42. Chronic Neuropathic Pain (3): Reactions to Prescribed Pain Killers

[Numbers in square brackets refer to posts listed on the right and on the Home/Archive page.]

Back in 2004, immediately after that fateful ‘simple’ biopsy operation on the spinal cord tumour [01], I woke up with tightness around my lower chest wall [03] and burning and crackling sensations from buttocks down to my toes [07]; my left leg was numb to the touch but right leg was hypersensitive to the softest touch [03, 15, 40]! The onset of chronic neuropathic pains [03, 40]! Since then I have been enduring chronic, acute and often excruciating neuropathic pain. The pain was originally confined to around the lower chest wall [03] down the whole lower body [08]. The worst pains were the sharp piercing pains in the buttocks [16], the pricking pains in the thighs [08], the hot barbed-wire-wrapped in the calves [13], and, especially, the tightly bound, burning feet [15, 21, 24, 27] – all areas of contact from which I have no escape! Over the past 14¾ years, it has gradually extended, first to the whole hot-stones-covered back [08], then to the needle-pricking upper chest [19.2], and now the nagging pain in the whole arms [33], from burning shoulders, stiff neck [26] to over-loaded-pin-cushion finger tips.  The pain in some of these locations must have been resulted from or aggravated by long-term contact, e.g., the buttocks and the thighs (wheelchair cushion), the feet (footplate), the whole back (backrest), the forearms and elbows (armrests), the hands (handrails of bed).

So much pain and such long suffering as a result of a ‘simple’ biopsy operation!

Over the past 14 years and 10 months, I have been put through various prescribed pain killers for the chronic neuropathic pain and spasm  [05, 06, 12, 14, 17, 22].

After the ‘simple’ biopsy operation, the neurosurgeon prescribed me 8 Panadol (paracetamol) tablets per day, most likely for post-operative pain. It was (and is) completely useless for neuropathic pain and it gave me constipation. In all the 1.5 weeks I was in his surgery ward, he never treated my neuropathic pain because he never admitted that I had sustained nerve damage as a result of the operation performed by him. In fact, when I described the internal crackling and burning sensations in my lower body (demonstrating it by opening and closing my right fist) [08] and asked him what it was and why, he just said, ‘I don’t know’, non-convincingly. Is it possible at all that a neurosurgeon does not know or recognise the symptoms of nerve damage or spinal cord injury?

All he did was getting me a private physiotherapist (whom I had to pay out of my pocket), while waiting for a specialist in a spinal injury unit of another hospital to come to examine me, who actually took more than a week to come. He examined me carefully and diagnosed that I had indeed sustained ‘nerve damage’, i.e., a spinal cord injury.  The neurosurgeon then arranged to have me transferred from the Surgery Ward of his hospital to the Rehab-Geriatric Ward in another hospital. The transfer was the recommendation and arrangement by a rehab doctor from his hospital who actually ‘owed’ him ‘a favour’.

I eventually stayed nearly 3 months in the second hospital, spending much of the mornings and afternoons repeating the exercises prescribed by the physiotherapists to prepare me to be an effective wheelchair user with the help of a young occupational therapist.

Gabapentin (Neurontin) (since 2004)

Meanwhile, the acute pain was still very real but I was still hoping it was temporary and that it would eventually subside. Of course, it wasn’t temporary and it didn’t subside. It seemed to get worse and worse and more and more unbearable. I was never keen in taking pain killer, but the pain was so unbearable that I eventually accepted the lowest possible dosage of Gabapentin (just one 300 mg capsule a day) prescribed by the rehab specialist and gradually increased to two capsules and then three capsules per day. It seemed to help, but inconsistently. My right leg was still hypersensitive to touch.

Meanwhile, I continued to do all the arm exercises, prescribed by the physiotherapists, to strengthen my arms for self-transfer. I was also taught self-transfer techniques and strategies by the occupational therapist and I soon put them into practice using a manual wheelchair on loan from an association of which I had just become a member.

After being discharged from the hospital, I was put on an outpatient rehab program at another (public) hospital for three months. While I made progress in mobility and self-transfer, my chronic neuropathic pain increased in intensity. The spinal injury rehabilitation specialist I visited every three months progressively increased the intake of Gabapentin from one capsule three times a day (300 mg x 1 x 3 = 900 gm), first to 2 capsules (1,800 gm), then to 3 capsules (2,700 gm), and finally to four capsules to the maximum dosage of 3,600 gm. It seemed to reduce the pain in the feet and the tightness around the lower chest wall to a certain extent. But there were frequent flare-ups with increased pains [20, 25].

A pain management specialist in the same hospital, who explained the concepts of ‘pain threshold’ and ‘pain tolerance’, to me, maintained that if pain killer was started as soon as pain was felt, the dosage could be low; but once it had escalated to a high level, a higher dosage would have to be taken and maintained.

Now that I was already on the maximum dosage, I would have to maintain that indefinitely.

I noticed that my pain level and pattern seemed to follow an alternate good-day-and-bad-day 48-hour cycle most of the time. My pain level could vary from 8-10/10 in a bad day to 2/10 in a good day!

Endeb (Amitriptyline) (briefly in 2004)

Prior to the biopsy operation, I used to visit a musculo-skeletal doctor for acupuncture on my stiff neck and shoulders. He once prescribed me diazepam to relax the stiffness even though I had never complained about any sleeping problem or anxiety. As soon as I found out that it was a tranquilizer, I stopped taking it; I didn’t need it. Now I visited him for chronic neuropathic pain and he prescribed 75 gm Endeb for relaxation, to be taken at night.

