This section of our Web site has to do with tips, ideas, suggestions, ...most anything that
may help someone with PN to improve his or her state of health.
Yvonne: Thank you for sharing the following Sources of information.
Summary of recommendations from speakers at
Peripheral Neuropathy Support Group meetings
of Palm Beach, St. Lucie & Indian River Counties
2001-2003
I strongly urge you to read:
1.John Senneff’s 3 books specifically for those with Peripheral Neuropathy:
Numb Toes and Aching Soles - 1999
Numb Toes and Other Woes – 2001
Nutrients for Neuropathy – 2002
2. Dr. Peter Lehndorff’s book: 60 Second Chronic Pain Relief
Excerpts from the above books (except Senneff’s third which I haven’t read yet)
are being distributed for your reference.
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Overview of Peripheral Neuropathy:
PN is a dysfunction in our nerves. Neuropathic pain is spontaneous, poorly localized and
often spreads to non-injured areas. Little or no stimulus is needed to make a nerve fire
spontaneously.
PN creates a number of unpleasant problems. They may include: numbness, muscle weakness,
movement impairment, loss of balance or position sense, breathing difficulties,
sexual dysfunction.
Neuropathic pain comes in many shapes and sizes. It can be dull,
diffuse and persistent; sharp, stabbing and intermittent; or constantly burning. At
different times it can seem to be a combination of all of these. The pain can become like a
disease itself, wearing the sufferer down as a result of anxiety, depression and loss of sleep.
Most common cause of PN is complication resulting from diabetes. Other medical conditions,
such as: rheumatoid arthritis, cancer and shingles can cause it. In addition, alcohol excess,
exposure to toxins, vitamin deficiencies or excesses, nutritional imbalances or medications
used to treat HIV/AIDS can result in this disorder.
Normal progression of peripheral neuropathy is feet, legs, hands, arms, front of abdomen, center
of scalp - but not everyone presents the same way. Some people are fortunate and the disease
does not spread beyond the feet.
When it comes to dealing with pain, we’re all different. What works for one person may not work
for someone else. Individual experimentation is often necessary to come up with a satisfactory
means of dealing with pain. Most people’s pain is more noticeable at night because you have
fewer distractions.
Generally, neurologists will prescribe medication to help block pain transmission in one direction.
As pain increases, amount of medication is increased. When this approach no longer works,
a second medication is usually added.
Author John Senneff believes the formula to best deal with PN is:
The right exercise
The right medication and
The right nutrient supplementation
Keep Moving:
One of the big fears with chronic pain is the fear of motion. We think it will hurt if we move.
This is only partly true. The truth is that if we don’t move, it will hurt even more.
Exercise:
Is a method of alleviating pain. Feeling a slight ache when you exercise is healthy.
The ache gives feedback to tell you that you have done enough exercise for the moment.
Stop and return to the exercises later, or even the next day. When you begin exercising again,
you should continue until you feel an ache.
If you can walk 10 minutes without too much pain, you should adjust your walking program to that.
You could walk away from your house 5 minutes in one direction, turn around and walk back.
If you do that 6 times a session, that’s a total of one hour walked. That’s just as good
(or perhaps better for you) than if you walked the entire distance in one session.
This strategy works the same way for all exercises such as swimming, aerobics or riding a
bike – stationary or mobile.
Know your limitations:
To set yourself up for success, you must know your limitations. To know them, you have to test
them from time to time.
If you can walk 5 minutes, try 6
If you can swim 1 length of the pool, try 2
If you can sit up and read for 30 minutes, try 35
If you can perform an exercise twice, try to do it 3 times
If you spend 4 hours out of 24 on your feet and you spend 20 lying down, try 5 up and 19 down
The power of our minds to control pain:
We have the most powerful medicine there is inside us. It’s a component of the management of
pain and may allow us to reduce the quantity of medications we take.
There’s a strong behavioral aspect of pain. Each person can be taught to ignore pain. There’s
a difference between pain and suffering. Just as we’ve taught ourselves to ignore pain or other
sensations from wearing earrings, glasses, socks, hearing aids, etc., we can be taught to ignore
pain from peripheral neuropathy.
