Chronic Pain and the Opioid Epidemic – with thoughts from Chronic Mom, Shelley

Here in the UK we don’t have the issues around a GP agreeing to treat chronic pain or of insurance covering prescription charges in the same way that patients in the USA do.  I am not saying that our GPs always get it right when treating those of us with chronic ailments, and I believe that chronic pain can be treated back to front – that is drugs are thrown at it as a first line and then referrals for specialist pain clinics come too late.  I was one of eleven on an in patient pain course for assessment for spinal cord stimulator implantation two years ago.  We had all lived with chronic pain for years and this was the end of the road…..whilst we appreciated the teaching of coping mechanisms, self help and psychological support, most of us felt that this had come years too late in our treatment “journey”! We were all taking opioids and in order to qualify for a stimulator trial we had to come off or reduce this.  A daunting task!

Opioids

Any one living with chronic pain will have a stash of opioid drugs in the cupboard! A few of mine!!

 

This isn’t necessarily a criticism of our doctors – I know that they have such a limited time to see and get to the bottom of each patient’s problems.  Who saw the BBC documentary series following Dr Rangan ChatterjeeDoctor in the House“?  He had the luxury to be able to spend time with his patients – over a period of weeks he spent time in the home, became familiar with families and habits, diets, sleeping patterns, which all allowed him to dissect issues such as fibromyalgia, cluster headaches, chronic fatigue syndrome and more.  But this is not the real world and in waiting rooms across both sides of the pond, the queue of people needing help for chronic pain grows.

I mentioned prescription costs and in the UK we are fortunate, yes I did say fortunate, to have a fixed price per item and for those of us needing more than one drug per month, the prepayment programme saves money on these charges.  But we are experiencing constant cuts and patients are seeing their regular medication being withdrawn – I recently read a letter from a young father who has had his medication for rheumatoid arthritis stopped due to funding cut backs. However in other parts of the world patients must cover the full cost of drugs if insurance will not pay out – I take Lyrica/pregabalin and prior to the initial licence expiring, each month’s supply cost hundreds of pounds. The first time that I was prescribed it was at the private hospital attached to the hospice where I worked – aged 39 I had to ask my dad to pay as I didn’t have enough money with me to cover the private prescription.  Dad has never let me forget that he put up the funds to start my drug habit!!!  Such a joker….

Without further ado I would like to share with you Shelley’s post in which she discusses the use of opioids – both on prescription and illegally.  It is an informative read, particularly for those in the States.

People with Chronic Pain did Not Cause the Opioid Epidemic

A great deal of people are uncomfortable with how often I address the “opioid epidemic” and how it hurts people with chronic pain. I think this is because healthy people like to imagine that doctors can fix everything and if something isn’t fixed that it must be the person’s fault. Therefore if someone is in pain they aren’t really being denied treatment for it, they just aren’t trying hard enough. Unfortunately the reality for people with chronic pain is very different. It doesn’t matter if you’re the perfect patient, doctors will no longer prescribe pain medicine.

Even if you’re lucky enough to find a doctor who will treat your pain, good luck getting your insurance to cover your prescription or your pharmacy to fill it. These days a pharmacy can refuse to fill your prescription and then call your doctor and tell them they were wrong to give you this medicine. Opioid hysteria has gotten so severe that now we’re bypassing the judgement of doctors and listening to pharmacists instead. My opinion of doctors has never been high, but they go through years of medical school for a reason. While pharmacists are educated they are not doctors and are not familiar with individual patients. So why are we granting pharmacist’s more power than doctors? Oh yeah, everyone on pain medication is an addict.

Here’s the problem though, the opioid epidemic does not come from prescribed pain medicine or chronic pain patients. In fact 75% of all opioid misuse starts with people using medication that wasn’t prescribed for them. Also 90% of addiction starts in the teenage years when teens are also misusing alcohol and hard drugs in addition to pain killers.  Have we banned alcohol yet? Because 88,000 people die of alcohol related deaths per year and no one seems to care. Instead we ban pain killers even though less than one percent of those who were well-screened for drug problems developed new addictions during pain care. In other words, people with chronic pain are not the problem and were likely never the problem…….”

