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Pain management
#20 (In Topic #19)
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admin2 in the usergroup ‘Administrators’

Pain management

Neurological conditions like multiple sclerosis create varying levels of impairment - everyone is familiar with this.  However, it may be less well-known that they can also be associated with pain.  It may sound surprising because there is nothing obvious physiologically about the condition that would be expected to generate pain and hopefully, for many people pain will not be a problem.

For Christine, pain did become an increasing issue.  What seemed to happen was that as she lost mobility, muscles ended up contracted in permanent spasm, dragging her body out of shape.  Towards the end of her life her head was pulled to one side by this contraction and the muscles in her upper body were never able to relax.  Unsurprisingly, this led to pain!

Managing pain seems to be something over which you never win completely.  Sometimes it's better, sometimes it's worse, but I would guess we would have to go back five or 10 years to find a period when Christine was completely pain free.

As a result, pain was something we struggled against all the time.  Christine rarely complained - she was not a complainer!  But it was hard to watch and to cope with the times when nothing seemed to bring relief.

Fortunately, these times were interspersed with longer periods when things were manageable, so it might be worth explaining what we did.

Firstly, it was essential to get the seating that Christine used absolutely right.  The reason that we paid nearly £15,000 for a Balder wheelchair was largely to do with comfort.  The backrest was well padded and a Jay gel cushion was supplied by the NHS.  Chairs like this are infinitely adjustable, backrest, leg rests, and most important of all, a big range of tilt in space (the whole seat tilts backward or forward as a unit).  In recent years, Christine has tended to tip forward if her seat was too upright, so being able to progressively tilts the chair further backwards became absolutely vital to safety and comfort.

Likewise sleeping.  Christine had a profiling bed so that legs and shoulders could be lifted as required.  There was also a pressure relieving air mattress.  This did help with pain, but the main purpose was to prevent pressure sores developing, and I'm pleased to say that between the seating equipment and the excellent personal care provided, prevention of pressure sores was completely successful.

There were also really simple but vital adjustments that could be made.  A cherry stone cushion which could be warmed in a microwave supporting one of her hands made a world of difference.  Another cherry stone cushion was used against her neck and shoulder to try and counter the muscle contraction that was pulling her head to one side.

Inevitably, physical adjustments were not sufficient on their own and had to be supplemented with pain relief.  This began with an occasional need for paracetamol or codeine when things were particularly uncomfortable but moved onto stronger medications like tramadol.  For the last few years of her life Christine was prescribed Fentanyl skin patches which administer a steady dose of a very strong form of morphine through the skin.  These patches were remarkably effective, partly because there was no need to take so many tablets, hence less stomach problems, and it was also relatively easy to increase the size and therefore the dosage of the patches as necessary.

Christine did attend a pain clinic at the local hospital on occasions but sadly, this didn't seem to come up with very effective solutions.  The medication regime that was established eventually came very much through recommendation from Christine's excellent GP and from her own research.  One of the features of Christine's relationship with the local GP surgery was their capacity to listen and accept that Christine was an expert in her own care.  Their job, they felt was to support her in every way possible.  It would be nice to think that the experience of others is similar.
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