30 Years with chronic pain & disability
In 1990 when I was close to turning 18 I had a motorbike accident that left my arm paralysed from a Brachial Plexus Injury, and later led to amputation in 2009 to try and relieve the chronic and phantom pain I suffer since the accident. It was my left arm and yes until then I was left-handed.
Over the years since the accident my Phantom Pain gradually decreased but unfortunately the chronic pain become worse. Far worse. Eventually I decided to Amputate the arm. I’ll explain more about that later as I’ll start with the treatments below.
A quick note on the Injury itself as I get contacted by other poor Bikers who have also suffered the same injury as me and are possibly also contemplating amputation.
Injury – Brachial Plexus lesion.
In simple terms, I hit the ground with enough force to bounce my arm hard enough to rip the nerves right out of the spinal cord.
Like unplugging a power extension cord, the arm is instantly paralysed. I was told that surgery is impossible, but that there is a slim chance the nerve may reconnect at some stage within two years. Mine did, but only the nerve that controls Bicep function. I still couldn’t lift or move the arm in any way at all. (so no control of the shoulder at all, other than being able to shrug)
This Injury is sadly relatively common in motorbike accidents where the rider is flung for some distance, although it is just as common the same accident kills them.
This table details the various drugs and other treatments I’ve used since 2010 to combat the chronic pain and phantom suffered since 1990. Prior to 2010 I mainly treated it by smoking marijuana, which was extremely effective although not at all possible to use during my working day! I decided to cut out the medical marijuana due to it’s side effects on memory and other such typical health issues. I do miss it as it had the ability to instantly relax me.
March 2010. Tramadol
After a good chat with my G.P about recent increases in issues we decided to trial a sustained-release painkiller called Zydol (Tramadol). I was not actually aware such a product existed, hence I’d not asked for it in 19years of suffering.
It has so far been a great therapy but of course side-effects do exist.
So far we’ve noticed if taken at night I will then have extreme night ‘tremors’ to the point of having Sharina having to get up and sleep in another room. As my pain is much less severe at night due to art-therapy I had then trialled not taking it during the evening.
December 2010. TENs Machine
I became tolerant of Zydol within a couple of months and now don’t even notice it kicking in, unless it has been a number of days between doses. I have reverted to TENs therapy, finding great results from a new machine costing $129. Frustratingly it broke down after a couple of months & I’ll be making a warranty claim shortly.
TENs is a fantastic treatment for my chronic pain but it has a few downsides. It pretty much has to be on constantly for it to be any use. Because it is an electronic device it requires regular feeding of fresh batteries. The little pads that stick to your skin must eventually be replaced, and they do need frequent readjustment throughout the day as they shift about.
The leads also require replacement and frequent adjustment. As they are usually under my clothing, they are slightly uncomfortable.
After having the device break again I have given up on TENs, leaving me with just wheat-bags and pain medication, which is working out to be effective about 50% of the time
You’d think 20 years experience of chronic pain would mean things are fairly stable. I can tell you that’s bullshit and I spent too long thinking I was bullet-proof.
There is no shame in being changed by things out of your control. That’s not giving us a get-out-of-jail card and we should continually strive to improve.
July 2012. Digesic Pain Relief.
My chronic pain has again increased, causing frequent periods of utter exhaustion and making my working life quite difficult. I am on the phone a lot and often have to mute the microphone as I have to let out a groan or hold my breath during a pain-spike. My GP decided to try Digesic instead of Zydol and I used this for about 6 months before recently asking for something stronger as with the Digesic I was still going through a lot of top-up Panadol’s and analgesic-calmatives.
I’m now on a pain-relief patch, ‘Norspan’ This patch lasts a week and delivers 10 mcg/hour of Buprenorphine Early days, yet as only week two, but so far – so good. Norspan is a Controlled Drug and rather potent but I only seem to experience the pain-relief effects as opposed to any happy-high or anything of that nature.
