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June 6th 2019

Allow me to imagine a scenario: You've been there before remember ... with HIV. The day before your diagnosis you were more or less a fully-functioning part of society, even if that wasn't particularly the aim and the day after ... you weren't. That's not to say that you ceased to exist; your role just changed that's all. It's a two-way process; society looks at you differently and you see society as something outside yourself. For many people, it's the first time they've been forced to examine their position in the world and for many people it's a real shock.

Many things you take for granted are changed forever by those three letters after your name. Even within your own subgroup of society; gay straight or whatever, you're seen as a different person after you become HIV positive. Unfortunately, it's a fact of life and we all have to get used to it. For some people it's an easier process than for others but eventually, we accept our new position in society and settle down, however uncomfortably, to get on with our lives.

So HIV bit a chunk out of your self-confidence and presented you with new challenges. These centered mainly on health and relationships. If you were lucky, your friends and family and partner stuck by you, or you found new ones without too much trouble. Again, if you were lucky, you moved on to the medication and your life also moved on in relative good health, towards a normal life expectancy. Many people are that lucky but equally many aren't and every set-back makes you realize that having HIV in your life makes you a different person. Yet however bruised, you're still standing. You're constantly reminded that twenty years ago you probably wouldn't have been but you're thankful for small mercies and that the virus can be suppressed.

Hello Neuropathy!
At the beginning, neuropathy doesn't seem so bad. A little numbness here, some tingling there; maybe some extra sensitivity or pain but generally it's something irritating that you can live with. You mention it to friends and doctors and reactions are pretty neutral and you go on with your life, a little concerned but not enough to keep you awake at night.

It's when (and if) it progresses that the problems start. Let's skip the progression details. If you're suffering from neuropathy, you know only too well how that goes and if you're looking for information, previous posts on this blog will help.

Neuropathy symptoms can end up being so severe that you are limited in what you can do in a way that you've never known before. Walking distances is a problem; sport and fitness exercises become difficult to impossible and your social life disappears like snowflakes in the sun.

Suddenly, you're once more confronted with feelings you thought you'd already overcome after you became HIV positive. You thought you'd been strong then and felt quite proud that you'd found a place for yourself in the world despite the stigmas and setbacks of HIV. Then along comes another disease which threatens to put your life on hold for an indeterminate time. Other people; even partners, family and close friends can't understand why you're suddenly morose and depressed. They put it down to the HIV, or the symptoms you're trying to describe which they also don't really understand and after a while, begin to lose sympathy and above all, patience.

What does that do to a person?
You begin to think you're stretching your credibility to breaking point. People with whom you have shared your HIV story over the years look at you with tired eyes; they've heard it all before and made enough allowances already ... or so it feels. You can't describe the sensations you're feeling because they're so difficult to put into words.

If you're in pain, you feel as though the whole world doubts you and you begin to re-tell the story about the boy who cries wolf, again and again in your mind. Worst of all, you begin to doubt yourself because there just doesn't seem to be any reason for the neuropathy. Okay you were never meant to die from having sex but at least you knew the reason for your HIV. Neuropathy, on the other hand, just seems like a cruel joke. If your doctor has also told you that you have idiopathic neuropathy but they can't find any reason for the nerve damage and it hardly shows up in the tests, you begin to feel like that person in a coma who is buried alive and can't move or say anything about it. You imagine hearing, "drama queen" being whispered behind your back and before you know it, the self-respect and feelings of self-worth that you fought so hard to maintain after the HIV diagnosis are gone again.

Now of course, not everyone with neuropathy and HIV suffers to this extent, but many do, and it affects every area of their lives. What people need from the medical profession for instance, is a pat on the back, a comforting word and some sustained moral as well as medical support. The problem is that very few in the medical profession know what it's like to have neuropathy themselves and nerve doctors are not paid psychologists, so they give you the cold, hard facts, put you on the first step of the medication windmill and abandon you to the psychological side-effects.

You then turn to your long-suffering friends, family and partners. It's not their fault either: how can they sympathize anything more than superficially, with something they've barely even heard of? You've already learned that patience and sympathy have limits and learning from experience has already taught you that you have to tone down the moaning or be faced with glassy stares and nodding heads. Neuropathy patients then begin to feel isolated and misunderstood. The more the disease progresses, the less they can do and their lives can grind to a frustrating halt.

For instance, no matter how old you are, when you're in constant discomfort or pain, your mind wants you to be as sexual as you always were but the body just won't let you. That in itself is a massive blow to the ego, especially for younger people but also for those who'd been looking forward to becoming sexual beings again after the traumas and complexes of HIV. Suddenly you start to think about how disabled you might end up being. You try this, that, or the other medication and/or supplement and while you might get some relief, nothing goes away permanently. No wonder people may become clinically depressed.

What people don't realize is how much of a shock neuropathy can be -- even to people who thought they knew what shock and awe was with HIV. It comes out of the blue; it's unexpected and seems just so unfair. Your life suddenly begins to shrink, imperceptibly at first but then at an alarming rate, until many end up lonely and socially detached, even though there may be people around them.

The disease is bad enough. It can end up being unbelievably painful at worst and unbelievably irritating at best but even greater than that, is the impact it has on a person's self-image, self-worth and self-confidence.

People have lived through this before, with the doubt and fear that they would be excluded from society by HIV; but the advent of neuropathy can attack an already fragile ego like rust on metal. It's an appropriate metaphor: rust implies that the original hasn't changed -- it's just been eroded and made imperfect to the point of no longer functioning properly.

That the world at large, and the HIV community in particular, is frequently not aware of neuropathy is both surprising and disappointing, and it needs to be addressed. People with neuropathy should only have to deal with the physical symptoms because psychologically and socially they're in safe hands -- if only! That said: if you're suffering ... you're not alone. Try to get in touch with someone else with the same problems. Supporting others is not easy, but a problem shared ...

This piece is written with all due respect to people living with HIV who also have hepatitis C, anal cancer or many other chronic conditions which are arguably more serious than neuropathy and have an even greater impact on their lives.
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.
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Today's post from themedium.ca (see link below) is one that warns against using Google etc to self-diagnose when you're experiencing unusual symptoms. The author is completely right...of course it's a problem if you diagnose yourself based on what the internet suggests and of course you need to take it to your doctor for confirmation...or not. That said, neuropathy patients for instance, are faced with a disease that has over 100 forms and over 100 causes and the symptoms can be just as varied. Their doctors don't always have the time to go into much detail about nerve damage, so it seems a sensible move to go to the internet to find out what's going on. However, it's a move filled with pitfalls and potential misinformation (never mind fake news!) but if you choose reputable sites and do your research via several sources, you'll probably find the information you need to explain some of the things happening to you. After that, it's time to go to the doctor with your findings. Needless to say, self diagnosis is one thing but self-medication is almost never a good idea - so many potential problems!! The fact is that most neuropathy sufferers are sensible people, so internet research has to be part of the equation but in partnership with the doctors, not just because you may disagree with them, or think they're not taking you seriously enough.

The dangers of self-diagnosing
Amrish Wagle Naairah Paurobally Mar 25, 2019

 It is very common for people to turn to Google as a way of answering their pain or body-related questions, but this should not be the case

With Google at our fingertips, it feels downright irresponsible to not exploit this resource to self-diagnose one’s symptoms. With the time, energy, and effort one can spend to get an appointment for a limited time with a doctor, it seems far more convenient to Google away your biology. Unbeknownst to most, self-diagnosing consists of its own unique dangers that may end up causing more harm.

To start off, with the spectrum of illness and disorders one can contract, diagnosing requires a very keen eye for the nuances. As an example, patients with mood swings often assume they have a manic depressive illness when it could be a host of other things including major depression, bipolar disorder or seasonal affective disorder. The distinguishing requires a special attention to the quality of symptoms, such as how long the mood swings last and what type they are. The subtleties required in such self-diagnoses could significantly misdirect the patient as well as his clinician.

