Category: Pain relief

Pain, Pain Go Away…When Pain becomes All Consuming and Overwhelming

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Invisible illness, Pain relief22 Comments

I woke yesterday morning very early, having only dropped off to sleep in the early hours.  A couple of hours of unsettled sleep and I knew that my bedfellow, pain was going to kick me about for the day.  Despite shivering in the cold early morning, there was that unwelcome yet familiar thin, feverish sheen of sweat all over my body that only comes with deep, intense pain.

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Pain,Pain Go Away

 

The strange thing was that I couldn’t quite tell where the pain was.  Start from the feet and move upwards:

  • feet and ankles: pain, check; left nerve pain worse, check
  • lower legs and knees: pain, check; left nerve pain burning, check
  • thighs: burning, check;
  • hips: can’t move them, searing pain, check;
  • lower back: don’t even go there, hurts too much, check;
  • chest: every breath is creating pain somewhere else, check;
  • shoulders: both dislocated: do not move, check;
  • arms and hands: numb, yet burning, check;
  • neck: spasm and screaming, check;
  • head: did I drink last night???
  • face and teeth: really??!! Yes!

The problem with this pain is that when it peaks nothing will help to reduce it.  No amount of drugs, distraction, heat or other remedies will help.

Pain is deeply personal.  Your pain will be different to my pain.  My own pains are different – the neuropathic back and leg pain I experience from nerve root damage is very different to my other EDS pains. Our pain might be in the same part of of bodies, but we will probably describe it differently and it will behave differently.  The same bedfellow taking a different journey to reach the same location.

Pain (speaker)

When my constant companion reaches these dizzy heights, even my spinal cord stimulator struggles to jumble and alter the pain messages received by my brain.  Some professionals believe that chronic “neuropathic” pain signals are processed by the brain differently, making it more resistant and much harder to treat.  I honestly don’t know and when it reaches these levels, I don’t care.

“Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.” NHS Inform

“Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.” WebMD

 

There are many definitions for “pain” available and there are also definitions on American sites & Wikipedia for “intractable pain“.

The ensuing brain fog means I lose clarity of any situation and irrational behaviour follows. “Mum, why are you trying to do housework like a mad woman?” asks my teenage daughter…..just because!

  • because I can’t sit still
  • because my brain has gone into overdrive yet feels like candy floss
  • because I can’t think straight
  • because I can’t stand still
  • because I feel sick
  • because I have to do something
  • because breathing hurts
  • because doing nothing hurts
  • because doing anything hurts
  • because I don’t know what to do to make it just F.O!

Pain on rain

Remember the old rhyme “Rain, Rain Go Away, Come again another Day”? Mine goes like this “Pain, pain go away, don’t come again another day!”  In this state pain killers just make me vomit, they don’t help anyway.  My beloved heat pad gives a little relief for a short period, but my body seems to know that the external temperatures have dropped despite central heating and layers of clothes.

This pain is exhausting and all consuming.  Eventually I am overcome and sink into a heavy, pain ridden slumber under a weighted blanket yet wake several hours later unrefreshed and still in pain.  What is to be done?  Watch the weather forecast, curse the temperatures (I know Chicago and other places have it a LOT worse, but my body doesn’t know that and anything near zero degrees is horrendous), try distractions and sit it out knowing that this peak will pass.

tears

Another day may feel wasted – another day of being unable to function, to be online with like minded pals, to read, to watch TV, to listen to music.  But this will calm, it will reduce from the peak to a trough and tomorrow is another day.

So today….I am here, I survived.  I am still in pain and currently sitting charging my spinal cord stimulator as I really can’t cope with turning it off during this cold weather.  The Six Nations rugby is on and feel like I have been in one of those scrums! My other pains are vying for attention now….when the nerve pain is at its worst the others fade into background noise, but today the shoulder and gut pain are shouting loudly.

But here I am typing, smiling, talking and tomorrow is definitely another day!

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Pain, Pain pin

 

Tuned Up and About to Charge the Battery – the Pain Clinic

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Invisible illness, Pain relief, Spinal cord stimulator4 Comments

So I made it to the pain clinic in one piece – just!  The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.

Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS.  At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave.  Might have saved someone a small fortune there!  What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired.  I can’t actually climb the stairs!!

Tuned Up

The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold.  I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily.  As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels.  I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.

Next the tricky part.  Any chance of a retune?  This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation.  The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”.  The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active.  But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??

Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness.  But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively.  The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have.  But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases.  It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!

So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable.  (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated.  Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical.  Should take me a couple of hours to complete!IMG_0817

(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments.  But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year.  If you have a problem call them or email the nurses at their catchy new address:

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

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, opiates, opioids, Pain relief2 Comments

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 Chatterjee “Doctor 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)

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.

images (19)

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….

neuron_cartoon

 

 

“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!

 

Can creativity be a realistic distraction in the face of chronic illness? “The Agony & The Ecstasy”

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Invisible illness, Pain relief1 Comment

I have another link for you this week which examines how distraction, particularly through the arts, can help to manage symptoms of chronic illness.  This could of course be construed as a sweeping statement and I am certainly not saying that every chronic illness can be tamed by use of artistic means.  I am certain that those of us with chronic illnesses will readily say that our own conditions vary from day to day, some from hour to hour, and that relief and the methods to get that relief are variable.  In other words, conditions are individual and we certainly are.

I have written about British actress Cherylee Houston before.  She is in a long running British soap opera, is a chronic pain sufferer, wheelchair user and is the ambassador for Ehlers Danlos Support UK.  In this BBC Radio 4 programme she sets out to meet other chronic pain sufferers and to learn how the condition impacts upon their lives, their work and how they use creativity to help themselves.  Is pain always a negative experience or can it actually enhance creativity?

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Actress Cherylee Houston on the cobbles of Coronation Street with Lara Bloom, EDS.org

Many of us bloggers use writing as a creative way in which to help our own situation – this may be through connecting with others, supporting others in similar situations and reaching out for support ourselves – but more often than not actually writing about our experiences and feelings is a cathartic experience in itself.

 

Writer Jack Thorne
Performance artist Martin O’Brien

 

Nearly everyone will be able to identify with some part of this programme and I hope that you find it inspiring.  Enjoy!

The Agony and The Ecstasy

Further reading : The Pain and Performance Artist Martin O’Brien – an essay

Photos from Google Image search

 

 

 

 

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

It’s Time for Chronic Pain Patients to Act

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, opiates, Pain reliefLeave a comment

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

 

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

Cloudy with a Chance of Pain

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

If you are anything like me this cold weather is causing you & your illness some serious grief!  My nerve pain has been off the chart today and the spinal cord stimulator has struggled to control it.

So…..If you live with chronic pain and haven’t already signed up for this easy research project, then please do……

https://cloudywithachanceofpain.com/blog/why-it-s-important-we-keep-studying-the-link-between-weather-and-pain

https://twitter.com/CloudyPain