For the full post please visit Shelley at The Chronic Mom

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

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)

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!

 

It’s Time for Chronic Pain Patients to Act

Taken from Pain News Network

 

By Alessio Ventura, Guest Columnistdownload (3)

“I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.

I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.

I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.

I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital.  A friend of mine died from a stroke because of NSAIDs.

After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.

This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.”

Remainder of article may be seen here: https://www.painnewsnetwork.org/stories/2017/3/13/it-is-time-for-chronic-pain-patients-to-act

 

Review : Honey Colony Superior Cannabinoid Rich Hemp Formula for pain relief

Disclosure: “I have been given Honey Colony Superior Cannabinoid Rich Hemp Formula as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

 

For the last 6 weeks I have been trialing Superior Cannabinoid Rich Hemp Formula, an herbal supplement made by Honey Colony, a co-operative model based in USA that aims to empower the individual to be their own best health advocate. honey colony.com

honeycolony-logo

 

Cannabidiol (CBD) can be extracted from the cannabis plant and taken for health benefits, but without the euphoric feelings usually associated with cannabis/marijuana.  Honey Colony, who have a mission to empower the individual to be the best advocate for their own health whilst putting honesty back into the food supply, were looking for individuals experiencing chronic pain to assess the effects of CBD oil on their health and well being.

The science bit:

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   Hemp         ←                              →    Marijuana

Agricultural production                                                                          Pharmacological production

↓                   ↓                    ↓                                                                                 ↓                                      ↓

Fibre            Oil                Food                                                                          THC                               CBDs

Cannabis is made up of over 60 compounds, and the 2 in greatest numbers are CBD and THC.  The compound that people will be most aware of by reputation if not name is the THC – this is the part that causes the user to experience the high we think of in recreational use! However it is possible to produce a plant that has higher levels of CBD and lower levels of THC.  As CBD has no component to cause psychotropic changes it is useful for medicinal purposes. Must know facts about CBD

So now the health benefits:

Pharmacological reviews have claimed that CBD has the following properties

  • anti-sickness,
  • anticonvulsant,
  • antipsychotic,
  • anti-inflammatory,
  • anti-oxidant,
  • anti-cancer,
  • anti-depressant

(https://www.ncbi.nlm.nih.gov/pubmed/22625422)

Honey Colony has developed an herbal supplement incorporating CBD which they state

  • Balances the Nervous System
  • Balances the Musculo-Skeletal System
  • Promotes Mental Clarity, Focus & Memory
  • Supports Calm & Relaxation
  • Supports Healthy Immune & Stress Response
  • Supports Healthy Inflammatory Response
  • Provides Anti-Oxidant Support
  • Supports Healthy Energy & Stamina

 

What makes the Honey Colony Superior formula stand out?

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This herbal extract is a combination of CBD oil and 6 other natural compounds

  • Sichuan Teasel Root
  • Dang Shen Root
  • Astragalus Root
  • White Peony / Bai Shao Yao root
  • Propolis
  • Bitter Orange Peel

 

The Honey Colony site states “whole plants or mixtures of plants are more effective than than isolated compounds.

Full details of the ingredients’ properties can be found here: https://www.honeycolony.com/shop/superior-cbd-oil/.

 

Why should I try Honey Colony Superior Cannabinoid Rich Hemp Formula?

I have a genetic condition called Ehlers Danlos Syndrome (hypermobility type) which means that my body does not produce collagen in the normal way – normal tissues containing collagen stretch & rebound like an elastic band, whilst mine is more like chewing gum!  It affects my joints, causing pain & dislocations, my circulation (Raynauds and Postural Orthostatic Tachycardia syndrome – I pass out regularly!), my gut, my bladder & my nervous system.  Cauda equina syndrome after a lumbar disc rupture many years ago has left me with chronic pain in my back, leg & foot.