Another category of such a fallacy is the misinterpretation of psychological diseases with physical health issues. A tumor in the brain could just as easily cause psychological symptoms of depression or psychosis. Such misconceptions in extreme cases can be detrimental. Not to mention, many symptoms, especially visceral are not directly visible. Symptoms such as irregular heartbeats or hyperthyroidism when the body overproduces thyroid hormone. In this sense, self-diagnoses are quite superficial in identifying medical symptoms.

In addition, pain has a significantly poor correlation with tissue damage. Contrary to popular belief, pain is an experience in the brain and can be caused or perpetuated by mechanisms other than physical harm, such as neuropathy where nerve damage even after an injury has healed can persistently cause considerable pain. Another example is phantom limb pain, where following the amputation of a limb, the body continues to feel the excruciating pain of the missing limb even though it’s not there. In this sense, diagnosis of illness is a complex science that requires a deep competence simply not present in a casually superficial self-diagnosis. People also tend to frequently miss comorbidity, where two or more syndromes simultaneously exist within the same person.

Another danger of self-diagnosing is that a lot of people tend to exaggerate their illness. As an example, pain catastrophizing is a characteristic within people who tend to amplify their pain simply based on how they think about it. This is mostly based on their tendency to ruminate constantly and exaggerate their pain, coupled with a feeling of helplessness.

People also tend to prescribe their symptoms to more than one illness. Whereas depression can cause a host of other disorders including insomnia, anxiety and inattention, patients are usually predisposed to assigning these symptoms to separate syndromes such as ADD and sleep disorders.

This proves that patients can be too confounded with biases to make accurate self-diagnoses. Other than pain catastrophizing, patients can also lean towards downplaying their symptoms and minimize their perceptual effect in a state of denial. Individuals too busy or too nervous may avoid medical intervention and instead choose to carry on with their day.

There are legitimate syndromes that individuals usually tend to neglect simply because they are not quite disruptive in their lives. As an example, delusional disorders or personality disorders tend to go unreported as they are not problematic or overly psychotic enough for most people to seek conventional treatment.

Websites and search engines used for self-diagnosing are also based on algorithms that seek to get the most page views out of visitors. Consequently, the most serious types of ailments are provided at the top of the search results. People are naturally more likely to be engulfed by content on cancer than a simple headache. Research shows that these engines are not necessarily geared to provide the most accurate content and that individuals are more likely to walk away with significantly more dread that their symptom is a harbinger of something much worse. There is also a tendency to think that the top search results are more aligned with their symptoms than other illnesses.

Research also shows that few people use significant skepticism when consuming online content for self-diagnosis and roughly half of these end up consulting a doctor. Subsequently, most people tend to take matters into their own hands and try to treat their self-diagnosed illness.

The bottom line is that one should refrain from making significant changes in diet or medication without getting a clinician’s perspective. Self-diagnosing is only beneficial as a starting point and a doctor should be part of the conversation when proceeding to treat one’s health and wellness.

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Today's unbelievably extensive post from topshoeswomen.com (see link below) is not only a pretty accurate and well-explained description of neuropathy and how it affects us but a thorough examination of the shoe market for people living with neuropathy and some useful tips. if you think about it, our feet and legs have to carry us around and endure every form of movement you can think of, for all of our lives. It's a wonder we don't have foot problems in our twenties! If you then suffer nerve damage on top of all the other stresses and strains, it's our feet and legs that bear most of the strain and pain. It's vitally important then to buy the best footwear we can afford but that footwear needs to be appropriate for our very individual foot and leg problems. Buying over the internet is probably not a good idea, as you really need to try them on and walk around a bit before taking the chance on buying. This article provides a pretty good guide to everything 'neuropathic' feet related - well worth a read. And remember...fashion isn't an issue any more!!

The Top 10 Shoes for Neuropathy
By Nathan Max · On March 5, 2019 · Updated: March 7, 2019

Neuropathy is a condition suffered by almost 60% of the world’s population today.

Neuropathy is a very painful condition that affects mostly the lower limbs and feet. Wearing the correct footwear can reduce the pain and symptoms of Neuropathy enabling you to live a normal and healthy life.

What Exactly is Neuropathy?

Neuropathy is a disease or dysfunction of one or more of your peripheral nerves that can result in numbness, weakness, and pain. It could impact the sensory nerves, motor nerves, or even the autonomic nerves.

While it is a painful condition which could impact all parts of the body, it usually impacts the extremities such as your hands and feet.

Neuropathy can have a severe impact on the way that you walk and wear your footwear when it affects your feet and lower limbs.
Signs & Symptoms of Peripheral Neuropathy
Your feet may gradually become numb and you may have a prickling or tingling sensation in your feet or hands that may spread to the legs and arms eventually.
A sharp, jabbing, throbbing, freezing or burning pain sensation.
A more extreme sensitivity to touch.
A lack of coordination and balance that may cause falling.
Muscles can become weak or paralyzed if your motor nerves are affected.
If your autonomic nerves are affected you may develop a heat intolerance and suffer from bowel, bladder or digestive disorders.
Changes in blood pressure causing dizziness and lightheadedness may also occur when your autonomic nerves are affected.

Peripheral neuropathy has the ability to affect one nerve which is called mononeuropathy, two or more nerves in different areas called multiple mononeuropathies or many nerves in many areas referred to as polyneuropathy.

A good example of mononeuropathy is a condition called Carpal Tunnel Syndrome. In most cases where people have peripheral neuropathy, they have polyneuropathy.
The Different Types of Neuropathy

There are four different types of neuropathy;
Peripheral Neuropathy

Peripheral Neuropathy is also called diabetic nerve pain and distal polyneuropathy. This is one of the most common forms of Neuropathy caused by diabetes that affects the nerves leading to your extremities such as feet, legs hands and arms.
Proximal Neuropathy

Proximal Neuropathy is also called Diabetic Amyotrophy and is a form of Neuropathy that causes muscle weakness.
Autonomic Neuropathy

Autonomic Nerves keep your body functioning normally and maintains your body’s homeostasis. Autonomic Neuropathy can affect many different systems of your body such as the digestive system or bladder.
Focal Neuropathy

All of the Diabetic neuropathy types are examples of polyneuropathy except for focal Neuropathy.

Focal Neuropathy affects only one specific nerve and comes on suddenly.

Focal Neuropathy often affects the nerves in the head particularly the ones going to the eyes and can also affect nerves in the torso or legs.
Causes Of Neuropathy

There are a few people for which there is no specific cause for their Neuropathic condition, this is known as Idiopathic Peripheral Neuropathy. Other causes of Neuropathy are as follows;
Diabetes is the most common cause when poorly treated because the high blood sugar levels causes damage to your nerves.
Some vitamin deficiencies such as B12 and Folate.
Certain drugs such as chemotherapy medication and HIV medicines.
Poisonous toxins such as constant contact with insecticides.
certain types of cancers such as Lymphoma and Multiple Myeloma.
Drinking alcohol excessively.
Chronic kidney and Liver disease.
Certain injuries where you have to wear tight casts and bandages that put pressure on your nerves.
Infections such as HIV, Shingles and Lyme disease.
Connective tissue disease like Rheumatoid Arthritis, and Lupus disease.
Certain inflammatory diseases as well as some hereditary diseases.
Managing Neuropathy

Neuropathic pain can be treated with non-steroidal and anti-inflammatory drugs as well as Anticonvulsant and antidepressant drugs in some cases.

Diabetes is a condition that is involved in Neuropathy, and by managing this disorder, you can also greatly alleviate the pain of Neuropathy.

With more severe and complicated cases a pain specialist may be required to use and an invasive or implantable device that will adequately control the pain.