Within two days, I started having severe constipation, trembling hands, vivid dreams, day time sleepiness, and profuse hair loss. In addition, to my surprise, I became very ‘chirpy’ the next day, to quote a visiting friend. However, I actually didn’t like it: ‘It is not me!’. I didn’t like the idea that I was ‘made happier artificially’.  My GP reduced it to 10 mg per night; the symptoms reduced. However, when she gradually increased it by 5 gm up to 25 gm, the symptoms returned. It seemed to reduce the acute pain in the feet and enabled me to sleep slightly longer hours at night.

When all the adverse reactions became severe again, I just stopped taking it and have never touched it again. I don’t need it; My GP had never prescribed any antidepressant or tranquilizer before. Prior to the biopsy operation, I had never had problem falling asleep or sleeping straight through 4 – 6 hours.

Blacofen  (Gablofen, Lioresal) for SPASM (briefly in 2004)

in 2004, a neurologist prescribed me 10 gm of Baclofen. The spasm quietened down a bit, but I had profuse hair loss – strands of my black hair were all over the light coloured floor tiles and carpet, and strands of my white hair all over my black Roho cushion and dark coloured clothing! I didn’t want to lose my hair. My GP reduced it to ½ a tablet at night. However, symptoms remained. So, after a little while, I stopped it and has never taken it again. Now, the invisible puppeteer reigned supreme [05, 06, 12, 14, 17, 22]! Until I started taking magnesium regularly.

I now see spasm as the body resetting its tense and stiff muscles. After every attack/episode, my body feel relaxed [28].

Tramal (Tramadol) 50 mg and Tramal SR 100 gm (2005 -9)

Tramal 50 gm was first taken as a trial, only when required. It seemed to be quite effective in lowering pain in the feet within a few hours, thus enabling me to sit up in my wheelchair longer, doing some work.  Later, I started on Tramal 100 mg SR x1 in the morning together with the Gabapentin. It seemed to be quite effective in lowering pain in the feet and lower leg from mid-morning to late afternoon in a ‘good day’, but it didn’t seem to help in a ‘bad day’ even when Tramal 50 mg was taken — it was hardly taken since it caused constipation.

OxyContin (Oxycodone hydrochloride) & Oxycodone (Pain Management at Palliative Care (1) (2006))

After the 2006 radiation treatment on my spinal cord tumour, my neuropathic pain became even more severe. I found it so difficult to cope that I asked my GP to hospitalize me. The Oncologist prescribed 25 gm of Oxycontin and 5 gm of  Oxycodone for breakthrough pain. During the 4 weeks I was there, they didn’t help much. Despite the medication, the pain pattern still followed a 48-hour cycle – one bad day followed by one good day. They gave me ‘dizziness, sleepiness and dry mouth’ Oxydone gave me nausea.

When those didn’t seem to work, she prescribed Fentanyl patches.

Durogesic 25 (Fentanyl 25 mg) Patches (Pain Management at Palliative Care (1) (2006)) (5 patches)  

This caused even more problems: nausea, vomiting, loss of appetite, dry mouth, dry itchy skin.  After 3 patches, I could not hold down any food or liquid. I would vomit after any intake of solid food and even liquid for 2 days. This must be the first time in decades that I had vomited. My GP sent an ambulance to rush me to emergency, where I received intravenous drips for two days. Staying overnight, sharing a ward with three other patients who had to have blood collected in the middle of the night. The collector and the patient would have a loud conversation as if they were the only people in the ward. It was just impossible to sleep at all. I was completely stranded in bed because my fold-up wheelchair was not allowed in the ambulance; a friend had to bring it in to me so that she could take me home. I requested a discharge.

I have never used Fentanyl since then!

The Oncologist was obviously treating cancer pain, not chronic neuropathic pain.

Oxycontine 20 mg x 2, Oxynorm 5 mg when needed (Pain Management at Palliative Care (2) (2011)

However, in 2011, the pain was so severe that I was hospitalized the 2nd time, at my own request, and was sent to a palliative care unit of a private hospital as a public patient.  I was persuaded by the pain specialist and community nurse to go on Oxycontine 20 mg x 2, Oxynorm 5 mg when needed. However, nausea and vomiting, loss of appetite, dizziness, sleepiness, dry mouth were side effects I had to endure during the one year I was taking them. I eventually weaned myself off it.

Lyrica (Pregabalin) 2012/3 (2 months only)

When the expensive Gabapentin was taken off the PBS list (government-subsidized medication) and replaced by the less expensive Lyrica, I gave it a go. However, after a few weeks, I had to go back to Gabapentin because I was experiencing severe edema in the feet, increased neuropathic pain, severe constipation. After a while, I just had to stop it and went back to Gabapentin even though it is now on private script. My private health fund pays just about 50%. for it.

Tricyclic Anti-depressant and Jurnista (Pain Management at Palliative Care (3)) (very briefly in 2014)

In summer 2014, my skin became very itchy and it kept me awake during the night, scratching my arms and legs, leaving bruises all over.  I was at breaking point. The Medical Oncologist sent me to a palliative care unit for pain management. Unfortunately, the condition was aggravated by the lack of air-condition in the special ‘disability’ room I was in! In the height of a hot summer, I had a standing fan on full and covered myself only with a thin bed sheet, BUT my skin itched so much that I woke up frequently to scratch it! Naturally, I became anxious and cranky.

Against my will, I accepted a Tetracyclic antidepressant even though I had never taken any anti-depressant before. The specialist assured me that it was effective for itchy skin.  No, it wasn’t!

The heat and air circulation in the room was so bad that I asked to be discharged after 2 suffering weeks! The symptoms prevailed but I had air-con at home! In the first review as an outpatient, I saw another palliative care doctor at the hospital, I asked to be taken off the medication, and, to my relief, she agreed!

