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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41. Chronic Neuropathic Pain (2): “You just learn to Ignore it”

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

In 2004, after that fateful ‘simple’ biopsy operation on my spinal cord tumour, I spent three months in a rehab-geriatrist ward to learn to be a wheelchair user. There was another ‘long stay’ patient in the surgery ward: a young woman, who had a young daughter, was lying on her stomach on a special self-propelled bench/bed with wheels for her to wheel herself around — a kind of ‘stretched’ wheelchair, like a stretched limousine. She was waiting for an open wound in one of her buttocks to heal. She frequently came into the exercise clinic to receive heat and other treatment to relieve the tense muscles around her neck and shoulders. We gradually got to talk to each other and visited each other in our respective room. One day we had the following conversation.

‘How long have you been in a wheelchair?’
‘Fourteen years.’
‘Do you have pain’
‘Yes, of course.’
‘What’s it like?’
‘Exploding, burning, stabbing, electric shock, and more.’
‘That’s what I have too! Will it ever go away?’
‘No, never! It is chronic! From spinal cord injury.’
‘How do you cope with such constant, excruciating pain?’
‘You just learn to ignore it.’
‘How is it possible at all? The pain is always there!’
‘Yes, it is possible, given the time.’
‘But how?’
‘You will learn to do that.’ .

 

 

 

 

.

It was totally beyond my belief, understanding, and imagination! How is it possible at all to ignore such constantly present, often excruciating, strange sensations in the legs I can no longer move, in the thighs and buttocks that are always in contact with a seat cushion or a mattress, and in the feet that are always firmly placed on the footplate of the wheelchair? There is no practical way to free the painful parts from those contact surfaces unless I could fly up to float weightlessly in a vacuum. [32]

How is it possible at all not to feel all the soundless and invisible crackling, crunching, stabbing, pricking, drilling, pulsating, burning, freezing sensations that are constantly going on from my lower chest wall down to my toes! [03]  How is it possible not to feel the hypersensitive pain in my right leg when it is touched even most gently? [03]

The pain is there all the time, in whatever position and posture I am in, whether sitting up or lying down in bed, lying on the side or on my back. It is present in whatever I do: eating, showering, talking on the phone, talking to visitors or nurses or the doctor, and repeating the same monotonous arm exercises.

To ignore chronic pain is to ‘intentionally disregard it, that is, to consciously pay no attention to it, not admitting it, not acknowledging its presence or existence. Such a conscious effort may involve denying it, resisting it, fighting against it. My past experience with migraine attacks for nearly 35 years has taught me that the harder I tried to ignore it, to resist it, to fight against it, or to try to stop it, the more intense and debilitating the pain would become, often turning me into a highly stressed, totally helpless, and temporarily incapacitated being!

I didn’t think I could ever manage to intentionally, consciously ignore the ever-present pain. I am always aware of its persistent physical presence and can always feel it. Most of the time, I simply just continue doing whatever I am doing or have to do, amid the pain, despite the pain. It is likely that I simply just take it as background noises like the background music in the shopping centre or sounds and noises outside the house. Sometimes, I am so involved and engrossed in the activity that I temporarily forget about it, not feeling it for a while. However, as soon as my concentration goes, I can feel the pain again straight away. Sometimes, the pain is so acute that I simply can’t do anything at all!

The activity I get myself involved in usually serves to distract myself from pain temporarily, such as solving the seemingly endless pain- and disability-related problems, managing my irreversibly changed life, doing simple housework like laundry and simple cooking, conversing with someone on the phone, reading and answering e-mail, learning something new, doing something creative, searching and researching on-line, reading a book, writing about my experience, listening to music, attending a public talk or a play or an opera or a concert, watching television, listening to the radio, looking at the garden, listening to the birds, listening to the wind or the falling rain, watching the clouds in the sky, watching sunrise in front of my east-facing house, exercising, practicing deep breathing, meditating, reciting mantras.

Perhaps, what actually happens is that, over time, I have progressively got used to my chronic pain lurking in the background, and often continued to work through it, if it is not too severe. Consequently, I must have developed a greater tolerance to the persistent pain.

My overall approach is to have the attitude of facing the pain upfront, embracing it, focusing on it, sinking into it, analysing it, understanding it, knowing it, describing it in detail, metaphorising it [36], so as to identify, differentiate, categorise the types of pain in terms of their locations, patterns, frequency, intensity; and working out the triggers so as to prevent further flare-ups.