Electrical stimulation of the nerves involved in causing the pain will help to reduce and manage the pain significantly.
Other Treatments for Neuropathy
Physical therapy
Counseling to manage pain.
Massage Therapy.
Acupuncture Therapy.
Using magnetic insoles orthotics.

Neuropathic pain does not respond well to standard pain treatments and may get worse rather than better over time.

A multidisciplinary approach where you combine therapies may be a much more effective way of controlling neuropathic pain.
Exercising for Neuropathy

The general benefits of aerobic and flexibility exercises are well known to most people and aid in increasing movement and your heart rate for a healthier lifestyle. Aerobic and flexibility exercises can be one of the most important treatments and health advantages for people suffering from peripheral neuropathy.

Physical activity improves your blood circulation and strengthens your nerve tissues by increasing the flow of oxygen to them. One of the biggest problems of neuropathy is reduced mobility which can result in muscular atrophy or shrink and tightening of the muscles as well as a decrease in metabolism which in turn reduces energy and cause weight gain.

Aerobic and flexibility exercising will improve your physical functioning, muscle flexibility, and strength as well as help you to maintain your weight and improve pain tolerance. In diabetics, aerobic exercises also aid in controlling blood glucose levels lowering your insulin requirements.

Neuropathy Affect on Feet and Legs

When you suffer from neuropathy, your feet and legs are usually affected first which is then followed by your hands and arms. Peripheral neuropathy causes numbness and a tingling, burning sensation in your feet and legs that usually becomes worse at night.

The most troublesome symptom of peripheral neuropathy is the lack of feeling in your legs or feet which increase your risk of injury and reduces your healing rate. Having feet that are numb also means you cannot feel cold or heat which may lead to feet overheating or suffering frostbite.

In general wearing, the correct footwear for neuropathy can protect your feet from injury, heat or cold where you are unable to feel as well as provide you with the right comfort and support.
Why Choosing Good Shoes Is Important

Neuropathy can bring changes to the form and functions of your foot that can lead to ulcers and foot deformities.

To reduce the damage that Neuropathy bring about and relieve the pain and symptoms, you will need specially adapted shoes for this condition.

Types of Footwear for Neuropathy

Walking is one of the best activities that are beneficial for your health and well-being and can also provide good results when you suffer from neuropathy or Diabetes.

Although when you have Diabetes, your Neuropathy one of the symptoms are reduced sensation in your feet making it very hard to know when your feet are injured, uncomfortable, overheating or cold. When you have impaired blood flow to your feet infections are harder to fight off, and your feet heal very slowly.

Most foot injuries can be prevented by wearing shoes that fit properly, and that provide appropriate support and protection against foot irritation, injury risks, and pressure points.
What To Look For

Shoes that have a roomy toe area and flexible fit with lightweight, breathable materials will keep your feet well ventilated and ensure a comfortable fit. Shoes for Bunions have a wider Toe box and more roomy fit in general and therefore are also a good choice for Neuropathy symptoms.

Padding where needed, as well as a cushioned insole or midsole, provides not only comfort but support as well. A moisture-wicking lining with antimicrobial properties will reduce your risk of infection and keep your feet odor free.

Lastly, a durable and thick outsole will protect you against punctures and provide excellent shock absorption.

Always remember to opt for a shoe that is seam free and does not irritate or chafe your skin which can cause blisters and infections. You can look at the Best Shoes for Diabetics which are also suitable if you suffer from Neuropathy.
Features of the Best Shoes for Neuropathy

In some cases, there is a complete loss of sensation in the foot which makes it difficult for the foot to protect itself by using pain as a warning. Therefore you need to make sure that your footwear is protective and a good fit, especially if you have other foot deformities.

Another symptom of Neuropathy is warm, dry skin. Therefore an insole that provides cushioned shock absorbency and evenly spreads pressure is required. Because of limited joint mobility, you will also need good shock absorbency through the heel, a sturdy outsole, rocker-bottom sole, and a pressure dispersing insole.

The most important aspect to take into consideration is to get a shoe that is suitable for the foot deformity or condition that has resulted from Neuropathy. Comfortable Walking Shoes can likewise be considered as a good choice for those who suffer from Neuropathy.
Reviews: Top Rated Shoes for Neuropathy

Below we have listed some of the best choices of shoes that are suitable for people who suffer from Neuropathy.

The chosen shoes will cater for most of the most common symptoms associated with Neuropathy.


Slip On Dress Shoe for Neuropathy

Eastland Yarmouth – Men

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Eastland Amore – Women

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The Eastland Amore and Eastland Yarmouth is a semi-formal shoe that can be worn casually and as a dress shoe that will give you a comfortable and flexible fit.
A custom fitting dual elastic gore for easy on and off in the Eastland Amore.
Smooth leather uppers and a soft sock lining that is gentle on your feet.
The footbed is well padded and gives excellent arch support.
The hand sewed Opanka stitch-to-sole construction provides a flexible and “no break-in” fit.
Long lasting and durable wear in a shoe that is comfortable and lightweight.
A shock absorbing polyurethane outsole that offers durability and excellent traction.
A slight heel for added support.
An excellent choice for a work shoe if you work in a professional environment.
Available in black and brown for the Amore and many different neutral colors for the Yarmouth Loafer.


Dress Sandal and Dress Shoe for Neuropathy

Naot Wisdom Flat – Men

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Naot Loop – Women

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The Naot Loop Dress sandal and Naot Wisdom Flat for men is a perfect choice for a night out or a day in the City. These shoes offer all the comfort features required for the symptoms of Neuropathy as well as a more narrow fit.
The inner sole is manufactured using cork and latex that is covered in leather with a microfiber center strip for comfort and support.
The upper of the Naot Loop for women consists of delicate leather straps that are gentle and non-irritating to the feet.
Adjustable Gore on both sides of the instep for a better fit.
A durable synthetic outsole.
Available in a slim or Medium fit.
The Naot Wisdom Flat for men has a padded technical lining in the front for enhanced comfort and dryness as well as hand-sewn strobe construction for flexibility and durability.


Neuropathy Sandals

Finn Tunis – Men

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Finn Sylt – Women

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The Finn Sylt and Finn Tunis is an orthopedic sandal designed to provide relief from all the symptoms resulting from Neuropathy and other foot conditions. A handmade slingback sandal that is extremely comfortable and durable for everyday wear.
Durable and soft leather uppers with a vegetable-tanned leather lining to help wick away moisture.
A shock-absorbing, removable, comfort footbed that is ergonomically designed to support and cushion your feet.
Adjustable straps that allow a more customized fit.
A stylish and fashionable design.
The footbed is curved with an orthopedic design to mold to your feet with every step.
A durable outsole that offers excellent support.
Available in a range of colors.


Comfortable Neuropathy Hiking..
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Today's short post from neuropathydr.com (see link below) reflects what has now become common and correct advice for people living with nerve damage symptoms - take an holistic view of your treatment. This means that the old-fashioned treatment of taking a sort of pain killer from a long-established list until something works, is both time-consuming and ultimately ineffective in managing your symptoms. You need first to get a definitive diagnosis (not a given with neuropathy) and then with the help of a range of qualified health professionals, develop a plan that involves various treatments, life style changes and therapies that best suit your case. Neuropathy is never the same for everyone, so finding a range of treatments is the only logical approach that may work and even then, there are no guarantees. What is vital is that you have a good relationship with your 'main' doctor, so that he or she will take the time to search out the best solutions for you. If you've been diagnosed with neuropathy and sent home with one prescription for medication...ask some serious questions because that is plainly not good enough.

