Tag: Pain Support

Chronic pain, opiates…& where does that leave me? (Part 2)

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Invisible illness, opiates, Pain relief, Spinal cord stimulator5 Comments

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis – for further information have a look at this great blog: Bladder Help) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.  For further information on bladder related problems visit Layla’s http://bladder-help.com/

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

Chronic pain & opiates (part 1)

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, opiates, Pain relief8 Comments

I wrote this last year but it is still so relevant and I hope helpful!  Part 2 tomorrow…

Pain, pain go away…..if only it were so easy.  A new facebook friend is suffering terribly at the moment, whilst trying to do what the hospital requires for a spinal cord stimulator trial.  Trying to offer some words of advice and encouragement has got me thinking and I thought I’d have a stab at talking about opiate use in chronic pain.

I don’t know what the policies of other pain centres are, but the consultants at St Thomas’ recognise that opiate substances – control drugs such as morphine, pethidine, tramadol, oxycodone etc – are not necessarily the right fit for every type of pain.  The majority of what I am going to write is from personal experience – both in my other life as a palliative care nurse, and from now living with chronic pain.  I’ll try not to become too medical and I may spread this over several posts as I really don’t want to bore you!  I have done a little medical reading to ensure that I am giving you the latest thinking and for those with medical minds I will list some of the articles that I’ve read – although I wouldn’t necessarily recommend them, bedtime reading they ain’t!!

In cancer care and particularly palliative care, opiates have long been the gold standard for pain relief.  Diamorphine, pure “medical” heroin, was the drug of choice when I started working in cancer care, but even then nerve or neuropathic pain was a nightmare for us to control.  Try to visualise your nervous system as a circuit board whose main branch is the spinal cord, which is supplied with its impulses to & from a source that is your brain. The channels of the circuit are made up of building blocks, cells called neurons, which transmit the messages to & from the brain. The unknown quantity is: in the circuit that processes and transmits pain, which neurons are those providing the output that drives the pain network within the brain where chronic pain is present.  Still with me?  In chronic pain the firing activity of the neurons is changed, but it is still unknown quite how it is altered.

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I have sat in some very complicated pain management sessions in my time when the descriptions of the different pain receptors almost went over my head.  All you need to know is that the building blocks contain different receptors which convey different sensations and so respond to different drugs.  Think of a lock and a key – a particular key (the drug) is needed to open a lock (the pain receptor).  When opiate drugs are used for pain control, the receptor that responds to morphine etc is Mu, but there is now known to be an optimum time period for use of these drugs – probably about 3 months.  After a while the opiates cause the down regulation of the Mu receptors, which means that fewer receptors need more opiate molecules to get the same feeling of relief.  Eventually the loss of these receptors means that our bodies cannot regulate the feeling of pain so well – and produces what the medics call “hyperalgesia”.  When your consultant tells you that the opiates may be increasing your pain rather than reducing it, this is what he is talking about!

But where does this leave me, the person with the chronic pain? To be continued….

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“Personalised Medicine & Opioid Analgesic Prescribing for Chronic Pain: Opportunities and challenges”  Stephen Bruehl et al, The Journal of Pain, Feb 2013, Vol 14

“Increased Pain Sensitivityin Chronic Pain Subjects on Opioid therapy….” Yi Zhang et al, American Academy of Pain Medicine, 2015, Oxford University Press

“Narcotic Drugs for treatment of Chronic Pain: a double edged sword” Peter Ullrich, Spine-health.com, 2012

“How Pain killers sometimes increase Chronic Pain” Stepahnie Burke, Spine-health.com, 2013

Think this is enough……I apologise if this is too medical, the next part won’t be!

 

3 OF THE BEST CHRONIC PAIN SUPPORT WEBSITES IN THE UK…from Barbara at Back Pain Blog UK

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Spinal cord stimulatorLeave a comment

Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers.  It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back.  My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.

This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:

My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..