In fact, I found a very simple and effective solution to my itchy skin: moisturizer! Which I had not needed prior to that point. I hadn’t noticed how dry and wrinkled my skin had become! So I wasn’t clinically depressed at all! I had never been.

Jurnista (hydromorphone) (2014 – 2018) + Dilaudid (Hydromorphone hydrochloride) (never used)

For neuropathic pain relief, they persuaded me to go on Jurnista 4 gm x 1 once a day, at night, plus a liquid one called Dilaudid (Hydromorphone hydrochloride) for breakthrough pain. I put it into the back of the cupboard and have completely forgotten about it; I have never touched it; it must be out of date by now!

Again, the palliative care pain management specialist was treating my chronic pain as ‘cancer pain’.

I was supposed to maintain a constant level of the drug to prevent flare-ups. However, I found it silly and illogical taking it when I had hardly any pain sometimes! It is like pumping poison into my system unnecessarily. My GP and chemist advised that I could take it only when I needed it.  Eventually, I stopped it in early 2018 and have never touched it since then.

I am pleased I stopped taking it as I found that there is a “Potential interaction with gabapentin and opioids. Case controlled study showed increased risk of opioid related death when gabapentin given with opioids. Could be a class effect.” (https://www.nottsapc.nhs.uk/media/1251/neuropathic-pain.pdf). There is the additional “risk of severe respiratory depression (MHRA): Gabapentin — rare risk of severe respiratory depression even without concomitant opioids. Patients at higher risk: compromised respiratory function, respiratory or neurological disease, renal impairment, concomitant use of central nervous system (CNS) depressants, and elderly people. Dose adjustments might be necessary in these patients. Could be a class effect.” (https://www.nottsapc.nhs.uk/media/1251/neuropathic-pain.pdf)

Yes, over the years, I have noticed the deep breathing I had developed since the late 70s has become shorter and shallower.

Gabapentin (since 2004)

So, here I am, at the end of 2018, back to square one, taking only Gabapentin for the chronic neuropathic pain resulted from that supposedly ‘simple’ biopsy operation on my spinal cord tumour in 2004, performed by an eager neurosurgeon. Taking the maximum dosage three times a day seems to have become part of my compulsory daily routines like getting up, going to toilet, having a morning shower, getting dressed, taking meals, going to bed, and so on. My system must have got used to it.

Just a few months ago, my GP told me that research shows that increasing the dosage does not necessarily help, and that I could start scaling the dosage down to a level comfortable for myself. Since then, I have progressively scaled it down from 1200 mg x 3 to 900 mg x 3 per day. GP said I could scale it down further according to my needs and that I will have to find out if it actually works for me. I would have loved stopping taking it or any pain killer completely at once! But I haven’t done that. In a way, I am afraid to do so.

The question that goes swirling in my head is: What will happen when/if I eventually stop taking it completely?

My worst fears are: Will my chronic neuropathic pain become even more unbearable? Will my spasm become more violent?  Will I end up developing and having frequent seizures since it is actually an anti-convulsion medication, even though I have never had any seizure before?  

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NEXT POST: CHRONIC NEUROPATHIC PAIN MANAGEMENT (1): THE BIG PICTURE – March, 2019
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39. Last Walks

[Numbers in square brackets refer to posts listed on the right and on the Home Page/Archives page.]

It has been 14 years and 8 months since that fateful hot summer day in 2004, when my life was turned upside down as a result of a biopsy operation of a spinal cord tumour  unexpectedly detected by MRI. [01] 

     Walked in, Wheeled Out
     (First posted on January 4, 2015 [02])

I walked into a hospital
in a hot summer afternoon in February 2004,
for a biopsy operation on a spinal cord tumour.

The Neurosurgeon said,
‘This is going to be a simple operation for you
because you are healthy and well.
You will be able to get out of bed tomorrow,
                            but I couldn’t
leave the hospital three days later,
                            I didn’t and couldn’t
and return to work a month from now.’
                            I never did                               

Three months later,
I wheeled myself out of
the rehabilitation ward of another hospital.


The biopsy operation resulted in ‘incomplete paraplegia’ – I couldn’t move my once good right leg [09] and I had spasm in my left leg [04]. The right leg became hypersensitive to the softest feather, but the left leg was completely numb to the roughest brush [03]. And
I never stand upright or walk freely again.

When was the last time I stood upright? When was the last time I walked upright? Where was I? What was I doing? Who was with me? How did I feel? When and where were my last upright walks leading to that fateful day? 

Summer, 2004.  Intensely hot and dry.  Midday. Wondered how much UV light my broad brimmed straw hat and reflective umbrella managed to filter out. My face seemed to have become a block of burning wood, dying for a big splash of chilled water. My loose, long-sleeved, thin, cotton blouse was flowing gently towards the back, and my below-knee, cotton skirt was like a heated, thin metal sheet wrapping around my body. My feet were also on fire. Walking along the long, exposed, above-ground walkway was like walking on a track of burning charcoals in a fire festival, or bathing in a big, hot fan-force oven with heat waves bombarding from all directions. Even the occasional breeze was like a stream of hot wave from a suddenly flung open big oven nearby. I was like a lone traveller staggering along in a hot desert, eager to reach an oasis or a shelter.

I had just finished two weeks of teaching the intensive course in the summer school, for the fifth time. Once again, I managed to cover 13 weeks of one semester’s work in ten 3-hour mornings of seminars and workshops. Relieved. Exhausted. Cranky. Feeling even more difficult to cope with the nagging pain along my spine and lower back.

I would never have imagined that this would be my last summer school teaching — in fact, my last teaching day! And my last walk along this long, exposed, above-ground walkway from the classroom to my office, with one hand holding an opened, heat-reflective umbrella against the hot sun and another hand dragging a heavy trolley full of teaching materials, handouts, a recorder, and a big bottle of precious drinking water.

