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What is Peripheral Neuropathy? Education & Support for Australian Sufferers.

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Self-Management, Education and Support

For Australian sufferers of Neuropathy ONLY

http://www.mydr.com.au/pain/neuropathic-pain

For Australians with Peripheral Neuropathy who are on Facebook, excellent Group-

Peripheral Neuropathy Sufferers Australia
closed group

https://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM542169.pdf

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Welcome Oriental

https://www.diabetesqld.org.au/media-centre/2018/march/discovery-could-lead-to-new-therapies-for-peripheral-neuropathy.aspx

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 - Diabetes type II & Nutritional deficiency Vitamin B's (alcohol).  Mine started in my left foot and toes in the 1990's, pins & needles & numbness then after I ceased alcohol in 2009, progressed from my left leg to my right side and into both arms, hands, fingers and then internally Bowel, Bladder up to the heart (irregular heart rate/arrhythmia)after 2012 .  Aged 64, my previous GP took my driver's licence off me, as I couldn't feel anything from my thighs down to both feet and elbows to both hands/fingers, and lack coordination, have Diabetes and Heart Condition. (I can't go through a door or gate with safety).
I use a walking aide for balance, caused by the Peripheral Neuropathy and prescription drug Pregabalin (Lyrica).

The symptoms of diabetic Autonomic Neuropathy cause excessive body sweating & absence of foot odour (sweating), dry cracked and ulcerated skin under my feet (Neuropathic Ulcers), 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 a Hi Lo electric bed or a double mattress bed for the height, I can't get off a normal ensemble as its too low, however even though Veterans Affairs accepts PN as Military related, I don't meet the RAP guidelines for a HiLo bed, so it means I must use a UNSAFE Double mattress. I need 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, called loss of sense proprioception, I shuffle when walking,.  
I have severe loss of digital hand dexterity, "difficulty griping/holding objects in my hands, or applying downward pressure" to get up from the sitting position, or lifting objects above the level of my waist due to lack of strength/ permanent nerve damage and lack any power/strength to thrown objects any distance. (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.

In my residence I have and wear a Vital Call Personal Alarm pendant.

My Sensorimotor Polyneuropathy symptoms are very severe, no ankle reflexes, my feet and legs have "constant pins & needles and tightness" with 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 with Lyrica, 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 even with my walking stick, 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 bottom & side bed cradles to keep the sheets off my feet/legs & body, I MUST 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 need air conditioning for comfort and pain reduction.  
The polyneuropathic feet pain/paraesthesia is so severe that I constantly experienced suicidal ideation.   There is also major calf/thigh and left bicep muscle weakness, and 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 more than 20 meters without stopping, 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 mindful though,
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) 450mg daily (225mg  mane (morning) and 225mg at bedtime), plus Endone (oxycodone) 10mg daily, for chronic paraesthesia (pins & needles)NOT PAIN (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. BUT the side effects exacerbates Depression and gives me suicidal thoughts.

Spinal Compressed Nerves are common for sufferer's with Sensorimotor Peripheral Neuropathy.
I have very painful C5/6 in my neck with pain running down into my left side Bicep then into my thumb and 1st finger.
And L2/3 intermittent Right side Sciatic leg pain.
Heat packs help, and sometimes massage.
Unfortunately I personally am UNFIT for surgery as my blood won't clot, and have portal hypertension. Which means I could bleed to death during surgery.

Contact me if you have any questions Greg- greg1949@y7mail.com

Peripheral Neuropathy explained-

http://www.racgp.org.au/afp/2015/march/paraesthesia-and-peripheral-neuropathy/

http://www.racgp.org.au/afp/2013/march/neuropathic-pain-update/

http://twinboro.com/body/foot/conditions/neuropathy-foot-peripheral-neuropathy-nj.html

http://en.wikipedia.org/wiki/Fibromyalgia

http://www.lymedisease.org.au/

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Sensory Nerves, "Neurogenic Inflammation;
Sometimes known as 'Sick Building Syndrome'

http://www.asehaqld.org.au/

http://emerge.org.au/what-is-multiple-chemical-sensitivity-mcs/

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*American Neuropathy Association, a wealth of information and support,

https://www.foundationforpn.org/

https://neuropathysupportnetwork.org

A Reference to other Neuropathy Groups, Webpages in Australia.

http://www.gbs-cidp-nsw.org.au/

http://www.ingroup.org.au/

http://cmt.org.au/control/about-cmt

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Erythromelagia,
Can sometimes be a secondary disease to
Neuropathy.

http://www.dermnetnz.org/vascular/erythromelalgia.html

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Nutritional & Optic Neuropathies

https://www.foundationforpn.org/livingwithperipheralneuropathy/causes/nutritional-vitamin-deficiency.cfm

http://www.healio.com/ophthalmology/curbside-consultation/%7B71583a9d-95b1-48e4-abb3-49ed8c58991a%7D/how-do-you-manage-toxic-

Drugs & Toxins that Can Induce or Cause Polyneuropathies

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/neurology/peripheral-neuropathy/

Medication Induced-

http://www.neurology.org/content/early/2014/08/22/WNL.0000000000000846.short

https://www.foundationforpn.org/livingwithperipheralneuropathy/causes/drugscausingperipheralneuropathy.cfm

Chemotherapy Induced-

http://brochures.mater.org.au/brochures/mater-private-hospital-brisbane/chemotherapy-side-effects

https://www.painmanagement.org.au/2014-09-11-13-34-03/2014-09-11-13-35-16/111-chemotherapy-induced-pain.html

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/peripheralneuropathy/peripheral-neuropathy-caused-by-chemotherapy-toc

http://www.myelomabeacon.com/news/2012/03/26/drug-induced-peripheral-neuropathy-in-multiple-myeloma-patients-part-1-what-is-it-and-who-is-at-risk/

http://onlinelibrary.wiley.com/doi/10.3322/caac.21204/full

Alcoholic Neuropathy-

http://www.nlm.nih.gov/medlineplus/ency/article/000714.htm

HIV-

http://napwha.org.au/health-treatment/hiv-treatment/side-effects-resistance-and-adherence/real-pain

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*Diabetic Neuropathy,

http://www.diabetes.usyd.edu.au/foot/Pain1.html

http://www.podiatrypractice.com.au/diabetic-foot-treatment/

http://diabetes.webmd.com/diabetes-neuropathy

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Understanding Treatment Strategies page 2

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