Neuropathy Patients Hate Exercise But They Mustnt Avoid It

Today's short post from journals.lww.com (see link below) is a response from a doctor to a question most of us with neuropathy hope the answer to, will be a resounding "No". Unfortunately, the answer is yes to the question as to whether exercise helps with neuropathy. So we need to be prepared to put our bodies through yet more pain and discomfort for their benefit in the long run. The key is, making exercise something that is so obviously valuable that we can't ignore it and making it as pleasurable as possible. You can groan all you want (I do too) but the fact is that neuropathy weakens our muscles and joints to such an extent that it makes the pain considerably worse, never mind the fact that we can't do simple tasks any more. Read the article and think about your best strategy but don't overdo it and listen to your body when it tells you that you're doing just that.

Departments: Ask the Experts
You Ask. We Answer: 
Is exercise helpful for peripheral neuropathy?
Ensrud, Erik MD Neurology Now: October/November 2016 - Volume 12 - Issue 5 - p 31 doi: 10.1097/01.NNN.0000503487.82934.2d
 
Q Is exercise helpful for PERIPHERAL NEUROPATHY?

ERIK ENSRUD, MD, RESPONDS:

Answer: Yes, as long as you aren't overdoing it. The same benefits that anyone gets from exercise—improved cardiovascular function, increased mobility, a boost in mood—are realized by people with peripheral neuropathy, regardless of its cause. People with neuropathy may also experience an improvement in function and quality of life, as well as a decrease in pain.

PICK AN APPROPRIATE EXERCISE

Peripheral neuropathy is a general term for a group of diseases that affects motor and sensory nerves outside the brain and spinal cord. There are different types of neuropathy, and each has different causes and effects. Focal neuropathy, for instance, usually affects just one nerve or group of nerves. A common example is carpal tunnel syndrome, which involves nerve damage in the wrist. Any exercise that involves repetitive motion directly on the joint, such as playing tennis or texting or typing for hours on end, could aggravate the condition. Proximal neuropathy can reduce muscle strength in the legs and hips, so patients with this type of neuropathy might try riding a recumbent bike to avoid putting too much force on a compromised leg or hip joint.

STAY WITHIN YOUR LIMITS

When people think of exercise, they often think of the intense workout regimens of Olympic athletes like Michael Phelps and Katie Ledecky. But for most people, intense exercise is counterproductive. For people with neuropathy in particular, overstressed muscles may not recover as well because of existing nerve problems. A good rule of thumb during exercise is the talk test: If you can maintain a conversation without becoming breathless while exercising, you are likely at the right exertion level.

MAKE EXERCISE ENJOYABLE

If physical activity feels like a chore or is inconvenient, you'll eventually stop doing it. Decide what you like to do—swimming, biking, walking, dancing, yoga, tai chi—and how you like to do it—with friends, at home, in nature, as part of a class—and you're more likely to stick with it. The goal is to create a positive association with exercise so you do it more often. Consider an activity tracker, which logs your steps every day; seeing the steps add up can be very motivating for some people.

START SLOWLY AND BUILD

Before beginning any exercise program, talk to your doctor. You want to be sure you don't have any conditions that may affect the type of exercise you can do or how long you can safely do it. Once you get the all-clear, start out with five to 20 minutes of exercise three times a week. As your fitness improves, gradually add minutes, distance, or intensity. A good way to start is by walking around a large indoor shopping mall or store. The surface is level, the temperature is comfortable, you can use a shopping cart for stability, and it's free—unless, of course, you buy things.

Dr. Ensrud is director of neuromuscular disease rehabilitation at St. Luke's Rehabilitation Institute in Spokane, WA. He is also a member of the American Academy of Neurology.

© 2016 American Academy of Neurology

http://journals.lww.com/neurologynow/Pages/articleviewer.aspx?year=2016&issue=12050&article=00019&type=Fulltext

How They May Diagnose Your Neuropathy

Following on from yesterday's video, today's post from aboutperipheralneuropathy.blogspot.com (see link below) is the text attached to the video and gives a much more detailed explanation of neuropathy testing and diagnosis. Sadly, many neuropathy patients never get to the MRI, skin biopsy stage of testing because either their doctors feel they have enough information from the patient's own account, or there is pressure from financial authorities not to 'indulge' in very expensive testing procedures. It is true that in many cases, the patient's own experiences, coupled with an obvious cause for their neuropathy (diabetes, HIV, cancer treatment etc) mean that further testing is unnecessary - it's quite clear what the problem is and the treatment is generally not influenced by further extensive testing. An interesting breakdown of neuropathy diagnosis.