A Common-Sense Approach to Neuropathy Treatment

by john | Feb 11, 2019 | Chemotherapy Induced Neuropathy, Diabetic Neuropathy,

One of the things that we see frequently are patients with pain or neuropathy symptoms for many years before having a professional evaluation. In these cases, it is so crucial to have very thorough evaluation before jumping to conclusions about what may or may not be going on. Making assumptions that are not based in fact is dangerous. This is a big reason you need to ask for a common-sense approach to neuropathy treatment.

Too often, patients search for answers without an accurate diagnosis and thus never have effective treatment. This is becoming more common, especially when the only consulting “doctors” have been Facebook and Google. This also means that too often today the actual conditions underlying or aggravating neuropathy are going untreated.

The consequences of this are dangerous. The longer you delay proper evaluation and treatment, the more difficult effective treatment could actually be.

This is not to say every case of neuropathy is curable; unfortunately, it is not.

But we now understand the impact of things like lifestyle, cigarette smoking, and body weight have on most forms of peripheral neuropathy, and related disorders such as fibromyalgia and chronic pain.

So here’s the best advice we can give you. Realize just how important it is to get the most accurate diagnosis possible and then proper treatment that targets the overall improvement of your health—early! Work with healthcare professionals that understand all possible underlying causes of your situation.Be sure to identify any correctable things such as poor diet, cigarette smoking, et cetera.

Above all, it is important to take responsibility for your own care, in your own health. Neuropathy and chronic pain are not one-size-fits-all disorders. Patients who do the best realize this—and take action every single day.

Be sure to get regular physical activity as tolerated. Ask for proven modern treatments including neurostimulation and laser.

Finally, listen to your body. Pay attention to what it is telling you. Years from now, you’ll be glad you did.

Join us HERE for much more help and to contact us personally.

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Today's post from sciencedaily.com (see link below) suggests a possible link between a relatively simple nerve injury and the onset of ALs. Now you shouldn't be alarmed at this, despite the publicity that ALS has been getting recently - the link has only been made in the lab with animal models. Nevertheless, in this article, the science makes sense. First of all, what is ALS and why does it frighten so many people these days? According to Wikipedia (and confirmed by other sources), Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a specific disease that causes the death of neurons controlling voluntary muscles. ... ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. You can see by the description, that ALS is definitely a form of neuropathy and it can have serious consequences. However, luckily, it's relatively rare in that it is estimated that only 2 to 5 people in every 100,000 world-wide are effected by the condition. Nevertheless, the recent discovery that it can be caused by a simple peripheral nerve injury, may alarm many neuropathy patients. If you're at all concerned that your muscle weakness is moving so fast that it's affecting your daily life, consult your doctor and have a good chat.

Can a nerve injury trigger ALS?
Date: February 20, 2019 Source: University of Illinois at Chicago 


Researchers have demonstrated that a peripheral nerve injury can trigger the onset and spread of the disease in an animal model of ALS.

A growing collection of anecdotal stories raises the possibility that nerve injury in an arm or a leg can act as a trigger for the development amyotrophic lateral sclerosis, or ALS -- a progressive neurodegenerative disease also known as Lou Gehrig's disease, named after the famous New York Yankee who died of it in 1941.

The connection between ALS and athletes runs deeper than a single ballplayer; people who engage in intense physical activities, such as professional athletes and people in the military, are more likely to be affected by ALS. In some, the disease seems to start after an injury -- muscle weakness at the site of the injury slowly spreads to new areas until weakness in the muscles responsible for breathing causes suffocation.

Now, researchers at the University of Illinois at Chicago are the first to demonstrate that a peripheral nerve injury can trigger the onset and spread of the disease in an animal model of ALS. Their findings, published in the journal Neurobiology of Disease, show that rats genetically engineered to develop ALS-like symptoms have an abnormal inflammatory response in the region of the spinal cord associated with an injured peripheral neuron. As the spinal cord inflammation and other damaging processes spread, they cause progressive muscle weakness throughout the body.

"We know that in some patients with ALS the weakness starts in a hand or leg, and the disease spreads. Coincidentally, the patient will describe a recent or remote injury to that same hand or leg that matches the location of their disease onset. We wanted to study how environmental contributions, such as a focal nerve injury, affects how the ALS starts and spreads," said Dr. Jeffery Loeb, the John S. Garvin Endowed Chair in Neurology and Rehabilitation in the UIC College of Medicine and corresponding author of the paper.

"Our results show that a single nerve injury, which is small enough that it only causes temporary weakness in normal animals, can start a cascade of inflammation in the spinal cord that initiates and causes the disease to spread in genetically-susceptible animals," said Loeb. "The ability to precipitate the disease through injury gives us a new animal model we can use to identify treatments for ALS that focus on stopping the spread of the disease after it first starts. The medical community has no therapies that significantly slow or stop the progression of the disease and we are currently putting all of our efforts on developing a drug to do this."

While a growing number of genes have been associated with the development of ALS, only about 10 percent of ALS patients have one or more of these gene mutations and none can explain why the disease presents with localized weakness or how it spreads. Ninety percent of ALS patients develop the disease for unknown reasons.

"This raises an important question of the relative contributions of environment versus genes or nature versus nurture," Loeb said.

One of the most highly-studied gene mutations in ALS is in a gene called SOD1. In their study, Loeb and colleagues used rats with mutated forms of the SOD1 gene, which causes the animals to have higher levels of the SOD1 enzyme and to develop ALS-like symptoms, including progressive muscle weakness, starting at 15 weeks of age.

The researchers surgically injured a single nerve in the leg of both SOD1 and wild-type rats at 10 weeks of age. While all rats had reduced strength in the injured leg post-surgery, the wild-type rats recovered almost completely within a few weeks. The SOD1 rats never returned to normal and also experienced weakness in their other leg.

They also found that surgically-injured rats had elevated and prolonged inflammation, and higher numbers of microglia and astrocyte cells in areas of the spinal cord associated with the injured neuron, and the inflammation and presence of these other cells spread to adjacent neurons.

"This spread of inflammation could potentially explain how the disease spreads once it first starts from the site of injury," Loeb said. "Microglia have many roles, but one role is to prune or eliminate synapses that connect one nerve cell to another. These connections are critical for normal functioning and for survival of neurons during development. Where there was increased inflammation and microglia in the spinal cord, we saw up to a two-fold reduction in the number of synapses."

Loeb explained that once a nerve loses connections with its neighbors, the neighboring cells tend to die off.

"This chain reaction of cell death could be what causes the progressive spread of muscle weakness we see in ALS," Loeb said.

This research was supported in part by the Patrick Grange Memorial Foundation, which was founded in 2013 in honor of Patrick Grange, a former NCAA Division I soccer player at the UIC.

Story Source:

Materials provided by University of Illinois at Chicago. Note: Content may be edited for style and length.

Journal Reference:
Sarah Schram, Donald Chuang, Greg Schmidt, Hristo Piponov, Cory Helder, James Kerns, Mark Gonzalez, Fei Song, Jeffrey A. Loeb. Mutant SOD1 prevents normal functional recovery through enhanced glial activation and loss of motor neuron innervation after peripheral nerve injury. Neurobiology of Disease, 2019; 124: 469 DOI: 10.1016/j.nbd.2018.12.020
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Today's post from peripheralart.com (see link below) may have the cynics among you cringing at the very idea but be careful not to judge a book by its cover...it's entirely possible that proper Chinese medicine may be able to help with your neuropathy symptoms. Western doctors and so-called experts often dismiss Chinese medicine as being a fringe, 'alternative' therapy but it's patently ridiculous to dismiss something so old and well-tried. You should at least be open to the idea of mixing accepted western therapies with Chinese options (whilst carefully researching the possibilities of clashes with certain drugs). This article is the author's own story and it is both well-written and balanced and suggests that a visit to a qualified Chinese doctor may not be a waste of your time or money. When all else fails in standard medical treatment of neuropathy (and let's face it...nothing works 100%!) then exploring your options is only logical. Well worth a read.