Most people’s pain is more noticeable at night because you have fewer distractions.
Keep busy/ keep mind occupied
Music is powerful and serious medicine – it helps distract you from your pain
Do something you like and you’ll secrete hormones that ease pain
A pool is the best place for some people
Helpful hints to maintain your balance and avoid falls:
When walking, keep feet wide apart, straddling an imaginary line.
When turning, turn your feet first, then your body. Lift one foot at a time, keeping
your feet always parallel and wide apart.
When sitting down, reach with both hands for the arms of the chair, before you begin to sit.
Lower yourself slowly.
When getting up from a chair, lean your nose over toes and keep your hands on the chair
to help stabilize yourself.
Once standing, get your balance, then begin walking, slowly.
Have small night lights around the house – they can act as targets that you can walk towards to find your way.
Avoid carrying big things in front of you. You can’t see where you’re walking.
Put things you use often at eye and shoulder level.
Recommendations on Foot Care:
Use a mirror on the floor to check bottom of feet for redness, cuts, blisters.
Have significant other rub their hand across bottom of foot to check for temperature changes
which could indicate infection.
Dry skin can be caused by some medications or friction from backless shoes. Creams
are better than lotions. Never apply between toes.
Toenails should be cut straight across.
If you experience significant numbness, have diabetes and/or have poor circulation,
you should see a podiatrist regularly. This is necessary to prevent a problem and monitor feet.
If there’s an open sore, get pressure off sore area and go to Podiatrist immediately.
It’s a good idea to avoid crossing our legs since this can exacerbate the pressure on
nerves in our legs and increase our problems.
Warning: NEVER use medicated corn pads. They have acid which could cause infection.
Shoes:
PN patients’ feet tend to flatten out because muscles aren’t working well enough to
hold foot in proper position. As a result our feet tend to get longer and wider.
Comfortable shoes that don’t cause any irritation to foot are essential.
We should always have slippers or shoes on our feet; not just socks since we need protection
against something that can puncture foot. It’s not beneficial to wear sandals often because
something can poke in sandals and cut feet.
Compensate for changed sensitivity to hot and cold:
Check water temperature with your elbow or another part of your body where sensation
is still correct before exposing feet to hot or cold water.
Take extra care when touching a hot pan, use extra thick pot holders. Something from
the oven may feel hotter to us than it does to someone not suffering from PN.
Bathroom safety:
The bathroom is the most dangerous room in the house. For approximately $200, a bathroom
can be made to be very safe. The following are highly recommended:
grab bars in our showers/bathtubs. Be sure they’re installed properly
bath benches -- recommended with a back and height-adjustable legs
long handle shower hose with shut off at handle
a rubber-backed bath mat outside the shower to absorb water; not a towel which can slip
Helpful Adaptive Equipment:
Grabbers
Canes
Lift chairs
Four-wheel walker with seat
Medical scooter
Low compression stockings increase circulation for those who have swelling in their
ankles and legs. Savarese recommends that everyone (EXCEPT SOMEONE WHO HAS THROMBOSIS) who
flies or takes long rides in a car or bus should wear them.
"Pedlar" (similar to benefit derived from an exercise bike but only the peddles)
can be used from the comfort of any chair. Increases circulation, helps alleviate pain, may
help to slow down the progression of neuropathy.
Check the size of the brake pedal in a car before you buy it. According to one member,
the Mercury Sable and Ford Taurus have brake pedals that are significantly larger than the gas
pedals.
Hand controls are available for car, cost approximately $1,000 and MAY be paid for
by the car manufacturer. Ask salesman after you’ve negotiated your best deal for the car
without hand controls.
Precautions re: medications...
Neurontin - can cause lightheadness in some people. Most common side effect is
swelling of the ankles but it goes away. Recommended highest dose is approximately 3600 mg/day
Elavil: Prolonged use can lead to heart problems and affect your memory.
