HNPP · Physical Health

Should you take part in clinical trials for HNPP?

clinical trials hereditary neuropathy hnpp

“Clinical trials” is phrase that’s always bandied about for illnesses such as cancer, and you may wonder what it actually is and whether it’s worth taking part. The use of human volunteers to collect data is not always for everyone. It is wrapped in the enigma of experimentation and feeling exploited. But what is it all about?

“Fear is a greater barrier than the reality.”

Robert L. Comis, M.D

The National Heart, Lung and Blood Institute, run by the US Health Department, describes a clinical trial as research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies enable medical professionals to follow the best path for certain illnesses or groups of people. The NHLBI say: “Clinical trials produce the best data available for health care decision-making.”

So why are people reluctant to take part?

A survey by Harris Interactive, Inc., showed that of the patients who knew about clinical trials, 71 per cent still chose not to participate.

  • Uncertainty of treatment – Fear of being treated as a guinea pig and getting a placebo is the most common factor that pulls patients away from clinical trials.  In fact, placebos are rarely used in cancer treatment trials, and never in lieu of standard treatment, according to Robert L. Comis, M.D., president of the Coalition of National Cancer Cooperative Groups and chairman of the Eastern Cooperative Oncology Group in Philadelphia. Ninety-seven percent said they were treated with dignity and respect, and received excellent or good quality care.
  • Worry about insurance – For our US friends, one in five participants were concerned that their insurance companies may not pay out. But for those who enrolled in clinical trials, 79 per cent said their insurance company ultimately paid for the care they received.
  • Uncertainty of results/adverse effects – People are afraid whether the new therapy will work to improve their health or worsen their disease. Although researchers cannot guarantee outcomes, patient safety is apparently top priority. Each trial has enforced oversight, and patients also have rights that help protect them. Currently participant’s right are protected by regulatory bodies like the Institutional Review Board (IRB) in the US, and  Medicines and Healthcare products Regulatory Agency (MHRA) in the UK. There will be an equivalent to your native country, usually through the government.
  • Inconveniences. Some people can’t commit to the time required to participate in a clinical trial. Others may find the available hours incompatible with their schedule. Travel is an issue for some, whether they’re unable to transport themselves or find a geographic location close enough. Other social and economic disadvantages contribute to some populations being underrepresented. Some trials even pay the participants for enrolling in a trial. However, FDA suggests people must learn thoroughly about the risks involved in a study before enrolling, and not get lured by the free treatment or money being offered.
  • Missed opportunities – Low enrolment is attributed to many factors and varies on a per study basis, but if more people knew about clinical trials there would certainly be more participation. One study found that only one in three US adults knew about clinical trials, of the 1,000 surveyed.

The NHLBI state: “The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.”

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But does that ease our fears?

To be fair, it’s unusual for clinical trials to try something completely experimental. They usually go through a lot of scientific research before getting to this stage. That being said it is important to check the credentials if you do wish to take part.

It is one of the final stages of a long and careful research process. The process often begins in a laboratory, where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Hence, research in humans is needed. It may start off with only a few patients, in order to ensure safety, while in later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

Why do they need volunteers?

Volunteers can play an important role at this stage of development, which is crucial for new treatments to reach pharmacy shelves. Without sufficient numbers of trial participants, the drug development process stalls and a trial must be repeated, scaled back or, even worse, the potential new therapy is abandoned. This lengthens the time it takes for new treatments to come to market. No amount of funding or other resources can compensate for the lack of clinical research volunteers.

According to the Foundation of Peripheral Neuropathy, across all diseases, 85 per cent across of clinical trials finish late due to difficulties enrolling participants and nearly one-third of trials fail to recruit a single subject and cannot ever begin.

Phases of the trial

Clinical trials are conducted in phases designed to answer a separate research question.

  • Phase 1 Safety testing of a small batch of healthy volunteers – recruiting only a few patients, usually less than 100.  The first few patients to take part (called a cohort or group) are given a very small dose of the drug. If all goes well, the next group have a slightly higher dose. The dose is gradually increased with each group. The researchers monitor the effect of the drug until they find the best dose to give. Doctors/researchers look at how the drug affects the volunteer: How is it absorbed? How is it metabolised and eliminated from the body? Does it cause side effects?
  • Phase 2 Testing effectiveness and safety on small batch of patients – doctors evaluate the candidate drug’s effectiveness in a larger group of patient volunteers. In this case, researchers compare the efficacy of the drug on the patient compared to a different treatment. Patients are either given a placebo or a drug that is already used for treatment. Some phase 2 trials are randomised. This means the researchers put the people taking part into treatment groups at random. Doctors/ also analyse optimal dose strength and possible side effects.
  • Phase 3 Testing effectiveness and safety on a much larger group of patient volunteers – Phase 3 trials usually involve many more patients than phase 1 or 2. This is because differences in success rates may be small. So, the trial needs many patients to be able to show the difference. This phase of research is essential in determining whether the drug is safe and effective. Patient volunteers are divided into three groups: the group that gets the standard treatment; the group that gets the new treatment being tested; and if doctors do not know if the new treatment is better than the standard treatment, but they believe it is as good and may be better.
  • Phase 4 Researching long-term side effects – Phase 4 trials are usually done after a drug has been shown to work and has been granted a licence. The goal of this phase is to continue studying side effects of a new treatment.

If you take part in a clinical trial, you may be one of the first people to benefit from a new treatment.

However, there is also a chance that the new treatment turns out to be no better, or worse, than the standard treatment. It’s a chance / risk, and ultimately it’s your choice if it really is for you.

Where to find clinical trials:

HNPP · Medication · Physical Health

Patient-doctor relations and HNPP

Doctor Patient HNPP hereditary neuropathy

One of the most important parts of your journey with any kind of peripheral neuropathy is to establish good relations with your doctor. Having recently had a bad experience with a locum GP, only reiterates the need for clear communication and real understanding, especially with a condition that seems to relatively unknown.

A strong emotional fit between how a patient ideally seeks to feel and their doctor makes it more likely that the patient follows the doctor’s health advice, according to a study by Stanford psychology Associate Professor Jeanne Tsai and Tamara Sims.

Sims said that by learning how patients want to feel and tailoring treatments accordingly, physicians can enhance their patients’ trust in them. Finding out what matters to a patient in terms of goals and values is important, she noted.

“This may open the lines of communication so that not only do patients listen more, but they open up and disclose more information to their provider,” she said in an interview.

