[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] by the eager Neurosurgeon, I woke up with tightness around my lower chest wall [03] and burning and crackling sensations from buttocks down to 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-wrap on 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 and fingers (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 felt abandoned!

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! Why?

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  x 1 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’; Oxycodone 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 for the 2^nd 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 the 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 with only 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 even in my centrally air-conditioned 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 the 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?  

___________________________________________________________________

NEXT POST: CHRONIC NEUROPATHIC PAIN MANAGEMENT (1): THE BIG PICTURE – March, 2019
______________________________________________________________________