Taking each in their turn. The first two take care of the
nociceptive pain (1), elements
of the neuropathic pain (2), and the anti depressant is there to deal with some of
the numbing and tingling sensations and the sharp stabbing
(like electrical) pains and also allows me a full night’s
sleep.
They all have side effects that are not desirable. Constipation
being one of the worst, but I have found that if I can stave
off the first dose of the day, this is not so bad.
Cognitive functions are also debilitated at first, but,
with time this fades until you don’t notice it. However
I would never put myself behind the wheel of a car and certainly
avoid using power tools. As for the last drug I take this
in one go just before bed time. That way I sleep through
the worst of it’s cognitive effects and awake feeling
refreshed and not dosed up to the nines.
(1) Nociceptive Pain - that
generated by the bodies pain receptors and usually an indicator
of pain caused by a wound or damaged organ.
(2) Neuropathic pain - that
generated by the Central Nervous System, indicating damage
to that system.
This regimen is never desirable but
it works, but I was against drug therapy at the start, I
wanted them to operate and make me better. Dream on. Today
I wouldn't let any surgeon near my back with anything more
lethal than a feather duster. The good thing is that there
are many different drugs that can be tried til you find
the best one for yourself. With some painkillers they are
available in patch form – like Fentanyl.
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Pain Management
and Psychiatric Help
Pain Management really is the only
real way forward for many of us, without a real therapy
that can help us recover from ARC our situation is inevitably
going to get worse, so these specialists are our only route
to pain relief and guidance.
One aspect of Chronic Pain that many
of us forget, or try to, is that it does alter our mental
state too; depression being the most common example. Our
significant others may find us snappy, forgetful and less
understanding than we were before - changes which obviously
impact our loved ones more than ourselves, and can be very
disturbing for children especially. No matter what age they
are.
So you have to admit to yourself
that, no matter what we tell ourselves about our capacity
to handle our pain, the mind set of a person in Chronic
Pain is very different to that of other folks without this
burden. The mental and physical adjustments we automatically
make to accommodate this new life time guest are apparent
to our family and friends if not to us.
It therefore follows that, as a young adult needs instruction
about the physical and mental changes in their lives, we
also need guidance on how to manage this new person we have
become. Personally though I fought against it (as we all
do) I had to recognise that I needed some psychiatric counselling.
A lifetime's work had gone in a few
months, a career cancelled out, physical restrictions placed
on a previously healthy and robust body, these were not
small changes and the worst thing is that they are happening
to me at a time of life which we all look forward to. That
time when:
-
the kids have flown the nest,
-
the house is mostly paid for,
-
you can relax at work because
you are where you wanted to be,
-
there are no restrictions on your
physical relationships at home because the possibility
of getting caught by the kids has been and gone, and,
-
a time when the products of such
relationships amongst our own kids can be handed back
at the end of a day's babysitting.I think these are the
attainments we all dream about for our middle ages and
now they seem completely out of reach.
The total loss of the possibility
to make it come true has to have a detrimental effect on
our intellectual selves, and, no matter how much we assure
ourselves that it hasn't, our friends and families can see
it and it certainly has an effect on them too.
Obviously the younger you are the
greater the losses and the older you are the more cheated
you feel, equally obvious is that, some are better placed
in society and others not, some are mentally more robust,
whilst others are fragile. The guarantee is that any one
of the above losses will occur and, I think, we all will
go into mourning for the person we have lost - ourselves.
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Psychiatric
Assistance or Counselling
Most Pain Clinics will have a psychiatric
specialist or nurse attached who can help us adjust to our
new situation and the huge weight of pain that is compressing
our spirits. I was lucky, I happen to live with a qualified
Counsellor so I did not have the embarrassment of having
to ask for help, it came to me.
If you are like me it takes a bomb
to shift us into any doctor's firing range. You also probably
hate the idea of having to admit it when the life plan as
gone pearshaped and there is a smidgen of self doubt and
guilt because some medic has hinted that our physical situation
is somehow our fault.