Finding a specialist:

Finding a doctor who has the clinical training to diagnose and treat neuropathy is not an easy task, however. As Russell L. Chin, M.D. Associate Professor of Clinical Neurology at Weill Medical College of Cornell University states, “there is insufficient training even in medical school in the clinical aspects of neuropathy”.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research.

Then there is the fact that there is no one test to diagnose neuropathy and 99 per cent of what the doctor must use is subjective and you have a cocktail for a major patient-doctor problem. So what can you do?

Dr Norman Latov, who specialises in neurology at Weill Cornell Medicine in New York, and author of Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, states early diagnosis and if possible treatment is critical to preventing severe disability. So where to begin?

  • First understand that peripheral neuropathy is a neuromuscular disease.  You need to find a Board Certified Neuromuscular Neurologist as this increases the odds of finding one who is able to diagnose and treat neuropathy. In this case, I found the name of a hospital and doctor through a similar hereditary neuropathy based organisation (CMT UK) and they were able to give more details.
  • For those in the US, you may want to visit a neuropathy centre and the NSN website has a list of doctors and centres. It is worth reading  LtCol Eugene B Richardson’s experience on finding a doctor, in which he had to try out several before settling on someone more suitable.
  • Ask a nurse at the local hospital or doctor’s office. Ask a support group leader or even ask another patient in a support group. Everyone has different pieces of the jigsaw in regards to information, so it’s worth searching around for it.
  • Avoid centres and doctors who claim to cure all neuropathies and offer over-stated claims. This again is mostly for US-based sufferers, as there are more private consultants that offer this kind of treatment.

Once you have found someone suitable, it is important to establish a rapport and relationship in moving forward. According to John A. Senneff  in Numb Toes And Other Woes, you need to be as specific as possible in describing your symptoms and health concerns, including when the symptoms started, what they feel like, and lifestyle changes you made when they started, anything in particular that triggers them or anything that relieves your symptoms. [1]

What should you do once you have found a doctor?

In terms of working with your doctor, following are some of the suggestions given:

  • Educate yourself – Your doctor should not be your only source of information. For example, pharmacists and patient support groups can provide useful information.
  • Ask questions – If you have not call from a newspaper or magazine you would like to discuss with your doctor, don’t be reluctant to take the material with you to your appointment. If you disagree with what your doctor is prescribing do it in a way not to put him or her on the defensive. You may need to be tactful when asking.
  • Disclose symptoms and medication – For your initial session remember to mention all of your medications including prescription as well as over the counter. Also be prepared to discuss your symptoms in detail.
  • Discuss your medical history in depth – Don’t be afraid to divulge information that might be relevant. Your doctor will be much more effective in dealing with your problem if he or she knows as much about the surrounding circumstances as you do.
  • Be honest – even if it’s uncomfortable with meeting to unhealthy behaviour. It is necessary to tell your doctor the truth.
  • Take notes – if the explanation is complex have your doctor write it down for you.
  • Get a second opinion – if your doctor advises an invasive test or therapy that carries risk.[2]

Room for improvement definitely exists in the patient-doctor relationship. As Tsai and Sims note, physicians should recognise that their patients have “effective ideals” that might influence how they respond to physicians. In looking at how doctors can improve, the authors add:

  • Physicians could evaluate their patients’ ideal affect in light of whether there are more effective health care providers or treatments consistent with those ideals.
  • If none exist, physicians might discuss with patients how their ideal affect might help or hinder specific health care recommendations and treatments.
  • More effective interventions aimed at educating clinicians about the importance of ideal affect in health care should be developed.

No matter how difficult it may seem sometimes, there are physicians out there who understands the value of the doctor patient-partnership for patients with hereditary neuropathy.

  • 1. Page 237-238, “Numb Toes And Other Woes”, Senneff, John A., 2001.
  • 2. Page 236, “Numb Toes And Other Woes”, Senneff, John A., 2001.
HNPP · Mental Health · Physical Health

The financial stress of HNPP

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Some days, subjects just fall into my lap. Today is one of those days. We all know that money can cause a boatload of stress, especially during hard times, but how much damage can financial anxiety cause for people with neuropathy?

It is a vicious cycle, you can’t work with chronic pain, but apparently financial insecurity can cause actual physical pain. Basically, we now perceive economic threats in the same way that we used to view predators, and our bodies react accordingly. These processes are also generally controlled by the same mechanisms that regulate pain tolerance, which would explain the link.

This is according to research carried out by Eileen Chou, Bidhan Parmar and Adam Galinsky for the Association of Psychological Science, in which they found that in five studies, economic insecurity produced physical pain and reduced pain tolerance. The researchers surmised that feelings of economic insecurity would lead people to feel a lack of control in their lives, which would, in turn, activate psychological processes associated with anxiety, fear, and stress.

These psychological processes have been shown to share similar neural mechanisms to those underlying pain.

Student participants who were prompted to think about an uncertain job market showed a decrease in pain tolerance, measured by how long they could comfortably keep their hand in a bucket of ice water; students who were prompted to think about entering a stable job market showed no change in pain tolerance.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research.

Chou and her fellow researchers argue: “By showing that physical pain has roots in economic insecurity and feelings of lack of control, the current findings offer hope for short-circuiting the downward spiral initiated by economic insecurity and producing a new, positive cycle of well-being and pain-free experience.”

How does this link to HNPP?

Peripheral neuropathy involves the nerves transporting information from the periphery to the central nervous system (spinal cord and brain), in both ways. For better understanding, peripheral nerves tell the brain about the sensation of heat or cold in their zone (each nerve has a corresponding zone) and the brain responds.

While general anxiety and stress have been thrown around as possible issues that lead to neuropathy, peripheral neuropathy is about nerve damage, not nerve symptoms, and since anxiety is unlikely to cause nerve damage, it can’t technically be peripheral neuropathy.

But anxiety can cause symptoms that resemble this type of disorder. Anxiety actually very commonly causes tingling, numbness, burning, or movement issues in various areas of the body, and when it does it can be very scary. Those that self-diagnose often come up with health reasons that cause these symptoms, but they may be caused by anxiety.

There is some evidence that anxiety causes the nerves to fire more, which can also lead to this feeling as though your nerves are always activated and cause “nerve damage-like symptoms” that can be hard to deal with. Anxiety can also cause cramps and other issues that are related to nerves.

The cost of disability

Disability can be a minefield without any extra financial implications, but the truth is people with HNPP often have extra costs to contend with, such as specialist equipment or higher transport costs. The nature of the extra costs of disability vary enormously across different conditions and from individual to individual.

  • Lost work time
  • Medications
  • Equipment
  • Cost of personal care
  • Therapy

So how do you deal with the emotional side of the burden?