Topiramate (topamax) – recent warning issued re causing glaucoma in some, weight
loss in some. Also known to cause kidney stones. Drinks lots of water if you take this drug.
Tylenol now carries liver and kidney warnings. Therefore, it is advisable to limit
yourself to 1 or 2 a day. It’s a good idea to alternate between aspirin, Advil and Tylenol if
you’re looking for over-the-counter pain relief.
Too much of vitamin B6 can cause neuropathy. Only take 50 MG of B6 or less each day;
not more.
Diabeties:
Sugar has to be well controlled in diabetics to ease pain of PN.
Ace inhibitor important for diabetics – with or without high blood pressure.
They help prevent diabetes.
Diabetics with PN should consider taking alpha lipoic acid and borash oil which is found in
flax seed. Pre-diabetics should take a low dose of alpha lipoic acid of approx. 100 mg. a day.
Topical Ointments:
Capacin doesn’t work right away. For many it cancels pain feeling. The roll on is
best and should be used 4 times a day.
Blue Ice, massage or Mineral Ice often help
Blue Ice, massage or Mineral Ice often help.
PK-5 – be sure to clean area with alcohol first or it won’t work.
Super Blue Stuff available only via mail order. Some people have found a similar
product in dollar stores also beneficial.
Yvonne, thanks again for this wealth of information...
So you had a lot of problems and your MD sent you to a Neurologist and he/she
did tests and you have PN. More than likely you were given an Rx for a drug
(an antidepressant/mood elevator/anti spasmodic/pain killer) and told to come back in a
few months
Actually there is much you can do to help yourself both before and after you
saw the MD and then continuing. They are as follows:
…Dietary Upgrade--eliminate the bad foods you are eating and start eating the
good ones….FRESH FRUITS AND VEGGIES AND LESS MEAT AND MORE FISH FOR A START….PLUS A DAILY INTAKE
OF RED WINE.
…Exercise ..to improve your circulation of both the blood and lymph
(the blood brings Oxygen and nutrition and disease fighting elements to the body and the lymph
carries the disease fighters and carries away the debris and poisons in the body). 30-40 min a
day is recommended for walking or in the pool. You might also try a stretching routine in the
AM BEFORE you get out of bed to limber up and get the blood moving.
…Yoga breathing to get the most Oxygen to the blood cells and CO2 out.
…Meditation for stress reduction.
…Comfortable shoes to relieve the pressure on the toes.
…”Tent” the bed around the toes if they are very sensitive.
….Various topical over the counter meds to relieve pain...peppermint
cream rub---PK-5---Supplementation to add the necessary vitamin and Herbs and Minerals to your
food intake to support wintergreen and aspirin---capsaicin cream etc.
…Supplementation with Vitamins, Minerals, and Herbs to supply what you are lacking in your
diet for the best health of your blood vessel walls and general health.
… Take extra good care of your feet, especially if you have lost the feeling in them due to
nerve loss or function. Check your shoes before putting them on…for objects in them. Wash the feet
and dry them thoroughly…use a peppermint cream before putting on your socks for more comfort thru
the day.
…If you have loss of motor nerve function…do not be embarrassed to use a cane, walker or
motorized chair. It will help you get around and be more social.
…Contact Winston Hamby at www.winoverpn.com
for excellent info on PN TIPS.
…REMEMBER THAT NO DRUG WILL MAKE YOUR NERVES HEALTHY…ONLY BETTER NUTRITION AND A HIGHER LEVEL
OF WELL BEING START YOU ON THAT ROAD.
…For those who are Diabetic…I urge you to read “The Glucose Revolution---
The Glycemic Index”, by Dr’s. Miller/Wolever/Colaguiri and K. Powell, Nutritionists.
IT WILL PROLONG YOUR LIFE.
FEEL FREE TO Email ME FOR THE MANY DETAILS ON THE SUBJECTS I HAVE DISCUSSED ABOVE. IN THE MANUAL
ON LIVING WITH PN I COVER ALL THEM ABOVE WITH EXERCISE DIAGRAMS.