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Back in 2004, I was put on Gabapentin, starting on a low dosage and progressively increased to the maximum dosage of 300mg x 4 capsules x 3 times per day [42]. It seemed to reduce the acute pain and tightness in the feet [15] and around the lower chest wall [03] to a certain extent. However, there were frequent flare-ups with increased pain [20, 25].

For three times, the pain was so persistently severe and intense that I felt I could no longer cope with it and I asked my GP to hospitalize me with the hope that the pain specialist could help me to reduce it. However, the only thing they did was to prescribe me pain killers on top of Gabapentin. There were two problems: adverse reaction and break-through pain. [42]

First, it was Fentanyl in 2006, which made me vomit both solid foods and fluid after just three patches (stopped); then Oxycontin with Oxynorm for break-through pain in 2011 (just a short period); and Jurnista (hydromorphone) with liquid Dilaudid (Hydromorphone hydrochloride – never taken) in 2014 [42]. I no longer take any of these pain numbing medications.

Besides the adverse reactions, the first-line pain killers did not actually reduce the pain much. Even while I was in hospital taking them, there were frequent flare-ups [20, 25, 36], to which they would add a break-through pain killer, which, again, did not always help.

My question is: If the pain killers are effective, why should there be break-through pain? What causes the ‘break-through’ pain (flare-ups)? Apparently, it “comes suddenly and reaches peak intensity within three minutes and normally lasts 30-60 minutes”. However, my flare-ups usually lead to prolonged pain with increased intensity and very often slowly extends to wider areas [23, 36]; sometimes it lasts for days. They are not always end-of-dose failures pain either. Why? There must be some other factors involved.

I noticed too that, sometimes, some of the prescribed pain killers did reduce the pain to a certain extent in terms of intensity and duration but other times they were completely useless and the pain actually got worse! Why? Why was it that my 48-hour cycle of alternate good-bad days often remained the same despite taking one of these pain-killers? There should have been only good days, no bad days.

There must be other factors involved.

I started paying attention to my activities (what, how, where, when, how long), my postures (sitting, lying, duration), my diet, my supplements, my moods, the weather, etc., in relation to my pain types, patterns, locations, duration, intensity, and quality. That is, I look at the big picture and take a holistic approach.

Over the years, through informal observations, notes taken, analyses, deductions, trials and errors, and so on, I have found the following factors that can affect the intensity, duration, character, and even patterns and locations of my chronic pains. These are also the factors through which I have eventually learned to manage and cope with my chronic pains and thus improve the quality of my life to a certain extent.

THE PHYSICAL FACTORS:

Contacts with Physical Surfaces: Long term contacts creating new contact pain or aggravating existing neuropathic pain: mattress, wheelchair cushion, backrest, arm rests, left hand grip, footplates, calf supports, shoes, bedrails, handrails. These are frequently reviewed and improved on as much as possible but some are almost impossible.

Postures: Prolonged and inappropriate sitting and sleeping postures bring escalating pain all over the body. Through observations, analyses, deduction, trials and errors, I have found postures that minimize pains.

Activities: Too much house work with careless stretching out, turning, twisting, bending of the upper torso, and rubbing back against backrest. I have developed strategies to minimize the effects.

Exercise and light massage: Lack of exercise resulting in muscular stiffness, joint paints, bad circulation, more pains. I have developed stretching exercises and light massage of my thighs, calves and arms.

THE INTERNAL FACTORS: TO IMPROVE MY HEALTH IN GENERAL

I decided to improve my health in general: diet, supplements, exercise, sleep, deep breathing and meditation.

Food & Fluid Intake and Diet: Acid-forming foods like sugary and starchy foods and drinks, and milk products intensify all the different types of pain. An alkaline-forming diet focusing on plant-based foods is far more helpful.

Sleep: Insufficient and interrupted sleep resulted from severe pain and the need to roll over every 2-3 hours to prevent pressure sores; sleepiness during the day. I usually trey to take a nap during the day.

Stress, Anxiety, Worries, Social Isolation: Mental stress, anxiety and worries intensify pain, making it more intolerable. Stress from overnight carer shortage problem looms over many other problems.

Supplements: Especially magnesium, vitamin B6, calcium and vitamin D3, probiotic, turmeric.

Deep Breathing: I have been practicing deep breathing for a very long time, useful in calming the mind to cope with the chronic pain.

Mindfulness Meditation: I find mindfulness meditation useful in quieting my chronic neuropathic pain to a large extent.

Creativity:  Keeping the mind creatively active. It also serves as a distraction from the persistent pain.

THE EXTERNAL FACTORS:

The Weather: Too cold, the pain in my lower body, esp. the feet, intensifies; too warm, the feet swell and feel tightly bound; overcast leading to rain or storm is worst. I have become very weather conscious and learned to keep myself warm or sufficiently cool. Running the air-con 24/7 costs a lot.

Niagara falls panorama from Canadian side

THE BIG-PICTURE OF A HOLISTIC APPROACH

Therefore, my big-picture approach is (1) to differentiate and identify types of pains in relation to their character, patterns, duration, intensity, quality, locations, etc., (2) to identify the contributing factors to the escalation and aggravation of pain, (3) to manage my chronic neuropathic pain with a holistic approach, paying attention to improving my general health (in terms of diet, supplements, etc.) and improving my activities, postures, mental state (with deep breathing and mindfulness meditation).

Each will be described in more detail in subsequent posts.

[NEXT POST: Chronic Neuropathic Pain Management: Holistic approach to health]

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Niagara falls panorama from Canadian side, 2007, by Sbittante, from Source: http://stefanobittante.blogspot.com/2007/06/niagara-falls-panorama.html
This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.at https://commons.wikimedia.org/wiki/File:Niagara_falls_panorama.jpg