I have struggled to gain any real pain relief in recent years and have taken a cocktail of drugs including the opiate Oxycontin (oxycodone), various antidepressants used for nerve pain and the gold standard for nerve pain, Lyrica (pregabalin).  Last year I had a spinal cord stimulator implanted to help relieve the nerve pain and my hospital insisted that I wean myself off the Oxycontin. Whilst I’m pleased to be off the opiates, a downside has been a huge increase in my joint pain so having been asked to write a review for Honey Colony I felt quietly hopeful & excited!

The Product

The hemp formula arrived in the UK well packaged and in a bottle of good quality & appearance – dark brown to preserve the qualities of the formula from light damage, with a pipette dropper lid and a black & bronze label.

It is recommended that the product is taken 3 times a day, placing 4 drops under the tongue for 90 seconds – sublingual for fast absorption into the blood stream.

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The product is a strange sludge colour, but please don’t let this put you off!  I found the taste bitter at first but after several doses my taste buds had adjusted and I was able to detect the sweetness of the honey.  For me this was a similar taste experience to that with oxynorm elixir!  Unlike some other CBD oil products on the market which use olive or coconut oil, the Honey Colony Superior Rich Hemp formula does not contain a carrier and does not need warming to thin the consistency.

The All Important Question – Did it help?

I went into this trial with an open mind and without reading any other reviews for this or similar products.  I haven’t used CBD products before so I am unable to draw comparisons between this product and other CBD products on the market. The immediate difference that I noticed was to my sleep. Like many chronic illness sufferers, my sleep is at best disturbed and at worst non-existent.  The particular type of spinal cord stimulator that I have cannot be used overnight and so I have to switch it off.  Without the oxycontin my nights have become worse from both the nerve pain and joint pain.

My nights have definitely been more settled following a final dose of CBD oil before going to bed – the muscle spasm around my joints is improved and I feel generally more relaxed.  I can’t pretend that I suddenly sleep all night every night, but I think that during wakeful periods I am less stressed.

My pain in my joints & soft tissues is definitely helped by the CBD formula – the relaxed feelings come within about 30 minutes and last for several hours.  This allows me to perform some of the moderate exercises that are essential to keep me moving & to  ensure my mobility does not further deteriorate.   The jury is still out with regards to the chronic nerve pain that I have in my back, leg & foot – I plan to continue monitoring this alongside the scs over coming months.  The temperature has dropped in recent days and so my pain has worsened – this will be a really good test period for some improvement.

I am completely realistic after so many years with chronic pain and do not expect a “cure” but any relief is really welcome, so I am thrilled that I am able to feel more comfortable in my shoulders, hips and hands particularly.

Prices, Value & Comparisons

Honey Colony products are available for shipping to the UK, but cannot be bought from suppliers here.  So when calculating costs a shipping fee must be considered.

A 30 ml bottle of the Superior Cannabinoid rich hemp formula retails for $92.55, with a current conversion of £74.73 and various reductions are available for larger quantities (https://www.honeycolony.com/shop/superior-cbd-oil-3-pack/). superior-3pack-600x600 The current postage on one 30ml bottle to the UK at Priority International rate is $48.75 or £39.36, or first class rate is $22.75 or £18.37.  The exchange rate has altered since the Brexit vote in the UK and unfortunately for me makes the product and postage rate higher as the pound falls against the dollar!

The product does feel expensive, particularly as I am no longer physically fit enough to work and we rely upon disability benefits & are technically a low income household.  However having now done a little research and value comparisons online with other products, I can see that other CBD oils claiming to be of a similar quality are comparable – it is difficult though as I may not be comparing like with like.  My verdict is that for the results I achieved, this product does offer good value and I would purchase under different financial circumstances.

Any Special Considerations?

Honey Colony recommend that pregnant and breastfeeding women consult a doctor prior to using the product.

It is possible for the consumption of CBD oil to result in a positive drugs test for THC – whilst this should be well below legal limits, it must be noted by the individual (in the same way that eating poppy seeds can result in a positive opiates test occasionally).