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NEXT POST: REACTIONS TO PAINKILLERS, DEC 16, 2018
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Abstract Photography 14, by Mostafameraji, own work, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:Abstract_photography_%D8%B9%DA%A9%D8%A7%D8%B3%DB%8C_%D8%A7%D9%86%D8%AA%D8%B2%D8%A7%D8%B9%DB%8C_14.jpg

Abstract Photography 06, by Mostafameraji, own work, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:Abstract_photography_%D8%B9%DA%A9%D8%A7%D8%B3%DB%8C_%D8%A7%D9%86%D8%AA%D8%B2%D8%A7%D8%B9%DB%8C_06.jpg

Infrared of the Galaxy Sky. 2003. By 2MASS/T. H. Jarrett, J. Carpenter, & R. Hurt.  http://www.ipac.caltech.edu/2mass/gallery/showcase/allsky_gal_col/index.html.
Copyright notice: http://www.ipac.caltech.edu/2mass/gallery/showcase/copyright.html
This file is in the public domain in the United States because it was solely created by NASA. NASA copyright policy states that “NASA material is not protected by copyright unless noted“. At https://commons.wikimedia.org/wiki/File:Galaxies_of_the_Infrared_Sky_.jpg

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40. Chronic Neuropathic Pain (1): Sudden Onset

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

On that fateful summer day in 2004, many hours after the biopsy operation on my spinal cord tumour [01], I first woke from anaesthetics in the evening but only briefly; still sleepy. Vaguely, I noticed my younger sister and my two friends standing at the end of the bed but I could hardly breathe or talk. In my half asleep state, I felt tightness around my lower chest wall, especially on the left, as if someone had wrapped it around with a heavy metal band.

            A Tight Band Around Lower Chest Wall

     Ouch…..!  Ouch….!
     Where has this broad metal band come from —
     Wrapping tightly around my lower chest wall, tying me to the bed?                 
     Who has put it there? Why?                             
     To stop me moving?
     To stop me breathing?
     To stop me speaking?
     Please remove it!
     Please let me breathe!
     Please let me sleep!

I fell asleep after speaking to my sister and two friends, with difficulty and only briefly. As I was falling asleep, I felt my legs becoming heavier and heavier. I was later woken by a nurse (M) who apparently had been turning me every hour or so while I slept. Later in the night, I told him that I could not move my legs; I could not feel my left leg; but my right leg was very painful. He told me that he would report it to the neurosurgeon. Later, another nurse (senior) came in to give me, or to increase the dosage of the intravenous desthemetisone (an anti-swelling steroid), and she told me about it. I asked for the time; it was about 10 p.m. I continued to sleep and felt being turned over a few times throughout the night.

When I finally woke up fully, it must be morning: there was bright sunlight outside the window and I heard trolleys being pushed along the corridor.  I found myself in a single room (in a surgical ward), facing a blank wall with no clock. I still felt a tight painful grip around my lower chest wall.  When I tried to turn to lie on my left to relieve the acute pain in the right buttock, I noticed my lower body did not move! I still could not move my legs!  When I touched my left leg, I could not feel anything! In sharp contrast, when I touched my right leg, I felt such  excruciating pain!  All my right side, from both the lower chest wall and lower back down to the toes was extremely hypersensitive to touch! 

          My Legs: Identical Twins No More [03]

     Drastically, overnight,
     my two legs have stopped being identical twins.
     They have stopped talking to each other.
     Right leg extremely hypersensitive to touch:
          millions of sharp needles
          pricking at my sensitive nerves.
     Left leg completely numb to touch.

In addition,I felt severe pains and strange sensations in my whole lower body that I had never experienced before: there were ‘constant activities’ inside both legs and buttocks: 

      Soundless and Invisible Fire Crackers  [07]

     Many long strings of fire crackers
     bursting and burning
     rapidly but incessantly
     up and down, inside my legs,
     from toes to buttocks,
     making crackling sounds
          I cannot hear;
     giving out hot bright sparks
          I cannot see.