About a month later, when the new academic year started, I didn’t go into the classroom. I was going on a one-month medical leave. I handed over my usual teaching to another lecturer. On Friday, February 20, 2004, late afternoon, I switched off the computer, tidied up the desk and locked up my office. I expected myself to resume my duties after the medical leave. I then walked out of the building to the car park. My last walk at work. Never would I have imagined this would be the last time I drove my car off campus. The end of my sadly missed academic life.  

On Tuesday, February 24, the day before the biopsy operation, accompanied by my sister (KC) from overseas and my friend (M) from Sydney, I dragged myself to the supermarket and did our grocery shopping for the week. We bought plenty of fresh vegetables (broccoli, beans, zucchini, eggplant) for cooking and for salad (lettuce, tomato, cucumber, capsicum, fennel, celery, carrot, rocket, basil), fresh fruits, brown rice, breads, seeds and nuts, cereals, butter, jam, eggs, fresh pasta and sauce, yoghurt and ice cream, snacks, etc. The last time I ever walked upright in a supermarket.

On Wednesday, February 25, morning, just like going to work every morning, I walked out of my bedroom, through the dinning room, kitchen, sitting room, and up to the front doors and locked them up. I walked out of the house into the garage and locked up the garage doors and set the house alarm. I then got into the car, but I didn’t drive down the steep driveway to go to work. I got myself driven down the steep driveway to the hospital for the biopsy operation. Those were my last upright walks at home and from home.

On this very sunny, hot summer day, with apprehension, I walked into a private hospital, accompanied by my sister (KC) and two friends (M and Sh), for a ‘simple biopsy operation’.

The operation was scheduled at 1.30 p.m. I was warded in the morning in a room with other patients waiting to go into the theatre  too. We were partitioned by curtains penetrated by whispering and quiet speaking — calming fears and giving blessings? While lying on my back, waiting, I did my usual morning exercises in bed: I raised my knees up, grabbed them with my hands, and pressed them towards my chest. I raised my legs up to a 90-degree position to my body and then grabbed my feet with my hands and stretched them down to the left and the right. I sat up, bent forward, and touched my toes with my hands. I bent my body down until my head rested on my legs. Then, I bent my legs inwards, so that the soles of my feet could touch each other; then I grabbed them with my hands and pressed my knees down repeatedly. This would be the last time I could do all these exercises without assistance.

I was then given a bar of special soap to have a good scrub of my body under the shower. That was my last standing shower.

After the shower, donned with a one-size-fits-all, over-sized hospital outfit, I walked back to the bed to wait for my turn. That was my very last upright walk on this planet, 14 years and 8 months ago!

 

 

Standing and Walking In my Dreams     

In my dreams in the first few years,
I still saw myself
standing ‘tall and slim’,
walking ‘like a swimmer or dancer’;

doing things I did every day;
doing things I had never done before —
in familiar places, in strange new places,
in bright places, in dark and unfamiliar places.

In my dreams in recent years,
I often see myself in my wheelchair,
doing similar things differently, slowly, cautiously —
sometimes perfectly, sometimes clumsily, 
messily;

having the additional freedom of
doing things I had never done before;
doing things I had always wanted to do —
all successfully, happily!

 

 

 

 

 

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NEXT POST : CHRONIC NEUROPATHIC PAIN (1),  NOV 15, 2018
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Zahara de los Atunes, Provincia de Cádiz, Andalucía, España.
Photo by M Peinado, Spain. CCA 2.0 Generic License, via – 
 http://commons.wikimedia.org/wiki/File:006351_-_Zahara_de_los_Atunes_%287426899582%29.jpg

A Desert Wanderer in the Winnemucca dunes, by John Fowler from Plascitas, NM, USA, 2017. This file is licensed under the Creative Commons Attribution 2.0 Generic license.
at https://commons.wikimedia.org/wiki/File:Desert_Wanderer_(27426340729).jpg

A Woman Walking, by Daniel Case, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Woman_walking_in_exercise_clothing_on_Como_lakefront.jpg

A Woman Cooking at Home.  Cuinar_a_casa_3.jpg. 2015. Sourced from: https://www.flickr.com/photos/128390842@N06/16322582654/ 
This file is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license. at https://commons.wikimedia.org/wiki/File:Cuinar_a_casa_3.jpg

Australian wheelchair basketballer Liesl Tesch looks stoked during 2000 Sydney Paralympic Games match, by Sport the Library, sourced from Australian Paralympic Committee/Australian Sports Commission, 2000. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:141100_-_Wheelchair_basketball_Liesl_Tesch_stoked_3_-_3b_-_2000_Sydney_match_photo.jpg

A Wheelchair Dance. Ukrainian dance duo Vladimir and Snezhana Kernichnye. World champions 2013. On sports dances on wheelchairs. Masters of Sports of International class. Rec invasport, Donetsk, Ukraine. By Ar4en, 2014. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Kernichnye.jpg

Skating in cardinal during the 2006/07 season. By Jeremy vandervalk at English Wikipedia, Transferred from en.wikipedia to Commons by Magog the Ogre using CommonsHelper. This work has been released into the public domain by its author, Jeremy vandervalk at English Wikipedia. This applies worldwide. At https://commons.wikimedia.org/wiki/File:Skating_2.jpg 

Baile flamenco en el museo de Baile Flamenco de Sevilla. (Flamenco dance at the Flamenco Dance Museum in Seville.) by Schnobby, 2014, Sourced from File:Flamenco in Sevilla 03.jpg, This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license.  at https://commons.wikimedia.org/wiki/File:Flamenca_001.jpg

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38. My Irreversibly Changed Life (1): Managing Disability, Chronic Neuropathic Pain, Spasm, Illness

This is an introduction to the topics I will be writing about in more detail, to share. [Numbers in square brackets refer to the posts listed on the right and on the Archives/ Home Page.]