Trialled Norspan for a month and then onto giving Lyrica (Pregabalin) a go. 75mg at first was mildly effective and after doubling the dose I have had significant relief, ranging from complete elimination to infrequent mild effectiveness. This of course has been just bloody wonderful. Side-effects for me are short moments of intense drowsiness, almost falling asleep at my desk at work. It comes on most days around noon or 3pm, doesn’t seem to make any difference if I have had a coffee. I don’t notice any other effects other than the pain relief and drowsiness, so no buzz or high etc. – but it does increase the effect of alcohol a little. (Not that I drink much.)
Mid-January I suddenly stopped getting any effective relief. I doubled the dose of Lyrica and saw some improvement, but it really feels like I’ve gone back to the bad old days. Days are spent with very little ‘downtime’ from the pain. I am back to almost constant use of wheat-bags and it is difficult to get to sleep, and when I do I often wake up from the pain.
The destructive effects of chronic pain exhaustion and disruptive sleep are enormous.
Some improvement since February however exhaustion again taking it’s toll, particularly at work. I am still taking roughly every second Friday off, but I thought another review of meds was in order so made another trip to the GP. Had a new Doctor and she recommended we stop Digesic, and instead doubled morning dose of Lyrica so on 150mg in morning and again 150mg in evening.
After a week this seems to be going good other than some intense dizzy spells where my brain turns to a foggy mush and spends 10mins rebooting. I frequently nap or sleep during my lunch breaks.
is a sustained release form of Oxycodone hydrochloride and naloxone hydrochloride dehydrate. This is a strong opioid painkiller, which helps manage my pain a lot, without much dizziness or anything like that. It is supposed to help combat constipation, one of the side effects of all my other medication’s, but I still need to take laxatives to keep regular.
I do use non-medicated techniques to help with my chronic pain and focus mostly on Mindfulness Meditation and aspects of Cognitive Behaviour Therapy. I highly recommend reading A Synopsis of Shinzen Young’s Book Break Through Pain if you think you’d benefit from learning some really simple but very powerful ways of coping with your pain. These tools are much more beneficial than any drug and of course have none of the side-effects. You do however have to be receptive to them and I can tell you I wasn’t for the first 5 years after my accident – even though I was never angry or resentful.
Update January 2016
Currently on Targin 20mg morning and night, Lyrica 150mg morning and double-dose evening. Endep 100mg
Update September 2018
Swapped Targin for Palexia. Main motivation was that I was developing problems with the Targin sustained release effectiveness disappearing 50% earlier than it should, so Afternoons were particularly unpleasant, making driving risky.
I take 100mg Palexia at 08:00am and 200mg at 16:00pm
Lyrica & Endep remains the same dose as above.
Update August 2021
Medications: Lyrica, Endep
Combined with surgically implanted spinal stimulator
My experiences with Phantom Pain
60-80%of amputees experience phantom pain in the amputated limb
Phantom pain does lessen in time. (Dramatically so for me thankfully, but sadly it has been replaced by Chronic Pain
My belief is the phantom pains are related to the last nerve ‘memory’ experienced. It has been reported that motorbike accident victims like me (brachial plexus lesion is the medical term for the injury) often experience a crushing burning sensation in the hand of the affected arm. One can imagine gripping the handlebars rather intently in the moments before impact!
I was lucky enough to have a small amount of nerve regrowth some two years later, which resulted in the bicep muscle becoming the only working part of my left arm. I did also have normal sensation of touch all the way down to the elbow.
When the regrowth happened the site of my phantom pain instantly moved from my hand to the elbow area, and remained there until the amputation 16 years later. At that stage it was much less a hassle, having instead been replaced by chronic shoulder pain that was equally bothersome and became much worse than the phantom pain was.
When you are the victim of a massive trauma, pain becomes almost part of you during the early periods of healing and it can be weeks or months before you begin to feel normal. You might suddenly realise that sensation still hasn’t disappeared yet.