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To read the full post visit :Back Pain Blog UK

Paint away the Pain #arttherapy #ThrowbackThursday

On By Claire Saul (PainPalsBlog)In chronic pain, Depression & mental health, Pain relief9 Comments

I’m sitting here recharging – yes literally as the scs running a bit low on juice – watching the Olympics and downing Pimms.  The divers and then the gymnasts, wow they are fit and so many of them have overcome injuries to be at the top of their game.

Pin for later

Art Therapy

This got me thinking about a lady whose work we admired in an art gallery recently and her story.  She was an ordinary young housewife who had her family and set about bringing up her children and supporting her husband as a stay at home mum.  Life felt pretty dark at times, although it should have been great, and now that wonderful thing hindsight has shown her and her husband that she probably had post natal depression for many years.  During these difficult days she developed a painful nerve condition of the face called trigeminal neuralgia – all the same awful nerve pain that is experienced with sciatica down the leg or nerve pain down the arm, but running through the side of the face.  I know that I have written at length over the last year about nerve pain and just how hard it is to treat, but it really is the hardest thing to control and the trigeminal nerve is probably the hardest to symptom control.  This would have led to a continuous cycle of pain and depression.

She had never painted beforebut with encouragement started to put brush to paper and found a fantastic outlet for her pain and depression.  Ov61f4zqdeCAL._AC_US160_er a period of years she developed her own very distinctive style – the gallery described it as Marmite, as people either love her work or hate it – and her work started to be noticed by art critics.  Today she has exhibited in a top London gallery, her art sells for thousands and she is a leading figure in the Royal Institute of watercolour painters.  Just think, this all started with what was effectively art therapy!

http://www.adrianhillfineart.com/ – link for the gallery in Holt for more information
File 26-07-2016, 13 10 31

Therapies that complement traditional medicine have long been recognised for their beneficial qualities in mental health, palliative care and cancer care.  The use of art and specifically colouring is now becoming a regular therapy for symptom control.  Adult colouring books are quite the rage!  I have found that when the pain is not settling, sitting quietly with a picture to colour in really changes my mindset and thus my response to the pain.  There is something about the different way in which you have to concentrate that slows down the mind and is calming.  My girl, who does more than just colour, says that she finds painting and drawing relaxing.  With art, it is possible to express thoughts and feelings that can’t be voiced.  In the paintings of the artist described, it really is possible to see her battle with depression and pain in the dark outer edges of every painting – and yet the details of the actual pictures are bright and vibrant, depicting people living life to the full.  Maybe some these actually picture activities that she would have liked to have done or places to have visited – even the slightly more risque elements to some of her work could be expressing a side to life never experienced.  I wonder how many of us bloggers (not just those with an illness) use writing as a similar therapy – whether it is as a distraction from illness, a means to express ourselves in a way that we are unable to voice in everyday life or merely a way to escape from the stresses & strains of modern day life for a few minutes.

So to return to my original thoughts, it is possible to work and strive to overcome physical & emotional difficulties in order to produce a work of art, be that a physical painting, a novel or a perfectly executed high bars programme. images (2) But we mustn’t feel or be made to feel the lesser for failing to overcome our situations or to
produce wonderful artwork.  We can take inspiration from others though and each find our own outlet.

 

 

So, I’ve finished charging, my battery is showing full, the Pimms is long gone……nearly forgot, we came away from that art gallery truly inspired, but also with a slightly lighter purse and a girl grinning from ear to ear as she carried oil paints home!  I think I know how she plans to express herself over the remainder of the holidays!

 

Who else is out there?

On By Claire Saul (PainPalsBlog)In chronic pain, opiates, Spinal cord stimulator, Uncategorized1 Comment

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Today we had our annual boiler service after a frustrating afternoon yesterday, sitting in waiting for an engineer to arrive.  The phone call came at 5.15 to tell us he was stuck on an emergency – really? You couldn’t have called before?