David Richards, professor of mental health services research at the University of Exeter, shares some of his top tips for coping with money worries:

  • Stay active – keep seeing your friends, keep moving to the best of your ability
  • Face your fears – for example, if it looks like you’re going into debt, get advice on how to prioritise your debts. When people feel anxious, they sometimes avoid talking to others.
  • Don’t lose your daily routine – get up at your normal time and stick to your routine. If you lose your routine, it can also affect your eating. You may stop cooking, eat snacks instead of having proper meals, or miss breakfast because you’re still in bed.
  • Consider finding an occupational therapist – OTs can create reports on future care costs, as well as provide direct treatment to manage finances more effectively
  • Explore charity and organisational helplines – these are usually free and they can give good financial advice on where to go and who to see. The earlier they know the situation, the better it will be for you in the long run. 

At the end of the day, policymakers should recognise that there may be a link between these two issues: Economic insecurity can drive a downward spiral, both individually and collectively, in which physical pain both arises from and perpetuates weak economic circumstances. Let’s hope they listen.

HNPP · Medication · Physical Health

Can medical marijuana help pain from HNPP?

cannabis marijuana hnpp hereditary neuropathy

This is a super controversial subject, especially since it’s part of a wider global debate on whether to legalise marijuana for those with chronic illnesses. I say this as some medical professionals I’ve spoken to have recommended it to ease nerve pain from HNPP. It isn’t for everyone for a variety of personal reasons and it is obviously still illegal in most countries.

With marijuana, or cannabis, the advantages include the fact that there has been a long history of use and some evidence of benefits – many patients swear by the herb to relieve their pain, and physicians see it helping those who have few other options. To others, medical marijuana – which lacks both standardised formulations and rigorous clinical testing – represents a challenging deviation from the ideal of evidence-based medicine.

The issue is that one can generalise that medical cannabis has a higher level of testing standards required to meeting the medical standards for dispensing in areas where it has been legalised. These standards do not always apply to recreational use. But this may differ from country to country, from state to state.

This is more of a hypothetical situation for many.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please check with your doctor or practitioner before taking new medicines, and do not break your country’s laws. 

So is it helpful?

According to Medical Marijuna Inc, a pro-marijuana think-tank, two major cannabinoids found in cannabis, tetrahydrocannabinol (THC) and cannabidiol (CBD), activate the two main cannabinoid receptors (CB1 and CB2) of the endocannabinoid system within the body.

These receptors regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels.

Mark Ware, a pain clinician at McGill University, Montreal, Canada, explained that the CBDs act as modulators, “circuit breakers,” on numerous nervous pathways. Within these pathways, CB receptors are located at many key sensory intersections.

neuropathy

Once the nerve is stimulated by an action potential (normal nerve conduction) endocannabinoids such as anandamide flow retrograde up to the presynaptic terminal to dampen the forward flow of nervous information. This leads to less pain impulses being generated and perceived. This decrease is interpreted as pain relief.

Dr Rosemary Mazanet has done some extensive research on the use of medical marijuana on neuropathic pain. Writing for the Foundation for Peripheral Neuropathy, she said: “Although CBD and THC act differently in the body, they seem to have many of the same medical benefits.  Unfortunately, most of this evidence comes from animals, since very few studies on cannabis have been carried out in human patients.”

She adds: “Patients should treat marijuana for medical use like they would any prescription and avoid operating a motor vehicle or heavy machinery, performing child or elder care, and making important decisions while under treatment.”

Unlike opioids, marijuana cannot cause someone to stop breathing, no matter how much they ingest.

What are the side effects?

  • Increased heart rate
  • Dry mouth
  • Reddening of the eyes
  • Muscle relaxation
  • Sensation of cold or hot
  • Anxiety and paranoia are the most commonly reported side effect of smoking marijuana with a high THC content
  • Alteration of conscious perception
  • Feelings of well-being, relaxation or stress reduction, increased sensuality, increased awareness of sensation, increased libido, and creativity
  • With very high doses, THC can induce auditory and visual hallucinations. THC should be used only under the care of a physician by anyone with a mental health history.

Effects of cannabis

Peak levels of cannabis-associated intoxication occur approximately 30 minutes after smoking.  The total short-term duration of cannabis effects when smoked is based on the potency, method of smoking (vape) and how much is smoked.  Any acute effects that accompany cannabis use usually abate after 6 hours.

When taken orally (in the form of capsules, food or drink), the effects take longer to manifest initially, and generally last longer, typically for 4–10 hours after consumption.  Taking marijuana in the form of edibles can have unpredictable effects, since they are delayed and thus harder to predict.

Where is it legal for medicinal use?

Smoking weed is legal to some extent in 30 states in the USA, though the majority only allow consumption for medicinal purposes. So where has medicinal marijuana been legalised?