Naturally that is not true and never
will be, but, it can haunt and hurt us to the same degree
mentally as our other symptoms do physically. Personally,
I have thrown the respect, which I was taught to have for
the "noble professions", out of the window, and, whilst
I recognise that it not true for all medical specialists
it is certainly true of a large number of Neurosurgeons.
All I am suggesting is that you don't
dismiss the idea of Pain Management outright or deny yourself
the real support that can be obtained with a good counsellor.
In doing so you are not admitting to any deficit in your
psychiatric make up, or in your cognitive abilities.What
you will be doing is admitting that you have had a new life
situation thrust upon you and therefore need some help to
adjust to it and bring it under your control instead of
being a victim. Think about it, that's all I am suggesting.
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Pain relief machines
There non pharmaceutical devices
that have proved to be of use for some sufferers, but I
go back to the feather duster for those that are implanted
– though this is personal choice – others may
find them ideal. So we are talking about TENS machines and
Neuro-stimulators. I have tried the first and it was not
a good experience for me, but we all differ.
These will be known to your Pain
Specialist so don't let him go without mentioning them and
do get him to go through the pros and cons with you. I hope
that from the day you found out how you contracted ARC you
have not regard any doctor as if he/she is infallible or
assume that they have told everything, they are very often
only too fallible and will only tell you that which they
want to, to do otherwise might cause extra costs or extra
work. Seriously please ensure that they give you plenty
of information and don’t automatically trust them.
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Epidural Steroid
Injections
These drugs were not originally designed
or licensed for pain relief and certainly not the Intrathecal
Space of the spinal cord. In fact the manufacturers knowing
that they are used for this purpose have included large
warnings on the Package Inserts against such use. Over the
years, and, most commonly for birthing mothers they have
been used in this way routinely.
Many Pain Specialists will recommend these to people with
Low Back Pain (LBP) long before they have any idea of what
is causing it. In fact it is regularly used before the patient
has had imaging studies carried out. More expensive again.
The net result, in my own experience,
is that they pain they were supposed to relieve either instantly,
or over time, doubles or trebles because the patient develops
ARC as a result, if they don’t already have it. They
can also cause other undesirable effects.
One of the worst is meningitis, usually
occurring because the hole in the spinal cord has not closed
properly and the patient contracts the infection from their
own skin surface, no matter how much iodine is used. The
first sign of this is a massive headache due as much to
the loss of Cerebral Spinal Fluid as the infection and the
first treatment for that headache is to inject 5ccs of the
patient’s own blood into the hole. You get 10 bonuspoints
for telling me which of the two is the worst potentiating
agent of ARC. Got it? Human blood! Give the boys in white
some "brownie" points.
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Supplements, vitamins
and minerals
Do you take any food supplements?
There are quite a few for you to consider which will may
help you. Don't forget that with your appetite down as a
result of the medication you must ensure that you are getting
the right amount of vitamins and minerals daily. Besides
these ordinary vitamins and supplements, some sufferers
are taking Magnesium and Alpha-lipoic Acid to help with
the pain, and swear by it.
I can neither recommend or condemn
any of these last two choices. What I will
praise is the flexibility of the
human mind, the way that it can bend and not break in adversity;
the strength of human vision to look outside of the everyday
for solutions to everyday problems. Maybe the beneficial
effects of taking these last two are placebo. But, hey,
if it works don’t knock it.
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External non-medical
devices
Two of the stranger devices I have
successfully tried for the pain are hot cushions. These
contain dried cereal grains. The cushion is then heated
in the microwave for a couple of minutes and then applied
to the most painful area. Very soothing indeed.
You can also buy vibrating cushions,
will ya stop with the laughter now! I have used one to help
with the sitting on concrete feeling that you get from time
to time. It worked, didn’t have the money to buy the
company though.
Drivers soother. The experiment with
the above being so successful that just before Christmas
2002 whilst out shopping for presents. I spotted a contraption
for drivers which fits over the car seat and provides a
couple of vibrating packs in the shoulder area and the butt,
besides having a warmer placed about the lower back. It
was only £30, well within the budget, and has proved invaluable
since and has, obviously replaced the two above. Hope you
got this far!