Anyway the engineer duly arrived this morning, just as I was getting ready to go out for coffee with a friend.  I found myself apologising as I walked into the kitchen and gave him an eyeful of plasters and gauze, as I was adjusting my jeans waistband over the top of everything.  This led to me explaining I had just had surgery, one thing led to another and, as my kids would moan, I gave him my story – “omg, here we go. Why do you have to always tell people?” ,”maybe because they ask!” – and he proceeded to tell me about his brother.

As a 12 year old boy he was involved in a hit and run, which has left him with disabilities that have worsened with age.  He has had numerous prolapsed discs, the same old story with lower limb problems and various surgeries over the years.  He worked as a carer for adults with learning difficulties but has had to stop, and is now living with chronic pain on a cocktail of drugs. All by the age of 40……life begins and all that!  My buddies from St T’s and those on the PainSupport forums will all recognise this story.

I suppose my reason for mentioning this, is that most of us have no idea of the number of people living with chronic pain everyday for years, in this case for a lifetime. Chronic pain is not like a broken limb or even a disease like cancer – it cannot be seen, there is nothing to cure and the sufferer often looks “well”. The effects can truly only be understood by others who have suffered – the way in which it silently encroaches on all areas of your life, taking the joy out of simple pleasures, can be truly devastating.  I really believe that I would be a much better nurse now, with a deeper, first hand understanding of my patients’ hopes and fears because of my own experiences.image

So, the British Gas man went home to his brother armed with the hospital details for the programme, this blog and my contact details – just to know that you aren’t going through this alone and there is someone there who really does understand what you are going through, makes this world of chronic pain a slightly easier to place to inhabit.  To be continued…

6 Hours Straight!

On By Claire Saul (PainPalsBlog)In Spinal cord stimulatorLeave a comment

I slept for 6 hours straight last night! My pain buddies will appreciate just what a huge deal this is.

When we were on the 2 week inpatient programme earlier this year, we very quickly discovered that everyone in the group suffered from sleep deprivation.  The effects of lack of sleep combined with constant pain are draining and far reaching. Have you noticed how everything seems so much worse in the early hours of the morning?  Every one of us struggled to be in our clinic room at the start of each day, but we all understood the tremendous effort required. I have seen the looks when I try to explain that I’m unable to make commitments first thing in the morning: never able to predict when I will be up all night and then waiting for medication to start to kick in.  When one of our number at Tommy’s managed to crawl down one morning, but had not slept and was in too much pain to even change out of her pyjamas, we all got it.  Most people don’t and that is just the way it is.

I managed a visit to my parents house this morning to see my godmother for her birthday.  The timing tied in nicely with my son’s driving lesson, so I suggested that he drop me off. After all it is only up the road.  The response was that it would take the whole lesson just to get me in and out of the car.  Fair point, I guess, as the car is a mini!  Whilst the surgical pain was quite severe this morning, as I believe I didn’t move during that 6 hours, a dose of paracetamol helped to ease the feelings and thus I let the stimulator take on the cold and wet weather

Cold, damp conditions are always bad for me, increasing both the back and leg pain.  So I have had my Medtronic Stim on for longer periods,at about number 4,doing battle for most of the day – and winning! The relief to be able to squash the pain to something that I can cope with is a very emotional experience.  Another friend has already had the full implant and says the same thing, that after years of pain the touch of a button could be the beginning of something new.

Apparently I return to St Thomas’ tomorrow for a follow up! A letter arrived this afternoon – good job the post wasn’t as late as it often is.  It all feels quite speedy, but equally I’m eager to have a plan for the next stage of the procedure as it feels like life is on hold for the foreseeable future.

Thanks, Tina, from Pain Support for agreeing to share your experience here. I will add a page with some information about neuromodulation, the St Thomas’ programme, the different trials, devices etc over the next few days.  Meanwhile fingers crossed for another 6 hours, or maybe even 7!