Monday Magic – Inspiring Blogs for You

Welcome back to Pain Pals for what I hope will be a great week following a fantastic weekend! Those of you who have read my previous couple of posts will know that our lovely girl has her German exchange partner staying – an equally lovely young man of 15 and about 6 feet 3!!  We had a house full on the first night as we hosted all the English girls and German boys & girls to help break the ice; and then when hubby arrived home Saturday evening having collected from ice skating & bowling, I couldn’t help thinking “Bloody hell, my new car really is big” as the front door opened and a stream of teens came in.

There were 16 in total – and no it turns out that the car isn’t really a Tardis – but they were followed by a steady stream of takeaway deliveries from 5 outlets.  I can’t remember when, if ever our doorbell has rung so many times on a Saturday night! I just commented on an EDS Facebook group that a huge positive for us this week has been to see our normally angst ridden teen turn into a group organiser and hostess.  We had only been expecting 6 back on Saturday, but in order to avoid some breakdowns within the group our girl sorted them all (and took over our lounge ha, ha, ha) with tact and diplomacy to ensure everyone had a good evening.  Teenage relationships can be so tricky at the best of times, but throw in different languages, exchange partners paired who ordinarily wouldn’t be in the same friendship groups, one all girls school & one mixed sex, and the probability for issues is huge!  It has been interesting to see that the mixed sex pairings – like our lovely girl and lovely German boy – have been less problematic than the all girls – teenage girls and friendships equals another blog post entirely methinks!  The mixed sex group – 4 couples – went to Thorpe Park Fright Night on Friday and had a fantastic time. Not my cup of tea but they loved it.

IMG_3477As for me I am officially exhausted, typing one handed whilst in a sling again, but am officially one very proud mum having watched my girl blossom before my eyes.  Some might say turning into a chip off the old block – and even her eldest brother commented that the social awkwardness she professes to have is just not evident for the rest of us.  Today they have all gone to Brighton – the Pavilion, fish and chips, the beach and the lanes. Whilst the fatigue and dislocation have taken their toll, I have found some more fabulous blog posts for you to enjoy.

 

 

 

 

 

So grab a cuppa, kick you heels up and sit back to read some fab pieces, all very different but all inspiring.  I particularly love the Lush products review from Katie Cupcake and the beautiful piece about friendship from Happiness and Food. Enjoy!

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Photo from Katie Cupcake Life With ME

 

https://fictionisfood.com/2017/10/14/thoughts-on-nannowrimo/#more-4179

https://www.sp-bx.com/rick-and-morty-season-3-review-the-best-season-so-far/

https://clockworkclouds.wordpress.com/2017/10/09/can-you-overthink-an-idea/

http://katiecupcakelifewithme.com/review-with-me/lush-karma-spa-treatment-event-review/

https://www.happinessandfood.com/name-happy/

https://zebratalez.com/2017/10/15/10-social-security-disability-tips/

http://invisiblenotbroken.com/blog/2017/10/4/best-podcasts-to-listen-to-when-stuck-in-bed-with-chronic-pain

http://withoutacrystalball.com/2017/10/12/day-found-family-chronically-ill/

http://www.healthyeatingexperts.com/holistic-therapist-kicked-depression-said-bye-bloat-chronic-digestive-issues-naturally/

https://livingwithme.blog/2017/10/12/all-time-low/

Please comment, share and spread some love for your fellow bloggers.

love Claire x

Monday Magic - Inspiring Blogs for You! (1)

 

 

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What are Dysautonomia and POTS?

Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).

She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means.  I knew because I have it…..but had never come across the term in my own medical career.  Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!

Please read the whole piece and share in order to help us spread awareness!

What are Dysautonomia and POTS?

What are Dysautonomia and POTS-

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little….do you know what dysautonomia is?

If you said no, you’re not alone.  Most people have never even heard of it.  I didn’t know what it was either until I was diagnosed with it.  I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia.  Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.

Despite the fact that many people have never heard of dysautonomia, it’s not rare.  It’s estimated that over 70 million people around the world have it in one form or another.  Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

 

To read the whole post visit Sunshine and Spoons 

You will also find great links to Hannah’s Sunshine and Spoons Shop

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Dear Hubby….