Countries where medicinal use is legal  Information on how it is used
Argentina Decriminalised for personal use. Medical cannabis is legal in Chubut since September 2016, and in Santa Fe since November 2016.
Australia Legal for medicinal and scientific purposes. Decriminalised for personal use in the Northern Territory, South Australia and the Australian Capital Territory.
Bosnia & Herzogovina In 2016 it was announced that the Ministry of Civil Affairs had formed a task force to explore the legalising of cannabis and cannabinoids for medical purposes.
Canada Legal with government issued licence for medical or industrial purposes. In April 2016, Health Minister Jane Philpott announced that new legislation would be introduced in spring 2017 to legalise and regulate cannabis in Canada.
Chile Since 2014, Chile allows the cultivation of cannabis for medical purposes with the authorisation of The Chilean Agriculture Service (SAG). Sale of marijuana-derived medication is allowed on prescription in pharmacies, from December 2015.
Colombia Legal for up to 22 grams for personal use. No limit for medical or scientific purpose, and if licensed by the “National Anti-narcotics Council”
Croatia In 2015, the Ministry of Health officially legalised the use of cannabis-based drugs for medical purposes for patients with illnesses such as cancer, multiple sclerosis, or AIDS.
Czech Republic Medical use of cannabis on prescription has been legal and regulated since 2013
Finland Since 2006, use of medical cannabis has been possible under a special license. In 2014, 223 licenses were issued.
France Legislation permitting the sale of medications containing cannabis derivatives was enacted in June 2013.
Germany On May 4, 2016 the Cabinet of Germany decided to approve the measure for legal cannabis for seriously ill patients who have consulted with a doctor and “have no therapeutic alternative”. German Health Minister, Hermann Gröhe, presented the legal draft on the legalisation of medical cannabis to the cabinet, which took effect in early 2017.
India Legal or tolerated in several states such as West Bengal, Gujarat, Bihar, Odisha and the North East.
Israel Illegal for recreational use, but limited medical uses have been permitted since the 1990s
Italy Licensed cultivation for medical and industrial use is strictly regulated.
Jamaica On 25 February 2015, the Jamaican House of Representatives passed a law decriminalising possession of up to two ounces of cannabis.
Macedonia Medical cannabis legalised in 2016.
Mexico In December 2016, Mexico’s Senate voted to legalise marijuana for medicinal and scientific purposes – this was approved by the Chamber of Deputies in April 2017.
Netherlands Personal possession has been decriminalised since 1976, and cannabis products are only sold openly in certain local “coffeeshops”
Philippines Congress introduced House Bill No. 4477 in 2016, known as the Compassionate Use of Medical Cannabis Act, which would legalise the use of medical marijuana.
Poland Legal for medicinal use only
Portugal In 2001, Portugal became the first country in the world to decriminalise the use of all drugs
Puerto Rico In 2015 the Governor of Puerto Rico signed a executive order to legalise cannabis for medicinal use only
Romania Medical cannabis legalised in 2013.
Slovenia Cannabis-based drugs are legal for medical use, but not cannabis itself.
Turkey The cultivation of marijuana is legal in nineteen provinces in Turkey for medicincal and scientific purposes. However, with permission this can also be conducted in other provinces too.
USA Illegal at the federal level but legal at the state level in Alaska, California, Colorado, Maine, Massachusetts, Nevada, Oregon and Washington, and in Washington, D.C.; decriminalised in eighteen states, medicinal legal in 25 states and Guam. All Indian Reservations are allowed to regulate cannabis laws; laws vary by reservation.
Uruguay José Mujica has fully legalised any use of Cannabis in Uruguay; law does not specify quantity for “personal amount”

According to the study Medicinal Cannabis and Painful Sensory Neuropathy in the American Medical Association Journal of Ethics, Dr Igor Grant said: “Our society should be able to find ways to separate the medical benefits of making a treatment available to improve lives when indicated from broader social policy on recreational use, marijuana legalization, and unsubstantiated fears that medicinal cannabis will lead to widespread cannabis addiction.”

Nothing is 100 per cent safe, but when you weigh the benefits against the risks, and if you suffer from chronic neuropathic pain, you may find a worthwhile benefit from using medical marijuana, as long as you use it responsibly and you do it legally.

HNPP · Physical Health

How to deal with coordination and balance with HNPP

 

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My muscles are twitching continuously as I write this, which is among a long list of symptoms that tend to appear with HNPP such as lack of coordination, weakness and generally falling over for no apparent reason.

Well of course there’s a reason. But for most it can differ quite significantly.

HNPP affects both motor and sensory nerves, which causes weakness in the foot and lower leg muscles. Deformities of the feet are also common, making it difficult to walk and often resulting in falls. In its later stages, HNPP can also affect the muscles in the hands. Sensory nerves carry messages from your senses through your spinal cord to your brain, while motor nerves travel in the opposite direction. They carry messages from the brain to your muscles.

If nerve cells, or neurons, are damaged or destroyed, it distorts the way the neurons communicate with each other and with the brain.

Causes of falls

The physical causes can be many and complex, there are, however, some factors that feature very regularly:

  • A previous fall – Somebody who has fallen in the last year is more likely to fall again. This may be because the same factor that caused the first fall is still present, or it may be that fear of falling has reduced their level of activity, making them weaker and more prone to fall.
  • Medications – Some widely used drugs, including anti-depressants and diuretics, can cause dizziness and loss of balance. Taking a combination of four or more drugs also ramps up the danger of falling.
  • Poor balance and impaired gait – Balance problems are common with HNPP. Inability to walk in a straight line or at a steady speed; requiring support in order to walk; inability to stand on one leg or to sit down in a controlled manner, can all indicate an increased likelihood of falling.
  • Effects of illness – Several acute and chronic conditions increase the likelihood of falling.
  • Poor vision – Not surprisingly, you are more likely to trip if you can’t see obstacles clearly. Bifocal and varifocal glasses can also cause problems by distorting the view, if you look through the wrong part of the lens. With peripheral nerve issues, neuropathy can affect the eyes. According to the website at E Medicine Health, there are two specific types of what is referred to as cranial neuropath and these are optic neuropathy and auditory neuropathy. Optic neuropathy refers to damage or disease of the optic nerve that transmits visual signals from the retina of the eye to the brain according to E Medicine Health.
  • Environmental hazards – Most falls occur in the home. Familiar culprits are trailing flexes, uneven rugs, poor lighting, general household clutter left in passageways. Climbing on chairs or stools to reach items stored in high cupboards. Outside, it is often damaged, uneven paving or unexpectedly high kerbs that cause problems.
  • Numbness – numbness in the feet can make it difficult to maintain balance, especially in the dark.

What can be done?

Dr Scott Berman, who also suffers from neuropathy writes in Coping With Peripheral Neuropathy, that if the nerves that carry position sense are damaged we depend on eyes more. If your feet can’t tell your brain where you are and your eyes can’t see, then you will fall. [1] Here are some of his suggestions:

  • Using nightlights all the time – this makes sure you’re aware of your surroundings
  • Use a cane or canes, arm braces – this sends information about the floor to your arms, and from there to your brain
  • Touching surfaces lightly with hands may improve balance
  • Proofing your environment – using walkers, canes, grab bars in showers, shower seats, bed rails, car door frame handles etc. may help prevents falls. Also securing rugs and carpets around the edges, reduce floor clutter, modify low furniture and much more.
  • Get a Personal Emergency Response System if you live alone – these are buttons on a bracelet or necklace to summon help
  • Get a physical therapist to help plan ways to help avoid falls
  • Get an occupational therapist, if you are still working, to set up your workplace for your safety
  • Buy adaptive equipment – kitchen gadgets and special utensils, reaching instruments to make life easier.
  • Get adequate footwear – Adam Sternbergh, in his article, “You Walk Wrong” says wrong footwear has wrecked our gait. Inserts can often offload pressure points on your feet and will reduce the chance of ulcers. Make sure you have soft slippers for hard floors.
  • Look into getting a stairlift if you have a fair few steps in your home.
  • Think about doing low-impact exercises that improve balance such as Tai Chi and water aerobics.

The last thing you need is an injury on top of the chronic pain and fatigue, so finding methods to prevent falling and gaining good balance is essential to stop future health problems.