An Irreversibly and Drastically Changed Life

Back in 2004, a ‘simple’ biopsy operation of an accidentally MRI-detected spinal cord tumour [01] performed by an eager neurosurgeon unexpectedly resulted in ‘incomplete paraplegia’ [02], making me permanently ‘wheelchair bound’ [02, 10.]. It also resulted in  the sudden onset of frequently excruciating chronic neuropathic pain [03] and the sudden onset of spasm on the left side of my body [04].

An irreversibly, drastically changed life with a colossal and complex condition to manage: permanent disability, chronic neuropathic pain, spasm, cancer. Forced retirement with no regular income against huge expenses. House bound.

I was suddenly plunged into a completely new, unknown world in which I must learn to survive, to cope with, to manage, to transcend, to excel [32, 35]. It has been a steep learning curve and a long and challenging journey.

Spinal Cord Tumour

An Astrocytoma, Grade II, in my spinal cord: growing slowly,
not operational, not removable, not treatable, incurable! [01]
A time-bomb ticking.
“Spinal cord tumour patients live very long!”, said the Oncologist.
Which means I am on a long haul with prolonged suffering!
Yes, it has been 14 and a half years now!  How much longer?

Chronic Neuropathic Pain

After I eventually woke up from the anesthetics for the biopsy operation on that fateful day in February of 2004, I felt strange new sensations in my lower body [03]! Constant busting, scrunching, crackling, flickering, sparkling inside my whole lower body: buttocks [16], thighs [04, 07, 12, 27], especially calves and feet [07, 08, 15, 21]. I asked the Neurosurgeon what it was; he said he didn’t know. I later learned from a social worker working with spinal injury patients that it is incurable chronic neuropathic pain! So excruciating, almost unbearable! Eventually, the pain and sensations extended slowly from my lower body [12, 13, 15, 16, 21, 24, 27] upwards towards the upper body [17, 19, 24, 26, 33]. Fourteen and a half years later, it has now reached my neck and shoulders [26], arms [33], hands, fingertips. Chronic pain all over my body. [13, 20, 23, 25, 26, 34]

Pain management immediately after the biopsy surgery merely involved a daily intake of 8 Panadol tablets, prescribed by the neurosurgeon, which was absolutely useless! Later, an initially low dosage of Gabapentin, an anti-convulsion drug found to be useful for neuropathic pain, was prescribed by the rehabilitation specialist. It didn’t always help! Eventually, I have developed my own pain management approach and strategies.

Spasm

Spasm started on the left side of the body 3 days after the biopsy operation [04] and later extended to the right side [28]. Sometimes, gentle and quiet; sometimes, strong and violent. As if manipulated by an invisible puppeteer [06], who likes to play tricks on me! [14, 22, 28]

Disability

I had to spend nearly 3 months in rehabilitation. Somehow, I couldn’t get into the spinal injury department. I was transferred from the surgery ward in the hospital I walked in to a rehab-geriatric ward in another hospital, from which I wheeled home [02]. There, the rehabilitation specialist, physiotherapists, occupational therapists, and social worker  didn’t believe that I would ever stand or walk again and therefore had only the sole aim of training me to lead my life as a ‘competent disabled’, using my hands to wheel myself around and to lift and move my body in self transfers [22] between wheelchair and bed, toilet, shower commode, or another seat (if safe).

I proved them wrong! However,  ….

Managing My Chronic Neuropathic Pain, Disability, Spasm, Illness, Social Isolation.

Not only do I have to cope with and manage my chronic neuropathic pain, spasm and illness, but I also have to live my remaining life as a disabled in a house not built for a wheelchair user [18]. The permanent loss of the freedom of mobility is a great physical inconvenience in a world exclusively designed and built predominantly for walkers. Greater still is the psychological loss of independence: having to depend on carers and helpers for essential assistance, resulting in the loss of privacy.

Chronic neuropathic pain, spasm, illness, disability, dependence, old age: all add up together equals to social isolation. [11, 30.2, 31]

Facing all my difficulties, problems, challenges up front [35, 36], I have developed, over the years, practices and strategies to cope with my multiple impediment, but it doesn’t get any easier as I age.

Sharing and Exchanging

I now share these practices and strategies here with fellow wheelchair users, chronic neuropathic pain sufferers, care providers, healthcare practitioners, pain management professionals and practitioners, physiotherapists, other medical professionals, and anyone interested in knowing how one person manages her chronic pain, disability, illness, and her unexpectedly, permanently changed lifestyle.

Your feedback, comments, exchanges will be most welcome.

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NEXT POST:  Last Walks, Oct 31, 2018
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Hawaii Volcanoes National Park, USA, new lava flow near the Royal Gardens subdivision. by Brian W. Schaller, 2007.  This work is licensed under the Creative Commons ‘Attribution-NonCommercial-ShareAlike 3.0’ License: https://creativecommons.org/licenses/by-nc-sa/3.0/, at https://commons.wikimedia.org/wiki/File:A204,_Hawaii_Volcanoes_National_Park,_USA,_new_lava_flow,_2007.JPG

Trail on a mountain, France. By Tiia Monto, 2015. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Mountain_trail_in_France.jpg 

Hiking trail Knight’ Path over the Czantoria Wielka, by Pudelek (Marcin Szala), 2014. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. File:Slezské Beskydy – Rytířská stezka (cesta Nýdek – Velká Čantoryje).JPG , at   https://commons.wikimedia.org/wiki/File:Slezsk%C3%A9_Beskydy_-_Ryt%C3%AD%C5%99sk%C3%A1_stezka_(cesta_N%C3%BDdek_-_Velk%C3%A1_%C4%8Cantoryje).JPG


 

37. Managing My Chronic Pain

Dear Followers, Supporters, Visitors, Viewers, Family, and Friends,

Thank you for your support and interest in my work and your comments.