I treated these completely unusual pains and symptoms as post-operative and believed that they were only temporary. I remembered back in 1989, a right-knee arthroscopy left me with temporary discomfort in my right leg for about a week, especially my calf: stiff, heavy, as if I had been standing on my feet from morning to night without resting, which were relieved by gliding the knee up and down while in lying or sitting position. However, these pains and sensations I was experiencing now were completely different.

I would never have imagined that these conditions would be permanent, and that I would become a permanent wheelchair user and a permanent sufferer of chronic, acute neuropathic pain for the rest of my life, as a result of a ‘simple’ biopsy operation on my spinal cord tumour [01], performed by an eager neurosurgeon. 

     Sudden Onset of Chronic Neuropathic Pain
                    (posted on Jan 7, 2015 [03])

    Many long hours after the biopsy surgery,
I wake from anaesthetics—
my entire body wrapped in strange new pain:        

    A tight broad metal band
corsets my lower chest wall—
I can hardly breathe;

    My lower body crackles, crunches
and bursts with sensation—
if only I could stop them.

    My two legs have stopped being identical twins:
right leg is hypersensitive to the gentlest touch;
the left is completely numb.
.

 

 

 

 

.
.

A sudden onset of permanent disability [02] and chronic neuropathic pain [03], and an irreversibly changed life style imposed on me [38], putting an abrupt end to my academic career [39]. Such multiple destruction and suffering for nearly 15 years now after a ‘simple’ biopsy operation! What happened in the operation?  Hopefully, it has never happened and will never happen to anyone else.
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NEXT  POST:  CHRONIC NEUROPATHIC PAIN (2),  NOV 30, 2018
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Jacek_Malczewski_-_Rekonwalescentka.jpg ‎(800 × 600 pixels, file size: 162 KB, MIME type: image/jpeg) (Jacek Malczewski – Convalescent Woman (1882)), posted by Ablakok, 2017. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At  https://commons.wikimedia.org/wiki/File:Jacek_Malczewski_-_Rekonwalescentka.jpg

An example of a person in Pinel restraints, by James Heilman, MD, 2017.This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:PinelRestaint.jpg

Firecrackers in action in Chinese New Year celebration. Photo by Dr. LEE Sao Bing, who is the Medical Director and Principal Surgeon of Shinagawa LASIK & Eye Centre, Singapore. Photo taken from his personal blog at:  https://drleesb.wordpress.com/2012/01/24/firecrackers-new-year/

Bonfire. Photo from English Wikipedia, 8 September 2004 by Fir0002. This file is liscensed under CC AS-A 3.0Unported License.  At http://commons.wikimedia.org/wiki/File:Bonfire4.jpg

Feux d’artifices rouges, 2008.  Author unknown.  Source:  http://www.photos-libres-de-droits-gratuites.com/photos/Artifices/feux-artifices-pldg007.jpg .  This file is licensed under the Creative Commons Attribution-Share Alike 2.0 France license. At  https://commons.wikimedia.org/wiki/File:Feux-artifices.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


 

36. Metaphorising My Pain


 

Reproduced from Pulse – Voices from the heart of medicine (publishing personal accounts of illness and healing, fostering the humanistic practice of medicine, and encouraging healthcare advocacy), in their monthly More Voices series (short nonfiction prose pieces of 40 to 400 words on a healthcare theme): “In Pain”  theme in October, 2017, on Oct. 24, 2017. [The editor has made minimal stylistic changes.]
https://pulsevoices.org/index.php/pulse-more-voices/in-pain/1175-metaphorizing-my-pain

This is more or less a brief summary of some of the 35 posted poems about my chronic neuropathic pain, illness, disability, spasm. The numbers in square brackets refer to the relevant metaphors used in the poems posted, listed on the right on the Home/Archive page.


 

 

 

 

Metaphorizing My Pain
 | 

My chronic neuropathic pain [03] is a physical reality, not a product of my imagination. It is the result of a spinal injury sustained during a “simple biopsy” [02] of a spinal cord tumor [01] detected through an MRI. The operation was performed by an eager neurosurgeon in 2004 [02]. When I woke from the anesthesia, I could hardly breathe [03]; I felt like a tight band was around my lower chest wall [03]. I also couldn’t move my legs [02, 05, 09], and they were extremely sensitive to touch [03]. Since then, the pain has expanded and intensified [12, 13,15, 17, 20, 21, 23, 25, 26, 33, 34, 35].