  • Page 38, “Coping With Peripheral Neuropathy”, Berman, Scott M.D
HNPP · Physical Health

Can holistic therapies help HNPP sufferers?

holistic alternative acupuncture reflexology treatments hereditary neuropathy hnpp

When you get to that stage where you feel constantly tired and slightly fed up that nothing works with chronic pain, many turn to alternative treatments for answers. The truth is that as most holistic therapies haven’t been scientifically tested and therefore we’re completely reliant on personal testimonies.

That being said, what treatments are out there?

We know that while there isn’t a cure for genetic conditions, there are some benefits from certain non-Western medicines, one being acupuncture. But does it help? According to Dr. Andrew Weill, an American celebrity doctor, it can help relieve the pain of peripheral neuropathy.

Disclaimer: Please ask your GP or medical practitioner before attempting any treatments included on this website.

Acupuncture

Acupuncture uses pressure points throughout the body to realign the body’s energy, called the qi. The age-old art of acupuncture has been used–along with more conventional means to ease the pain felt from peripheral neuropathy, and even hereditary neuropathic conditions such as Charcot Marie-Tooth disorder (CMT).

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While Dr. Weill doesn’t elaborate on how it can help, a 2014 study on the sister condition of HNPP, CMT, found that after several sessions, it had made a difference in the long-term. A 43-year-old woman with complaints of moderate-to-severe neuropathic pain and limited mobility had four sessions of acupuncture, but reported quite a lot of pain during the treatment. A month later, however, she had managed to begin to walk with the help of orthotics and the pain had significantly reduced.

This could be a one off case, as even the British Acupuncture Council are unable to substantiate the treatment for genetic conditions, stating that because HNPP is rather rare, it is difficult to gather enough individuals with the same symptoms for a trial in China. They say, never say ‘never’, though. Experience is equally that an although an ‘imbalance’ may have been handed down from parent to child this does not that it becomes more greatly untreatable.

With peripheral neuropathy, the BAC say while acupuncture treatment may mitigate some of the symptoms which peripheral neuropathy sufferers experience, there is obviously a limit to what a treatment like acupuncture can achieve. But together with other treatments, it may help ease some of the pain aspect of it especially with hard muscles.

Personally, I’ve had a few sessions, but you really need to find a good therapist you can trust for this.

Acupressure, on the other hand, activates the same points as acupuncture but uses finger pressure instead of needles. Practitioners employ massage protocol to improve circulation and acupuncture to relieve pain. It may be another option to consider but there’s even less research out there. And it may be the better choice for those afraid of needles.

Reflexology

This practice is a system of massage used to relieve tension and treat illness, based on the theory that there are reflex points on the feet, hands, and head linked to every part of the body. In similitude to the theory to acupressure, reflexologists believe that applying appropriate pressure to these points stimulates the flow of energy, thus helping to relieve pain or congestions throughout the entire body.

reflexology hereditary neuropathy hnpp

Reflexologists believe that through light to moderate pressure techniques, a stable rhythm of information can be sent and received through the Central Nervous System. But does it help? Dr. Weill seems to think so.

According to reflexology therapist, Nicole Banner,  the treatment that she used as part of a report, was effective in helping to improve the symptoms of peripheral neuropathy (especially the tingling, numbness, and stabbing pains) of a 64-year-old man. She did iterate that it should be seen as a “complementary” therapy, rather than the full shebang.

The test subject, who has peripheral neuropathy, reportedly tried to control his pain with medication (Lyrica). The medication did not work so he tried eight weeks of therapeutic treatment involving nerve block injections and Transcutaneous Electrical Nerve Stimulation (TENS Unit electrical stimulation), where he saw a slight improvement.

After five sessions of reflexology, he noted that his balance “improved significantly, his sleep quality has improved to the point of not needing pain medication at bedtime, and the numbness and tingling sensations are mild”.

Mims Cushing, co-author of You Can Cope With Peripheral Neuropathy, and a sufferer of peripheral neuropathy herself lists several therapies including reflexology. Her advice is: “If you like to try anything once, try reflexology. You may be surprised at how great your feet feel, but you do need to keep coming back for longer lasting results.” [1]

For more successful case studies on reflexology and hereditary neuropathy, read the report from the Reflexology Association of Australia.

Chiropractic Care

After speaking to several people in the HNPP suppport groups, it seems that chiropractic therapy has been beneficial to several members. According to chiropractor Dr. Paul Raveling, who treats peripheral neuropathy patients at his practice, Raveling Chiropractic Center, P.A, while chiropractic care is not a ‘cure’ for peripheral neuropathy, it is an important part of an effective treatment program.

“Chiropractic care is an effective treatment for peripheral neuropathy because it targets the root cause for a patient’s pain symptoms; we do not simply rely on medication to numb this pain,” he says.

Neuropathy of the arms and legs is apparently the second most common ailment treated by chiropractors, according to the National Board of Chiropractic Examiners. When the vertebral joints of the spine begin to degenerate, it can press on the roots of the spinal nerves, causing the classic symptoms of neuropathy. Chiropractors are said to relieve pressure by performing spinal adjustments to bring the vertebrae back into alignment, releasing trapped or compressed nerves.

According to a study published in the British Medical Journal in 2004, chiropractic adjustments, “with or without exercise, improved symptoms more than medical care did after both 3 and 12 months.”

Cushing, who also mentions chiropractic as an alternative treatment, says that as long as you collaborate completely with your physician, it should be find to go ahead.

Unfortunately, the Foundation for Peripheral Neuropathy has also reported certain ponzi schemes attempting to con people out of their money through bogus chiropractors so beware. In some circumstances, they’ve made people worse.

Magnets

Magnetic therapy has begun to be used as an alternative treatment for many conditions including peripheral neurotherapy. It consists of using magnets of varying sizes and strengths that are placed on the body to relieve pain and treat disease. Thin metal magnets are attached to the body alone or in groups. They can be worn as bracelets or necklaces, attached to adhesive patches to hold in place, placed in bands or belts to be wrapped around the wrist, elbow, knee, ankle, foot, waist, or lower back.

Dr. Michael I. Weintraub, a clinical professor of neurology and internal medicine at New York Medical College, who has done extensive studies of magnetic therapy, says that it has had some benefits to those with diabetic peripheral neuropathy.

A study of 375 diabetics who wore a magnetic device for one month (with control subjects who wore a sham device) showed “benefits equal to or better than that from drugs,” he said.

However, there is little research to show the advantages for those with hereditary neuropathy and there are some that say it is a bit of a sham.

If you’ve tried other holistic treatments, please feel free to share!