How to diagnose peripheral neuropathy 
Posted by Srikanth R Monday, 2 September 2013

Nervous system

Peripheral neuropathy is characterized by damage to nerves of the peripheral nervous system (nerves outside the brain and the spinal cord). It compasses a wide range of disorders.

Diagnosing peripheral neuropathy is a challenge to the medical profession. It is not easy because the symptoms are highly variable. Diagnosis usually involves a thorough neurological examination.

Diagnosis of peripheral neuropathy involves extensive analysis of patient history. This includes patient’s work environment, various symptoms, social habits, exposure to toxins, risk of HIV, history of alcoholism, risk of various infectious diseases and family history of nerve related medical conditions.

Doctors perform tests in order to identify the cause of neuropathic disorder. They conduct tests to determine the extent of nerve damage. Tests are also conducted to determine the type of nerve damage.

Presence of a systemic medical condition (something that is affecting the entire system) is revealed by general physical examination and related tests. Liver dysfunction, diabetes, vitamin deficiencies, kidney dysfunction and signs of abnormal immune system activity are detected by blood test.

Examination of cerebrospinal fluid that surrounds the brain and the spinal cord reveals abnormal antibodies associated with neuropathy. Specialized tests reveal cardiovascular disorders, blood related medical conditions, connective tissue disorders or malignancies.

Motor fiber involvement may be determined by testing muscle strength and by checking for evidence of cramps or fasciculations (muscle twitches). Muscle twitch is a small, local, involuntary muscle contraction and relaxation which is usually visible under the skin.

Sensory nerve damage can be identified by evaluating the patient’s ability to register light touch, pain, vibration, body position and temperature. This evaluation also indicates whether small or large sensory nerve fibers are affected.

Doctors may recommend additional tests based on the results of the neurological examination, patient history, physical examination and any pervious testing or screening. It depends on the patient’s overall condition. Additional tests help to determine the nature and extent of neuropathy.

MRI

Magnetic resonance imaging (MRI) is used to examine muscle size and quality. It can also detect any fatty replacement of muscle tissue. MRI can determine whether a nerve fiber has sustained compression damage.





MRI uses a magnetic field and pulses of radio wave energy. It reveals problems that cannot be seen with other imaging methods. During an MRI test, the area of the body being studied is placed inside a special equipment that contains a strong magnet.

The high-tech MRI equipment creates a strong magnetic field around the body. Radio waves are passed through the body in order to trigger a resonance signal that can be detected at different angles inside the body.

A computer processes this resonance into either a 2D slice or a 3D image of the scanned area. Images from an MRI scan are digital images that can be stored on a computer for further study.

Another advantage of MRI is that the images generated with the help of the test can be reviewed remotely, such as in an operating room or in a clinic. Contrast material is used in some cases to show certain structures more clearly.

NCV

Nerve conduction velocity (NCV) tests are used to precisely measure the degree of damage in larger nerve fibers. They reveal whether symptoms are being caused by degeneration of the axon or the myelin sheath.

Patches known as surface electrodes (similar to those used for ECG) are placed on the skin over nerves at various locations. Each patch gives a mild electrical impulse which stimulates the nerve.

The nerve fiber responds by generating its own electrical impulse. An electrode placed further along the nerve’s pathway measures the speed of impulse transmission along the axon (nerve fiber).

Impulse blockage and slow transmission rates tend to indicate damage to the myelin sheath (a fatty, axon-enwrapping sheath). Reduction in strength of impulses is a sign of axonal degeneration.

To prepare for the test, normal body temperature needs to be maintained. This is because low body temperature slows nerve conduction. It is very important to take appropriate precautions before performing this test on patients with pacemaker or cardiac defribrillator.

During the NCV test, the patient may feel the impulse like an electric shock. It may be uncomfortable to some people. However, there will be no pain after the test is finished. This is the experience of many people on whom this test is performed.

CT scan

CT scan stands for computed tomography scan. It is also known as CAT (computer axial tomography) scan. It is a noninvasive process that employs tomography. Tomography is the process of generating a 2D image of a slice or section through at 3D object (a tomogram).





