Craft Forum / Textile / Sewing / July 2009

Well, I take Arthrotec 75 twice a day, plus up to 1000mg per day of
either paracetamol or ibuprofen on an ad hoc basis when I need it.  I
was on amytripteline for a while, but I cannot manage the side effects,
so all that class of antidepressants is out (they are used in low doses
to help break the insomnia'pain/insomnia/pain cycle.  Unfortunately, the
effects wear off after a few moonths, so the dose needs to be
increased...  After a while they start assessing you for liver damage!
I opted to keep a bearable level of pain, all my neurons working{I never
got over the chemical lobotomy effect!], and a healthy liver!).  Other
than that, I just grin (or grimace) and bear it, and increase the
Arthrotec dosage for a few days if I need to.

I also take gloucosemine twice a day, and evening primrose oil (which
was prescribed for another problem, but seems to help keep the joints
going as well).

Other than that, the key to staying out of a wheelchair is exercise!
Yes, it hurts.  Sometimes it hurts a lot.  But so long as I keep doing
regular exercise (I swim 2-3 times a week, and more in the summer when I
can, aiming for a mile in the hour each time).  I also do a certain
amount of stretching exercises in bed each morning before I try to get
up.  I also walk when I can.  I need to do more walking to strengthen my
thigh muscles, which helps support my kneecaps.  I have something with a
long and complicated latin name that basically means 'wobbly kneecaps',
about which nothing can be done except keep the muscles working to
support them.

The one thing that fails to get through to huge numbers of fibro
sufferers is the importance of diet and exercise.  You need to keep the
weight down in order not to stress the joints (as wilth any arthritic
condition, excess weight exacerbates the problem), and keep moving so as
not to let the muscles atrophy.  It hurts to do this, and a lot of
people are scared of the pain, thinking it will damage the joints
further.  It won't.  It's not that type of arthritis.  And I'm a lot
more scared of letting it criple me than I am of the pain.

As a comparison, think about having tennis elbow - in ALL your major
joints!  If I stop doing the exercise, I get like that in a couple of
weeks.  If I keep doing it, other than the odd flare like the present
one, where I feel like I have housemaid's knees, tennis elbows, and
tendonitis everywhere else, it stays at an annoying dull background pain
level.  More than an ache, but not a serious ouch.

I have occasionally had a very localized flare in one joint: last time
it was a thumb joint, which gave all the symptoms of my haveing broken
or dislocated the thumb to palm joint, without having a taumatic even to
trigger it.  X-rays confirmed my personal diagnosis, and I was given a
heft diclofenac injection and 48 hours of extra strength tablets to
take, which sorted it out and I've had no more trouble with that thumb
than any other joint since.

The real bugger is when it flares in my hands and I cannot sew, or I get
one of those energy-sapping episodes and the fibro-fog depression sets
in: it's a bit like a serious old fashioned London smog of the soul.
More than the pain, THAT will stop me swimming, as the exhaustion sets
in.  If I catch it in time, a good swim on a lovely warm sunny day can
head it off.

As with any chronic condition, half the battle is with the mental side
of it rather than the physical.  If she hasn't had one in the last 3
years, support an application for a pain management course.  It helped
me a lot, and I need to go back and have a refresher.  The pain
management nurses often have great ideas for different drugs to try as
well as other non-drug related management strategies.