  1. (Page 78, “You Can Cope With Peripheral Neuropathy: 365 Tips For Living A Full Life”, Cushing, Mims and Latov, Norman)

    UPDATE: I’ve added another treatment since the initial post after several recommendations.

    HNPP · Physical Health

    How to combat fatigue with HNPP

    Between you and me I find fatigue to be one of the most common occurrences during daily activities. Even travelling to and from places can take its toll. So is there something that we can do to help control it?

    Fatigue is unfortunately central to many neuropathies, but the causes can widely vary. It takes far more energy to walk, stand, balance and generally do normal, everyday things. Muscles have to constantly compensate for other areas having to do jobs they were not designed to do. 

    According to Dr. Scott Berman, in his book Coping with Peripheral Neuropathy, a study showed fatigue in autoimmune neuropathy 80 per cent of 113 patients had severe fatigue. And that fatigue was independent of motor or sensory symptoms, being rated as one of the top three most disabling symptoms. Some medications also add to the endless tiring effect which can be unhelpful. 

    DISCLAIMER: I am not an expert, everything written is based on personal and other’s testimonies, available journals and research.

    So how do you manage it?

    CMT UK, an organisation that deals with the sister condition of HNPP, Charcot Marie Tooth disorder, has made a few suggestions in order to counteract some of the lethargy.

    • Eat regular meals and healthy snacks – it is advised to eat every three to four hours instead of eating large meals with longer gaps in between.
    • Regular exercise – this might feel impossible when you’re feeling tired but it is supposed to help in the long run. A single 15-minute walk, (though many will find this difficult) or any other gentle exercise, can give you an energy boost, and the benefits increase with more frequent physical activity. Just start with a small amount and build up your physical activity incrementally over weeks and months until you feel comfortable and it doesn’t cause you any additional discomfort. 
    • Sleeping well – Two thirds of people are said to suffer from sleep issues when they have neuropathy problems. The Royal College of Psychiatrists suggests sticking to a routine of sleep every day, so getting up and going to sleep at same time daily. They also advise avoiding napping and if it helps, taking a hot bath before sleep.
    • Drinking lots of water – this is important for so many reasons. You may be dehydrated, or your medication requires a lot of H2O.
    • Weight management – excess weight can put a strain on your heart which can make you feel exhausted. Eating healthily and balanced meals as well as light exercise can help combat this.
    • Stress relief – relaxing activities can help relieve a bit of the stress which helps improve your energy levels. Even reading a book or listening to music can help take your mind off things.
    • Therapy – counselling or cognitive behavioural therapy (CBT) might help to fight fatigue. Talking about it may be a factor.
    • No caffeine – caffeinated drinks such as coffee and tea as well as fizzy drinks can potentially play havoc on your nerves. The RCP says caffeine hangs around in your body for hours afterwards. The guidance is to stop drinking tea or coffee by mid-afternoon. If you want a hot drink in the evening, try something milky or herbal. I find decaffeinated tea helps as a placebo!
    • Meals before bedtime – don’t eat or drink a lot late at night. Try to have your supper early in the evening rather than late.
    • Reduce alcohol intake – it may help you fall asleep at first but it’s likely to keep you up during the night and if you do sleep it won’t necessarily be deep. It can also make you feel tired in the morning.
    • The problems with sleep medication – there’s a chance it may interact with your current medication. It can also be addictive and eventually you may be required to take a higher dosage.
    • Muscle issues – speak to your doctor about any deficiencies that may make your muscles spasm more during the night.

      Sometimes fatigue can get the best of us. I say this as I head for a lie down. 

      HNPP · Physical Health

      How important is water to those with HNPP?

      sea-water-person-sunlight-wave-lake-107952-pxhere.com

      Water is one of those debatable topics that seems to arise regularly. Can hot water help nerves? Or is it cold water that can help ease some of the pain? The jury is out there on this one.

      HNPP and other hereditary neuropathic conditions can affect sensory and autonomic nerves (sensory neuropathies), or sensory and motor nerves (sensory and motor neuropathies). Sensory nerves carry sensory information – about such things as pain, temperature, and vibration – to the brain.

      When the sensory and autonomic nerves are affected, the ability to feel pain and changes in temperature is impaired more than the ability to sense vibration and position (knowing where the arms and legs are). The hands and feet are affected most. Hence the temperature of water that you may need can depend on how the area affected is currently feeling.

      According to LtCol Eugene B Richardson, who authors the Neuropathy Journal site, some patients have found that putting the affected area in cool tap water, not freezing, for 15 minutes before bed may calm the damaged nerves. Other patients  have found that warm water, NOT hot, helps rather than the cold water. These suggestions featured in Peripheral Neuropathy in the American Academy of Neurology but Dr. Norman Latov and in You Can Cope With Neuropathy by Mims Cushing.

      The bottomline is that it really depends on the individual. And the main thing is that it has to work for you. However, neurotherapists suggest you should always spend more time soaking in warm water than cool water.

      But why is water important for HNPP’ers?

      For people suffering from neuropathy, performing exercises is just not possible due to the severe nerve pain. Few low impact exercises can help control or reduce the symptoms of neuropathy. Though not all exercises will work for everyone, but there are some water exercises that can be of great benefit to people suffering from neuropathy.

      Disclaimer: Please ask your GP or medical practitioner before attempting any exercise included on this website.

      Julie O’Connor, Aquatic Specialist, who deals with neuropathic patients, told a 2016 conference for Neuropathy Alliance of Texas, that you get 17 times the resistance of being in the water than on land.

      Why choose water exercise?

      • Improve muscle strength
      • Increased circulation and oxygen around the body through the blood – it is said that nerves regenerate better if there is more oxygen in the blood
      • Improve coordination
      • Improve range of motion
      • Decrease pain
      • Decrease weight bearing on joints
      • Improving balance prevents falls
      • Social interaction
      • Combat depression

      Neuropathy and exercise

      • Safety first – safety on the deck of the pool is important, as tiles can be slippery, and you may have to consider how to get in and out of the pool. Aqua pool shoes can help for those with neuropathy in the feet. Keep a bottle of water, you’re still sweating!
      • Do what you enjoy – when you stop moving, your body starts rebelling. When you move, you bring oxygen to the tissue, staving off the initial neuropathy
      • Listen to your body – if it hurts, don’t do it, however, generally water doesn’t have a massive impact on your body.
      • Two hour rule – for any exercise that you’re doing, if you’re sore in your joints, or you’re feeling worsening fatigue in your nerves then you’ve done too much. Make sure you’re doing the exercises properly.
      • Move it or lose it – you’re likely to gain more issues if you don’t move at all.