Traditional Chinese Medicine cures the “incurable” 
Larry Feign 12 March 2019

Before we discuss neuropathy, let me prove that Traditional Chinese Medicine (TCM) succeeds where western medicine fails in treating supposedly incurable chronic conditions.

When I turned twelve all hell broke loose in the hollow spaces behind my nose. It was as if a tap had been turned on, dribbling a never-ending stream of mucus down the back of my throat. I snorted and cleared my throat a hundred times an hour. I had a bad case of Post Nasal Drip. It got even worse in spring, with constant sneezing, so add Hay Fever to my maladies. My nose was my curse.

My father had the same condition. His throat-clearing shook the house all night. Clearly I had inherited his condition.

My mother hauled me to doctors. One prescribed an antihistamine which he promised would not make me drowsy. He was right: I didn’t make me sleepy. It made me hallucinate! The walls of my bedroom turned into pulsating orange membranes and little people appeared on my bookshelves.

An Ear, Nose & Throat specialist offered a surgical procedure, which he said had a fifty percent chance of success, and the best I could hope for was a thirty-to-fifty percent reduction in mucus. I declined the surgery and threw away the drugs.

Needless to say, I was annoying to be around. One university professor even put me in a separate room during exams. My Post Nasal Drip made me an outcast.

The worst tasting cure ever

From my book AIEEYAAA! Learn Chinese the Hard Way

Years later, I was living in Honolulu, where I met a brilliant and funny woman from Hong Kong. She hauled me to a little shop in Honolulu’s Chinatown, stuffed with strange elixirs and dried sea creatures and floor-to-ceiling chests of drawers. In the back sat a wizened old Chinese gentleman right out of Hollywood casting: skinny as a rake, with a stringy white goatee, wearing a gray button-down tunic and round spectacles. He pressed bony fingers into my wrist, examined my tongue, then scribbled out a list of Chinese characters, which he passed to an assistant. She threw open drawers, weighed out various roots and bark and fungus and leaves on a little brass scale, then bundled everything up and tossed some candied plums into the bag.

Under my Chinese friend Cathy’s supervision, I boiled the herbs down to a foul-looking brew. It was the worst thing I’d ever tasted. No, it was ten times worse than that; my tongue went into shock. And I had to drink it twice a day for five days.

Long and short of it: my Post Nasal Drip dried up completely without any further treatment. No drowsiness or other side effects. It was nothing short of a miracle.

Six months later it returned. Not as severe as before, but the throat clearing resumed. Back to Chinatown.

The old man again examined my pulse and tongue, gave me a similar but not identical collection of roots and herbs, and some stones thrown in for good measure. Didn’t improve the flavor.

My Post Nasal Drip went away for a full year!

During that year Cathy and I were married. No throat clearing at the wedding, but it came back shortly before a visit to her family in Hong Kong. My brother-in-law brought me to the family herbalist. Same routine. Different roots and bark, which tasted just as bad. This time I drank it daily for one whole week.

It cured me forever.

That was 1984. I’ve had no Post Nasal Drip ever since. No Hay Fever either. My condition, which western doctors said was incurable, which my father suffered from his whole life, was permanently healed by Traditional Chinese Medicine.

When our son turned twelve, he too started coughing and clearing his throat. We knew just what to do. It worked.

Reading my pulse

 What’s in my prescription? Read for yourself!

Decades later, when a neurologist declared that I had Peripheral Neuropathy, an incurable chronic condition, it was a déjà vu moment. Time to visit a Chinese herbalist.

Once again I faced an elderly Chinese gentleman in the back of a cramped little office. He examined my pulse and tongue, felt my fingertips, and asked a few questions about my numbness, though he wasn’t particularly interested in the details.

He explained that my body was running cold. He wasn’t talking about my temperature. In Chinese medicine, one’s body can be either too “cold” or yin, or too “hot” or yang. Mine was unbalanced toward the cold/yin side. I had to eat fewer “cold” foods, such as celery, carrots, watermelon, and tofu; and eat more “hot” foods like eggs, bamboo, mushrooms, and ginger.

Of course, my neuropathy was more than just a matter of hot/cold imbalance. My pulse told the full story.

Feeling my pulse had nothing to do with my heart rate. By placing his fingers simultaneously on three spots on my arm, the herbalist can determine the length, strength, depth, and quality of the pulses, and use that information to come up with a diagnosis. If a pulse strikes all three spots at once, it’s considered long; if it varies at the three spots, it’s short. Depth is determined by applying different pressure to each of the three spots, to measure how far down the pulse is strongest. Pulse quality can be a number of factors: is it ripply or rough, slippery or choppy? There are thousands of combinations of pulse length, strength, depth, and quality, and together these inform the Chinese medicine practitioner about where the troubles lie inside your body, just as clearly as if he’d taken a full body x-ray. Marks and colors on the tongue provide additional information.

Don’t scoff. After 5000 years of development, Chinese traditional medicine has built up a pretty reliable system of associating pulse readings to what ails a person. Modern western medicine, by contrast, has been around for 250 years. Western doctors still have a lot to discover.

Roots, bark, twigs, peels, and fungus

Preparing the prescription The herbalist’s assistant rummaged in jars and drawers and weighed out various roots, twigs, leaves, seeds, tree fungus, and dried fruit skins. This was not a prescription for peripheral neuropathy per se; it was a prescription for me. Traditional Chinese medicine, unlike western medicine, doesn’t target a specific condition. There is nothing in the prescription to specifically heal nerves or synapses or blood capillaries, or manage antibodies. Instead it promotes balance and reduces blockages in energy flow to specific parts of the body. The body heals itself. The herbs’ function is to enhance that power.

One day’s dose I know, you’re what you’re thinking: “Weird!” But consider where pharmaceutical research originates. Eighteenth century European medical practitioners made the transition from European herbal medicine by quantifying the effects of various herbs, foods, and animal parts. As scientific research progressed, various elements were isolated from such natural sources, in order to distill or extract them in concentrated form. While many pharmaceuticals nowadays are synthesized in laboratories, much research still originates in studying components from the natural world.

There is logic in the western scientific method: by isolating those molecules and compounds from the original natural sources, doctors can administer precise potencies to target specific cells or organs within our bodies to obtain a measurable effect. Yet there are certain drawbacks to this approach. First, it treats our bodies as collections of objects—organs, tissue, fluids, bones—each with its own mechanical or chemical function, working in tandem with each other inside a larger machine. This is real, but it isn’t the full picture. Such a mechanical/biochemical view is limited, just like our senses of vision and touch are limited to three dimensions. Western medicine has trouble explaining, or even acknowledging, the fourth and maybe fifth dimensions of the body as something beyond mechanics and molecular structure. How can it explain the link between a pressure point on the sole of one’s foot with one’s liver or lungs, something which is long proven in Chinese medicine?

Another analogy might be the way emotions affect our health. If we’re sad or angry or depressed, we get sick easier, or our neuropathy symptoms flare up. Is it really just a biochemical effect of Serotonin, Norepinephrine, Dopamine, etc.? My wife, the clinical psychologist, has seen severely ill cancer patients improve and even reduce their reliance on drugs once their spirit has been healed. There is much more to our health than biomechanics and biochemistry.

Chinese medicine is sometimes accused of being “unscientific”, in that it doesn’t isolate molecular compounds which can be laboratory tested in precision doses. Today’s five leung (Chinese ounce) of soursop skin may be slightly more potent than last week’s harvest, but it doesn’t matter. It isn’t targeting a specific group of cells. The whole plant—or its leaves, wood, bark, roots, or fruit—with all its mysterious minerals and subnutrients, is treating the whole body. That’s why Chinese medicine works. That’s why Chinese medicine often works where western medicine fails.

Foo cha (bitter tea)

Measuring water by the rice bowl Time for a drink.

