Relaxation techniques to help HNPP sufferers

Jul 19, 2017Jul 20, 2017 suswatibasu3 Comments

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.

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

Things you shouldn’t say to those with HNPP

Jul 16, 2017 suswatibasu3 Comments

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!

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HNPP · Physical Health

How to deal with coordination and balance with HNPP

Jul 11, 2017Aug 14, 2017 suswatibasu1 Comment

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