A typical dreadful day starts when I am woken up by pain all over my body [20, 23, 25]. Hot, coarse sand grains are pulsating inside my calves and thighs [03, 07, 08]; fine nails are drilling into my feet and buttocks [16]; sharp knives are plunging into my back [19.1]; needles are pricking my chest [19.2]; mallets are pounding incessantly on my arms; warm, fine sand grains are swimming inside my palms and puffed-up fingers!

It was another night with bad sleeping posture. My back must have glided off the three standing pillows propping up my back, curving my spine into a bow and pressing part of it against the air-filled pressure-reduction mattress, igniting pain all over my body. My head must have dropped forward off the pillow, compressing my cervical nerves and kindling pain in my arms and fingers.

By the time I finish my four-hour morning routine of sitting up, lying down, being hoisted onto a shower commode to toilet and shower, being hoisted back into bed, being turned left and right several times for grooming, and finally being hoisted down into my motorized wheelchair for the day, I am usually in agonizing pain. My feet feel like they’re on a tray of warm stones [08]. My calves seem to be wrapped with coarse sandpaper [08, 34]. The small, air-filled cells of my Roho cushion are pebbles under my buttocks [08]. My backrest is a stone-studded board [08].

The escalation continues with increasing power over the next 24 hours and beyond. No escape! [29] Except meeting the pain upfront. Just sit upright, keep my spine straight, sit still, breathe in and out very slowly [19.2, 20, 24, 33], guide the qi to the pain areas, be mindful of it [33]: I sink into the pain–identifying it, recognizing it, analyzing its nature, quality, patterns, locations, and triggers, so that I can learn to prevent it from spiraling into another almost unbearable episode [34].

Kit Loke
Brisbane, Queensland, Australia


Marine fog rolls in Half Moon Bay, California. By Jacek Walicki (edited by Chalger).
This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. At https://commons.wikimedia.org/wiki/File:Marine_Fog_Pattern_1_crop.jpg

Lake Cerknica, by why 137 from Trieste, Italy, Uploaded by Sporti.
This file is licensed under the Creative Commons Attribution 2.0 Generic license.  At https://commons.wikimedia.org/wiki/File:Lake_Ceknica_2013_(8568169722).jpg


35. Pain is Physical; Suffering is Mental.


Reproduced from Prologue, first posted on Jan. 3, 2015.


 

Pain

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Photo by Daphne Zaras http://en.wikipedia.org/wiki/Tornado#mediaviewer/File:Dszpics1.jpg

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CSIRO_ScienceImage_10413_Project_Vesta_fire
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Like tornadoes, earthquakes, tsunamis,
acute pain can devastate in an instant.
Like the reign of a cyclone or volcanic eruption,
pain is unbearable in its duration.
.

Chronic pain persists like a bushfire,
blizzard, flood, drought or heat wave:
excruciating, depleting, extensive,
destructive.
.

Chronic neuropathic pain, with its multiple symptoms,
is complex megadisaster: earthquake, tsunami, and nuclear blast;
or supercell thunderstorm with hail, lightning, cyclonic wind, and flood;
or volcanic eruption, with fire, lava flow and permanent damage.
.

However widespread the disaster,
we overcome and recover.
Pain is physical; suffering is mental.
Suffering is just the sky’s dry argument.
We do not let pain become suffering:
we triumph.
.
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CSIRO_ScienceImage_10409_Eucalypt_regrowth_after_Black_Saturday_bushfires

Eucalypt Regrowth after Black Saturday Bushfires



Tornado, Photo by Daphne zaras, in public domain. http://en.wikipedia.org/wiki/Tornado#mediaviewer/File:Dszpics1.jpg.
http://en.wikipedia.org/wiki/File:Dszpics1.jpg

Bush Fire. By CSIRO Australia.  CCA 3.0 Unported license.
http://commons.wikimedia.org/wiki/File:CSIRO_ScienceImage_10413_Project_Vesta_fire.jpg

Eucalypt Regrowth After Black Saturday Bushfires.
Photo by Robert Kerton, CSIRO, Australia.  CC0 AS-A 3.0 Unported License.     http://commons.wikimedia.org/wiki/File:CSIRO_ScienceImage_10409_Eucalypt_regrowth_after_Black_Saturday_bushfires.jpg

34. Neuropathic Pain and Disability: As If Constantly

As if constantly,
my immobile lower body is internally alive with continuously bursting fire crackers;
my tightly bound, pulsating feet are resting on a footplate paved with warm gravels;
my whole legs are firmly wrapped with fabrics laced with angular beads;
.