This medical imaging method is used to produce rapid, clear, 2D images of bones, organs and tissues. CT scan is a painless process. The machine used is knows as CTG scanner. It uses X-rays. X-rays are passed through the body at various angles and are detected by a computerized scanner.

The data that is generated is processed and displayed as cross-sectional images of the internal structure of the body or of a particular organ. These images are also known as slices.

Neurological CT scans detect vascular or bone irregularities, some brain tumors and cysts, encephalitis, herniated disks, spinal stenosis and other disorders. Spinal stenosis is characterized by narrowing of the spinal canal.

EMG

Electromyography (EMG) is a process wherein a fine needle is inserted into a muscle in order to compare the amount of electrical activity present when muscles are at rest and when they contract. EMG helps differentiate between nerve and muscle disorders.

Nerve biopsy

Biopsy is a medical test usually performed by a surgeon or an interventional radiologist. It involves sampling of cells or tissues for examination. It is the removal of tissue form a living object in order to determine the extent or presence of a medical condition.

Nerve biopsy is an invasive procedure involves removing and examining a sample of nerve tissues. Nerve tissues are usually removed from the lower leg. This test can provide valuable information regarding the degree of nerve damage.

Nerve biopsy is an invasive procedure. It is not easy to perform. In some cases, this procedure may itself cause neuropathic side effects. According to experts, nerve biopsy is not always needed for diagnosis.

Skin biopsy

Skin biopsy is a biopsy technique in which doctors remove a thin skin sample and examine nerve fiber endings. This test offers some unique advantages over NCV tests and nerve biopsy.

Unlike NCV, skin biopsy reveals damage present in small fibers. Skin biopsy is less invasive than nerve biopsy. It is also easier to perform. Skin biopsy has lesser side effects than nerve biopsy.

The above-mentioned techniques help doctors diagnose peripheral neuropathy effectively. Right diagnosis enables them to work for improvement in the overall quality of the patient’s life.

Doctors can work with patients affected by peripheralneuropathy and add value to their overall well-being. For this to be possible, patients should keep up their appointments with their doctor. Peripheral neuropathy should not be neglected.

http://aboutperipheralneuropathy.blogspot.com/2013/09/how-to-diagnose-peripheral-neuropathy.html

Two Anti Depressants For Nerve Pain How Did They Do

Today's short post from alert.psychnews.org (see link below) reports that a new study has shown both Duloxetine (Cymbalta and others) and Venlafaxine ( ‎Effexor, Trevilor, Lanvexin, others) to be reasonably effective treatments for nerve pain. Well reasonable in the sense that they performed better than other pills...when compared to placebos. These two serotonin-norepinephrine reuptake inhibitors (anti-depressants) are already widely prescribed for neuropathic pain but as we know, what works for one patient, doesn't necessarily work for others, which leads to patient frustration and difficulties for researchers and studies to come to definitive conclusions. The article also states that pregabalin is FDA approved for neuropathic pain - it's not! The FDA goes as far as to demand that warnings about the side effects be placed on boxes. It's a minefield for patients wondering whether what their doctor has prescribed is a)going to work and b) going to be safe. It is safe to say that almost all drugs prescribed to limit neuropathic pain can have side effects and therefore it's vitally important that you have a serious discussion with your doctor before embarking on a course of drugs. Together you need to weigh up the benefits and risks and even then there's no guarantee that your symptoms will diminish. However, maybe that shouldn't stop you trying - anything is better than that relentless pain...right! But your doctor should monitor your progress on any given drug, with great care and if necessary change the treatment.
 

Duloxetine, Venlafaxine May Be Most Effective at Reducing Diabetic Nerve Pain
Posted by Psychiatric News Monday, March 27, 2017

The serotonin-norepinephrine reuptake inhibitors duloxetine and venlafaxine appear to have the best evidence for being effective at reducing nerve pain in people with diabetes, according to a meta-analysis published in Neurology. Duloxetine is FDA-approved for treating pain in diabetic neuropathy, though venlafaxine is not.

The researchers pooled together data from 106 clinical studies published between 2011 and 2015 examining the effectiveness of pharmacologic approaches to improving pain in patients with diabetic peripheral neuropathy. The analysis compared outcomes in patients taking 21 different medications, though the authors were unable to draw conclusions for any head-to-head drug comparisons due to insufficient evidence.