First: empty the contents into a ceramic pot. Do not use metal pots or utensils. Pour in five rice bowls full of water. Cover the pot, then simmer until it cooks down to one rice bowl of liquid. Mine takes around ninety minutes. Drink it hot.

Later the same day, prepare the second dose by adding three bowls of water to the herbs, and again cook it down to one bowl. Drink once again.

Chinese herb cooker I have a special cooker just for Chinese medicine. But any ceramic pot can be used.

How does it taste?

Don’t ask. It isn’t something I would drink for pleasure. And I understand why most Chinese herbalists give you a handful of candied plums: it’s a nice sweet treat for your tongue after the punishment of a bowl of foo cha (bitter tea).
So…does it really work?

Absolutely. When my neuropathy symptoms were at their worst, I felt the relief flow into my fingers and toes every time I consumed a dose. Now that I’m 95% cured, I credit TCM as part of the solution.

Disclaimer: I don’t rely on Chinese traditional medicine alone. I take numerous natural supplements daily, based mostly on western traditional herbal medicine and naturopathic remedies. Chinese and western traditional approaches have some things in common and many things different. I believe they can work in tandem. However, I would be very hesitant to mix Traditional Chinese Medicine with prescription medication. For that and many other reasons, I don’t take pharmaceuticals of any kind. Not even over-the-counter painkillers, because I’m concerned about the interactions.

I don’t use Chinese medicine every day. It isn’t meant to work like that. Taking Chinese medicine is supposed to realign your body, like unbending a warped wooden plank by applying pressure. It straightens out for a while, then may bend back, though not as much as before. So I drink my bitter tea twice a day for five or seven days in a row, then stop. Two weeks later I visit the herbalist again for a new checkup and prescription. Sometimes it’s a month between treatments.

I can’t isolate which of my remedies is working best, whether the Chinese herbs or any particular supplement. But in combination, I’ve almost completely cured my neuropathy. As of today, it has been gone for good from my hands for over four months. A bit of numbness lingers in the extremities of my feet and hasn’t made much progress for nearly two months.

Time to visit the herbalist again and swallow some bitter medicine down to the tips of my toes.

Where can I buy such a tea?

Let me clarify: There is not a specific Peripheral Neuropathy tea or formula you can buy. A Traditional Chinese Medicine practitioner will create a prescription that is for you alone, based on your specific body condition. Chances are that it will contain many of the same ingredients as mine, but it will be formulated specifically for you, not just for your neuropathy but also other things going on with your health.

You visit the TCM practitioner once, then go home and prepare the tea yourself and watch your symptoms. If needed, you go back a few weeks or even a few months later for a new treatment, revised to your new body condition.

There is a growing number of properly trained TCM (Traditional Chinese Medicine) practitioners around the world, who are not necessarily Chinese themselves. Here are a few resources to search for properly trained practitioners:

USA: National Certification Commission for Acupuncture and Oriental Medicine

Australia: Australian Acupuncture and Chinese Medicine Association

UK: The Association of Traditional Chinese Medicine and Acupuncture
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Today's post from thewellproject.org (see link below) is directed at the HIV community, up to 45% of which end up with nerve problems either due to the virus, or the (older) medication they need to take. However, the information given here applies also to most other forms of peripheral neuropathy, so can be read as a good general guide to neuropathy and its treatment. It is suggested here that if you remove the root cause of your neuropathy (or the medication that has caused it) that after a couple of months, the neuropathy also reduces. i would take issue with that fact. It's very rare that an established neuropathy can disappear and there is definitely, currently no cure but other wise, the article provides some useful information. Worth a read.

Peripheral Neuropathy 
Submitted on Mar 1, 2019

Table of Contents
What is peripheral neuropathy (PN)?
What causes PN?
Who is at risk of developing PN?
How do you know if you have PN?
PN treatments

What is peripheral neuropathy (PN)?

Many people living with HIV develop problems that involve the nervous system. The nervous system controls thinking, movement, sensations, and feelings.

There are two parts of the nervous system: the brain and spinal cord (central nervous system) and the peripheral nerves (peripheral nervous system). The peripheral nerves run throughout the body like webbing, connecting all parts of the body to the brain and spinal cord. Any disorder or problem that involves damage to the peripheral nerves is called peripheral neuropathy or PN.

Peripheral neuropathy affects over 20 million Americans. The most common form damages not just one nerve (mononeuropathy), but several nerves. This is called polyneuropathy and is what most people living with HIV are talking about when they say they have neuropathy. Most health care providers know it as a 'sock and glove' nerve problem, because the areas most affected are your feet and hands. 

What causes PN?

There are many causes of neuropathy, most commonly diabetes; however, the causes of PN due to HIV are not completely understood and may involve multiple factors. Researchers suspect that either HIV, and/or drugs that are toxic to the nervous system (neurotoxic drugs), or a combination of both may cause damage to the peripheral nerves.

PN happens when the nerves between the feet and, less commonly, hands and the spinal cord become damaged. Like frayed wires that can spark or misfire, these damaged nerves do not send their electrical signals properly. As a result, PN can cause feelings of numbness, tingling, burning, itching, or shooting pain. Some people with PN describe their pain as "holding a lit match to my feet," or "walking on broken glass." This chronic (long-lasting) pain can lead those who suffer from it to become isolated and depressed

Who is at risk of developing PN?

There are certain risk factors for PN:
Low CD4 cell count
Longer duration of HIV infection
Older age (greater than 50 years)
Medical conditions (for example, diabetes)
Alcohol abuse
Vitamin B12 deficiency
Neurotoxic drugs (see below)

Many drugs that were used more commonly in the past to treat HIV or HIV-related conditions are neurotoxic. The most familiar are the HIV drugs commonly called the "d-drugs." These drugs are rarely used anymore because they are so often toxic to the nervous system:

ddI (didanosine,Videx)
d4T (stavudine, Zerit)
ddC (zalcitabine, Hivid)

Other (non-HIV) neurotoxic drugs include:
INH (isoniazid)
Myambutol (ethambutol)
Flagyl (metronidazole)
Macrobid or Macrodantin (nitrofurantoin)
Cipro (ciprofloxacin)
Dilantin (phenytoin)
Antabuse (disulfiram, esperal)
Certain cancer chemotherapy drugs (e.g., vincristine)

How do you know if you have PN?

Signs of PN include:
Pins and needles
Feet or hands feeling like they are asleep
Stumbling when you walk
Feet or hands throbbing or cramping at night
Sudden sharp shooting pains

It may be easy for you or your health care provider to overlook slight or occasional sensations like the ones listed above. It is important that you not ignore these symptoms, because they may get worse. If you have any of these symptoms, talk to your health care provider right away so that you can be diagnosed and treated early.

Your health care provider will examine you and ask questions about your symptoms, medications and supplements, work environment, exposure to toxic substances, history of alcohol use, and family history of neurological disease. Usually, PN is diagnosed based on signs and symptoms you report as well as your physical exam. However, your health care provider may also order tests to determine the type and extent of nerve damage. Blood tests to rule out other potential causes of PN are very common.

If your symptoms are unusual, your provider may refer you to a neurologist, who may suggest nerve conduction velocity testing or an electromyography (EMG) test for further evaluation. Nerve conduction velocity looks at the speed of the signals your nerves send, and an EMG looks at whether your muscle can respond normally to an electrical signal from a nerve. Other types of sensory testing and skin biopsies are generally used only in research. 

PN Treatments

Unfortunately, there are no approved medical treatments to cure PN that is related to HIV. For now, the key to treating PN is to remove the cause and control the pain. If HIV drugs are the cause of the PN pain and those drugs are stopped when symptoms of PN are first noticed, the pain most often goes way. However, this may take up to eight weeks because nerves are slow to heal. 

