Self-Management, Education and Support
This 3 page website is provided for ALL Australian's who are suffering with Peripheral Neuropathy and associated
neuropathic pain, to better their the Education and Management of this Insidious disease.
At the bottom of this page click to get to page 2, then at the top of page 2 click to get to page 3.
MY PERSONAL SYMPTOMS- I have Advanced Sensorimotor & Autonomic Polyneuropathy. Cause - Nutritional deficiency (alcohol).
Mine started in my left foot and toes, pins & needles & numbness then after I ceased alcohol in 2009, progressed to
my right side and into both arms, hands, fingers and then internally up to the heart (irregular heart rate/arrhythmia) .
Aged 64, my previous GP took my driver's licence off me, as I couldn't feel anything from my knees down to both feet and
elbows to both hands/fingers, and because I lack coordination.
I use a walking aide for balance, caused by the neuropathy and prescription drug Pregabalin (Lyrica).
The symptoms of autonomic neuropathy affect excessive body sweating & absence of foot odour (sweating), dry cracked
and ulcerated skin under my feet, loss of sexual function, dry mouth and Eyes, low blood pressure, urination hesitancy, and irregular rapid
heart rate, to name just a few! I have extreme muscle weakness in lower & upper limbs, I MUST have rail supports when
using steps or stairs, I can't safely ascend more than 2 steps due to the fact I can't lift my feet high enough loss of feet
position sense, they drag, catch and I fall. I have severe loss of digital hand dexterity, "difficulty griping/holding
objects in my hands", lifting objects above the level of my waist due to lack of strength/ permanent nerve damage or
have any power to thrown any objects. (Rail supports are necessary in the toilet and shower) I am Romberg Positive, that is,
if I close my eyes or bend down/forward I loose my balance and fall over.
My Sensorimotor polyneuropathy symptoms are very severe, no ankle reflexes, my feet and legs have "constant pins
& needles and tightness" (Glove/sock, constant feeling around my feet, you don't know whether or not you are wearing
socks/shoes). Pain NOT fully relieved by any medication, at best 40-60% on some days on other days no pain relief is possible,
pure agony, which makes depression/mood swings more chronic. I have difficulty walking more than 20 meters without stopping, and
when laying flat on the bed the pain is always exacerbated. I prefer to sit, even standing aggravates the soles of my feet and
causes them to burn and complete numbness causes Neuropathic Ulcers, craters on the soles. I ALWAYS NEED a bed cradle to
keep the sheets off my feet and legs, sleep with the sheets/blankets off my lower limbs so NOT to exacerbated the pain by
touch, without a cradle I can't sleep! I generally get at best even with a cradle only 3-6 hours sleep per night, I have great
difficulty getting to sleep or awake about 3am on most mornings during summer without air conditioning. I have to take Serepax
30mg to sedate myself, the neuropathic feet pain/paraesthesia is so severe that I constantly experienced suicidal ideation,
I have attempted that twice, maybe third time lucky? There is also major calf/thighs muscle weakness, wastage, loss of sense
proprioception, I shuffle when walking, have *dysaesthesia, *allodynia & hyperalgesia.
The disease itself causes ataxia (loss of balance) however my medication 'Lyrica' Pfizer, also causes loss of balance,
and excessive weight gain (increased appetite) and when depressed I comfort eat, or don't feel like eating, The weight gain
affects other organs and can't be reduced by diet and as I can't walk any great distance or use an exercise bike (because
of my Heart condition/irregular heart rate/arrhythmia).
The constant pain generated from my lower extremities (feet & legs) 'pins & needles/intermittent electric shocks'
severely exacerbates my diagnosed military related Depression. Thus causing frequent suicidal ideation made worse by the
fact I can't be safely prescribe any psychiatric medications side effects Palpitations/racing heart.
Meditation/Relaxation/Tai Chi have NOT totally relieved my
neuropathic pain in the short or long term, but it does reduced my (PTSD) Anxiety & depression symptoms. Please be
NOT all sufferers have this degree of discomfort & disability. I live alone family have all ignored me since my military
service. My home has become a PRISON! I lack community interaction due to this insidious disease
My medications are Lyrica (pregabalin) 425mg daily (225mg mane (morning) and 225mg at bedtime), plus Endone (oxycodone) 10mg,
for chronic paraesthesia (pins & needles) (5mg morning/5mg bedtime).
Some days must top up on extra 5mg prn (as required). (I have increased my Lyrica to 600mg daily, however it never lessens
the neuropathic pain, I find 425mg is a daily therapeutic dose.
Contact me if you have any questions Greg- firstname.lastname@example.org
Peripheral Neuropathy explained-
Sensory Nerves, "Neurogenic Inflammation;
Sometimes known as
'Sick Building Syndrome'
*American Neuropathy Association, a wealth of information and support,