Monday Magic – Inspiring Blogs for You!

Welcome back, pain pals, for another week and that means another Monday of inspiring blog posts that I have found for you.Monday Magic

I’m not going to write about the ups and downs of life in the Pain Pals house here this week – I still need to write a proper post about genetics, my lovely girl and i can now include our new family handbook….more of this later, I promise!

The dislocations have been fast, furious and very regular over the last week and severe gut pains after every meal have both left me fatigued and sofa bound……but the good news is that I have spent time finding and reading some great new blogs.  I have picked some posts here and they range from chronic illness depicted as sweets, to body image, to a review, to some delicious looking frozen treats – perfect for the summer holidays (if only the sun would come back!!).  If you are a mum of a daughter, or indeed an adolescent daughter, you must read Dear Little Girl With the Smart Mouth – it made me laugh and cry….and read it to my teen girl!

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Image from jthreeNMe blog

So….grab a cuppa, sit down and unwind with these great, inspiring blog posts.  Please, please make someone’s day with a like, a follow, a share or even better a comment!

http://www.healinghugsandhope.com/2017/07/my-chronic-illnesses-as-candy-bars.html

https://www.itsnottoocomplicated.com/home/2017/7/10/a-day-out-with-a-disabled-toddler

http://www.blessingmanifesting.com/2017/07/stop-verbally-abusing-your-body.html/

http://www.sublimemercies.com/2017/07/ableism-beaten-down-and-fighting-back.html

https://readbetweenthelyme.com/2017/07/22/celebrating-3-years-here-at-read-between-the-lyme

https://www.jthreenme.com/dear-little-girl-smart-mouth/

https://brokendownbody.wordpress.com/2017/06/30/but-one-of-my-best-friends-is-black/

http://www.smilesandsundays.com/imak-compression-gloves-review/

http://achysmile.com/index.php/2017/06/12/abdominal-migraine/

http://myfruitfulhome.com/2017/06/29/16-yummy-healthy-frozen-treats/

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Image from My Fruitful Home website

 

Claire x

 

 


 

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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) 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.

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!

 

Monday Magic – Inspiring Blogs for You!

Another week, another Monday – so that means one thing here at PainPals!  Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!

Monday Magic

There have been two major events in our house over the last week.  The first was a long awaited appointment with a geneticist for the beautiful girl(BG).  I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation.  Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis.  My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18.  So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18!  Then the children’s department decided that they really weren’t the right people to see the BG.  Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.

Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating.  Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history.  The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself.  No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems.  Ringing bells in my ears!!!  More of this in another post…..

The second major event was our old dog Sam having a massive haircut with our fantastic groomer.  Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back,  hips and rear legs.  He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy!  He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.

Sammy

Spoonie Sammy

Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before.  Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health!  Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great!  If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.

Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends!  The first post is a shout out award for all us spoonie bloggers!

http://www.balancedespitethechaos.com/blog/an-award

https://jamisonwrites.com/2017/07/12/this-is-why-i-hate-summer/

https://sewprettyinpink.wordpress.com/

http://www.thisautoimmunelife.com/2017/07/23/national-cheesecake-day/

https://whenwomeninspire.com/2017/07/22/mental-health-tips-for-women/

https://bethanykays.com/2017/07/24/poetry-45/

https://beingcharis.com/2017/07/20/qa-with-charis-about-her-journey-with-ankylosing-spondylitis/

https://sleepysantosha.com/how-to-start-yoga/   plus Youtube channel: https://www.youtube.com/channel/UC0ROkm_8Bjk0qOQ13XYOebg/feed

https://carlyscrazychroniclife.wordpress.com/2017/07/11/alternative-therapies-or-not/

http://voiceathlete.co.uk/dystonia/

http://momssmallvictories.com/self-care-for-moms-with-chronic-pain/

https://www.my-ra-perspective.com/single-post/2017/04/24/Working-and-Disability-Advice-on-working-while-disabled-and-knowing-your-limits

https://edsjour.blogspot.co.uk/2017/07/10-tips-for-coping-while-in-waiting-room.html

http://www.bloomingmindfulness.co.uk/?p=440

http://www.mesheacrysup.com/blog-living-a-fibrolife/re-visitedfibrosecretc-part-5-i-was-afraid-to-have-a-good-day

Funfetti-Cheesecake

Picture from “this autoimmune life” blog

Please make someone’s day with a follow, like and comment!

Claire x

I have shared this post with Honest Mum blog


Brilliant blog posts on HonestMum.com

Book Review from Being Lydia – “The Memory of Health”by Edie Summers

I want to share a health related book review with you written by my Chronic Illness Blogger friend Lydia over on her blog Being Lydia51+d1X4z47L._AC_US218_

“I have been given this product 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. “

“The Memory of Health” by Edie Summers is a very interesting book. I think she had me from the start of the forward with “Dear Friend”. Why? Because I instantly felt this person wants to meet me where I am.

The 470-page book takes on many forms:

  • It contains excerpts from the author’s journal citing how her health is from day to day, etc.

  • The author has included some of her own poetry which gives a glimpse into how her illness comes out in her creativity.

  • There is some medical terminology to give substance and credibility.

  • And there is “the story”. All through the book, Edie talks about how we need to find and tell our story to truly heal ourselves. Her own story weaves in and out through each page, section, and chapter.

To read  the full review visit: Being Lydia

Lydia includes links to the author’s website and also for some special offers – the book can also be found on Amazon here: The Memory of Health

Disclosure: this post contains affiliate links.

