Tag: Pain relief

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!

 

Review “PainXit Tens machine” from Zec at Sat on my Butt blog

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Pain relief, ReviewLeave a comment

It is always interesting to those of us with chronic pain when a new pain killing device comes onto the market.  With so much metalwork and a spinal cord stimulator, I would probably be limited as to where this device might be useful, but Zec’s positive review on Sat on my Butt sounds like it could be worth a go!

“I have been sent a PainXit – TENS machine from designed2enable, simply put it is a portable TENS device to help combat pain.

I have a full size TENS machine and I have used it for many years, it doesn’t help with all of my pain but I know when it is likely to help and when it isn’t. I also have a similar pen device that contains a piezo crystal and delivers a shock when you click the button but I have never found it to be much help.

The PainXit – TENS machine is powered by a AAA battery and delivers a 1000 w at 0.4 mJ , now I know that sounds scary but believe me it isn’t.”

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Full review can be found Sat on my Butt

Painxit-tens-machine-designed2enable

designed2enable website

Pain Relief Cushions – my review of a natural product to aid in pain relief

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Pain relief, Review2 Comments

Disclosure: “I have been given a “Cosy Cushion” Pain Relief Cushion as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

When we have pain the natural thing to do is reach for something to give us some comfort and hopefully in the process reduce the pain….or get rid of it!  This goes for a toddler falling and bumping a knee, to a broken bone, to labour and childbirth, to post operative pain.  Fortunately these pains are usually short lived (yes, I know that some labours go on for days, ladies) and will become a memory.  Not so chronic pain, which by definition is pain that has been regular and ongoing for over 6 months.

For most of us living with chronic pain, we have had to find our own methods to help to ease the symptoms in conjunction with drugs and medical intervention.  My back and leg pain is caused by nerve root damage, and I have always found heat to be one of the few things to offer me any relief.  So I was really pleased when Pain Relief Cushions gave me the opportunity to trial and review one of their wheat and lavender cushions.file_000-22.jpeg

Pain Relief Cushions state that their mission is to “provide freshly filled cushions at point of order” and that “the same cushion can be used hot or cold”.   The cushions can be heated in the microwave or will take heat from a radiator in order to “give a gentle, penetrating heat which goes deep into the muscles, eases and relieves pain”.  They can also be kept in the fridge and used for cold applications such as swellings and sprains.  The company is approved as a member of The Guild of Master Craftsmen.93fd76617fb1e63bbe687ab604fbddeb

I requested a long cushion to use across my lower back and down the length of my leg, but the cushions come in several different shapes and sizes to suit differing needs.  It arrived well packaged with a covering letter, a flier describing the product range and care instructions, and a separate insert with care instructions for the heating and freezing of the pillow.  The pillow is completely natural – the cover is luxurious cotton velvet, available in a selection of colours, and the filling is wheat and optional lavender.

I did opt for lavender and this was the first thing that I noticed on removing it from the packaging – a very pleasant change from some of the less sweet smelling similar products I have used before.  However, the teens in the house did not like the lavender smell, which initially becomes stronger upon heating – personal preference, I guess, as my husband and I both liked it.  The bag is well labelled with clear heating instructions and power settings for your microwave – an average time being 2 minutes.  The care instructions are easy to follow explaining the importance of bunching up the bag, that the microwave plate must be freely spinning and that a new bag might feel “damp” the first couple of times that it is heated.  Likewise the instructions for cooling/freezing are clear.

I have been using the Pain Relief Cushion daily for approx a month now and have been very happy.  When sitting I regularly use an electric heat pad but as this is plugged into the mains, it is not always convenient to use.  This is when a microwave heat bag really comes into its own, and whilst I have used similar products in the past I found this wheat bag to be superior in quality.  Before I have found that wheat bags have not stayed warm for as long as my trusty cherry stone heat bags, but the Pain Relief Cushion does stay warm for a similar time span and is well made.  Remember I use it daily and heat it several times a day, so it is very well used.  16906976_998625020269091_6683417726205034496_n(1)

I cannot claim that it gets rid of my nerve pain, but it certainly helps to ease it.  It has also been very helpful for the Ehlers Danlos join/soft tissue pain that I have all over my body – it was particularly good for my neck and regularly dislocating shoulders!  The pictures were taken on a “popped” hip joint day.  For those of us with monthly cramps, it is a great safe alternative to a hot water bottle!  I personally haven’t used the cushion as a cold compress.

The only piece of negative feedback came from my daughter with regards to the packaging.  She commented that in her opinion the flier would attract younger people to the product with a more contemporary, clean look – she is naturally artistic with an eye for graphic design.

From the time that I have used my Pain Relief Cushion, I would definitely recommend it as an aid to pain relief and will continue to use mine.

The products retail in the UK at  www.painreliefcushions.co.uk and in the US at www.ease-pain.com

The company can also be found on social media : Twitter, Facebook and Pinterest