The researchers found moderate evidence to suggest that duloxetine and venlafaxine were more effective at reducing neuropathy-related pain than placebo. Tricyclic antidepressants, botulinum toxin, the opioids tramadol and tapentadol, and the anticonvulsants pregabalin and oxcarbazepine were also found to be more effective than placebo, but the evidence base for these medications was weak.

In contrast, the anticonvulsant gabapentin, mood stabilizer valproate, and capsaicin cream were all found to be no more effective than placebo; these findings run contrary to guidelines for treating diabetic peripheral neuropathy published by the American Academy of Neurology in 2011, which listed all three agents as probably effective.

“Our findings generally support the effectiveness of the three drugs approved by the Food and Drug Administration (FDA) for the treatment of pain in diabetic peripheral neuropathy: duloxetine, pregabalin, and tapentadol,” wrote Julie Waldfogel, Pharm.D., of the Johns Hopkins Hospital and her colleagues. “Additional studies evaluating longer term outcomes are needed to better inform clinical decision-making, patient choice, and clinical practice guidelines.”

http://alert.psychnews.org/2017/03/duloxetine-venlafaxine-may-be-most.html

MAKING SURE ANTIBIOTICS AS THEY SHOULD

Researchers at ETH Zurich are decoding the structure of the large ribosomal subunit of the mitochondria at an atomic level, thereby providing insight into the molecular architecture of this ribosome with implications for a better understanding of the mode of action of antibiotics.

A team of ETH Zurich researchers led by professors Nenad Ban and Ruedi Aebersold have studied the highly complex molecular structure of mitoribosomes, which are the ribosomes of mitochondria. Ribosomes are found in the cells of all living organisms. However, higher organisms (eukaryotes), which include fungi, plants, animals and humans, contain much more complex ribosomes than bacteria. In eukaryotes, ribosomes can also be divided into two types: those in the cytosol -- which comprises the majority of the cell -- and those found in the mitochondria or "power plants" of cells. Mitochondria are only found in eukaryotes.

Ribosomes serve as translation devices for the genetic code and produce proteins based on the information stored in DNA. Every ribosome consists of two subunits. The smaller subunit uses transfer ribonucleic acids (transfer RNA or tRNA) to decode the genetic code it receives in the form of messenger RNA, while the larger subunit joins the amino acids delivered by the transfer RNA together like a string of pearls.

Even higher resolution, even more details

Mitochondrial ribosomes are especially difficult to study because they are found only in small amounts and are difficult to isolate. At the beginning of the year, ETH researchers had shed light on the molecular structure of the large subunit of the mitoribosome in mammalian cells to a resolution of 4.9 Å (less than 0.5 nm). However, this resolution was not adequate to reliably build a complete atomic model of this previously unknown structure. The team lead by ETH Professor Nenad Ban has now succeeded in this task and was able to map the entire structure at a resolution of 3.4 Å (0.34 nm). The researchers recently published their findings in the scientific journal Nature.

The scientists used high-resolution cryo-electron microscopy at the Electron Microscopy Center of ETH Zurich (ScopeM) and state-of-the-art mass spectrometry methods in their experiments. Thanks to recent technical advances in cryo-electron microscopy and the development of direct electron detection cameras that can correct for specimen motion during the exposure, it only recently became possible to capture images of biomolecules at a resolution of less than four angstroms.

Improving the effect of antibiotics

In particular, the new images show the details of the peptidyl transferase centre (PTC), which is where the amino acid building blocks are combined. The proteins synthesised in this way then pass through a tunnel, where they finally exit the large subunit of the ribosome.

"This process is medically relevant," said Basil Greber, lead author of the study and postdoctoral researcher in Nenad Ban's group. The reason is that this tunnel is a target for certain antibiotics. The antibiotic becomes lodged in the tunnel and prevents the proteins that have just been synthesized from leaving the tunnel. However, antibiotics should only inhibit protein synthesis in the ribosomes of bacteria.

"For an antibiotic to be used in humans, it must not attack human ribosomes," explains Greber. Antibiotics must inhibit protein synthesis only in bacterial ribosomes. The problem is that mitochondrial ribosomes resemble those of bacteria, which is why certain antibiotics also interfere with mitoribosomes. "This can lead to serious side effects." The ETH researchers' findings will make it possible in the future to design antibiotics that inhibit only bacterial and not mitochondrial ribosomes. This is one basic requirement for using them in clinical applications.