As if constantly,
I sit on a chair cushion filled with pebbles;
I lean my back on a backrest studded with glass marbles;
I rest my arms on armrests made of warm pellets;
I hold my shoulders up against a heavy yoke;
I lie on a bare rope-bed full of big knots;
.

As if constantly, I am being
punished for a crime I have never committed;
pushed into a battle against an enemy I have never made;
forced to face a challenge I have never encountered;
.

So that I may rise to the challenge, Aurora_Borealis_Over_Mount_Fellows_(7957742884)
to transcend my pain,
to achieve triumph:
triumph over chronic neuropathic pain.

       













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Aurora Borealis over Mt Fellows. By Denali National Park and Preserve. Licensed under the Creative Commons Attribution 2.0 Generic license. via –https://commons.wikimedia.org/wiki/Aurora#/
media/
File:Aurora_Borealis_Over_Mount_Fellows_(7957742884).jpg

 



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25. Chronic Neuropathic Pain Flare-Up (2): Fire Ants Attack


[‘Fire Ants Attack’ was published in Wordgathering,
A Journal of Disability Poetry and LiteratureVolume 9, Issue 3,
on September 11, 2015, at http://www.wordgathering.com/issue35/poetry/loke.html ]


Fire_ants_4 (1)

 

Fire_ants_2

 

 

 

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Here it comes:
ten contingents of thousands of fire ants
march up my toe cliffs and ridges, foot slopes and arcs.
In formation,
they hook their mandibles into thin flesh;
inject venom with their stingers,
setting my sensitive nerves on fire.
.

Their fire spreads up the hills of my calves,
down through knee valleys and thigh plateaus,
until it reaches the buttocks mounts.2013_bushfire_tasmania_0002
There the fire ants build their fire mounds
that burn throughout day and night.
Sometimes, the fire leaps its walls and
spreads up into the plains of my back,
burning into shoulder blades, and onwards.
.

Nothing can stop their march,
not even a change of posture;
even the famous pain fighters
have all lost their battles.
.

Only when they are satisfied, do
the fire ant troops retreat,
sometimes slowly, backing down;
sometimes suddenly, disappearing overnight.
.

800px-Fire_ant_queens_3589

 

 

 

 

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The caves, plains, mounts, plateaus, valleys, ridges, and cliffs –
all peaceful
.

Alas! It’s only a Trojan celebration:
the fire ant soldiers have left their wooden horse behind;
the next attack is a sunrise away
and twice as ferocious.

800px-Fire_Ants_on_water

 

 

 

 

 

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Fire Ants. By Mokkie. CC A-S A 3.00 Unported license. via-
https://commons.wikimedia.org/wiki/File:Fire_ants_2.jpg

Bushfire, Tasmania, 2013. By Toni Fish. CCA 2.0 Generic license. via-
https://upload.wikimedia.org/wikipedia/commons/5/58/2013_bushfire_tasmania_0002.jpg

Fire Ant Queens Ready for Flight. By Lamiot. CC A-S A 3.0 Unported license. via-
https://commons.wikimedia.org/wiki/File:Fire_ant_queens_3589.jpg

Fire Ants on Water.  By Turnbull FL.  CC A-S A 3.0 Unported license. via-
https://commons.wikimedia.org/wiki/File:Fire_Ants_on_water.jpg


 

03. Sudden Onset of Chronic Neuropathic Pain

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Many long hours after the biopsy surgery,
I wake from anaesthetic—
my entire body wrapped in strange new pain:

a tight broad metal band
corsets my lower chest wall—
I can hardly breathe;

my lower body crackles, crunches and bursts
with sensation—
if only I could stop them.

My two legs have stopped being identical twins:
right leg is hypersensitive to the gentlest touch;
the left is completely numb.

.

Bonfire4,  English Wikipedia, original upload 8 September 2004 by Fir0002

 

 

 

 

 

 

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Bonfire. Photo from English Wikipedia, 8 September 2004 by Fir0002.
CC AS-A 3.0Unported License. http://commons.wikimedia.org/wiki/File:Bonfire4.jpg