Tag: back pain

Be the Best Version of Yourself

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, health24 Comments

I’m in the midst of a flare.

More specifically the pain from nerve root damage in my back is uncontrolled.  Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional.  The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.

The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together.  This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together.  In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.

 

 

 

 

I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue.  Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.

I am irritable, stroppy, snapping at the family.  My patience level is zero.

I feel that I let myself and others down as I crawl between the sofa and the floor and bed.  I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare.  There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix.  We are all different.

I have made this flare worse!  Wise? Probably not.  Worth it? Definitely!  Tuesday evening we attended Prize giving at the lovely girl’s school  – she protested that I didn’t need to go,  but I was determined I would see her mount the stage!  It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech.  Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row!  A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out.  When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!

It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression.  Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.

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“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me.  It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone?  Circumstances change and so do we.  The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.

I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.

I’m in the midst of a flare – but it will end!

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Best version of yourself

 

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Medical professional to Professional Patient

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Invisible illness, Medical11 Comments

In under ten short years I have found myself well and truly stepping out of one uniform and into another.  I didn’t see it coming, I really didn’t.  But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!

Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! File_000 (45) These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!

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A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently.  As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic.  In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface.  Of course all that time I was nurturing my own genetic illness slowly but surely.  It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture.  But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.

My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP!  With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising.  No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in!  My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me!  Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!

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The Student Engineer – photo taken by Dan McKenzie

Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age.  I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips.  We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well.  Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations.  The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.

There you have it – in the space of a few years going from medical professional to professional patient!  As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life.  Funny, but the endocrinologist said something similar to me about living life the best I can.

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My lovely girl on her way out to live…..

 

Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!!  But it may well have made no difference.

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What a difference a decade makes! All dressed up – my last night out before the latest rounds of surgery and hospital visits! The whole family – with my parents and brother.

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

A Year on…life as an #EDS zebra with a spinal cord stimulator & #chronicpain

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome5 Comments

I’ve really struggled to get my act together over the last 10 days and write.  You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions!  So this also means I’ve been blogging for a year.

My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote.  At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth,  when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus.  I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me.  I am really grateful.

I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery.  This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it.  It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.

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But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest!  Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure.  I have permanent nerve damage & a permanent genetic condition.  Would I go down this route again? Absolutely.  Whilst the scs is not the be all and end all for me, it has given me relief and some control back.  I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours.  A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again!  I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis.  But….I still envy my friends who are able to have them on all day!

I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago.  It was not easy!  In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again.  A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling.  I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it.  But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results.  My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.

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Blue POTS fingers

No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.

Positives from this last year have been joining social online communities.  I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations.  The realisation of how many of us there are and how many families who support & are supported is simply staggering.  To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.

I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age.  I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!!  There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks.  They should be so lucky to have the choice – and only one scar – they should see my patchwork.  We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.

On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog.  The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub!  The second is The Book Club on facebook which has been amazing. 14222267_10154600381361495_2740355709948892258_n I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here.  Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people.  Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.

At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?).  But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship.  A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!

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A year on out for Lucy’s birthday
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With 3 generations….birthday girl with mum and grandma