My Conclusion

I have been impressed with the results that I have achieved using Honey Colony Superior Cannabinoid Hemp Formula health supplement whilst caring for my symptoms from Ehlers Danlos Syndrome.  Whilst I have not eradicated all my pain, I have achieved a better sleeping pattern & have gained relief for my joint pain.  When personal circumstances allow, I plan to continue using this product as part of a pain relieving programme.

 

DISCLAIMER: all opinions stated above are my own and based upon my own experience.  I am not authorized to give medical advice and am no longer registered as a nurse.  Please consult your doctor or seek medical advice before commencing any health supplements/medications.

Taste Buds, Drugs and Red, Red Wine

miley-tongueA visit to the dentist got me thinking again about what our medication does to us.  I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers!  Quite a feat at my grand old age as my kids remind me.  Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!

My dentist actually knew what Ehlers Danlos syndrome is and what a spinal cord stimulator is and I  have to say, this impressed me.  He knew that EDS can cause mucus membranes (the mouth lining), to be drier than normal and that the various drugs we all take for chronic pain can also cause oral problems.  Of course he spoke to me about the importance of good mouth care, dental hygiene, flossing etc to keep my gums as healthy as possible, but it got me thinking about some other side effects of the drugs, particularly opiates.

images (26)In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine.  I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!!  The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found.  More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome.  I have no idea if it is still there, but it holds some great memories.

After the drowsiness, one of the first side effects I noticed when I started my cocktail of drugs was a change in my taste buds.  Particularly for red wine!  I know, I know, as a responsible now unregistered nurse, I must tell you all that it is never wise to mix strong drugs with alcohol.  All the packaging tells you so.images (27)  But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine.  What on earth was going on??  Did I ever remember to tell my patients that favourite food and drink might become unpalatable?  In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs.  A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.

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Red Red Wine

Then we come to the eyes, more mucus membranes beneath the lids.  I wear contact lenses and have done since I was 14, but in the last couple of years my eyes have become noticeably more dry and irritated after a shorter wearing time.  My optician wasn’t surprised after he asked which drugs I took – at the time oxycodone, lyrica/pregabalin, mirtazepine and fluoxetine.  These may seem like such small things, and really they are, but they just add to an already difficult situation.

There is light at the end of the tunnel.  Whilst I am still on various drugs and still suffer brain fog, I am finding that my taste is altering again.  My mouth remains dry and at times my gums are sore, but I can drink and more importantly ENJOY a glass of red wine again!! Cheers…

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Oxy…going, going

Not quite gone!  But I think I should be off opiates soon.  When I attended the pain course last May I was taking 60mg oxycontin twice a day – that is the equivalent of quarter of a gram of morphine a day.  Believe me when I say that is a pretty hefty dose and combined with lyrica, some days I should not have been upright.  St Thomas’ were very definite that I had to start reducing it with a view to coming off it entirely and I have always been quite happy to do so.  My GP has been very supportive and allowed me to set my own rate, and whilst reducing from the high doses at 10mg per month it was fine.

As any practitioner worth their salt will know, this is because high doses of oxy can actually worsen symptoms of pain rather than reduce them.  A vicious cycle begins as the pain increases, so the oxy dose is increased, the pain may settle for a short time before it increases again, the oxy dose increases and aggravates the pain, and so the cycle continues.  In some cases, for instance a colleague’s teenage son with prostatitis (acute inflammation of the prostate gland), the pain symptoms far outlasted the actual infection – the poor guy had excruciating pain for months longer than he should have, missed his start at uni and all as a consequence of the side effects of the opiates.  This means that just as I had felt very little benefit as the oxycontin had gradually crept up beyond a certain point, I equally felt little difference as I gradually reduced it.  That is until the last couple of weeks, when I have hit a therapeutic dose!  f8ae6ae55a608449bfb0aec2e627e162

An upside is that my memory is better than it has been in a long time, although the family might not agree.  But a negative is that not only has the pain felt worse, but my sleep has deteriorated again as my new pain relief – the stim – cannot be on at night.  I haven’t even started to think about reducing the dreaded Lyrica(pregabalin) yet, and I’m on the full wack of 600mg per day!  This is one to write about another day……