      Types of aquatic exercise

      • Shallow end – Using different equipment or even just doing poses with correct posture.
      • Deep (non-weight bearing)
      • Training for specific goals such as rehabilitation, weight loss, balance, cardiovascular and muscular endurance, pain management
      • Swimming – sometimes one-on-one can help at the beginning for those not ready for a group class. You may even not even need to swim but do easy positions instead.
      • Ai chi – Tai Chi in water
      • Water strolling –  In water that is about abdomen high, stroll over the pool swinging your arms as you do when strolling ashore. Abstain from strolling on your tiptoes, and hold your back straight. Fix your abs to abstain from inclining too far forward or to the side.
      • Hydrotherapy – Alternating between hot and cold water helps expand and constrict the blood vessels – forcing the blood to move through the vessels to other areas in the body. In addition to improving circulation – the warm water releases pain-relieving endorphins that help block pain.  The warm water also helps the body to relax, thereby reducing the stress and anxiety that can aggravate your symptoms.

      It may or may not work for everyone, but personally, it’s great just being able to move without cramps for a change, and it’s important to be out and about to avoid isolation.

      Will you take the plunge?

      HNPP · Physical Health

      HNPP and Sleep Positions

      Sleeping positions HNPP

      How many times have you woken up in the morning with a numb hand or just in general agony from sleeping in an odd angle? Well, this seems to be a regular occurrence for me and was featured as a recent topic on one of the HNPP forums. Correct positions during sleeping is absolutely vital to stop further neuropathic pain, nerve damage, and that ever-irritating pins and needles sensation.

      The compounding effects of neuropathic symptoms and sleep disturbances can leave you in a vicious cycle, so you definitely need to address it head on.

      The question asked during the discussion was should you abstain from sleeping in the below position? And the answer seems to be YES.

      schlafende-frau-bett-gr-1

      Why shouldn’t you sleep on top of your hands or with the arms near your head?

      You are likely to experience a tingling arm or hand (more likely even worse) if you sleep on it for a long period. Your body weight will exert pressure on your nerves and disrupt the circulation of blood to your arm. Sleeping on your arm may compress the arteries and restrict the flow of blood with nutrients to your arm tissue. Consequently, your arm will not send signals to your brain or understand signals from your brain.

      Extended pressure on the ulnar nerve in your arm interferes with the function of the nerve and makes the hand numb. Sleeping with a bent elbow compresses the ulnar nerve. You will wake up with tingling arms or hands.

      And if you have carpal tunnel syndrome, it will definitely make it worse.

      Pressure on the median nerve compresses the nerve. Any numbness, tingling, impingement, or pinching in the median nerve will lead to pain in the fingers, hand, and forearm. The first symptom is fingers falling asleep or becoming numb at night. The numbness and pain may extend to the forearm and sometimes to the shoulder.

      What should you do about your hands?

      Wear a brace. One of the easiest things you can do to make sleeping easier is to wear a wrist brace to bed. This will prevent you from bending and flexing your wrist while you sleep.

      Wrist_brace

      And stating the obvious, avoid sleeping on your side. Sleeping on your side may be associated with a higher risk of developing numbness, weakness or further pain.

      Support your arms while you sleep. It’s important to think about where you normally place your arms while you sleep and whether or not this may be worsening your symptoms. Try to avoid sleeping with either arm underneath you or your pillow, as this may worsen the pain.

      sleeping

      Propping your arms up on pillows while you sleep may help relieve tension and reduce pain. If you are sleeping on your side, make sure the side which may be worse is on top. Place a pillow in front of you and place the affected hand on the pillow. You may need to experiment with the height of the pillow to find the most comfortable position for you.

      Keep your arm straight. Bending your elbow may increase the compression on your nerve, which can make your symptoms worse. As much as possible, try to keep your elbow straight throughout the night.

      So what is the best way of sleeping?

      Speaking to several other HNPP’ers, it seems the consensus is to sleep on the back. While some say sleeping on the front is also comfortable, it can also cause undue pressure on your back and spine. This is because most of your weight is in the middle of your body, which makes it difficult to maintain a neutral spine position when you’re sleeping.

      You’ll also need to turn your head to the side when you sleep on your stomach. That puts your head and spine out of alignment, twisting your neck, potentially causing long-term neck pain.

      If you’ve always slept on your stomach, then it might be difficult to change a lifetime habit. If that’s the case, use a thin pillow or no pillow at all. The flatter the pillow, the less angled your head and neck will be. Also put a pillow under your pelvis. This will help keep your back in a more neutral position and take pressure off your spine. In the morning, you will need a good stretch!

      With back pain, place a pillow under your knees to help maintain the normal curve of your lower back. You might try a small, rolled towel under the small of your back for additional support. Support your neck with a pillow.

      Sleeping_Positions_for_Back_Pain

      If you sleep on your side, draw your legs up slightly toward your chest and put a pillow between your legs. Use a full-length body pillow if you prefer.

      Whatever your position, due to injuries or preference, the main thing is PADDING and lots of it. Most of this will come in the form of pillows, but spending a little bit of money to buy a memory foam mattress will do you a world of good.

      Happy slumbers!

      HNPP · Medication · Physical Health

      HNPP and Alternative Supplements

      Fruits

      It sounds like there are a lot of good tidbits of information as well as conflicting messages in terms of taking supplements, and other foodstuffs that are said to have wonderful healing properties.

      From supporting nerve regrowth to reducing inflammation, there is a whole host of additional organic as well as synthetic tablets and herbs that can be taken with regular medication.

      I personally take a selection of Vitamin B tablets and Folic Acid, which was recommended to me by a neurologist, but everyone’s body is different and reacts in different ways.

      So is it necessary to take supplements? 

      Regardless of the cause of your peripheral neuropathy, boosting the health of your nerves through proper diet and supplementation can help slow the spread of your symptoms. However, the sooner you and your doctor can pinpoint a cause, the quicker you can identify and begin the most effective treatment for your symptoms.

      While this is by no means a comprehensive list, these medicinal and herbal suggestions have definitely gotten a lot of praise.

      Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic.

      Magnesium 

      Spinach magnesium intake for HNPP hereditary neuropathy

      Magnesium is said to help maintain nerve function, mostly by reducing pain, calming overactive nerves and relaxing your muscles. This calming effect on nerves and muscles helps reduce pain and improve mobility. According to a 2010 study, a major mechanism of pain is the excessive stimulation of a brain chemical called “NMDA.” Magnesium seems to settle down this pain-carrying neurotransmitter without the toxins of other medications.