The Problem with Pain Scales

This is yet another great article tackling the difficulty of understanding and rating an individual’s pain.  Back in the late ’80s, one of the first phrases we were taught as a group of new student nurses was “Pain is what the patient says it is” and in the latter stages of my career as a Palliative care nurse, I witnessed many different descriptions of pain from a wide variety of people. However I have only come to truly appreciate the huge discrepancies in the different types of pain through personal experience.  Whilst I have always had pain from EDS and had my first back surgery in 1991 (in acute pain and cauda equina syndrome), it has been since my late 30s that I experienced chronic pain in my back and leg.  The further failed surgeries have exacerbated the symptoms of my EDS, and as I had to wean myself from using opiate medication in order to have a spinal cord stimulator, so the pain in joints and soft tissue was unmasked.  The irony in all of this is that I now would be a much better nurse – I think I was pretty good in the first place – and have a better understanding of my patients’ needs and difficulties explaining their pain.

So without further ado please have a look at this great post from occupational therapist & chronic illness sufferer Jo over at JBOT – Jo Southall

A critical look at the use of pain scales in occupational therapy, what pain patients really think. written from the dual perspective.

Throughout my Occupational Therapy training and my short but already meaningful career I’ve heard two key phrases in relation to OT.

‘Holistic’ and ‘Client centred’ .. even as students who struggled to explain exactly what being an OT involved we all knew that we had to practice holistically and be client centred.

So, we treat the whole person, taking into account mental and social factors and the environment, rather than just the symptoms of a disease. We do this placing the responsibility for the treatment process on the client, with the therapist taking a supportive role .

This is especially true when talking about persistent pain….

 

For the full article visit: The Problem with Pain Scales

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

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

8 Great Bookshops to Visit in Berlin

At a time when the ebook and internet shops seem to be taking over from the local book shop, I love this post showing some fantastic book shops in a capital city….Berlin

Capital Nerd

1.jpgBerlin’s urban metropolis is one of great history and rich culture, and a veritable paradise for bibliophiles besides. Rare and old second-hand books can be found in flea markets and antiquarian bookshops, while countless small local book stores pop up like mushrooms between the streets of Berlin’s neighborhoods, from the magical Kreuzberg to Bergmannstrasse and Friesenstrasse. Here we take a look at eight of them.

Hammlett Krimibuchhandlung

In Friesenstrasse you will find the small bookshop of Hammlett Krimibuchhandlung (not such a small name, we know!), selling exclusively new and second-hand books of crime mystery. The books are mainly in German and English and the owner is willing to help customers find exactly what they are looking for with his extensive knowledge of the niche genre. So, hit Hammett for all your John le Carré-related needs folks!

Hammett Krimibuchhandlung, 27 Friesenstrasse, Berlin, Germany,

Dante Connection

Kreuzberg hosts a number of fascinating…

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Currently….July 2017

I found this link up party when visiting Roseann on This Autoimmune Life – she has written a lovely post for the party being co hosted by Stephanie on Wife, Mommy, Me blog.  It is a monthly link up where you are given 5 prompts to answer – Stephanie says it is the easiest blog to write…ever, and Roseann thought it looked like fun.

So here goes with what I am CURRENTLY doing…..

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Documenting – My daughter finally has an appointment with a genetics consultant tomorrow having been turned down by paediatrics and rheumatology for consultations.  So in the hope that she will be recognised as having hypermobile Ehlers Danlos syndrome and have some more help at school, I am documenting her issues to date…mainly pain, dislocations, dizzy spells, lack of coordination….and on it goes along with the strong family history from yours truly and my mum before me.  Wish us luck!

Accomplishing – my initial response is very little, but then I look at my post on this blog “Magic Monday – Inspiring Blogs for You!” and can say that I am accomplishing a regular weekly feature…..thanks to all of your amazing blogs.

Enjoying – my daughter and I are currently enjoying the American teen TV series Awkward – it really has become a guilty pleasure.  The traditional teen drama is turned on its head with irony, role reversals and humour…..we laugh out loud!

Reading – I am currently reading The Devil’s Claw, a proof copy that I will review for author Lara Dearman, Sapiens: A Brief History of Humankind by Yuval Noah Harari and The Versions of Us: The Number One bestseller by Laura Barnett (our monthly book club read).  I read masses and belong to a local group, Netgalley and the fantastic “The Book Club on Facebook” run by Tracy Fenton from Compulsive Readers blog.

Spending – I seem to be spending more and more time visiting different hospital consultants.  I really have gone from being a medical professional to a professional patient!  Good job I don’t mind hospitals – can’t say the same for the waiting room times!

The school holidays have begun, which whilst it means that I have more mess in the house, less food in the cupboards and more stress, secretly I do enjoy having the kids about – even the 21 year old who is currently on a summer internship – but don’t tell them I said that!!

Claire x

Taking Care of You – How Much Time Should You Spend On Your Well-being?

This really rings true for so many reasons with me and for my “healthy” friends too……

When Women Inspire

It’s a busy time, and we’ve got a lot to worry about. No wonder so many women are struggling to find a few moments each day to address their own well-being. Children, partners, pets, parents, friends, and careers all seem to come first. But even if you have an hour or so in the evening, doesn’t it feel a bit selfish to then indulge? It shouldn’t do, but for some reason, we tend to feel a little guilty prioritizing ourselves.

Why should you self-indulge? Your health and well-being are essential to others as much as it is for yourself. If you’re unwell, you can’t focus your strength and energy on family or work. You have to take time out to rest and get well again. But if you’re regularly taking the time to focus on your health, you’re actively reducing your risk of becoming ill in the first place.

What…

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