The effects of HNPP during pregnancy

Aug 20, 2017 Suswati Basu1 Comment

There can be a lot of worry and anxiety that arises during pregnancy, one of which includes what to expect, especially with HNPP. Many can have a more or less seamless experience while others find that their symptoms are exacerbated during this time. So what is the ‘norm’ of HNPP during pregnancy?

“In my 30’s during pregnancy, I had sciatica because I had enormous babies resting on my spine. Bladder too, but peeing my pants when I sneezed or laughed – seemed like something that just happens to pregnant women.”

A mother with HNPP from the blog Chronic Pain Journal

First of all, HNPP does not affect the fetus or the pregnancy itself thankfully. However, during pregnancy, symptoms that manifest due to HNPP such as palsies, sciatica, or pain in the lumbar region, may be heightened as a result of added pressure on the body.

Disclaimer: Please ask your medical practitioner for more information. This article is based on various research, journals and testimonies.

How does HNPP manifest during pregnancy?

According to Dr. Rakesh B Vadhera, an obstetrics anaesthesiology consultant and professor at the University of Texas, alongside Dr. Michelle Simon, a paediatrician and neuropathology expert, peripheral entrapment neuropathies are common during pregnancy and may lead to “severe discomfort”.

Writing in the book Maternal Medicine published in 2015, Dr. Vadhera and Dr. Simon state: “Pregnancy itself may predispose patients to some of these entrapment neuropathies, which are mostly benign in their evolution and prognosis and will resolve spontaneously in the postpartum period.” This appears to be good news for expecting mothers concerned that the symptoms may not disappear after the birth of the child. For all that however, there have been cases of symptoms lingering postpartum.

They add: “Delivery may predispose patients to compression or stretching of some nerves and plexuses that may precipitate symptoms. Prompt clinical evaluation and, when necessary, an electrophysiologic evaluation may aid in the diagnosis and subsequent management.” As briefly mentioned in the article Is surgery worth it with HNPP?, it’s vital to let your medical team know how to make you comfortable during this time as well as through labour, to avoid further nerve-related damage. This is addressed in more detail below.

What symptoms to expect when you’re expecting

In some extreme cases of Charcot Marie-tooth-related disorders, the obstetricians above say pregnancy can affect respiratory muscles and thoracic vertebral anatomy, “impacting patient respiratory function during pregnancy and affecting delivery and anesthetic care”. But this may be evident during the third trimester when there is added strain on the body, and therefore you may have enough warning to consult a health professional beforehand.

Author Dr. Pierre Bouche, based in the Department of Clinical Neurophysiology, Salpêtrière Hospital, Paris, France, says that in some neuromuscular disorders, carpel tunnel syndrome (CTS) could also manifest during pregnancy.

In the edition Peripheral Nerve Disorders as part of the Handbook of Clinical Neurology, Dr. Bouche states: “[Carpal tunnel syndrome] can develop at any time in pregnancy, but it is most frequent during the third trimester and may be due to fluid retention exerting pressure on the median nerve.” However, this can vary from person to person depending on how sensitive the nerves are around the wrist and upper arm.

Other areas that may be affected can also differ. Authors of the medical reference guide Obstetric Anesthesia and Uncommon Disorders, 2008, reiterate that HNPP may exacerbate neuropathies associated with pregnancy and delivery. They say HNPP symptoms such as “lumbosacral plexus, femoral, lateral femoral cutaneous, obturator or peroneal nerve palsies” may be aggravated during this time.

But that’s just some of the ways the symptoms may manifest. There are some mothers featured in the Facebook HNPP groups, who have spoken about pain in the ribs, loss of functionality in the legs, arm and leg aches, and the list goes on. On the other hand, there are others who faced symptoms no worse than pre-pregnancy.

How to prepare for labour and delivery

Similar to the diverse responses on how mothers are affected during pregnancy, the same is apparent with the delivery itself. Some mothers elect to have a natural birth, while others require or request cesareans. Using gas, on the other hand, may pose a risk as it is considered a neurotoxin. There have been reports of “heightened pain” with gas according to some users in the HNPP support networks.

“I was 33 when I had the epidural – which triggered my chronic neuropathic pain. The majority of my pain, travelling along the entire right side of my body. Strongest in all the places I had experienced pain during my life. It was like it was the “Red Button” got pushed and a bomb exploded in my Central Nervous System.”

