Another Pain & farewell to brain fog

#chronic pain #chronic illness

Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can.  Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on.  So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem.  Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said.  Do you think he did?  Eventually I received a text with one word……MORPHINE!  What does that mean, Olly??

My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak.  Allegedly the most acute pain and akin only to labour.  When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it.  Oliver expressed his concern by reading his book!  The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder.  A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!

My news is that I’m a week off the opiates.  HURRAY!  I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year.  Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on?  The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write.  The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects.  But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese.  I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth.  This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want

My GP was surprised when I told her my news this morning.  She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going.  It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet.  But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter.  Good riddance brain fog!images (1)

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??



Perry nice garden

images (7)Sunday was a beautiful day and the garden called, loud and clear, as we have an abundance of pears all over the grass.  Obviously picking up pears was not going to be my job, but that was easily delegated – with some resistance.  Duncan has been doing a good job of turning the garden waste wheelie bin into a perry cider vat. I thought maybe I could manage some light gardening on the raised flower beds in our very steep garden.  It is so hard sitting back and not doing jobs that I can see desperately need doing!  Gardening has been a tricky one ever since my back problems came back to haunt me as, other than the grass, I have always been the gardener with some help from my dad at times.  So it has been really hard each summer since I stopped work as the rest of the Saul household are unable to understand the concept of digging, weeding, hoeing, cutting back and generally cultivating the garden.  There have been more rows about the garden than anything!

So I turned on my stimulator slightly higher as there was a nip in the air, and headed out to do some weeding.  The cold was irritating my nerve pain immediately, but the stimulation meant that I was able to stay outside for a little while, even if I wasn’t able to actually do much! The digging and reaching was actually beyond me and I was exhausted so quicklpearsy – I guess that I have learnt my lesson as everything was so painful last night.  Everyone always says we medics make the worst patients!  Guess what I spent the afternoon doing?  Watching rugby whilst peeling and cooking pears, pears and more pears.  In fact if anyone local would like some just shout!!

Today I have really struggled with pain and my wound sites are so sore.  The implant site has become very bruised and it is possible to see the outline quite clearly beneath the skin – it is really sore if anything catches it.  I hope that with time the tissues will settle and no longer be painful, and that adequate scar tissue forms at both sites to hold the stimulator battery and the electrode leads well in place.  It is a tricky balance with the pain control at the moment and one factor is I’m on a reducing dose of oxycontin – double strength synthetic morphine, known as hillbilly heroin in the States – so I’m unsure quite what causes increases or decreases in “my pain”.  At times the stimulation, if not strong, actually feels like it is adding to it as my leg feels alive with movement, and I just need everything to quieten down.  Strange when at other times, it kills it dead!  I have to emphasise again, it isn’t a cure.  But several of my friends from St Thomas’ are due to have trials imminently and I don’t want to discourage them.

Meanwhile we have stewed pears, poached pears and a rather good pear and chocolate upside down pudding that I rustled up………