A surprising discovery

The ETH researchers also made an unexpected discovery. They found that mitoribosomes use transfer RNA in two fundamentally different ways. Firstly, the tRNA is used to select the right amino acid for peptide synthesis in the PTC. Secondly, one tRNA is a fixed part of the structure, unlike in all other ribosomes. Although it has been known for quite some time that mitochondrial ribosomes integrated new proteins into their structure over the course of their development, this is the first time that the use of an entirely new RNA molecule was observed. "This demonstrates the great evolutionary plasticity of mitoribosomes," underscored Greber.

The ETH team is now faced with a major, still unresolved task in its research: determining the structure of the smaller subunit of the mitochondrial ribosome. The fact that it is more flexible than the large subunit renders this undertaking an even greater challenge.

How Do They Normally Treat Neuropathic Pain

Today's post from neuropathyjournal.org (see link below) covers many of the ways neuropathy is currently treated and is written by renowned neuropathy patient LtCol Eugene B Richardson. It is full of useful tips and various truths your doctor may not tell you. It is one man's opinion (backed up with useful references) but as you may already have discovered, an experienced neuropathy patient is often the best source of advice. He also states that many treatments work differently for different individuals and that is very important to realise because neuropathy rarely follows patterns of behaviour or response. Certainly worth a read.
 

How is Neuropathic Pain Treated? 
 LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

FACT: Neuropathic pain does NOT respond to ‘normal’ pain medications.

Pain signals from an external stimulus like a cut or from an internal broken bone are treated with many well-known treatment options for pain.

Pain signals from damaged nerves which send real, but faulty signals to the brain must be treated with other options which currently are limited until research provides more options at the clinical level.

WARNING: One of the most dangerous aspects of treating your pain OR symptoms in a neuropathy, is the concern that either you or the doctor will then ignore the CAUSE or TYPE of your neuropathy. Knowing the TYPE can often point to a possible treatment and NEVER accept a diagnosis of idiopathic as it adds nothing but confusion. Treating pain is to treat a symptom, but medical care must go beyond the symptoms in working with the neuropathy patient.. To understand the problem with a diagnosis of ‘idiopathic’ click here:
 
Drug Options

The majority of patients with neuropathic pain are currently treated with two classes of medication.

The anti-depressants and the anti-seizure medications either alone or in combination work for many patients to reduce such pain. Some of these options would include Nortriptyline in the first class and Lyrica in the second class. Speak to your doctor about the options, but recommend that you first consider the anti-depressants as these may have less side effects. Both the anti-depressants and anti-seizure medications reduce neuropathic pain, even if medicine is not totally sure why they work. This information is from the book by Norman Latov, MD PhD of Weill Medical College, Cornell University in his book for patients listed in our RESOURCE tab. (Ref: #4)

SPECIAL ALERT 2014: The one issue that is new is that the use of the drug Cymbalta for a protracted time period, as it has been reported that upon withdrawal from the drug there may be serious problems according to one recent news article on the subject. I personally think anyone who has taken the drug Cymbalta may want to speak to the doctor about this issue and speak to them about the use of Nortriptyline as an alternative. (Nortriptyline is an older drug with a proven track record and taken at night it helps you sleep!).

Most patients get about 85% relief and a few are lucky with 100% relief, but until there are better medications developed by research, we are fortunately to have these options.

Dr. Latov (Ref: #1) speaks of these and other medications and they do help many neuropathy patients. However, like all medications sometimes the side effects are worse than the symptoms. Each patient must decide if they are worth using if the pain is only at the nuisance level. The dosage and the combinations of these medications must be worked through by the patient with the doctor in a patient doctor partnership of trial and error. As of now, I know of no other way to find what works for you.

Other patients have been prescribed Lidocaine patches for burning pains as noted by Dr. Latov and patients report that these help reduce the burning.

I have found that the burning sensations respond best to compounded topical creams and not to the oral medications. Compounded topical creams are being prescribed more often by doctors and the benefit is the absorption into the blood is limited and it tends to stay concentrated to the area you need it the most according to Neurologist Corey Hunter (Ref: #4). Some of the ingredients physicians use in these compounds includes Lidocaine, Ketamine, Gabapentin, and Amitriptyline, mixed by a compounding pharmacy in percentages as prescribed by the physician.

