HNPP · Medication

Side effects of medication for HNPP

medication HNPP hereditary neuropathy

After discovering that suffering from a fever and chronic fatigue for the past two weeks was down to my medication left me feeling alarmed. So is it a case of the drugs don’t work – they just make you worse?

It is common for people with peripheral neuropathy to experience different degrees of pain. Hence it’s important to identify the type of pain medication that will work best for managing painful peripheral neuropathy symptoms, that also works with your body chemistry, and compliments other treatments.

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

Differences between pain

Acute pain usually comes on suddenly and is caused by something specific. It is sharp in quality. Acute pain usually does not last longer than six months. It goes away when there is no longer an underlying cause for the pain.

Chronic pain is pain that is ongoing and usually lasts longer than six months. This type of pain can continue even after the injury or illness that caused it has healed or gone away. Pain signals remain active in the nervous system for weeks, months, or years. Some people suffer chronic pain even when there is no past injury or apparent body damage.

The following are the main types of medication that HNPP sufferers tend to use.

Amitriptyline

Amitriptyline is used for headaches and depression, as well as neuropathic pain. It reportedly provides pain relief in about 1 in 4 (25%) more people than does a placebo, and about 1 in 4 (25%) more people than placebo report having at least one adverse event, which may be troublesome, but probably not serious. The most common side effects, experienced by 5-15 per cent of people, include dizziness, drowsiness, dry mouth, nausea, sometimes insomnia and constipation. Apparently it is slow-acting so it can take around six to eight weeks to show any effect.

Duloxetine

Otherwise known as Cymbalta, is commonly used to treat bladder problems, depression as well as neuropathic pain. According to a study for the Cochrane Database of Systematic Reviews, most people taking duloxetine  however will have at least one side effect. These are mostly minor and the most common are feeling sick, being too awake or too sleepy, headache, dry mouth, constipation or dizziness. About one in six people stop duloxetine because of side effects. Serious problems caused by duloxetine are very rare though some HNPP sufferers have reported muscle spasms with this medication.

Pregabalin

Branded under the name Lyrica is among the most commonly used to treat peripheral neuropathy and specifically HNPP.  It can be used to treat epilepsy, headaches or anxiety. It is said to slow nerve impulses that may cause seizures and blocks nerve related pain. While most can take it with it no problems, some of the side effects include dizziness, extreme drowsiness, headache, dry mouth, peripheral oedema (accumulation of fluid causing swelling), weight gain, blurred vision, motor in coordination and ataxia (tremor or lack of muscle control) occurring in 1-10 per cent patients at lower doses.

Gabapentin 

Commonly known by its brand name Neurontin, it falls into a class of drugs known as anti-convulsants – or drugs used to treat epileptic seizures as well as relieve nerve pain. Only 14 per cent of patients taking gabapentin for chronic neuropathic pain report meaningful relief, according to another report by the Cochrane Database of Systematic Reviews. In a recent study by an independent organisation looking at the effectiveness of gabapentin and other drugs for treatment of nerve pain, as few as one in ten patients experienced a reduction in pain.

Two of the most common side effects of gabapentin are fatigue and weight gain. Many report excessive sleepiness and difficulty functioning while taking gabapentin. Significant weight gain has also been reported among some taking the drug – although the risk is generally low.

A study by the University of Miami Department of Neurology found that weight gain is more common among high dose users. In their study of 28 patients taking over 3000 mg/day, 10 patients experienced weight gain of 10 per cent of their baseline weight. That being said, some HNPP’ers have found relief from it, so it’s important not to knock anything until you try it.

When dealing with pain, it is worth giving whatever you can a chance and working with your doctor to try different approaches so that you find the particular approach that is right for you, which brings you the benefits of pain relief, allows you to do more, and gives you the quality of life that you want.

HNPP · Mental Health · Physical Health

Relaxation techniques to help HNPP sufferers

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After a night of tossing and turning, I found that my nerves tend to get worse. The problem is that when your nerves become frayed, lack of sleep can leave you in a vicious loop, so learning to relax is essential for daily life.

When looking to treat neuropathy considering treatments that can help a person learn how to relax so that their quality of life can improve not only physically but emotionally and mentally should be an option.

Mind-body approaches provide a variety of benefits, including a greater sense of control, improved coping skills, decreased pain intensity and distress, changes in the way pain is perceived and understood, and increased sense of well-being and relaxation.

This approach focuses on the interactions among the brain, the rest of the body, the mind, and behaviour. The ways in which emotional, mental, social, spiritual, experiential, and behavioural factors can directly affect health.

Can relaxation help?