I am back after a long break to do something else, to enrich myself, to contemplate. I now feel that to withhold beneficial knowledge and insight and to safeguard my story as ‘privacy’ is an act of selfishness; and that to share them with the aim of benefiting others is an act of altruism.

Having posted more than 35 poems describing my chronic neuropathic pain, spasm, disability, and illness, I will now be writing mainly in prose with some poems inserted and in between:

To tell my story on how in a very hot summer day in 2004, I suddenly ended up in a wheelchair with chronic neuropathic pain and an irreversible lifestyle for the rest of my life.

To describe how I manage my chronic neuropathic pain, spasm, disability, and illness and my irreversible lifestyle in the past 13 years.

To describe how I deal and cope with the difficulties and challenges I face.

To share the knowledge and strategies I have gained and developed from my experience, with the humble hope that fellow sufferers, their families and carers, health care providers, and medical professionals will find them useful and helpful.

Would love to receive your feedback, comments, suggestions.

I look forward to your continued support.

KK Loke

https://commons.wikimedia.org/wiki/File:Rayon_de_soleil_et_hirondelle_2.jpg

 

 

 

 

 

 

 

 


Sunset over the Vercors mountains, seen from Grenoble (+ a swift passing by).
This photo was taken by Eusebius (Guillaume Piolle). © Guillaume Piolle / CC BY 3.0.   https://commons.wikimedia.org/wiki/File:Rayon_de_soleil_et_hirondelle_2.jpg


 

28. Spasm: The Invisible Puppeteer’s Tricks (3): While I am Lying in Bed

1998-10-tema-canoe

28.1     Shallow Canoe  

After prolonged sitting,
my toes become firmly gripped,
feet, tightly bound and cold;
legs, pricked by warm thorns;
thighs, sitting on warm coarse sand;
buttocks, drilled with screws,
forcing me to lie down in bed.

The Invisible Puppeteer
pulls my toes up,
curling them forward and backward;
lifts my feet up and down,
twisting them left and right;
bends my knees up,
and then drops them abruptly.
He lifts my head up from the neck
and drops it back onto the pillow—
the neck and shoulders stiffen.

Suddenly,
he pulls my head and toes up simultaneously,
curving my whole body up tensely,BirchBarkCanoe
making it into a shallow canoe.
Nerves keelhauled:
a flash of tight, cutting pain
travelling like lightning,
from neck to toes,
along the whole spine.

A few quick jerks—
for just a few seconds .
Then he loosens the pull—
the body relaxes
through my legs;
my feet uncurl;
my right foot is quiet.

Is the Invisible Puppeteer trying
to make a Pinocchio of me?
Or is he helping me
to loosen up my tense nerves?

.
28.2   Rope Unwinding Itself

The invisible puppeteer dislikes me
sleeping on my right side,
when my right leg is bent
underneath a memory foam cushion
weighed down by my left leg.

He pulls the leg under the cushion,
releasing it from stiffness.
He jerks the leg on the cushion,
straightening it.

He twitches my body tenderly,
re-positioning my spine.

Ever so gently,
he aligns my neck and my spine;
adjusts my shoulders,
loosening them up.Yarn_hank_and_ball

My whole body relaxes,
uncurling
like a coil of rope
slowly unwinding itself.

Is the Invisible Puppeteer trying
to loosen up my knotted nerves,
helping my body to self-regulate?

.

The Invisible Puppeteer’s useful tricks.


A Tema-Canoe at  Anima Nipissing Lake – Temagami, Ontario, Canada.
By Robertbody at English Wikipedia. CC By 3.0 Unpoprted License. via-
https://commons.wikimedia.org/wiki/Category:Canoes#/media/File:1998-10-tema-canoe.jpg

A Birch Bark Canoe. By Zeljko at Croatian Wikipedia. In public domain. via-   https://commons.wikimedia.org/wiki/Category:Birch_bark_canoes#/media/File:BirchBarkCanoe.jpg

A Yarn Hank and Yarn Ball. By Willow W.  CC BY 3.0 Unported License. via- https://commons.wikimedia.org/wiki/Category:Wool_yarn#/media/File:Yarn_hank_and_ball.png


 

24. Neuropathic Pain: Wires Cutting Deeply

1280px-Barbed_tape_on_the_Golden_Gate_bridge_in_San_Francisco_136

 

 

 

 

.

Sharp wires strangle my right ankle,
hack deep into fine bone.
Constant pain keeps me awake

A thin, burning wire slices
my right bony sole into two.
Burning pain echoes up the whole leg.

A strong wire pulls the big toe
down towards the sole.
Sharp pain and spasm all the way up the spine.

A fine, tense, rigid wire
deeply and tightly engraves, with fire,
my lower chest wall and across the back.

A slight movement of arms or torso
drives the wires deeper,
tightening the cut further.

Deep cutting wires:
the neurosurgeon’s sharp knives.
Difficult to breathe.

Lying still in bed,
breathing deeply and slowly:
in and out,  in  and  out  ,   in   and   out…..

Chanting:
om mani padme hum ….
om mani padme hum ….

Falling asleep:
descending into peace.
Damaged nerves reconnect, regenerate.

.

Tree_in_field_during_extreme_cold_with_frozen_fog

 

 

 

 

 

 

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.