Dear Hubby,

I woke up this morning wondering how we got here.  If we had known on this day all those years ago what was in store, I wonder if you..or I…would have turned up at Chelsea Registrar’s office?Scan0023

But we did, and here we are, having weathered the storms, the unexpected, the joys and some dark times.  Back then it was just going to be us and your beloved Lotus 7, having been told that babies were not likely when I was diagnosed with polycystic ovary syndrome aged 20.  The first storm – for you at least – was the realisation, soon after we bought our flat in Fulham, that we couldn’t afford the parking space to go with it! So the first Lotus 7 had to be sold as leaving it on the road – even the posh road to Bishop’s Park and the Palace that we overlooked – was not going to happen.  Scan0025

Of course at this time we had no idea about Ehlers Danlos Syndrome – had never heard of it – we just knew I had a host of problems and had already undergone major back surgery and was very bendy. Life in London was great, wasn’t it?  I don’t think that brand new kitchen was cooked in very often as we dined out down the Kings Road or in Fulham most nights.  But all good things come to an end, and you began craving another sports car(!) so the hunt was on to move out of London.  Soon after the move to our first house came another joy in the shape of a second Lotus 7. But within months came probably our biggest unexpected piece of news….I went to the GP for a once over before starting a new job, feeling generally unwell – and came out 3 months pregnant whilst taking HRT.  Hmmm….that little 2 seater didn’t last long either.

There has been redundancy; more babies – including the tummy bug that didn’t go….oops! your little girl…..3 caesarians & increasing back pain; another house move to the same road as your in laws(!); hideous working hours for us both, including 6 day weeks and night shifts; increasing migraines; more dislocations; IBS; school choices; more back pain and finally on the eve of Obama’s first term in office – the straw that broke this nurse’s back!  Then a career lost – permanently.

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And 2 becomes..5

We are quite a few years on and many more major surgeries to add to the list.  Not forgetting the Ehlers Danlos Syndrome diagnosis – for me and the kids.  A life threatening illness for one of our parents and then your own health taking the full brunt of all our traumas. That was a scary time for us all to watch you disintegrate.

But…..we are here still standing – you at least! Me – I spend more time on the ground these days (laugh everyone!).  The kids had to grow up fast and have all turned out to be pretty bright (not sure where that came from), independent & resourceful – so long as we’re not talking about tidiness and cleaning!!  We have had to accept that I need you to officially be my “carer” – which I still hate – as my health declines, and this has been hard for us both having worked and earned from the age of 18.

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Look what arrived today!

But…..with a bit of juggling, fantastic parents and wonderful friends we are doing ok, aren’t we?  No we haven’t any money for holidays, and we worry about being unable to help the kids out financially, but this has led to our young adults working and earning – be it paper rounds, babysitting or writing websites! We are spending more time together as a family, you are enjoying setting up your own small venture and taking on a role at the kids’ old primary school, which has been the making of you. Who would have thought it a couple of years ago!  You never – or rarely – complain about me and I do know that on those really bad days, when the pain flares and I can’t settle, or the black dog (not Sam!) surfaces I can be awful to live with.  Plus there are the endless trips to hospitals across London and the different specialists to keep track of.

Neither of us signed up for this, but then you never know what is round the corner. In a funny sort of way maybe life is actually more fulfilling now.  We certainly both have almost encyclopaedic knowledge of Ehlers Danlos Syndrome and all that goes with it!

So back to the beginning…..it was a pretty dreary day and actually raining when we walked out as Mr & Mrs (at least I did prevent you walking me over the road to Stamford Park!) 25 years ago.  But today has been a bright, beautiful autumn day – Happy Silver Wedding Anniversary, hubby!Scan0024

love Claire x

Dear Hubby

Brilliant blog posts on HonestMum.com

Fainting for my Motability Chariot

Fainting in the car showroom wasn’t something that I had thought would be a part of my week!  We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast.  Not so long ago I was still convinced that I would be deemed too “fit” to qualify.Fainting for my Motability Chariot (2)

 

It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response!  My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!

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Image from a range of products available at http://stickmancommunications.co.uk/

Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.

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Grey really is not my best look! Post faint…

Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does.  The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week.  Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time!  But I’m upright today and so writing a very speedy post having missed out all week.

Car

My Chariot!

Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!

Monday Magic – Inspiring Blogs for You!

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I am shattered today, PainPals and those pals not in pain!  Saturday was the day for the big reunion – that is 3 decades – 30 years since we left school.  I’m not quite sure which timescale sounds better!  How did that time pass so quickly? I remember my grandma telling me to value every day as the older you get the faster the time flies…but as a youngster I never took any notice.  Put together a group of people, some who haven’t seen each other for said 30 years, but who grew up together during those important teenage years….and it will feel like yesterday.  Similar theme to last week!