Shopping naturally has it’s
own delights for the ARC sufferer – "Will ya get me
outa here before the next person who hits my ankles with
their trolley ends up taking a flight!" – sort of
thing. Now, in a lot of places in the UK a scheme called,
"Shop Mobility", provides those disabled scooters for shoppers
to take the weight off of your feet and the strain from
your back. If there is not one in your area campaign for
one. It is government funded.
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Alternative, or,
Additional Therapies
On your own initiative you could
also try acupuncture, hypno-therapy, reiki healing (I live
with a healer - helps me loads), cranial sacral therapy
and hydrotherapy, these are just a few of the alternative
treatments which have worked for some and that may help
in addition to your medication.
I personally recommend the last one,
it is a doddle, just take yourself away to a hot/warm pool
in hot/warm surroundings and float around on your back for
a half hour or so. You just won't believe the difference,
just don't allow yourself to get cold at any time, that
would ruin the whole effort. It is probable that, if you
ask, you will find that there is a hydrotherapy pool in
your area.
I have also used Osteopaths and found
that they can help by keeping the muscle structure of the
back supple, just be careful to ensure that they know all
of your medical history before they start. I have used it
on a weekly basis and it certainly did help me, as did the
hydrotherapy.
Obviously none of these can cure
you or take away the entire pain burden, but they can assist
you. Even if they do nothing more than help you to relax
it would be a positive step forward.
Obviously there is a cost factor
in all of these and probably the hydrotherapy would be the
cheapest and easiest option, usually there is a centre for
the disabled in most areas and they tend to have these hydrotherapy
pools. Maybe with better access (I live way out in the sticks)
you could fit in a half hour a day, if it works for you.
What ever you choose to do, remember
to inform your doctors about it first. It is all right me
prattling on about it over an internet connection. I don't
see or experience your suffering at close quarters, they,
I hope, do. I just don't want to lead you down a dangerous
path.
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But we are not
finished yet!
Now the solution to remaining able
to work longer is going to be found through dissecting what
you do each day both in the workplace and at home. Note
down your observations and tackling them head on see what
you can replace with an easier methodology.
I can promise you with great confidence
that this does work, we ran such a scheme in my old factory
and it made us far more efficient than before. I always
recommend it for those who are already disabled and at home
as a way of reducing their daily pain burden. I therefore
think it is essential for anybody who needs to remain employed.
You can start to tackle the pain
head first by examining your daily work routines and your
daily chores at home with an eye to identifying and then
reducing those movements and/or actions which generate pain
for you. I have gone through everything I do step by step,
examined those steps which generate pain and planned them
out of the task.
So it sounds like madness when written
down, in a kind of, "How do I get that out of the fridge
without bending?", sort of fashion. But it can be a process
which will almost banish pain causing actions, in some instances.
As an example of how it works at
home. With Jude at college, I do a lot of household stuff
and carried out such evaluations almost automatically. It
certainly helped.
Furniture got moved around until
it was positioned in such a way that I did not have to move
it when hoovering, where it did have to be moved we fitted
wheels or those moving coasters on the bottom. Now I can
simply shove them out of the way.
Another example. The hoover we had
was a dead duck and needed a lot of physical input from
the operator to get the job done, so we went out and got
a new one which was an instant improvement. We also moved
the position the machine was left it because it meant having
to lift it up a couple of steps. Obviously we are all different
and your specific situation might not mirror my own or you
will not have the financial resources to purchase new devices.
However, if you don’t try it, you will never know
if it works or not. Feedback to me please.
If you are still working this next
paragraph will only work if you have a sympathetic employer,
remembering that the process can be applied to any job and
that includes sitting down and typing all day! That too
has it's trigger areas.
It would be my instinct to tell my
employers about my situation and that I want to continue
working. If your employer reacts positively then he or she
will be as concerned about your safety in the workplace
as you are. I don't know about your state regulations but
in the UK employers who take on disabled people, or who
keep them on after finding out they have a disability, can
claim some money back from the state. So if an incentive
is required you could find out about such schemes before
you air the problem with that in mind.