“BarbedTape1” Photo by Tom Oates. Licensed under CC BY-SA 3.0 via Wikimedia Commons –https://commons.wikimedia.org/wiki/File:BarbedTape1.JPG#/media/File:BarbedTape1.JPG

“Tree in field during extreme cold with frozen fog” Photo by Ian Furst – Own work. Licensed under CC BY-SA 3.0 via Wikimedia Commons – https://commons.wikimedia.org/wiki/
File:Tree_in_field_during_extreme_cold_with_frozen_fog.png#/media/
File:Tree_in_field_during_extreme_cold_with_frozen_fog.png

.


 

22. Spasm: The Invisible Puppeteer’s Tricks (2): During My Self-Transfer

.

22.1    Hip Swinging Dance

My self-transfer from manual wheelchair to bed
is like performing a stationary
bouncing and hip swinging dance.

Wheelchair closest to bed.
Right wheel diagonally to mattress.601_19_ ff_till_sang_mediumplus
Feet firmly on the floor.
Right hand gripping onto mattress edge.
Left fist on wheelchair seat cushion.

Leaning my upper body forward,
I lift up my buttocks
from the cushioned wheelchair seat,
just in front of the wheel,Transfer_wheelchair
to swing them towards the mattress.

Suddenly,
before my transfer is completed,
he stiffens my right leg,
and throws my left leg up,
nearly ejecting me out of the wheelchair.

My hip swinging dance
has become a front kick dance.

Has he become impatient or aggressive?
Or is he helping me to dance?

.

22.2  Monkey Bars of Different Heights 

My toilet to wheelchair self-transfersMpppTrnsfrPersptv2 Step 1 (2)
is going uphill sideways.

Wheelchair besides toilet bowl.
Right hand on handrail on the wall.
Left hand on wheel and rim.
Feet firmly on the floor
between wheelchair and toilet bowl.

I lift my buttocks off the soft, padded toilet seat,
move them over the wheel,
aiming at the lined wheelchair seat.

Suddenly,Japanesehighschoolgirlonmonkeybars-dec19-2014
he straightens my lifeless legs,
glides the heels forward on the floor,
leaving my long arms
hanging on monkey bars of different heights.
He nearly glides my body
down onto the floor
in front of the toilet bowl.

Is he trying to make me perform
some tricky hip hop dance?

.
The Invisible Puppeteer’s unpredictable tricks.

.


.

Wheelchair to Bed Transfer. Picture taken, with permission, from
http://www.spinalistips.se/tips-transfer-from-wheelchair-to-bed-en-601.html

Wheelchair to Bed Transfer. Picture is ‘developed by the University of Washington Center for Technology and Disability Studies and reproduced here with their permission’, taken from
http://www.msktc.org/sci/factsheets/safe-transfer-technique

Wheelchair beside Toilet. Picture by K A Tan of Penang, Malaysia,
copyright free, taken from his Blog at
http://wapenang.blogspot.com.au/2012/03/how-to-design-toilet-wc-for-disabled.html

A Girl on Monkey Bars. Photo by Nesnad.
Creative Commons Attribution-Share Alike 4.0 International, 3.0 Unported, 2.5 Generic, 2.0 Generic and 1.0 Generic license. via-http://commons.wikimedia.org/wiki/File:Japanesehighschoolgirlonmonkeybars-dec19-2014.jpg

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17. Spasm: Waves of Pain on Left Side of Body

.

428px-The_big_one_(161967995)

.

Waves of severe pain surge
from foot up to shoulder
along the left edge of body.

Waves of raging pain gush
from toes up along calf,
ebbing underneath the knee.

Waves of gnawing pain crawl
from knee up along the thigh,
lodging at the buttock.

Waves of nagging pain run
from elbow up along the arm,
fading before the shoulder.

Flow and ebb. Ebb and flow.

Breathe  in  ;   breathe  out  .
Breathe    in    ;    breathe    out    .

.

 Porto_Covo_December_2014-4

 

 

 

 

 

.


.

Waves crashing at Red Sand Beach, Hana, Maui (Hawaii).
Photo by Angela Sevin from SF Bay Area, US. CC A 2.0 Generic License, via –
http://commons.wikimedia.org/wiki/File:The_big_one_(161967995).jpg

Surfs at Sunset. Porto_Covo. Portugak.  Photo by Alvesgaspar.
CC AS-A 4.0 International License, via –
http://commons.wikimedia.org/wiki/File:Porto_Covo_December_2014-4.jpg

 .


15. Neuropathic Pain in My Feet (1): Burning, Tightly Bound

.

15.1  Burning Feet524px-Brita_kettle

My red swollen feet burn
like the heating coil
inside a boiling kettle,
building up heat,
till the heels jerk
with cutting pain!

 .


.

15.2  Tightly Wrapped Foot

My left foot is like a rice dumpling
tightly wrapped with bamboo leaves
and tied with a strong string
cutting deep
into 
my skin, soft sole, and bone.

It burns like a swollen, cooked, dumpling
with the rice and beans inside
wanting to burst through the bamboo leaves.

Trying to loosen up the strings
the foot protests in spasm.

 .1024px-RiceDumpling

.


15.3  Bound feet

My feet are very tightly bound
with long cloth laced with warm coarse sand:
Burning inside and outside,
yet numb to touch on the surface.

Was that how my ancient sisters felt
in their little, forcibly bound feet?

 .

Die_verkruppeltenFusse_einer_vornehmenChinesin

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.

 15. 4  Beautiful Feet

Ah!
How beautiful my feet are this morning!
Not patchy
No botchy redness
No fluid retention
Wrinkled toes
Flat and skinny with
clearly visible veins and arches.
Like they used to be not long ago.
Where are my beautiful, slim-line Italian shoes?

 .high-heels-606308_640

.