For patients with an immune mediated neuropathy the use of intravenous immune globulin (IVIg) has been very effective in reducing pain in sensory neuropathies while providing more muscle strength in motor neuropathies and protecting the nerves from more damage. It works! See patient IVIg experience click here:

2015 Update on Promising Research: The Foundation for Peripheral Neuropathy in their E News March 2015, noted in a follow up of reported 2013 research a report published in the Annals of Clinical and Translational Neurology and Science Daily, noted that with “two low dose rounds of non-viral gene therapy called VM 202 patients had significant improvement of their pain that lasted for months!

“Those who received the therapy reported more than 50 percent reduction in their symptoms and virtually no side effects,” said Dr. Jack Kessler, lead author of the study. “Not only did it improve their pain, it also improved their ability to perceive a very, very light touch.

“VM202 contains human hepatocyte growth factor (HGF) gene. Growth factor is a naturally occurring protein in the body that acts on cells, in this case nerve cells – to keep them alive, healthy and functioning. Future study is needed to investigate if the therapy can actually regenerate damaged nerves, reversing the neuropathy.

“Patients with painful diabetic neuropathy have abnormally high levels of glucose in their blood. These high levels of glucose can be toxic.

“We are hoping that the treatment will increase the local production of hepatocyte growth factor to help regenerate nerves and grow new blood vessels and therefore reduce the pain,” said Dr. Senda Ajroud-Driss, associate professor in neurology at Feinberg, an attending physician at Northwestern Memorial Hospital and an author of the study.

“Right now there is no medication that can reverse neuropathy,” Kessler said. “Our goal is to develop a treatment. If we can show with more patients that is a very real phenomenon, then we can show we have not only improved the symptoms of the disease, namely the pain, but we have actually improved function.”

“A future, much larger phase three study will soon be underway. To read the full article Neuropathy: Relief for diabetics with painful condition. ” 

What about muscle cramps?

Muscle cramps are common in neuropathy patients. It is always a good idea to report such muscle cramps to your doctor and determine if it is indeed related to your neuropathy or other conditions. Levels of potassium, calcium, salt, and other substances critical to proper function of muscles may need to be tested to see if they are low.

Other patients have had levels of potassium, calcium, salt, and other substances critical to proper function of muscles tested to see if they are low. Then have the doctor prescribe a supplement at the correct dosage for you.

If you take a diuretic, muscle cramps are common and may require supplements, so speak to your doctor.

Patients have found that eating a banana at night keeps the cramps away, or eating a Tum to increase calcium, or eating salty olives or pickles if your salt levels are low work.

Some neuropathy patients have noted that the drug Venlafaxine resolves restless leg syndrome and the associated leg cramps. Dr. Levine states that this drug changes the levels of serotonin and norepinephrine (two neurochemicals) in the spinal cord and can be effective in patients with neuropathy. 

What About Exercise?

Did you know that the wrong type of exercise will force damaged nerves to work and increase the pain! See article at:

How should a neuropathy patient exercise? Consider ordering a copy of the brand new DVD from Matt Hansen the expert as his perspective on exercise for neuropathy is perfect and understands what we can and cannot do. Yet Matt makes it possible for us to exercise WITHOUT the increase in neuropathic pain, keeping muscles as strong and flexible as possible. To see article on DVD click here: When ordering enter the special code NSN 10 and Matt will give 10% of your purchase price back to support the work of the NSN!

If you want a complete discussion of medicines for the treatment of neuropathic pain, read the book by Dr. Latov.
 
Other options

Dr. Latov in his book and many neuropathy patients have reported reducing pain by the use of minerals such as Alpha Lipoic acid (600 to 800 mg) especially pain from diabetic neuropathy. Research suggests that vitamin C is important to protecting nerve cells and the lack of vitamin E can actually cause neuropathy as noted by Dr. Latov.

You see many ads for B supplements in what I call a shotgun approach to the B vitamins. For me it is like shooting a mass of vitamins at an unknown target! We know that a shortage of certain vitamins, especially the E and B vitamins, is known to cause neuropathy. Yet too much B6 can cause it! I like the suggestion of Dr. Latov that the patient have such levels tested (see his book for specific information) to determine any shortage and then treat the identified target rather than using a radium shotgun blast at an unknown target!