      Low levels magnesium may result in fatigue, cramping and weakness – among other symptoms.

      Alternatives to supplements: 

      So from where else can you get your magnesium intake?

      • Spinach
      • Pumpkin seeds
      • Beans and peas
      • Fresh fruits
      • Quinoa

      Vitamin B

      Salmon for Vitamin B12 intake HNPP neuropathy

      One common cause of peripheral neuropathy is a deficiency of B vitamins, particularly B12. If a B12 deficiency isn’t treated in a timely fashion, the nerve damage can become permanent. It is the most important link in the chain of the various B vitamins.

      However, without vitamin B2 and B6, your body’s ability to properly absorb and make use of these vitamins for the benefit of your nerves becomes significantly handicapped.

      Alternatives to supplements:

      The NHS website has laid out some of the foods that are high in B12:

      • Meat
      • Salmon
      • Cod
      • Milk
      • Cheese
      • Eggs
      • Some fortified breakfast cereals

      Folic Acid

      Folic acid, known as folate in its natural form, helps the body form healthy red blood cells and reduce the risk of central neural tube defects. Folic acid is needed to activate the B12. B6, B9 (folic acid) and B2 are needed for B1 to be absorbed.

      If you’re taking folic acid supplements, it’s important not to take too much, as this could be harmful.  Folic acid can actually be absorbed by having a healthy diet. Adults need 200mcg of folic acid a day. It can’t be stored in the body, so you need it in your diet every day.

      Alternative for supplements:

      Folate is found in small amounts in many foods:

      • Broccoli
      • Brussel sprouts
      • Liver (but avoid this during pregnancy)
      • Spinach
      • Asparagus
      • Peas
      • Chickpeas
      • Fortified breakfast cereals

      Potassium

      Banana potassium hereditary neuropathy HNPP

      Potassium helps generate energy so that the nerves can transmit messages. The way it does this is called the sodium-potassium pump. Essentially, there is more potassium inside your cells and more sodium outside. When the gate that allows one or the other to leave or enter the cell opens, potassium leaves and sodium enters. This “pump” generates the energy for your nerves to transmit messages.

      Alternatives to supplements:

      • Sweet potato
      • White and kidney beans
      • Dark leafy greens such as spinach
      • Avocado
      • Bananas
      • Certain fish – Wild salmon, tuna, halibut, flounder, and Pacific cod
      • Milk
      • Tomato sauces
      • Dried fruits -Apricots, peaches and figs

      Acetyl-L-Carnitine

      Acetyl-L-carnitine (ALC) is a naturally occurring amino acid and is potentially effective at preventing peripheral neuropathy as well as lessening neuropathic symptoms once they have developed. ALC has been shown to influence neurotransmitters (NTs), including acetylcholine (organic chemical that works as a neurotransmitter) and dopamine.

      Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic and it doesn’t interact with other medications.

      Turmeric

      Turmeric for hereditary neuropathy HNPP

      Turmeric is an ancient spice commonly used in Ayurvedic and Chinese medicines to treat digestive issues, inflammation, skin conditions, and wounds. Turmeric is also known as an anti-ischemic agent, which helps in regulating blood supply to peripheral nerves. Lack of blood supply to nerves is of the key reason for these nerves not working properly.

      Although there is not currently much research to support its standing as an effective anti-inflammatory or that it can benefit nerve issues, there is much anecdotal evidence that it has its advantages.

      For more information on how to consume it, visit TheKitchn.com.

      Hemp Oil

      A slightly more controversial product is Hemp Oil or Cannabidiol (CBD). For many HNPP sufferers, this is harder to come by depending on the laws of your country. However, it is said to benefit users. Two major cannabinoids found in cannabis, activate the two main cannabinoid receptors, which is said to regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels. There are foods and liquids containing hemp that can also be consumed.

      Some of the most popular forms of hemp foods include:
      • Whole hemp seeds
      • Shelled hemp seed (hemp hearts)
      • Hemp oil
      • Hemp protein
      • Hemp milk

      Omega 3 Oils

      Walnuts omega 3 peripheral neuropathyResearch from Queen Mary, University of London suggests that omega-3 fatty acids, which are found in fish oil, have the potential to protect nerves from injury and help them to regenerate.

      Omega-3 fatty acids are vital for the body’s normal growth and development because the body cannot manufacture omega-3 fatty acids. Therefore it has to be consumed in foods such as oily fish.

      Foods that include Omega 3 include:

      • Flaxseeds
      • Fatty / oily fish – wild salmon, halibut, mackerel, tuna
      • Walnuts

      Coq 10

      CoQ10 (CoEnzyme Q10) is an antioxidant naturally produced by your body. As it relates to your nerves, CoQ10 plays a role in correction mitochondrial dysfunction, a condition that can lead to a decline in nerve health and cause nerve related problems or pain. Long-term low dose CoQ-10 inhibited neuropathy induced pain, according to a study.

      Coq10 can be found in:

      • Fish- Sardines, Mackerel, salmon, tuna, herring
      • Beef, Lamb, Pork- organs like heart, liver, kidneys
      • Eggs
      • Spinach
      • Broccoli
      • Cauliflower
      • Wheat-germ
      • Peanuts, Pistachio, sesame seeds
      • Soyabean oil, Canola oil

      Zinc

      Dark chocolate for zinc neuropathy HNPP

      Don’t go crazy with zinc supplementation because it can cause a secondary copper metabolic problem, however, there are plenty of foods that are naturally high in zinc.

      Why do you need zinc for peripheral neuropathy? It turns out that zinc plays a part in modulating the brain and body’s response to stress all along the way. The highest amount of zinc in the body is found in our brains, particularly in a part of our brains called the hippocampus, and it is critical to cell signalling. But you don’t need a huge amount to fulfil your daily quota which can be done quite simply.

      Foods that are high in zinc:

      • Oysters
      • Crab and lobster
      • Meat and poultry as well as eggs
      • Legumes – hummus, chickpeas, lentils, edamame, and black beans
      • Vegetables – mushrooms, spinach, broccoli, kale, and garlic
      • Nuts and seeds
      • Whole grains
      • Fortified breakfast cereals
      • Milk and dairy foods
      • Dark chocolate

      If there are any more supplements you would like to add, please feel free to comment below! Do these particular products work for you?

      Dark chocolate as a medical aid makes me very happy indeed.

      UPDATE: Since writing the initial post, a few other supplements including Coq 10 and Omega 3 Oils has been suggested and added above.