Removing the cause:

You can minimize HIV's effect on your nervous system. It is important to take your HIV drugs on schedule and as prescribed so that your viral load stays low and your CD4 count remains high.

If you are on a d-drug (i.e., Videx, Zerit), talk to your health care provider about stopping or switching the drug. If you decide to stop or switch a drug, it may take six to eight weeks for the PN symptoms to decrease. If the symptoms continue, the PN could be due to HIV itself. 

Relieving the pain:

Controlling the pain can require a combination of drugs and other therapies. Remember to discuss any medications, street drugs, supplements, or therapies you are currently using with your health care provider. 

Pain relievers: Using Tylenol (acetaminophen) or Advil (ibuprofen) for mild symptoms of PN may help
Anti-seizure drugs: Your health care provider may prescribe drugs such as Neurontin (gabapentin), Lamictal (lamotrigine), Lyrica (pregabalin), or Topamax (topiramate) for nerve pain
Antidepressants: Some antidepressants have been found to relieve pain by changing the chemicals in your brain that help you feel pain. Drugs such as Elavil (amitriptyline), Pamelor (nortriptyline), or Cymbalta (duloxetine) may help.
Transcutaneous Electrical Nerve Stimulation (TENS): A therapy in which gentle electrical current between electrodes placed on the skin eases pain
Capsaicin: Capsaicin is the chemical produced in chili peppers that gives them their 'heat.' It is available over-the-counter in creams or patches and may cause a burning sensation when you begin using it. It works by reducing a substance that sends pain signals to the brain.
Complementary therapies such as acupuncture, massage, yoga, hypnosis, biofeedback, and meditation
Supplements such as alpha-lipoic acid
A visit to the neurologist to figure out the extent of the PN damage, and which treatments are recommended
A visit to the podiatrist to discuss how to care for your feet and what shoes or socks you should wear

Narcotic drugs (opioids are one kind of narcotic) had been used in the past to relieve the pain of PN, before the discovery of other effective methods like the ones outlined above. Narcotics are not a first step in treatment for PN. 


The easiest way to remember the keys to early diagnosis, treatment and management of PN is to think AIMS:

– Take the time to notice what your body feels like and how you move

Information - Never stop asking questions, reading, or trying new drugs, therapies, or tools

Medical Team
– Choose health care providers who are knowledgeable about HIV and neurological problems, and who listen to you and answer your questions

Support – Finding support is critical. Peer organizations or local HIV support groups can offset the sense of helplessness, isolation, and depression often felt by people who experience chronic pain. Talking with peers can give you an opportunity to share your frustrations and successes with those who understand what you are going through. Visit The Well Project's blog, A Girl Like Me – an online community of women living with HIV and the heart of our community – or get connected to one of our groups.
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Today's post from emedicine.medscape.com (see link below) is a less well-known form of neuropathy but that may be because it is less talked about and often goes unrecognised. What is it with men and their nether regions!!!It talks about so-called bicycle seat neuropathy and if you've ever ridden a bike, you'll know what region we're talking about and how painful an 'accident' can be. This is a problem that can apply to both men and women although the external features of a male, make it more likely to happen to men although perineal numbness can be just as troubling for women.

Bicycle Seat Neuropathy
Updated: Apr 21, 2016 Author: John M Martinez, MD; Chief Editor: Craig C Young, MD more...


Bicycle seat neuropathy is one of the more common injuries reported by cyclists. [1, 2, 3, 4, 5] The injuries and symptoms are due to the cyclist supporting his or her body weight on a narrow seat, and they are believed to be related to either vascular or neurologic injury to the pudendal nerve. [2, 5, 6, 7, 8, 9, 10]

For excellent patient education resources, visit eMedicineHealth's Men's Health Center and First Aid and Injuries Center. Also, see eMedicineHealth's patient education articles, Impotence/Erectile Dysfunction, Erectile Dysfunction FAQs, and Bicycle Safety.



United States

A wide frequency range has been reported for bicycle seat neuropathy, but it is believed to be underreported. The medical literature contains several case reports of reversible neuropathy [5, 9] and several retrospective studies surveying participants in long-distance cycling races and tours. [8, 11, 12]

Andersen and Bovim surveyed 260 cyclists participating in a long-distance bike tour that was 335.54 miles (540 km) in length. [8] Of responding males, 35 (22%) reported symptoms of either numbness or pain in the pudendal area. Thirty-three (21%) males reported penile numbness, with 10 (6%) male cyclists reporting symptoms that lasted longer than 1 week. In addition, 21 males (13%) reported symptoms of impotence, 11 of whom experienced symptoms for longer than 1 week, and 3 of whom reported impotence lasting longer than 1 month. [8]

Kuland and Brubaker reported that during the 1976 Bikecentennial tour, there was a 7% incidence of pudendal and/or penile numbness, but this study only surveyed 89 of 1200 participating cyclists. [11]

Weiss studied symptoms of cyclists participating in a 500-mile (804.97 km) bicycle tour. [12] Of the participating cyclists, 45% reported at least mild and transient perineal numbness; 10% reported the symptoms as severe, and 2% of the cyclists had to temporarily stop riding. Perineal numbness has also been documented in women cyclists. LaSalle et al surveyed 282 female members of a Dallas cycling club. [13] In this group, 34% of the women reported perineal numbness.

Potter et al assessed the differences between men and women with regard to bicycle saddle pressure distribution during seated cycling. [14] The authors noted that there were significant differences between the sexes in saddle loading, and these differences were especially relevant with regard to the position of the bicycle handlebar positions. In particular, the drops hand position shifted the rider's weight, such that more weight was supported on the anterior pelvic structures. [14]

Sport-Specific Biomechanics

The cause of bicycle seat neuropathy has been attributed to several different ischemic events. Amarenco et al and Oberpenning et al hypothesized that compression of the pudendal nerve as it passes through the Alcock canal causes the condition. [9, 15] The Alcock canal is enclosed laterally by the ischial bone and medially by the fascial layer of the obturator internus muscle. The pudendal nerve exits the canal ventrally, below the symphysis pubis, and innervates the genital and perineal regions.

Oberpenning et al postulated that long-distance cycling results in the indirect transmission of pressure onto the perineal nerve within the Alcock canal. [9] Weiss and Bond separately proposed that bicycle seat neuropathy is due to temporary and transient ischemic injury to the dorsal branch of the pudendal nerve secondary to compression of the nerve between the bicycle seat and the symphysis pubis. [12, 16] Weiss also theorized that the genital branch of the genital-femoral nerve could be involved in cases in which scrotal paresthesia is reported. [12]

Bicycle seat design (eg, shape) may be the major extrinsic factor for the development of bicycle seat neuropathy. [1, 4, 6, 17, 18, 19, 20, 21] Results of computer modeling reported by Spears et al showed that wider bicycle seats that support the ischial tuberosities decrease pressure on the perineal area. [19] Other studies have also demonstrated the effect bicycle seat design has on penile blood flow [20] and penile oxygen pressure. [21]

Bicycle Seat Neuropathy Clinical Presentation


A recreational or elite cyclist who complains of numbness or impotence after cycling is the typical presentation of bicycle seat neuropathy. [22, 23, 24, 25] The amount of time the athlete spent cycling before the onset of symptoms is variable; however, studies have focused upon longer distance, multiday rides. Use of a stationary bicycle has also been reported as a cause of bicycle seat neuropathy.

Ask pertinent questions while obtaining the history to attempt to elicit other causes of neuropathy or impotence, such as a history of diabetes; metabolic disorders; endocrine or vascular disease; perineal trauma; or testicular, prostate, or intra-abdominal cancers.

Ask questions regarding the timing, duration, and location of the symptoms. Also inquire about the extent of the symptoms; some cyclists report mild numbness and some report more severe symptoms such as impotence or urinary incontinence.