A mother with HNPP from the blog Chronic Pain Journal

According to Dr. Guy Lepski and Dr. J.D. Alderson of the Department of Anaesthesia, Northern General Hospital, Sheffield, UK, dense local anaesthetic blockade should be avoided as it may mask a compression neuropathy. They recommend the following management principles for doctors in the 2001 study Epidural Analgesia in Labour for a Patient with Hereditary Neuropathy with Liability to Pressure Palsies:

Consult with a neurologist and anaesthesiologist in the antenatal period
Assess neurological status antepartum
Avoid prolonged immobilisation in labour
Avoid instrumental delivery
Avoid dense epidural blockage
Consider operative delivery if a pressure palsy develops during labour
If a cesarean section is selected, HNPP.org gives the following advice to the surgical team:
- Position arms out to sides. An angle of less than a 90 degree angle will help to alleviate stretch on the brachial plexus (shoulder area).
- Move arms (supinate/pronate) every 15 minutes while under general anaesthesia.
- Pad arms and legs/feet in stirrups. As a general rule: pad everything. The need to pad arms and legs is dependent upon the individual patient (frequency and severity of palsies). One inch foam or similar type material is usually sufficient.
- If possible avoid leaning against the patient, especially against the arms and legs.
- Tape endotracheal tube more centrally so that the tube is fully supported by the tape and not at all by the mouth. Tape other tubing in a similar manner as appropriate. Consider positioning while awake.
In order not to mask any developing neuropathy, anything but the mildest block for postoperative pain should be avoided.

Both Dr. Lepski and Dr. Alderson say that the “Labour progressed uneventfully and there were no neurological sequelae following delivery”.

In addition to these suggestions, David H. Chestnut alongside several other authors have written about safeguards to minimise peripheral nerve compression. In Chestnut’s Obstetric Anesthesia: Principles and Practice E-Book, they advise:

Be watchful for patient position that contributes to nerve compression, particularly with neuraxial blockade.
Avoid prolonged use of the lithotomy position; regularly reduce hip flexion and abduction.
Avoid prolonged positioning that may cause compression of the sciatic or peroneal nerve.
Place the hip wedge under the bony pelvis rather than the buttock.
Use low-dose local anaesthetic / opioid combinations during labour to minimise numbness and allow maximum mobility.
Encourage the parturient to change position regularly.
Ensure that those caring for women receiving low-dose local anaesthetic / opioid combinations understand that numbness or weakness may be signs of nerve compression; such symptoms should prompt and immediate change of position.

A report by French researchers S. Berdai and D. Benhamou from the Department of Anaesthesia and Resuscitation, Bicêtre Hospital, Le Kremlin-Bicêtre, suggests that it is possible to have an epidural as well as spinal anaesthesia during labour. In the report Regional Anaesthesia for Labor and Delivery in a Parturient with Neuropathy with Liability to Pressure Palsy, a woman had two cesarean sections, one with an epidural that resulted in no “neurologic complaints in the postpartum periods”.

They say: “For the first delivery, epidural analgesia was performed for labour pain control but a caesarean section was necessary because of failure to progress (0.0625% bupivacaine with 0,2 μg/ml sufentanil for labour then 2% lidocaine with adrenaline for surgery).

“Two years later, the patient was again seen for a preanaesthetic visit because elective Caesarean section was planned. Spinal anaesthesia using hyperbaric bupivacaine and sufentanil was used. Both deliveries were uneventful”. Uneventful being the operative word.

It is essential to get the right advice while pregnant as well as during childbirth itself, and also on how to manage any symptoms that appear postpartum. Creating a birthing plan will therefore be necessary to avoid any extra issues. That being said, symptoms fluctuate from person to person, which means you may be fortunate enough to have hardly any bumps in the road.

Read: What to avoid with HNPP

Is walking good for those with HNPP?

Jul 30, 2017Jul 30, 2017 Suswati Basu4 Comments

From walking 15km a day to walking 15 minutes a day, my walking journey has been chaotic to say the least. But it was another essential question I asked my neurologist. Is it still possible to walk when you’re in pain?

It is shockingly difficult to do for most people living with HNPP, and yet it seems rather depressing to completely forgo what seems to be such a straightforward task. It’s a bit of a vicious cycle as it is difficult to exercise with painful neuropathy and yet it’s very important to stay active.

The major issues that seem to occur with HNPP include:

clumsiness
slight difficulty in walking because of trouble picking up the feet
weak leg muscles
fatigue
foot deformity (very high arched foot/feet)
difficulty lifting foot at the ankle (foot drop)
curled toes (known as hammer toes)
loss of lower leg muscle, which leads to skinny calves
numbness or burning sensation in the feet
“slapping” when walking (feet hit the floor hard when walking)
weakness of the hips, legs, or feet
leg cramps
loss of balance, tripping, and falling

These symptoms obviously cause problems while walking hence it seems next to impossible to even attempt it.

