Retune & Reunion

Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group.  I went with mixed feelings.  Eagerness to see friends who understand me and trepidation for who the scs had been successful for.  Last May the eleven of us had such high hopes, desperate hopes.  But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us.  I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.

As it happens I needn’t have worried.  I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose.  Any suggestions out there for coming down from this final  12 hourly 5mg gratefully received!  My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet.  But I did get a retune!! images (16) On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse.  Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same.  It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting.  Win, win.  Back to the INPUT session ….

Only 3 of us turned up. reunion Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury.  It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on.  We did meet some of the participants in week 3 of a 4 week course which was interesting.  A couple of them had already had stimulators which had failed – one lady had received 2, both failed.  Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully!  Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square.  I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means  ALL NIGHT.  I’m so jealous!!

We both have similar stories, similar failed surgery and pain in the same areas.  The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things!  Who do you believe?  I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future.  Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!images (17)

Oxy…going, going

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

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

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

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

 

 

Panorama

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

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

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

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

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

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