Ask about the length and duration of rides. Also ask about any recent increase in training volume or any changes in bicycles, bicycle setup, or bicycle position.


The physical examination should focus on the urogenital and neurologic systems. A rectal examination may be indicated. The focus of the examination should be to exclude other diagnoses that may require different treatment and management.

The urogenital examination should include examination and palpation of the penis, testicles (in males), and perineal area.

Neurologic examination should include testing of motor and sensory function of the same regions.


The cause of bicycle seat neuropathy has been attributed to several different ischemic and neurologic events (see Sport-Specific Biomechanics).
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Today's post from ehealthdigest.org (see link below) is one of thousands that are emerging every day that endorse the nerve pain relief that cannabis can bring. This person vapes his cannabis to achieve the best effects but there are many other alternative means of taking cannabis and whatever you eventually choose and how difficult the process may have been to get to that point, you have to ask yourself...what is worse...taking cannabis or submitting to relentless nerve pain every day. The authorities and the law are catching up and technology is creating means of taking medical cannabis that give you choice as to what's most comfortable for you but you have to admit...it sounds like an attractive option when you have neuropathic symptoms.

Cannabis Has Restored My Body From Fibromyalgia, Seizures, and Neuropathy
By admin- March 9, 2019

Painkillers were stolen so Doc got me my card. Cannabis has restored most of the life I lost.

In 2000, I was diagnosed with Fibromyalgia, Peripheral Neuropathy, Raynaud’s Syndrome and Non-Epileptic Seizure Disorder. I’ve always had a low seizure threshold, which means even on meds, I still have seizures.

Within a couple years I was on Oxycontin, Vicodin, Ambien, Flexeril, and three anti-seizure meds and then a couple more to handle side effects.

In 2004, my son’s friend stole all my meds a couple hours after refilling them. I immediately went to my doctor who told me that he was forbidden by law from replacing them. He then excused himself, went into his office, and came back into the exam room with some paperwork. He told me that the health care corporation he worked for had a policy against it, but he was signing a medical cannabis card application for me. He also pulled out his wallet and gave me the state fee in cash.

I did get through withdrawals, even with cannabis not something I want to repeat….

I started smoking flower, at first whatever I could get, then settled on Blue Dream, Train Wreck, Bubble Gum, Nevilles Haze and Jack Herrer. Between them I found relief from pain, insomnia, AND seizure frequency dropped dramatically.

In 2011, I had a traumatic brain injury which resulted in a blood clot on my pituitary gland. This left me with worse tremors and worse seizures, and an endocrine system that is completely dysfunctional. It also left me with a form of anorexia, where I have no sensation of hunger and persistent nausea.

I now usually grow my own, and produce high quality concentrates for my own use. I smoke flower, vape and dab strain specific concentrates and make edibles and balls for myself.

I dose a dab or hit off the vape about once every three or four hours, and smoke a bowl of train wreck or another heavily seating strain flower before bed.

Cannabis has given me back most of the life I lost.


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Today's post from neuropathyreliefguide.com (see link below) takes a look at one of the supplements many people take in the hope that it will reduce their neuropathy symptoms - Q10. This article attempts to explain why Q10 may be beneficial and at the same time, explains both what both neuropathy and Q10 are. It refers to a scientific animal study from 2013 but has to point out that the results of this study were inconclusive, in that it couldn't say why Q10 works but concluded that it probably does. Now given that Q10 is an anti-oxidant, it should be useful, especially for older people, whose cell damage is more extensive due to age. However, there is still no conclusive proof. Nevertheless, taking Q10, along with maybe other antioxidants such as Acetyl L-Carnitine and Alpha Lipoic acid may produce results that you personally find beneficial. the only advice is...give them time to work...a couple of weeks will probably show no benefit.

Are There Any Scientifically Proven Benefits of Taking CoQ10 For Neuropathy?
Kelly March 9, 2019
Many common physical ailments are difficult to treat—and neuropathy is no exception.

Though modern medicine can work wonders, pharmaceuticals can have side effects and do not always perform as well as patients hope they will. For many patients, supplements can be a powerful adjunct to standard options such as painkillers.

One of these supplements is CoQ10, but why is it so helpful for patients who suffer from neuropathy?

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Understanding Neuropathy
What is CoQ10?
How CoQ10 Might Help Neuropathy
Dosage and Frequency
Other Considerations

Understanding Neuropathy

The nerves in your body can become damaged. This damage could be a result of illness, or as side effects from medication, but it commonly occurs to nerves located in extremities, so your hands, feet, and so forth.

Neuropathy can present in different ways, and the symptoms vary from person to person. Some people may experience painful sensations including a stabbing feeling while others may struggle with numbness.

Other patients can find that they suffer from nerve damage that affects autonomous bodily functions which in turn can affect everything from blood pressure to bladder function.

Indeed, the symptoms of neuropathy can be widespread affecting a range of body functions. As a result, neuropathy can be quite debilitating, and sufferers are typically very eager to find effective treatments.

What is CoQ10?

Treatment for neuropathy often relies on treating the underlying condition, for example, diabetes. Patients may also be asked to reduce their alcohol intake or to stop smoking. Alternatives include the use of anti-inflammatory drugs or an injection of immunoglobulin. However, these treatment options are not always effective.

One of the commonly suggested supplementary treatments for neuropathy is CoQ10. CoQ10 is short for Coenzyme Q10, also known as ubiquinone. It is, in fact, an antioxidant found in every cell in your body. Antioxidants are important because they help to break down free radicals which can lead to cell damage.

Though your body produces some antioxidants, taking supplements such as CoQ10 can have a range of positive effects in part because many people don't produce sufficient amounts of these anti-oxidants, sometimes as a result of advanced age. Research associates a variety of medical conditions with low CoQ10 levels, so increasing it's levels may improve these conditions.

Source: DrJockers.com

How CoQ10 Might Help Neuropathy

One condition that may benefit significantly from boosting CoQ10 levels is neuropathy. The reasons for the development of neuropathy are complex but mainly center around nerve damage. Through academic studies, researchers have determined that it may help prevent neuropathy because it reduces neuron loss.

Neuropathy is particularly prevalent in patients with diabetes. A 2013 animal study found that CoQ10 benefited subjects that were suffering from peripheral neuropathy as a result of diabetes.

In the study, published in the Proceedings of the National Academy of Sciences of the USA[1], researchers found that treatment with CoQ10 reduced the development of diabetes-related neuropathy in the subject by a statistically significant margin.

Though the study could not clarify why it has such as a beneficial effect on diabetic subjects it nonetheless supports the long-held belief that taking this nutrient as a supplement, can halt the progress of neuropathy in patients who have diabetes.

Dosage and Frequency

The evidence shows that it can treat neuropathy by halting the ongoing process of nerve damage. The good news is that it is easy to acquire as a supplement and equally easy to consume as a treatment.

Given that CoQ10 is not yet used in standard medical practice to treat neuropathy, there is no established standard dosage. Nonetheless, 90mg is considered a low dose while a higher dose would be in the region of 200mg.

Most people take a CoQ10 supplement once a day, rather than several times through the day. This nutrient should be taken with food to be properly absorbed in the body.

For most patients, it has relatively few side effects. CoQ10, therefore, makes for a sensible supplement where patients struggle with neuropathy and find that recommended treatment options are not sufficient.


Neuropathy is a debilitating condition resulting from nerve damage, frequently as a result of diabetes. Some research suggests that daily supplementation at a rate of 90mg to 200mg per day with food may improve symptoms without serious side effects.
Other Considerations

While CoQ10 may offer noticeable benefits for improving nerve health and reducing pain, there are many other neuropathy supplements to consider taking. Some of these essential vitamins include Alpha Lipoic Acid, magnesium, benfotiamine, and b vitamins. They have been shown to help damaged nerves heal faster by supporting the myelin sheath, which aids nerve conduction.


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