According to Patty Bonsignore, a Nurse Educator at Joslin Diabetes Center in Boston, U.S. dealing with neuropathies, it’s best to do exercises that are non-weight bearing, such as swimming, water aerobics, rowing and chair exercises. However, if walking is the exercise you prefer, and easiest for you, then it is important to make sure your shoes fit correctly, and that you have comfortable, well-padded socks that wick away moisture.

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

Bonsigore suggests seeing a podiatrist or a pedorthist (a professional trained in creating customised footwear) who can help determine whether your shoes are fitting correctly, as correctly fitted shoes are an easy and important way to prevent foot issues.

She adds: “Neuropathy can also affect balance and shift the way you bear weight on your feet. Alterations in weight bearing can put you at greater risk for falls and foot ulcers. If you are having problems with balance, ask for a referral for physical therapy.”

Before you begin to attempt walking

According to CMT UK, a website dedicated to the inherited condition Charcot-Marie tooth disorder, stretching the calf daily is something that everybody with CMT or HNPP should get into the habit of doing to keep the calf muscles lengthened and slow down the development of the deformity.

These stretches are easy to perform and can be incorporated into your daily routine, for example during your morning shower when your muscles are warm and relaxed (just be careful not to slip) or standing up to a work surface while waiting for the kettle to boil.

Before exercising

Before you start to do any exercises, think about the following:

Have you talked to your physiotherapist, family doctor or gym instructor about the right exercises and level for you?

If needed, have you considered orthoses? The right one can make exercising more efficient and enjoyable.

Remember to pace yourself – don’t overdo it. And if you have worked hard one day, think about relaxing the next.

Put together an exercise plan – build up slowly so as not to injure yourself. (The 10% rule is a good one to stick to – aim to increase your exercise levels by no more than 10% to 15% each week.)

Why you wonder? In these types of conditions, the muscles on the shin tend to get weaker first which results in a ‘foot drop’. The stronger calf muscles overpower the weaker shin muscles setting up an imbalance between the two. Because of this the calf muscle will gradually get shorter and stiffer, as will the Achilles tendon, further increasing the foot drop.

Because the ankle needs to be at a right angle for the toes to clear the floor when walking, the result is an increased chance of tripping when walking, increased difficulty getting the heel to the floor and a greater chance of sprained ankles.

Orthoses can play an important role in helping to maintain flexibility, joint range and prevent the muscles tightening and shortening. This can be by means of insoles which may be thicker on the outside of the foot than the inside so the foot is stretched when weight is put on it. Orthoses used through the day can provide a very effective stretch as well as holding the foot in the best position for walking.

Stretching exercises

These exercises are only a general guide. It is strongly recommended that you
consult a physiotherapist to put together an exercise programme tailored to your individual needs.

Disclaimer: If you experience any pain or difficulty doing these exercises, stop immediately and seek advice from your family doctor or physiotherapist.

Calf stretch:
- With finger tips hold onto a wall or work surface.
- Keep your head up and back straight.
- Place one foot forward and one foot back with the back foot and heel fully on the floor. Make sure your toes are pointing forward.
- Let your front knee bend but keep your back knee straight.
- You should feel a stretch in the calf.
- Hold still for 20 to 30 seconds. Repeat three times and then swap legs.

Lower calf stretch:
- Get in the same position as above.
- Step your back leg forward so the toes are in line with the heel of the other foot.
- Letting both knees bend, sink down with your weight on your back leg.
- The stretch will not be as strong as with the previous exercise.
- Hold still for 20 to 30 seconds. Repeat three times and then swap legs.

Upper legs:
- Sit on the edge of your bed or a dining chair.
- Keep feet hip width apart. Keep your arms by your side.
- Stand up fully then slowly sit down.
- Repeat the movement 10 times.

Standing balance:
- Stand near a work surface or wall.
- Stand with your feet together keeping an upright posture.
- Hold for as long as possible using fingertip support on the work surface/wall as required.
- If you are able to, keep this position and turn your head right and left. Repeat the movement 10 times.
- If this is easy, extend your arms and rotate them around to the right and left. Repeat the movement 10 times.
- My physiotherapist recommended doing this while standing on a cushion or foam surface to test the balance a bit more.

This is for stroke recovery patients – however, these balance exercises were recommended to me by my neurophysiotherapist.

That being said, all of these exercises should be done with a touch of caution so please don’t overdo it.