Some describe phantom pain as tickles and aches, others much worse. The early reports of phantom pains were from soldiers who had a natural tendency to downplay things. I personally only really felt understood by the Doctor at my outpatient clinic. After my arm was amputated just below the shoulder in November 2008 I asked the resident doctor attending at the removal of my stitches (he didn’t know me from a bar of soap) about phantom pain. He looked up at me and said “some people get it, some don’t”. He must of been very busy with his clipboard as he turned and walked away after that. Nice one mate.
Phantom pain is very confronting. For most it’s occurring in a limb that isn’t even there. How do you tell someone that you’re in a bit of bother because it feels like someone has you left hand in a vise when you don’t even have one.
An effective treatment for Phantom Pain you can try at home is Mirror Box therapy
My arm Amputation.
Slowly over the years I had a new type of pain begin to develop in the neck and upper back & shoulder. Things changed for the worse and I soon began popping pain pills which had very little relief on the chronic pain, that had developed into what felt was part chronic and also part phantom. During the waves of pain that would sweep over the region it could reach a peak that I could only treat with a sharp intake of breath, held until the wave had passed. I decided to amputate the arm and went through the Public Hospital system. It took about a year from the first referral from my GP and the procedure itself was very quick as I was out of Hospital by 9am the next day.
At first it was amazing to have this freedom. No more anchor or floppy wasted-away arm to get in the way in bed, on the train, at work….etc. Of course I get my fair share of curious looks but I was pretty immune to that as the arm prior to amputation was literally wasted-away through dis-use it was just skin and bone from the elbow down.
Around a month later and the wheat-bag started getting used again, and over the next half-year I slowly increased it’s use. It became apparent the amputation would not solve my pain problems. No regrets at all though as it other benefits like physical freedom. Over the years I have blogged about chronic pain I have been contacted by about 6 guys with paralysed arms contemplating Amputation and I’ve said Yes each time.
Some final thoughts on Pain..
Pain is a difficult to describe beast.
I struggled to explain my experiences in the early days, especially when visiting the pain management outpatient clinic.
Doctors are fond of asking patients to rank their pain on a scale of 1 to 10, as if they were judging some contestant in a dance contest. Pain isn’t some glamorous dancer we hold up score cards to, its a sonofabitch bastard I’d like to punch in the face given the opportunity.
Your outlook towards pain affects your ability to cope.
Sound obvious? Preaching to the choir?
Probably not obvious if we listen to the amount of internet traffic regarding pain and meditation, or other alternative therapies.
Picture the vicious cycle of chronic pain leading to depression, depression causing sadness then anticipation of future pain and sadness. The actual next event of pain is then multiplied by the prior fear of the very event itself.
It feeds itself in an aggressive lust of negativity, repetition and hatred of the random visitor named pain. Pain is the unwelcome guest who stays late and ruins the party.
Remain positive and keep that guest away from your house, or shrug & welcome him in when he next’s come visiting, but seat in the corner or the most boring room of your house.
Sandbag the pain or overwhelm him with positivity, but do not place your defense in a chemical induced barrier, that your all-too-vigilant brain is going to become all too used-to in a period you wouldn’t ever dream possible could be that short.
The minute your defense becomes predictable the beast of pain becomes excited at seeing an almost welcome opening into it’s favorite haunts. Stir it up and prepare your defense & shelter with military precision, but remember there is just as much value in remaining completely unprepared and welcome to wherever the daily events of life takes you.
Its easy to try and ignore and not so easy to admit it’s not working. They use fancy labels such as “breakthrough pain” to describe those peaks of interruption to your chronic pain that may require treatment outside your usual routine.
Don’t take it personally when your Doctor looks worried as they’re probably contemplating the risk of prescribing your next dose going towards an addict instead of a victim.
They think it takes serious research to explore the possibility that people who take drugs might take more drugs? I see almost daily reports about over-prescription. Today I read a well-written article about patient-doctor contracts that lead to this post. If we seriously think a signature on paper is going to combat the problem of chronic pain addicts, it says to me the medical community has it’s collective head in the sand.
Doctors, drop your pen. Turn away from the monitor, look your patient in the eye and ask, “How are you feeling?”
Listen to the reply.
What has changed? What is the trend? What should you do about it?