The main advantage for employers
is that these analytical exercises also have the spin off
benefit of making many other tasks more streamlined, easier
to complete and, as you are not in pain carrying them out
then he is assured of your full attention to the job. A
negative reaction could indicate that he is not the boss
you want to work for. But that is up to you to decide, I
don't even know what you do.
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Changes to your
Home
Now these are some suggestions about
the home environment and again are simple and pretty easy
to carry through. Firstly, ensure all electrical sockets
on the walls are at waist level, an immediate improvement
on the amount of bending down to be done and you don’t
need to rewire place to make it work for you. Most of those
extension cables you see in electrical stores have placements
on the reverse side for hanging them up.
Ramps at entrance and exit ways are
easier for a person in pain to cope with, steps are a nightmare.
In the UK these ramps and hand rails can be installed for
nothing by the Council, contact their Welfare Officer to
get the ball rolling. If there are enough rooms, it might
be an idea to use a downstairs room as a bedroom, cuts out
a huge obstacle - the stairs.
A level entry shower, again no steps
to negotiate and an investment for the future when a wheelchair
might be in use. Some councils in the UK do provide funding
for these too and some other disabled devices which we discuss
further down. However, that funding only covers two thirds
or three quarters of the job and the disability equation
has pushed costs upwards, I cannot afford it. What I can
afford to do is change the taps for a mixer unit and a shower
head, all I then need is something to sit on and a Jude
to ensure that I don’t go base over apex getting in
and out.
Move the storage facilities to a
height between waist and chest that you can reach them easily.
The refrigerator - move all the stuff in daily use up to
a level you can easily cope with. Those are just a few ideas
for reducing pain generating tasks in the home, I am sure
you can and will come up with a footlocker full of others.
In order for yours to help others
please email them to me for inclusion on a page of such,
"Tips and Tricks", including that term in your subject line,
obviously your name and not mine will adorn your own suggestions.
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Grabstick/Walking
Stick/Orthotics
I have also equipped myself with
a grabstick. This is a key component of my strategy for
coping with life and helps out with many tasks, you just
won't believe how much you can do with such a simple aid.
Besides using it to pick up stuff I also use it to help
me load the washing machine and also to unload it and hang
it up. It picks up the empty dog's bowl for me to fill,
helps me get stuff out of the refrigerator and the dish
washer. It even helps me to put the dog out! So go get one,
they should not cost a great deal.
Other gadgets include a Sock Dresser
and a long handled shoe horn. Both can take the pain out
of getting dressed..
What about a walking stick? I know,
it grates but read on. In my own case I found that walking
around outside I felt uncomfortable and unstable, I had
previously fallen down the stairs in my cottage, and was
terrified of the same thing happening outside of the house.
A friend of mine ran an antiques
shop and he had a few sticks in stock, nothing expensive
(between £10 and £20), he let me try several until I found
one I felt comfortable with. Then I checked that out with
my Physio who gave me a rubber stopper for the end of it,
very important that - seriously - if you're going to lean
on the damn thing the last thing you want is for it to slip
on a shiny surface. The end result looks a great deal better
than the ones they give you in hospital and you can ensure
that it looks suits you. It gives a person in pain a great
deal more confidence when they are out and about.
One word of warning though. Don’t
walk with it as if you have a limp, most of us don’t,
otherwise you will develop one for sure and that limp will
alter the muscle structure in your back again. Not recommended.
Whilst we are talking on walking,
I also use Orthotics in my shoes, I find that they make
me more aware of where my feet are and help me keep a good
posture, something which I feel is very important for Arachnoiditis
sufferers. I got mine through one of the TV shopping channels,
I think they cost me $25.
Remember that good posture is as
much a factor in avoiding scoliotic changes in your spine
as anything else. So simply by sitting and walking with
your spine in a good position you can avoid pain.
Pain Management. I strongly urge
you to explore them all in order to arm yourself with as
much knowledge as you can. There are also some support groups
and notice board sites such as Cofwa and the New MSN ARAC
site, these are great to explore but don't get tied up with
symptom swapping you could
end up with far more than you went in with!
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