Walking

If you really want to walk here are some tips worth noting:

Use walking aids – if necessary, take along a walking stick or your walker. Researchers in the U.S. showed that the use of a cane reduced the load on the knee by 10 per cent. By reducing knee joint stress, the pain, swelling, and stiffness is less likely to become debilitating. And remember, even expert hikers use trekking sticks.
Padding – make sure you wear all adequate padding such as knee pads, arm pads, splints and general orthotics if necessary.
Stretch before walking – See above for exercises.
Stop as soon as you feel pain – this also includes weakness in the foot.
Rest in between if necessary – it’s not a race, so don’t beat yourself up if you can’t manage.
Know your limits – if you know 10 minutes is enough to make you start feeling pain or fatigue then make sure you walk around the corner and make it back home in time.
Try focusing on your body mechanics – are your knees softly absorbing the impact of each step? Is your pelvis doing a waddling motion back and forth or is your pelvis staying level and steady? Are your shoulders back with your chest out? Each and every part of your body needs to be an active participant in your walk and doing their jobs correctly.
- Head and shoulders: Keep the head up and centered between the shoulders, with eyes focused straight ahead at the horizon. Keep the shoulders relaxed but straight – avoid slouching forward.
- Abdominal muscles: It is important to actively use the abdominal muscles to help support the trunk of the body and the spine. To do this, keep the stomach pulled in slightly and stand fully upright. Avoid leaning forward as you walk.
- Hips: The majority of the forward motion should start with the hips. Each stride should feel natural – not too long or too short. Most people make the mistake of trying to take too long of stride.
- Arms and hands: Arms should stay close to the body, with elbows bent at a 90 degree angle. While walking, the arms should keep in motion, swinging front to back in pace with the stride of the opposite leg. Remember to keep hands relaxed, lightly cupped with the palms inward and thumbs on top. Avoid clenching the hands or making tight fists.
- Feet: With each step, land gently on the heel and midfoot, rolling smoothly to push off with the toes. Be mindful about using the balls of the feet and toes to push forward with each step.
If trouble arises – shorten up your strides and slow down. Walking is a concerted effort that requires you to be mindful. Sometimes you need to relearn how to walk after experiencing a painful injury. That is when a physical therapy tune-up can be so very helpful.
Good walking shoes – your body will appreciate the added cushioning and support. According to peripheral neuropathy sufferer and author, Mims Cushing, Reebok lightweight trainers / gym shoes is a godsend to walkers. Find out more about the best shoes for fragile feet here.
Socks – in the same vein, get appropriate socks. People with neuropathy usually wear non-binding, with extra wide funnel tops. The seams are smooth and the soft, cushiony soles will not irritate your feet. If your feet sweat a lot, consider buying acrylic socks rather than cotton.
Inserts and insoles – inserts can often offload pressure points on your feet and will reduce the chance of ulcers
Avoid uneven terrain – this requires planning your route beforehand, and making sure you do a circular journey so it returns you home rather than walking further and further away. I walk near parks because if needs be I can take off my shoes and stand on the grass.
Plan your route beforehand – as noted above, circular journeys are important so that you make it home in one piece. Apps such as WalkIt and Map My Walk are fantastic for route mapping and journey suggestions.
Water – absolutely essential to keep hydrated throughout.
Snacks – I get exhausted quickly, but quick snacks such as rice cakes, cereal bars or even glucose tablets can keep the fatigue at bay.
Distractions – for those that need it, listening to music, books and podcasts sometimes helps ease the nerves of walking. Focusing on your breathing and posture may make the exercise less frightening.
If it’s all too much – then start on a treadmill, and build up slowly.

Walking is no walk in the park sadly, but it may get a little better each time if you make sure you don’t overdo it, listen to your body, and remember it’s a work in progress.

HNPP · Mental Health · Physical Health

Relaxation techniques to help HNPP sufferers

Jul 19, 2017Jul 20, 2017 Suswati Basu3 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 · Physical Health

The financial stress of HNPP

Jul 14, 2017Jul 14, 2017 Suswati BasuLeave a comment

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?

Jul 13, 2017Mar 6, 2018 Suswati Basu3 Comments

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

Jul 11, 2017Aug 14, 2017 Suswati Basu1 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

HNPP · Physical Health

Can holistic therapies help HNPP sufferers?

Jul 9, 2017Jul 10, 2017 Suswati Basu3 Comments

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).

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.

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!

(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

Jul 8, 2017Jul 12, 2017 Suswati Basu6 Comments

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?

Jul 7, 2017Jul 7, 2017 Suswati Basu4 Comments

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

Jul 6, 2017Jul 10, 2017 Suswati Basu4 Comments

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.

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.

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.

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.

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!