Good nutrition is very important for everyone, but it is especially important for neuropathy patients. Why? First good nutrition helps protect and heal the nerves. Secondly, the lack of essential vitamins can cause neuropathy according to Dr. Latov! Neuropathy caused by long term alcohol abuse may be due more too poor nutrition than the alcohol. Read his book.

In the book by Mims Cushing’s, (Ref: #2) patients report that another helpful option is to soak your feet in cold tap water for 15 minutes before going to bed. The cooler water helps by calming the nerves. DO NOT USE FREEZING ICE WATER as with sensory neuropathy this could cause damage to the skin. For those with the sensation of very COLD feet, these patients have found that doing the same with warm tap water (NOT HOT) has a soothing effect.

Acupuncture has been shown to be effective for pain reduction in some patients and this is supported by small studies showing its effectiveness.

Again, it is what works for you in treating the strange effects of neuropathic pain from damaged peripheral nerves.
 
A Word About PODS (Postural Orthostatic Tachycardia Syndrome)

Do you know how many times over the past 40 years I was sent to the Cardiologist because ‘I was having a heart attack’ only to be told my heart was fine and ask, ‘Why was I here?’ The Tachycardia (silent as I did not feel it), was never understood or recognized. It was often not even related to standing as I has been assumed. Having been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Small Fiber Neuropathy (SFN) and with symptoms of Autonomic Neuropathy, it was a reality for me, but eventually this symptom went away while others were reduced when I began IVIg.

The relationship of the symptoms to Small Fiber Neuropathy was noted in a February/March 2015 Article in Neurology NOW (Ref #6) among other neurological issues. The article notes that there are significant disagreements in the scientific community about what drives POTS or even what symptoms are related to PODS. Symptoms related to PODS in this article include dizziness, lightheadedness, palpitations, near fainting upon standing and unrelated to standing the symptoms noted are fatigue, nausea, autonomic systems, fibromyalgia, and others often connected to several forms of neuropathy.

While prognosis is unpredictable, research in a 2013 large study from the Mayo Clinic presented at the 24th International Symposium on the Autonomic Nervous System noted that 18.2% of patients noted complete resolution of symptoms , while 52.8% reported improved but persistent symptoms two to 10 years after diagnosis.

Several suggestions were made in the Neurology NOW article to alleviate POTS including the simple idea of (1) drinking more water especially with increases in sodium. This simple solution helps expand blood volume and increase blood flow, but it may not work for some people; (2) appropriate exercise (see exercise DVD information noted above) to prevent blood from pooling in the lower extremities and other benefits gained from even low impact exercise.

Until more research confirms what is driving this REAL disorder and the related symptoms, patients just must find ways to cope and live around the illness.
DVD and the Behavioral Sciences

In this regard, remember what I have taught in the DVD “Coping with Chronic Neuropathy”. How you THINK about something, will affect your FEELINGS, which will in turn effect or influence your BEHAVIOR. It you think something is horrible, your feelings will be one of despair and your actions will reflect a sense of defeat. Always try to turn this around to a positive thought, however difficult it may be! It works.

You may also want to find a good psychologist or trained counselor, to explore cognitive therapy as in biofeedback or relaxation techniques, visualization techniques, or a trained specialist in healing arts such as yoga or ta-chi, to find ways to utilize your body’s ability to increase natural chemicals (serotonins) which we know reduce pain. Never underestimate the body’s ability to seek balance and healing.

Soothing music or sounds are a well-known way to relax and improve the body’s response to pain and there are music tapes or even therapists to help. This is why the noise of a water fall or watching a fish tank is so relaxing and healing.

Periods of slow deep breathing together with soft music or other relaxing sounds can be very helpful. Combine this with favorite images such as rain fall, snow showers, waterfall, and fall foliage in the mountains in the fall, or visualizing soft spring rains, baby birds, or whatever and you will be surprised how much it helps. Art therapy is often used to help patients visualize and express how they feel. I have been known to sing while walking my dogs using my power scooter with neighbors looking at me with strange looks, ‘Okay, he is gone’, but who cares.

Pets can offer so much in comfort and care if you are physically able to take care of them and afford them. As we have learned many times with the chronically ill and with veterans who suffer from PTSD pets are often essential for survival. For me they have become my ‘children’ to take care of providing more love and meaning to my daily life.
 
Opiates

Opiates are often used for break through pain and for some are very helpful when there is either a short term need or no other option.