According to a study in the International Journal of MS Care, 67 per cent of multiple sclerosis (MS) patients and 43 per cent of peripheral neuropathy (PN) patients reporting the use of at least one form of complementary and alternative medicine in 12 months.

The study itself used 40 sufferers of MS and PN, who took part in a meditation challenge for two months. While meditation does not change the underlying disease, “the effectiveness of mind-body therapies may lie in their ability to facilitate stress reduction, relaxation, and improvement of mood”.

What meditation technique was used?

During each session, the patients practised three forms of meditation in a group setting that was divided into three parts, each lasting 30 minutes. The first part of the session consisted of walking meditation, the second part consisted of moving meditation, and the third part consisted of sitting meditation. Details regarding each technique are provided below.

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  • Walking Meditation

    With the six-part walking meditation technique, patients were instructed to focus their attention on each movement of the foot as they took a step forward. They were told to walk for 10 to 20 paces total, then turn around and walk back the same way. This was repeated for the 30-minute duration of the walking session. The six movements of the foot that they were instructed to concentrate on are as follows:

    1. Lift heel
    2. Lift toe
    3. Move forward
    4. Lower the foot
    5. Heel down
    6. Toe down

    Participants were told to think of the movement first, and then concentrate as they physically took each step.

  • Moving Meditation

    Qigong and tai chi are Chinese mind-body exercises that are considered moving meditation techniques in which awareness and concentration are placed on breathing and specific movements of the body. Study participants performed basic tai chi manoeuvres, including neck rolls in which the head was moved slowly from side to side, ankle rolls, shoulder rolls, hip rotations, knee bends, and alternating pulling and pushing movements with the arms. This was followed by more well-known forms such as “cloud hands,” in which they slowly rotated their body from left to right with sweeping motions of the arms in front of them.Qigong is a more physically rigorous form of moving meditation with shortened and very quick but much simpler movements coupled with deep inhalations and forced exhalations. Focus is placed internally with this type of moving meditation. In contrast, the forms in tai chi are more complex and require outward focus.

    Participants unable to completely perform all movements while standing because of fatigue, instability, or weakness were allowed to sit in a chair and practice with their arms.

  • Sitting Meditation

    Study participants performed samatha sitting meditation, a form of Buddhist concentration meditation in which the mind is focused on one point. Patients sat in a chair or on a cushion on the floor and were told to close their eyes and focus their attention solely on their breathing. They were instructed to breathe normally and observe the movements of the abdomen with each inhalation and exhalation.

Doing meditation at home

Meditation is one of the most widely used forms of complementary therapy, particularly as a palliative for chronic illness, but a lot of people are quite reluctant to practise it for either its possible religious and spiritual connotations. However, it is actually just a way of alleviating stress, hence it can be done by anyone.

Available meditation research is generally of low-to-modest quality, but tends to support this intervention for the reduction of stress and pain, and improving quality of life in a variety of medical conditions.

This meditation exercise is an excellent introduction to meditation techniques.

  • Sit or lie comfortably. You may even want to invest in a meditation chair – but really not necessary.
  • Close your eyes.
  • Make no effort to control the breath; simply breathe naturally.
  • Focus your attention on the breath and on how the body moves with each inhalation and exhalation. Notice the movement of your body as you breathe. Observe your chest, shoulders, rib cage, and belly. Simply focus your attention on your breath without controlling its pace or intensity. If your mind wanders, return your focus back to your breath.

Maintain this meditation practice for two to three minutes to start, and then try it for longer periods.

I found this guided meditation particularly therapeutic. Just make sure you don’t have too many distractions, and prepare your environment, such as switching off lights beforehand. It can be done both lying down or in a sitting position – whatever is more comfortable for you.

If you prefer to meditate by yourself with no distractions, there are entire channels on YouTube dedicated to supposed “nerve regeneration”.

Binaural Beats claims to show increased nerve regeneration in the brain. Using some frequency modulators they say they are able to recreate the frequencies that encourage the treatment by allowing the the nerves to begin to regenerate.

This hasn’t been proven but the music is wonderfully relaxing nonetheless. However, just to warn you, many of the videos are over an hour long and if you don’t have an ad blocker, it can be rather alarming when it gets cut off in between.

What other forms of relaxation are there?

Relaxation and biofeedback are directed toward helping persons with chronic pain become aware of their ability to exert some control over physiologic processes of which they are not normally aware.