An Electric Kettle in Use. Photo by Lee J. Hayward. In public Domain, via-http://commons.wikimedia.org/wiki/File:Brita_kettle.jpg

Bamboo Leaf Rice Dumplings. Zongzi.  Photo by Koika.
CC AS-A 3.0 Unportes License, via –
http://commons.wikimedia.org/wiki/Category:Zongzi#mediaviewer/File:RiceDumpling.JPG

Bound Feet of a Chinese Lady (Die verkrüppelten Füße einer vornehmen Chinesin. (1911). Photo by Albert Friedenthal. In public domain, via –
http://commons.wikimedia.org/wiki/Category:Foot_binding#mediaviewer/
File:Die_verkruppeltenFusse_einer_vornehmenChinesin.jpg

A Slim-Line Shoe. Photo by JHCompany. CC0 Public Domain License, via –
http://pixabay.com/en/high-heels-shoe-women-s-shoes-606308/


14. Spasm: The Invisible Puppeteer’s Tricks (1): While I am Sitting in my Wheelchair — Drumming, Bending, Swinging, Undulating

120px-Ssantanandorra_(6), Phot by Rivernavigatoro .

14.1  Snare Drum Rhythm

While I am sitting in my wheelchair,
The Invisible Puppeteer turns my feet into sticks, drums them alternately on my footplate,
like the slow snare drum rhythm of Ravel’s Bolero.

Sometimes, he turns my feet into mallets,
to beat heavily on the footplate.
Or even violently:
an avant-garde leg thrown up and
dropped off the footplate.

Sometimes, bending my knees,
he jerks the whole leg up
to nearly throw me forward
off the wheelchair.

The Invisible Puppeteer’s usual tricks .


.

14.2  Vertical Pendulum

Pendulum_animation

In my shower commode I sit for a morning shower.
He bends my left leg forward and backward,
turning it into a vertical pendulum.
The big toe bob hits the tiled wall in front, repeatedly, uncontrollably.
Its nail becomes black and wrinkled,
gradually, unsuspectingly.

At the edge of the soft latex mattress I sit
with legs down against the side.
Suddenly, he straightens my right leg up,
then drops it back,
rapidly, repeatedly,
to perform a sitting cancan dance.
It only stops with my intervention;
and then to start all over again.

The Invisible Puppeteer’s playful tricks .


.

14.3  Rope Suspension Bridge

Very slowly and gently,
but irritatingly persistently,
the whole day long:

he lifts the right buttock up and drops it;
then flaps the thigh up and down,
turning it into a rope bridge
suspended over a river:
swinging, undulating,
trying to settle, slowly,
like an over-stretched rope
taking its time to unwind.

The Invisible Puppeteer’s new tricks .

800px-The_rope_bridge_at_Carrick-a-Rede

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Snare Drum and Sticks. Photo by Rivernavigator.
CC AS-A 3.0 Unported License, via – http://commons.wikimedia.org/wiki/Category:Rod-tensioned_snare_drums#mediaviewer/File:Ssantanandorra_(6).jpg

Pendulum Animation   Author: hubert.christiaen at telenet dot be.
CC AS-A 1.0 Generic License, via – http://commons.wikimedia.org/wiki/File:Pendulum_animation.gif

The Carrick-a-Rede Rope Bridge, a rope suspension bridge near Ballintoy, County Antrim, Northern, Ireland. Photo by Shiraz Chakara.
CC AS-A 2.0 Generic License, via – http://commons.wikimedia.org/wiki/File:The_rope_bridge_at_Carrick-a-Rede.jpg



12. Neuropathic Pain and Spasm in My Legs: Electric Shock

My wheelchair has become an electric chair.640px-Lightning_hits_tree, http://commons.wikimedia.org/wiki/File:Lightning_hits_tree.jpg
Wires crisscross my body,
charged with a low current,
slowly extend and expand,
like surging waves,
from the feet upwards
to the calves, the thighs,
and finally the buttocks.

Suddenly,
my toes are hit
with a short, sharp electric shock.
My legs jerk violently outward,
then tap on the footplates
at regular executions.
.

 


Lightning Hits Tree. Photo by Johnny Autery. Image in Public Domain, 
http://commons.wikimedia.org/wiki/File:Lightning_hits_tree.jpg


06. Spasm: The Invisible Puppeteer; 05. A Marionette

06. Invisible Puppeteer

duvet vibrates
bed rattles against bed board
oh! here he is again
pulling and jerking my legs
The Invisible Puppeteer
.

(Published in Eucalypt, A Tanka JournalNo. 10, May 2011, p. 21)
.

05. Marionette

.

(a)

A marionette
I have become, overnight
Strings attached to
Head, shoulders, hands, knees and toes
For the invisible hands

.

nepal-400_1280, http://pixabay.com/en/nepal-dolls-figures-colorful-400/

(b)

a marionette
strings tied from head to toes for
invisible hands

.

.



Nepalese Puppets. Photo by Simon Steinberger from Ulm. Deutschland.
CC0 License Public Domain.
Photo from: http://pixabay.com/en/nepal-dolls-figures-colorful-400/



04. Sudden Onset of Spasm

 

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File:2003-06-14_Scanned_kitten.jpg

Three days since the biopsy surgery,
when my left leg jerks
suddenly,
up and down on the mattress.

.
The right leg still lies
limply
like a dead log
rotting into the forest floor.

 .

Decaying beech log in Marselisborg Forests, Denmark.

 

 

 

 

 

.


.
Scanned Kitten
– Sleeping with one leg up. Image from Art-top (Artem Topchily).
CC AS-A 3.0 Unported License
http://commons.wikimedia.org/wiki/File:2003-06-14_Scanned_kitten.jpg

Decaying Log. Decaying beech log in Marselisborg Forests, Denmark.
Photo by RhinoMind. CC AS-A 3.0 Unported License..
http://commons.wikimedia.org/wiki/File:Decaying_log.jpg.

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