I was worried on Saturday morning for 2 reasons – firstly would anyone turn up and secondly I was feeling extremely POTSIE with the shakes and snow vision and forgot to take my midodrine pills with mine!  But on the up side about 20 people turned up over the course of the day/evening….and whilst I spent the first part of the day in my wheelchair the adrenalin seemed to kick in and I was able to stand for periods in the pub, sent out for my pills (good old Duncan) and was still in the pub for dinner in the evening.  It is amazing how you can push yourself when you need to and when you want to.  I find that it is about picking the occasions wisely to use your spoons, as it isn’t possible to live like this every day when a chronic illness is your constant companion.

The feedback has been fantastic – we had a great day renewing old friendships, reminiscing (being thrown out of choir, altering the wording on the carol service leaflet, sending Valentine cards, hockey, rowing, detentions for pranks…..the teachers) but also learning how everyone’s lives have moved on.  We had doctors, a headmistress, lawyers, an acupuncturist, a sports coach, a teacher, a horticulturist, an entrepreneur….the list goes on. Families have grown..and shrunk. Life goes on!

Class of 87 pic

Class of 87

So whilst I have had to sit back due to a self imposed inability to stand, I have found some new blog posts for you.  This week we have blogging posts, a yummy looking recipe site, a musical tribute and the feelings encountered when a pet is found to be very sick.  I am delighted to report that my list of blogs I have shared here has grown to 230 and many of these have been featured several times.  What a wonderful community you are!

Hope you have a cuppa in your hand, an hour to sit back and the enthusiasm to enjoy and explore these fantastic blogs.

https://www.disabledgo.com/blog/2017/09/activists-plan-day-long-musical-tribute-to-radical-and-brilliant-robert-dellar/#.Wb7PB7KGPIU

http://www.youcanalwaysstartnow.com/2017/09/11/is-the-universe-pushing-your-buttons-deal-with-it/

http://www.blessingmanifesting.com/2017/09/self-care-awareness-month.html/

http://riverandquill.com/2017/09/identity-theft.html/

https://beinglydia.com/2017/09/17/what-finding-out-my-dog-is-sick-has-taught-me/

http://www.livingnaturaltoday.com/2017/09/heart-goes-texas/

http://raisingzebras.weebly.com/blog/brain-mri-and-the-wheelchair-arrives

https://starbrightcooking.com/21-tips-classic-comfort-cooking/

http://www.strugglingwithserendipity.com/blog/accepting-harvard

http://www.angiecruise.com/what-i-learned-in-my-first-year-of-blogging/

Please, please share, pin, like, comment to let our bloggers know that you have enjoyed and value their writing. Have a lovely week!

Claire x

 

Monday Magic – Inspiring Blogs for You!

Another week, time for another Magic Monday!  The events in our household really pale into insignificance compared to the natural disasters taking over so many parts of America at the moment.  The majority of us, thankfully, will never have to encounter the devastation that these natural phenomena wreak, but I want to send support and good wishes to all our American blogging pals who are living through this.  There is an additional blog post this week that my pal Cheryl at Chronic Mom blog wrote last week about what no one tells you about surviving a natural disaster with chronic illness – but I think that there are  probably aspects that apply to everyone!

 

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We had an unexpected trip over the weekend – hence no blog post – and as it was a long trip for this chronic bird to make in a day, we paid an impromptu visit to old friends to beg a bed for the night.  Panic not other old friends, we gave them 24 hours notice!!  We haven’t seen each other for about 5 years, yet we have known each other for nearly 30 years – we “girls” did our nurse training together and the blokes have always been hifi and gadget buddies. Not forgetting that this fellow hifi nut was hubby’s best man 25 years ago!  With just a few precious friendships the years roll away and it is possible to appreciate the long and deep connections that you have with each other. As two couples, we have had our fair share of traumas over the past couple of years – we decided we should form the “Happy Pill” brigade as we must have shares in antidepressant companies between us – but we have survived and it is testament to our friendship that we can come together as if it was yesterday!  How many people in your life can you call on and truly rely upon to be there for you no matter what?  Quick shout out here for our fab friends’ facebook page – check it out (chocolate brownies to die for) Keeley House Bakery 

 

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I have found some great blog reads for you this week including  becoming a real mermaid (just read it!), a fab book review, and using your imagination when putting pen to paper.  There is also a piece about the scandal currently coming to light about the use of mesh implants in surgical procedures.  So grab a cuppa, put your feet up and enjoy some fabulous writing in these inspiring blog posts!

