemia). In acidosis, hydrogen ions force potassium ions out of cells into the spaces between cells, according to Huether and McCance. Unable to excrete the excess potassium, the kidneys cannot prevent its accumulation. Because nerve impulses depend on a balance between sodium and potassium, hyperkalemia can impair nerve transmission, the consequences of which can be fatal, note Huether and McCance.
Neuropathy due to renal disease may begin insidiously, before symptoms appear
Development
Since neuropathy exists in 65 percent of patients who initiate dialysis, the National Kidney Foundation suggests that it begins to develop at some earlier phase of kidney disease. Nerve conduction tends to slow down as the kidneys fail and, eventually, damage to the cells of peripheral nerves appears, reports the National Kidney Foundation.
Read more: Relationship Between Nephritis & Neuropathy | eHow.com
This letter to The Body (see link below)is slightly disturbing because it suggests that the drug is an effective remedy for neuropathy, without giving any details:
That said, the writer is 'sharing' an experience and not promoting this particular drug and furthermore, the article is almost eight years old, so there is every chance that opinions and/or information, have changed since then. My point is that if a doctor has suggested the drug to a patient then that gives it a certain 'credibility' and who can blame the patient for then passing on the suggestion to others?
"Perhaps I'm writing this more to share than anything. I know how long I have searched for something to help with my Peripheral Neuropathy. And FINALLY- my Dr. just put me on Durogesic (Transdermal Fenatyl) Skin Patch use for Chronic Pain. I urge anyone with PN to ask your Dr. about Durogesic."
Here are the details - make your own minds up if you want to try to persuade your doctor to put you on it. it comes from the Duragesic manufacturers' site itself and they don't pull any punches!(see link below)
Welcome. What is DURAGESIC®?
The DURAGESIC® (fentanyl transdermal system) CII patch is a strong prescription pain medication for moderate to severe chronic pain that can provide long-lasting relief from persistent pain.
Through its innovative patch technology, DURAGESIC® delivers fentanyl, an opioid pain medication, into the body slowly through the skin, where it works to relieve pain for up to 3 days (72 hours).
DURAGESIC® is strong medicine for serious pain. The DURAGESIC® patch should only be used when other less potent medicines have not been effective and when pain needs to be controlled around the clock.
Boxed Warning
DURAGESIC® (fentanyl transdermal system) CII contains a high concentration of a potent Schedule II opioid agonist, fentanyl. Schedule II opioid substances which include fentanyl, hydromorphone, methadone, morphine, oxycodone, and oxymorphone have the highest potential for abuse and associated risk of fatal overdose due to respiratory depression. Fentanyl can be abused and is subject to criminal diversion. The high content of fentanyl in the patches (DURAGESIC®) may be a particular target for abuse and diversion.
DURAGESIC® is indicated for management of persistent, moderate to severe chronic pain that:
Requires continuous, around-the-clock opioid administration for an extended period of time, and
Cannot be managed by other means such as nonsteroidal analgesics, opioid combination products, or immediate-release opioids
DURAGESIC® should ONLY be used in patients who are already receiving opioid therapy, who have demonstrated opioid tolerance, and who require a total daily dose at least equivalent to DURAGESIC® 25 mcg/hr. Patients who are considered opioid-tolerant are those who have been taking, for a week or longer, at least 60 mg of morphine daily, or at least 30 mg of oral oxycodone daily, or at least 8 mg of oral hydromorphone daily or an equianalgesic dose of another opioid.
Because serious or life-threatening hypoventilation could occur, DURAGESIC® is contraindicated:
In patients who are not opioid-tolerant
In the management of acute pain or in patients who require opioid analgesia for a short period of time
In the management of post-operative pain, including use after out-patient or day surgeries (e.g., tonsillectomies)
In the management of mild pain
In the management of intermittent pain (e.g., use on an as needed basis [prn])
(See CONTRAINDICATIONS section of the full Prescribing Information for further information.)
Since the peak fentanyl concentrations generally occur between 20 and 72 hours of treatment, prescribers should be aware that serious or life-threatening hypoventilation may occur, even in opioid-tolerant patients, during the initial application period.
The concomitant use of DURAGESIC® with all cytochrome P450 3A4 inhibitors (such as ritonavir, ketoconazole, itraconazole, troleandomycin, clarithromycin, nelfinavir, nefazodone, amiodarone, amprenavir, aprepitant, diltiazem, erythromycin, fluconazole, fosamprenavir, grapefruit juice, and verapamil) may result in an increase in fentanyl plasma concentrations, which could increase or prolong adverse drug effects and may cause potentially fatal respiratory depression. Patients receiving DURAGESIC® and any CYP3A4 inhibitors should be carefully monitored for an extended period of time and dosage adjustments should be made if warranted. (See CLINICAL PHARMACOLOGY-Drug Interactions, WARNINGS, PRECAUTIONS, and DOSAGE AND ADMINISTRATION sections of the full Prescribing Information for further information.)
The safety of DURAGESIC® has not been established in children under 2 years of age. DURAGESIC® should be administered to children only if they are opioid-tolerant and 2 years of age or older. (See PRECAUTIONS - Pediatric Use section of the full Prescribing Information.)
DURAGESIC® is ONLY for use in patients who are already tolerant to opioid therapy of comparable potency. Use in non-opioid tolerant patients may lead to fatal respiratory depression. Overestimating the DURAGESIC® dose when converting patients from another opioid medication can result in fatal overdose with the first dose (see DOSAGE and ADMINISTRATION – Initial DURAGESIC® Dose Selection - section of full Prescribing Information for further information). Due to the mean elimination half-life of approximately 20-27 hours, patients who are thought to have had a serious adverse event, including overdose, will require monitoring and treatment for at least 24 hours.
DURAGESIC® can be abused in a manner similar to other opioid agonists, legal or illicit. This risk should be considered when administering, prescribing, or dispensing DURAGESIC® in situations where the healthcare professional is concerned about increased risk of misuse, abuse, or diversion.
Persons at increased risk for opioid abuse include those with a personal or family history of substance abuse (including drug or alcohol abuse or addiction) or mental illness (e.g., major depression). Patients should be assessed for their clinical risks for opioid abuse or addiction prior to being prescribed opioids. All patients receiving opioids should be routinely monitored for signs of misuse, abuse, and addiction. Patients at increased risk of opioid abuse may still be appropriately treated with modified-release opioid formulations; however, these patients will require intensive monitoring for signs of misuse, abuse, or addiction.
DURAGESIC® patches are intended for transdermal use (on intact skin) only. Do not use a DURAGESIC® patch if the seal is broken or the patch is cut, damaged, or changed in any way.
Avoid exposing the DURAGESIC® application site and surrounding area to direct external heat sources, such as heating pads or electric blankets, heat or tanning lamps, saunas, hot tubs and heated water beds, while wearing the system. Avoid taking hot baths or sunbathing. There is a potential for temperature-dependant increases in fentanyl released from the system resulting in possible overdose and death. Patients wearing DURAGESIC® systems who develop fever or increased core body temperature due to strenuous exertion should be monitored for opioid side effects and the DURAGESIC® dose should be adjusted if necessary.
http://www.duragesic.com/
To my mind, we need to be really careful about what we suggest in forums (however well-intentioned). This blog has also been guilty of exactly that but the advice to all patients always remains the same: read everything you can and gather information but don't do anything hasty without being aware of all the facts and consulting your doctor. Many people are desperate enough to try anything but it's essential they are aware of all the properties of the drugs they take. Duragesic, like all opioids, is not M&Ms!
