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

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.

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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

 

A Park Visit – Daily Prompt : Glimmer

Someone opened the door today

And out I went into the world.

The sky was grey and the earth was wet

A chill in the air permeated my bones.

Nerves and joints hurt so bad

The titanium inside felt icy cold,

Pains misfiring and doing battle

With the pulses of current sent

To stop them in their tracks

From the electrode sleeping

Against my spinal cord.

Someone fought the cold todaySONY DSC

As the park cafe beckoned,

A small alcove housed my wheels

And provided shelter.

Whilst an external heater,

At the lightest touch of a switch,

Spilt a glimmer of light and warmth

To wrestle with the cold world.

 

Daily Prompt – Glimmer

 

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

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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One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic

Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began.  Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial.  Just over two years ago I became the recipient of an implant.  So much has changed in this time.

The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage.  Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. File_000 They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature.  I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.

All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!).  So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick!  Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly.  Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty.  She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to.  Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain.  I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.

Rusty body

So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too.  At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine.  The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue.   But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily!  So when the nurses express surprise to see me so altered,  it won’t be because the scs isn’t working – would I have it done again?  In a heartbeat as it has given me  a way to manage some of the pain.

But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain.  They might not be able to get rid of the rust, but will report back when I am wired for sound!

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

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

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

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

SONY DSC

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

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

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Blue POTS fingers

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

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

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

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

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

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A year on out for Lucy’s birthday

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With 3 generations….birthday girl with mum and grandma

 

Day 1 R&R

The procedure was one of the strangest experiences – and lets face it, I’ve had a few ops over the years.  The first difficulty came when the operating department assistant (ODA) asked me to jump up onto the operating table – and then lie on my stomach.  A near Olympic feat for someone with back pain, a dodgy leg and foot drop!!  The consultant allowed me to choose which type of trial I opted for – explanations later! – and so began the placing of tunneled electrode leads into my back with arrows drawn in marker pen.  I was asleep for the actual placing of the leads and then woken up to assess if the electrodes were in the correct area of the spinal cord nerves –

“can you feel that, Claire?”

“No…” still feeling very groggy

“How about now?” to an immediate pulse of the strongest pins and needles you have ever felt.

“Yes, but it is in my stomach and around my ribs” Fully awake now!

“Think we need to change something here, team!”

And so the currents to the various electrodes were played with until the feeling was covering my leg, my foot and my back.  I even have some coverage in my good leg and this is with just one lead.  For those of us who have been patients on the St Thomas’ pain unit, we know that this is something special having been warned that it may not be possible to cover pain in more than one location.  In recovery I was reminded how to use the temporary battery and charger, before returning to the ward – I was in theatre for about two and half hours and another half hour in recovery.  Of course thoperation_1533715e medics never commit to a timings but I believe that a trial can take anything from an hour to several hours on the operating table.

Back on the ward I needed to complete every surgical nurses’ post operative list – the obligatory cup of tea and sandwiches – Ben, you were dead right – check, trip to the toilet – check, be up and moving – albeit slowly, check!  Then TTOs (medication to non medics – antibiotics and pain killers) arrived and I was free to go.

The trip home to Surrey on Friday evening through rush hour London traffic was not easy.  My back was starting to really hurt from the surgery as the operative drugs were wearing off, but I used the stimulator for my chronic pain – it is important to be able to distinguish between the two, not to use too much medication for the surgical pain and thus to be able to understand if the stimulator is working for the chronic pain.  Clear as mud to some of you.

My wound was bleeding after the journey, but I talked nurse Duncan through applying a new dressing over the original – it was drummed into us that it is very important not to remove the original due to the risk of infection – enjoyed some dinner and settled later for the night.  I used the stimulator before settling, as they should not be left on whilst asleep, and had a pretty good night for me!

Today has been quiet, a bit sore and I have been experimenting with the stimulator.  So far, so good – the feeling is the strangest thing, and until the lead beds in a little it is quite positional, so I am experiencing sudden surges of current. At the moment I’m wary to say whether it is definitely going to help me, but I think that for me the electrical sensations are masking the nerve pain and are preferable.  So fingers crossed, everyone, I’m cautiously optimistic.

Thanks for the words of support – I will post some more info about the actual spinal cord stimulator for anyone interested, and some musings about living with chronic pain, along with updates on my recovery and the future plan of action.cropped-girls.jpg

So, here goes……

“Why do you want to write a blog?” was my teenage son’s reply when I asked him to set this up.  That’s as good a place to start as any.

On Friday, tomorrow, I am due at Guy’s hospital brightand early for a neuromodulation trial – the implantation of a spinal cord stimulator (a  sophisticated internal TENS!) to help combat the chronic pain that I am suffering. I have read and watched various accounts online of other people’s experiences, but I want to try to put into words how this experience feels for me.  I would like to share my journey (at risk of sounding like I’m on X Factor) with my friends and other fellow chronic pain bods – you know who you are – all to be known as my Pain Pals!

I will try to update you on my progress regularly, as well as adding elements of my history and the often strange and laugh out loud moments of a body disabled by pain.

So back to my son’s question……I think that I am writing as much for me as for the rest of you.  To help to inform my friends and family, to get my own thoughts and feelings out and, if I can, to help anyone else out there who is living with chronic pain.

Nil by mouth shortly, early start tomorrow morning.

Thanks for joining me,

your pain pal,  Claire