http://www.chronicmom.com/2017/09/what-no-one-tells-you-about-surviving-a-natural-disaster-with-a-chronic-illness.html/

http://www.nataliemabbott.com/quitting-everything-to-be-a-mermaid/

http://moonglotexas.com/2017/09/10/book-review-death-at-thorburn-by-julianna-deering/

https://1stimeblogger1232.blogspot.co.uk/2017/09/every-scar-tells-story.html

http://www.meaction.net/2017/09/01/reading-matters-lets-hear-it/

https://dystoniaandme.com/2017/09/10/5th-blog-birthday/

http://www.amundanelife.co.uk/2017/09/anxiety-is-not-trend.html

http://invisiblyme.com/2017/09/05/the-mesh-scandal/

https://globehousesitterx2.wordpress.com/2017/09/10/a-pen-paper-and-my-imagination/

https://mindovermetablog.wordpress.com/2017/09/06/how-to-deal-with-toxic-people/

https://ginlemonade.wordpress.com/2017/08/30/when-the-accessible-hotel-room-is-inaccessible/

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Please share this post and make a blogger’s day with a like, share, pin or comment….it makes it all worthwhile.

Have a great week!

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

Hello and Happy Monday!  I hope that you have all enjoyed a relaxing weekend and are ready to face the week ahead.

This past week has offered us a smorgasbord on the world stage from the battle of words between the White House and North Korea to the retirement of possibly the greatest athlete to date, Usain Bolt.  As America’s top military officials arrive in South Korea and the leaders of China and Japan speak out publicly, let us all hope that this becomes no more than a war of words, not only for the the people of Guam, but for the world at large.

Over the last week our household has been glued to the IAAF World Athletics Championships. There have been some amazing highs and some breathtaking lows.  Athletics on the international stage is experiencing its own war at the moment: doping scandals, athletes fighting to prove that they are “clean” and able to compete,  medals being stripped and bans imposed.  The public made their feelings very clear with the booing of US athlete Justin Gatlin – an runner who has served 2 drug related suspensions and has become the representative bogeyman of all those accused of doping.

But we can also view many aspects of the championships as beacons of light in our allegory for world peace.  The final track races of sporting legends Usain Bolt and Mo Farah didn’t end as fairytales do, but instead showed these remarkable men to be human. They both won medals – just not the colour that everyone hoped for.  If Farah’s races had been the other way around and he had won his silver first and the gold medal last would this really have altered his achievements – or just the way his final race was reported in the media.  I don’t believe that anyone wanted to see Bolt fall in pain to the track rather than finishing his final race, but he showed his strength of character by returning to take a final bow for his international fans as the games closed.  Out with the old guard….but in with the new.  So many talented young people have sprung onto the world stage this week showing a spirit and enthusiasm that fires up even a chronic illness old crone like me!  There have been inspiring stories of overcoming injury and surgery, tears of disappointment and tears of joy.  For me a really memorable moment was when the Syrian high jumper realised that he had won a bronze medal, the first ever World Championship medal for his country.  The disbelief and ecstasy on his face told such a story of this man who lives and trains in war torn Damascus.  What an inspiration to us all!

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Bronze High jump World Champion Majd Eddin Ghazal Picture from IAAF.org

You must have wondered where that was all leading, but it can only be to one place – one set of inspirational people to another!  So grab a drink, sit down and allow yourself some “me time” finding and exploring some inspiring posts from some more inspirational bloggers!

http://blog.michellerosado.com/2017/07/5-benefits-of-meditation/

https://yadadarcyyada.com/2017/06/02/nobody-puts-bloggers-in-a-corner/

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http://blog.mangohealth.com/post/159941981912/dont-suffer-in-silence-why-talking-about-pain-is

https://wheelescapades.com/2016/10/31/wimpole-estate-down-on-the-farm/

http://www.writersam.co.uk/post/163802388755/the-power-and-purpose-of-blogging-and-why-you

http://www.navigatingthestorms.com/coping-skills/you-respond-plans-change-unexpectedly/

https://intrestinalfortitude.wordpress.com/2017/08/13/letter-to-my-surgeon/

https://laurachamberlain.co.uk/2017/08/07/echo-prescription-app-review-uk-an-app-to-order-nhs-prescriptions-to-your-door/

http://www.diseasecantstopme.com/5-second-rule/

https://cozyclothesblog.com/2017/06/14/what-if/#more-1312

Please remember to like, comment and even share if you enjoy these posts,

Claire x

Monday Magic

 

 

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

 

 


 

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….

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!