  • Biofeedback – The stressors of nerve pain can be eased using biofeedback. Biofeedback is a mind and body relaxation technique that helps neuropathy sufferers learn about their body’s natural internal process to control relaxation. Patches, called electrodes, are placed on different parts of your body to measure your heart rate, blood pressure, or other function. A monitor is used to display the results. With help from a biofeedback therapist, they will describe a situation and guide you through relaxation techniques.
    • EMG (Electromyograph) – The most common biofeedback therapy is the EMG. Because the EMG is used to help correct muscle pain and stiffness it can be the most useful for one suffering with stiff muscles as a result of nerve damage and lack of movement. The device that is used is called an electromyograph which is able to measure the electricity given off by the patient’s muscles.
    • PST (Peripheral Skin Temperature) – A less common form of biofeedback is the PST. The PST is able to measure electrical impulses given off by the flow of a patient’s blood. By doing so, it is able to give information about skin temperature.
    • EDR (Elecroderm Response) – An EDR is considered sweating biofeedback. It is able to monitor electricity produced by a patient’s sweating reflexes. This form is usually used to help with anxiety and depression.
    • Electroencephalogram (EEG) – An EEG monitors the activity of brain waves linked to different mental states such as wakefulness, relaxation, calmness, light sleep and deep sleep. This process is also known as neurofeedback.
    • Galvanic skin response training – Sensors measure the activity of a person’s sweat glands and the amount of perspiration on the skin, indicating the presence of anxiety. This information can be useful in treating emotional disorders such as phobias, anxiety and stuttering.
  • Hypnosis – a state of deep relaxation, which involves selective focusing, receptive concentration, and minimal motor functioning. A National Institutes of Health Technology Panel found strong support for the use of hypnosis for the reduction of pain. Individuals can be taught to use hypnosis themselves (self-hypnosis), and the use of self-hypnosis can provide pain relief for up to several hours at a time.
  • Massage Therapy – Massage therapy is looked at as a complementary therapy that when used in combination with other treatments can be beneficial in reducing nerve pain. One complication of neuropathy is the development of still muscles due to poor circulation or from lack of use. Adding weekly massage therapy sessions, one can improve blood circulation as well as help loosen stiffened muscles thus providing relief to the damaged area. It appears as though research has shown through several  studies that massage therapy has a way of calming the stressed nerve endings and relinquishing the pent up stress found in the nerve endings.

While it may not conclusively help to heal our battle scars, it is always wonderful to try and find new ways of relaxing, freeing our day-to-day constant worries whether for chronic pain and illness, or just life in general. Everyone has a different method of relaxing, it’s just important to acknowledge it as part of our daily routine.

HNPP · Mental Health

How HNPP can cause isolation

HNPP hereditary neuropathy isolation

After reading The Lonely City by Olivia Laing, it brought up the question – are some with hereditary neuropathy and HNPP living in isolation? Of course many live by themselves and do not feel lonely, while others with HNPP are managing fine, but chronic and invisible illnesses can become isolating, whether overtly or more insidiously.

“Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective.”

David Biro M.D.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations.  For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life -excuses a plenty.

This isolation turns into loneliness. Guy Winch, a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post: “Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 per cent of adults over the age of 65 will experience loneliness.

“Indeed, the 2010 U.S. Census found that 27 per cent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”

Why do we isolate ourselves?

David Biro MD, author of Listening to Pain: Finding Words, Compassion, and Relief, also suffered from isolation from depression. He said: “Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness. That goes for physical pain as well as psychological pain.”

He adds: “Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”

It’s not the same as dealing with a broken leg, it heals and the person returns to life as usual in most cases. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, a leading authority on grief and loss.

And when you combine a sufferer who sees only their own pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. Hence in order to stop the isolation, you have to break down the wall that stops communication.

Tracy Rydzy, a social worker with chronic pain, said: “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.

So how do you break the barrier?

  • Make the pain communicable – figure out ways to make the pain shareable – through words or pictures or whatever other kinds of language can be summoned for the task.
  • Reconnect with friends and family – being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.
  • Regular connections – use messages, emails, texts to stay in touch every day, whether it is Facebook, WhatsApp, or any other social media.
  • Arrange social activities to fit your needs – invite people to your home, or go somewhere accessible to you. I find when friends come over bringing one dish each can be sociable and helpful at the same time, or watching films with your friends at home. Negotiate your social activities.
  • Ask for help – if you do go out for example to the theatre, ask if they can accommodate you, and you explain your situation. In the past, they have given me seats while waiting outside, or areas to lie down during the interval.
  • Create spaces that fit your needs – making Facebook groups, speaking to others on Twitter, and even create a MeetUp group with similar needs can actually bring new people together. It takes a little productivity and initiative to get out of the funk.
  • Make the most of available aids – in the UK, we’re lucky in terms of certain benefits that can be utilised such as the CEA Card for those who want to take someone to the cinema with them; or a Please Offer Me A Seat badge for those with hidden illnesses on public transport. You can find out more here. It is worth checking what you have available in your own country and states as some provide special Leisure Passes in certain areas.
  • Speak to your medical practitioner – Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health. They may be able to forward you information about groups, and counselling.