We discovered the Carers’ group outing to the Odeon cinema today – Dads’ Army was the film to entertain us.  It brought back lots of childhood memories having grown up watching the original tv series, and had a fantastic cast including some great female characters.  images (12)The plot was as daft as ever, the men as dippy as the women were sensible, and the Home Guard, with just a little help from their strong ladies, saved the day against “MR HITLER”.  We were some of the youngest in the cinema, and even in a carers and cared for group were the last to make it out.  Duncan very nearly tumbled down the stairs with me today as my leg/foot were numb and my balance indicated that I’d been on the booze when I stood at the end!!  Very good first impression I created.  I’ve said it before but the stim doesn’t stop my leg going dead…..does anyone out there have any helpful tips??

 

 

Panorama

imageHands up who saw Panorama on Monday night!  I watched it with my father in law by pure chance as I hadn’t noticed what the subject matter was to be.  For those of us living with chronic pain prescription pain killers are a huge part of our daily lives – and not just the opiates dealt with on the TV.  Believe me, some of the non opiates have some equally nasty side effectives and are just as difficult to withdraw from.

I remember well when the new man made drug oxycodone was first licensed for use in palliative care.  It was sold to us as the new wonder drug with fewer side effects and a reduced effect upon liver and kidney function.  However the nickname of Hillbilly heroin was starting to reach us and the alarm bells should have been ringing.  Very quickly the drug was being used for that notoriously difficult diagnosis – you guessed it, chronic pain – and it started to make its way onto the black market to join its cousin, heroin.  These days no American cop show worth it’s salts has a season go by imagewithout several references to “oxy”!

What about Joe Bloggs who visits his GP with sciatica? How will he be treated to help ease his symptoms? Diazepam – Valium- is always a good mainstay for short term use to reduce and relax muscle spasm, but what about pain killers?  The vast array ranges from low level opiates: cocodamol, codydramol, dihydrocodeine and the highly addictive tramadol; non steroidals such as ibuprofen, naproxen and diclofenac sodium; and the drugs found to help nerve pain such as the antidepressant amitryptilline and anticonvulsants such as carbamazepine, gabapentin and the gold standard pregabalin (Lyrica).  This must be prescribed by it’s trade name since various patents and licences have lapsed.  I have never known a drug to contain a list of possible side effects as long as that distributed with pregabalin – the manufacturer lists every body system to cover themselves! So Joe will leave his GP surgery clutching a script with probably suboptimal analgesia – that is not inadequate amounts, but rather not the best combination for Joe.image

So several years later Joe is finding that his long acting opiate (MST or OxyContin) is on the increase, the dreaded pregabalin is causing weight gain amongst other effects and he is taking higher doses of his short acting opiate (sevredol or oxynorm) for breakthrough pain. He is walking through the day in a fog after a sleepless night, with a brain and memory filled with opiate shaped holes, weighing 4stone more and now diagnosed to have chronic pain.  Oh, did I mention that he is also a fully paid up member of club Prozac by now?  Many of us living with chronic pain face depression and the need for “happy” pills.  More of that another time.  Alongside this Joe is attempting to show the DWP that he really can’t jump through the hoops that they would like him to, as he is no longer able to work.  Perhaps you recognise this weary, tired, depressed, overweight person who remains in pain?  To be continued…..image

How am I doing in Hereford?  I am being extremely well looked after – spoilt in fact – and I do feel guilty for not helping out.  We have had the same dismal weather making a damp squid of bonfire week as the rest of the country.  There have been a few bright lights and loud bangs for the dogs to bark at though!  I have managed to walk to the supermarket and met lots of neighbours on the way, including the retired gynaecologist (a Tommy’s man who objected to the pairing with Guy’s!) who made me laugh when he asked in a stage whisper how my bladder is!!  I continue to play with the voltage of the Scs as I need a higher stimulation in the cold, damp weather which is also aggravating the EDS – my shoulder slid out last night.  Does anyone else get paranoid that they will run out of voltage for enough relief?  How positional are other people’s Stims? I have found that if my pain is excruciating down to my foot, that lying flat on the floor increases the level of stimulation – I must speak to the CNS next week to see if I need reprogramming!image

Apologies for the odd posts today – problems with the iPad meaning I have lost the second half of the post twice!!