However, my opinion after working with many patients attempting to stop the use of opiates is that patients should try every option carefully before using the opiates. The opiates often require increasing dosages with unwanted side effects that become more of a problem than the symptoms you are trying to address. A day does not go by, when a patient requests help to withdrawing from opiates.

For many patients the opiate drugs will eventually become more of a problem than your symptoms of neuropathy and the body will keep demanding more and more of the drug.

However, this is a very personal decision between you and your doctor, so work with the doctor to discover what does work for you as noted. If your doctor does not work with you on this, find another doctor as every patient is different. I would always tell a patient to get a second opinion regarding opiate use for neuropathic pain.

Remember for neuropathic pain, if you get 85% relief this is probably as good as it is going to get until medical research discovers better options.
Pain Management

A patient went for decades with severe back pain from multiple problems in the spine. Nothing helped. Then they tried the epidural from a Pain Management physician, which is the only thing that helped provide some relief after decades of trying.

This epidural uses Lidocaine and Depomedrol. The patient is sedated when the procedure is done and it is done under a machine that shows the doctor what they are doing on a monitor. It gave the patient 90% relief for the first 3 weeks and then 80% relief. The patient is crippled without this epidural. Unfortunately they need to be repeated and relief is often temporary.
Pain Management can offer many ideas for patients to find some relief from chronic pain including the possible use of spinal cord stimulators, implants, and other such instruments.
 
How do you communicate pain levels?

(To see article on opening doors with doctors click here.)

One of the most difficult tasks for a neuropathy patient is communicating neuropathic pain or symptom levels to anyone, while the patient fears they are crazy from the strangeness of these symptoms and sensations.

Too many patients in frustration or in a desperate need for relief will state something like, “If 10 is the worst level, than my pain is a 20.” This may communicate your desperation, panic, frustration, or anger, but otherwise is not helpful to the doctor or you.

This is where patient awareness of the pain scale 1 to 10 is very important as you communicate with the doctor, working through the issues of what works and what does not work. This process requires a doctor and patient who LISTEN and HEAR as listening and hearing are two different tasks. You know a doctor is listening if they do not cut you off after you share for 3 seconds and if they can repeat back what you just said!

Remember, if 10 is the level of pain where you pass out and 1 is just a nuisance, then 5 is where your ability to perform daily tasks become very difficult and by 6 impossible. With practice, it will amaze you how skillful you can become in judging your pain or symptom level.

There are times when pain or other symptoms are better expressed in a range over a period of time. Examples would be the burning sensations have been a 2 to 4 or a 4 to 7. This will help you and the doctor see where you are with the medications. But remember, if you get 85% relief from neuropathic pain, this may be as good as it gets with current options. But remember, if you get 80% relief from neuropathic pain, this may be as good as it gets with current options.
 
A Note of Caution:

One final note of caution for medicine too often wants to dismiss the neuropathy patient rather than spend the time for a number of reasons to find the cause or type of neuropathy. It is not enough to treat these symptoms of a neuropathy. The physician must be willing to conduct the testing necessary in attempts to find and perhaps treat the cause or at least know the type as this often can point to a cause. Too many physicians have the attitude, there is nothing that can be done, go home, live with it. This attitude must cease, yesterday. 

References:

#1 Norman Latov, MD, PhD, FAAN Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, ANN Press, 2007

#2 Mims Cushing, You Can Cope With Peripheral Neuropathy (Ideas from neuropathy patients), with Dr. Norman Latov, DEMOS Publishing, 2009

#3 “Journal of the Peripheral Nervous System” published by the Peripheral Nerve Society.

#4 Dr. Corey W. Hunter, MD, Pain Medicine, Ainsworth Institute of Pain Management, New York, NY.

#5 Dr. Sean Levine, MD, FAAN, Professor of Clinical Neurological Surgery and Radiology, NYPH, New York, NY

#6. “Neurology NOW”, February/March 2015, Article: Taking a Stand (on PODS), By Amy Paturel, pages 44 to 47.

DISCLAIMER: The information provided is intended to be educational and informative and not medically prescriptive or diagnostic. All patients are encouraged to consult with their own medical doctor when considering any of the information contained within.

Copyright – 2014-2015 Network for Neuropathy Support, Inc., 501c3, dba as Neuropathy Support Network. This article or its contents may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.

http://neuropathyjournal.org/how-is-neuropathic-pain-treated/