At the end of the day, you need to put your physical health first, so don’t feel guilty for taking some time away. But your mental health comes a close second, so put yourself first either way.

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 · Mental Health

Things you shouldn’t say to those with HNPP

HNPP hereditary neuropathy illness what not to say

This was the subject of another article for those with multiple-sclerosis and it seems totally relevant for those with HNPP! It can be rather irritating for those with hereditary neuropathy, which can be an invisible illness for many, to hear people’s responses in a bid to stop the uncomfortable silences. But why do people feel edgy and how can we help stop the unwanted questions and replies.

To be fair, this seems to be the case across the spectrum for those with mental and physical health issues. Scope, Britain’s leading disability charity, conducted a survey into attitudes to disability, and apparently 67 per cent of British people feel so awkward around disabled people they either panic or avoid all contact. So what can dispel the awkwardness?

Disability blogger Goldfish explains that ‘awareness’ is not always something to rush towards. It not only creates the idea that a disabled person should be sharing their medical histories at will but creates a relationship between the disabled and the non-disabled that’s unequal, characterised by a damaging, charitable pity. Every ‘favour’ done for someone with HNPP or any kind of disability can be framed as care and take on a special charitable status instead of general eligibility. And that’s where the myth needs to be undone and it seems even more difficult when it’s not obvious.

Nothing less than a cultural and economic shift to full humanity for disabled people will improve attitudes to disability. But in the meantime here’s what not to say.

So what should people avoid saying?

  • You don’t look sick – This is rather an extreme thing to say obviously but with chronic conditions, those around us only see the incremental changes. As chronic illness patient and advocate at the Invisible Disabilities Association, Sherri Connell, says: “The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp.” This can actually set HNPP sufferers back, because it’s difficult enough to live with pain let alone trying to make sure you look a suitable way for the world to accept you.
  • You will get better – Not necessarily. Making the assumption that there will be improvements, which will only be short term with progressive conditions, only sets to ease the mind of those asking. And when we don’t improve and our symptoms even worsen, it is us who are frequently thought to be exaggerating. And as difficult as this is to admit, this maybe the new normal. 
  • I have that too! – One of my favourites – unless you really do have the condition, it really isn’t the same. In an attempt to relate to you, people may compare themselves to you. It’s normal for people to think they can relate to something they don’t quite imagine how hard it actually is.
  • I have a friend/cousin/aunt who has the same and they’re doing great – ummm no. Everyone has an opinion and everyone knows someone who is friends with someone that has a certain disease–and that might be true. But not everyone is the same, and the exact same health condition can affect different people in very different ways.
  • It could be worse – Well of course it could be, but every health condition is a serious health condition. People tend to tell you that things could be worse, that you could have a more serious disease, but no one knows what you’re going through. Having a chronic illness means that you have to deal with it for the rest of your life. The only time comparisons might be okay is when we compare where we are now in this illness and our treatment to where we were when we first got sick.
  • You’re cancelling again Believe me, this is only a last resort. Human beings are generally social creatures, hence cancelling is only so we don’t hurt ourselves further. And the issue with HNPP is that our symptoms can change hour-to-hour. The bottom line is – don’t stop making plans, it’s a postponement not a cancellation.
  • If you need anything… – this is said with great intentions. And it is a lovely gesture. The problem is that it is too broad-ranging. We mean it 100 per cent when we say it. So maybe be specific i.e. I’m going to (supermarket), do you need anything?
  • I wish I could stay home all the time – if only we were sitting at home running a Fortune 100 company from the comfort of our beds. But we’re not. Instead when we are home, we hate ourselves for our inability to do what once was the simplest most mundane tasks. We worry about being burdensome. We worry that we’re being lazy. And we compare ourselves to what we were – we don’t want to be home all day. We miss our active lifestyle.
  • God never gives us more than we can handle – Thankfully I live in the UK so I get this less. But it has happened. It is a bit of a ludicrous statement to make given that according to the National Center for Health Statistics there are 16,235 deaths from prescription opioids every year in the US. As patients feel alone and hopeless, suicidal thoughts often overwhelm them. They’d do anything to stop the pain. So please refrain from such statements, but instead think about communicating and reaching out to stop sufferers feeling lonely.
  • Everyone gets tired – That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses.
  • You’re just stressed – When we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them.
  • Be positive – It’s great to be positive but it isn’t a cure. Sometimes there’s also a level of denial when you overdo it. Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness.
  • Have you tried / you should stop – Unless you’re a medical professional or have some actual experience and knowledge with the condition, suggestions are unhelpful. Someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.
  • All you need is exercise – Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. Those attempting to exercise usually do it as a form of physical therapy as there are so many limitations, especially when certain exercises can worsen the damage.
  • You need to get out more – While a change of scenery is wonderful, chronic fatigue and pain will stop you. That’s it. It also makes them feel guilty for not being able to do something they already want to and are probably trying to do.

The absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness is “I believe you”.

I’m sure you’ve all heard a lot more. Feel free to add your comments!

Follow here if you want to find out more information about the End The Awkward campaign.

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 · Mental Health

HNPP and the impact of chronic pain on relationships

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There are days where you just want to curl up in a ball and stay away from people, especially when you’re suffering from chronic pain from HNPP. Or generally hate the world for not understanding why you want to be alone or just basically recognised. The impact of one person’s neuropathic and chronic pain can produce a ripple effect on the people around us.

The problem is our connections with others whether they are friends, family, colleagues or acquaintances, make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

The science behind the breakdown

According to a 2008 study by Professor S. Jose Closs based on how neuropathic pain can effect relationships, most research in this field has not differentiated between those who have chronic nociceptive pain (pain caused in response to injury or pathology) and those who suffer from neuropathic pain symptoms due to abnormal nerve function.

Most treatment is pharmacological, and little is known about people’s experiences of symptoms and how they affect daily life despite 8 per cent of 3,000 people in the UK claiming to suffer from it. [1]

The research found that participants said strains were placed on relationships within their families and intimate relationships. They also described difficulties in maintaining, as well as losing connections with friends. Not to mention the frustration in their dealings with uncomprehending healthcare professionals, disability services, benefits agencies and employment services, which was common.

relationships chronic neuropathic pain HNPP hereditary neuropathy

For the male participants, some felt that they were unable to perform traditional male tasks and fulfil their roles as sons, partners and fathers. These included heavier household chores such as gardening, being able to protect their loved ones. While for women, a few described their inability to perform their usual roles and participate in normal family activities. The impact on children was particularly noted. As a result, sufferers behaved aggressively or became quite negative out of frustration. [2]

Some reported not having the emotional energy to deal with other people’s concerns, and expressed how they had become resentful towards others who relied on them. It can be seen in these terms:

  • Loss of family roles
  • Social withdrawal
  • Being believed / understood

The nature of the disability resulting from neuropathic pain is further complicated by the invisibility of pain. And if you’re like me, who tends be rather independent, you fall further into isolation.

What can be done?

Part of pain management involves accepting these changes and using them to form better and closer relationships with the ones you love. By learning to better cope, you will be able to manage pain and keep friends and family close.

  • Find a communication balance – The people in your life need to know how you are feeling. Staying silent will only cause them to feel estranged from you. But try not to overwhelm them by sharing too much. This is where a happy medium needs to be struck.
  • Discuss your sexuality with your spouse – Make plans for encounters that fit into your medication schedule and the ebb and flow of your daily pain.
  • Don’t let chronic pain keep you from interacting with friends – “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author, Toni Bernhard. Bernard says to make an educated guess and hope for the best, but don’t push yourself too much, but at least give enough notice if you do end up cancelling plans. Keep in contact, however, in the best way that you can.
  • Take on manageable household responsibilities – If you find yourself unable to perform certain chores that were once your responsibility, replace them with new tasks that you are able to perform. This will keep you an active and contributing member of your family.
  • Ask for help – Giving your loved ones a chance to help you in some way can make them feel closer to you. Asking for help is never a sign of weakness, instead it allows others who feel helpless to understand how they can assist.
  • Be compassionate to yourself – Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself or a young child, without judgement, without criticism, without drama. As author Jack cornfield said, “If your compassion does not include yourself, it is incomplete.”

For persons with chronic illness and/or disability, everyday relationships and support processes are central to understanding the meaning of illness, but the particularly compelling portions of this story are the commitments and successes in re-negotiating relationships.

As Renee Lyons writes in Personal Relationships, Illness, and Disability: “Illness and disability do not merely comprise a sad person’s story, but an opportunity for intimacy and collaboration in relationships – an opportunity for community in the truest sense.”

  • 1. Page 403, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
  • 2. Page 405, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
  • Recommended reading – Personal Relationships, Illness, and Disability, Renee Lyons