Sorry to have been away……

It has been over a week since I last posted and during that time our household has been hit by a variety of ailments from migraine to ladies’ problems to chest infections.  The yocomic conungest is into her second week of half term – 2 weeks!  I remember only getting 2 days for one of our half term breaks – the middle started his half term with a trip to Comic Con London – grown people running around dressed as comic book characters! – and I believe that our student is on a project week before reading week next week.  Reading week indeed – the university term only started at the beginning of the month.
The last week has been a bit bumpy for me.  I can safely report that the stimulator doesn’t help certain pains of a female variety, but I already knew that these symptoms exacerbate my back pain and so I spent a couple of miserable days at the end of last week.  It was probably rather ambitious to imagine at the beginning of the week that I would be able to attend governance meetings on consecutive nights – but I did manage the first one.  I won’t lie – it was a struggle.  Sitting for several hours in an upright seat and trying to concentrate and participate was much harder than I had anticipated, but I consoled myself that I was only just over 3 weeks post op.  But I really wasn’t well enough to attend the training with my own governing body the following night – I’m really sorry that I probably picked the wrong session, fellow govs!

As I become more mobile again, I am having to learn how I need to use the stimulator to best help me.  The change in weather is always a problem for most chronic pain sufferers and is also a problem for those with added joint issues like myself.  I know that I have already posted that the level of stimulation has changed since the permanent implant,  and I am probably a bit paranoid about increasing the voltage level.  When you have taken a mixture of strong medication for years, and you have been trained in pain control in a previous life, it is very hard to lose the mentality that says your body becomes tolerant  and therefore requires more and more for the same level of relief.  Of course in the case of opiates this is true to an extent, but please don’t be mistaken for this being the same as addiction – as hospice nurses we struggled every day with the false belief that it is better for someone in pain to resist drugs as they may cause addiction.  In the majority of cases all the time an individual has pain, the correct analgesic will be used by the body like a key in a lock to fit the pain receptors and thus inhibit them.  Finding the correct key for the lock is not always quite so easy…. Of course this does happen to a degree with the stimulation and thus with the low frequency stimulator that I have, the hospital instructs patients not to use it continuously in order to avoid creating a new “norm”.  Does this make sense?

I managed a dog walk at the weekend with Duncan and am happy to report that I was far more comfortable with the stimulation switched on.  My mobility and stamina remains hampered by the pain and stiffness at the fusion site, but it is great to be able to have some control over the leg pain.  I am still playing with levels in order to sufficiently cover my foot – I might just have to make do with a nice, new pair of boots!!  Saturday afternoon provided a perfect opportunity to sit down and recharge my battery in front of the first semi final of the rugby world cup.  Not sure I’ll ever get used to saying I need to charge myself up, and I must stop talking about being “turned on” or “off” as the former has produced some very quizzical looks……..

Time for a photo op – no, not related to that last comment!! – I had let the battery run down to 50% as instructed and the charger had already been powered by the mains.                                                        imageimage

The above pictures show the positioning of the paddle over my stimulator and the charger – the paddle is very reminiscent of the paddles on the defibrillator that used to be on resuscitation trolleys, although it doesn’t deliver such a hefty charge!

The charger is showing:

top row: my stimulator turned off, the volume, my battery at the half full mark

middle row: the imagepaddle making contact with my stimulator,

bottom row: the level of connectivity between the paddle and my stimulator, in this case it is poor with only 2 boxes filled out of 8.

The charger is now showing full connectivity between the paddle and the battery as all 8 boxes are filled in.image  Whilst in theory it is possible to be ambulant whilst the charger is strapped to your back, in practice I would say that the level of connectivity is quite positional and thus use the couple of hours it takes to watch a film, read or watch the rugby!!  It was a great match.

A gaggle of girls has just arrived home after a day out in Brighton, so time to put the pizza in the oven and prepare for a very giggly sleep over.

Who else is out there?

image

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…