When one is diagnosed with a chronic illness or terminal disease, there are many things that you are informed about. Unfortunately, there are also many things that you have to find out on your own. Most diseases follow a path through the body that is predictable and common to such an illness. Unfortunately with MS, there is no path of predictability which means that everyone experiences the disease differently. One common article of contention within the MS community and the medical professionals at large is the discussion of chronic pain.
Long before I was diagnosed with MS officially and whilst there
were several symptoms of the disease that I had been ignoring
occuring within my body, pain was something that I had been
experiencing and ignoring as I had just perceived them to be due to
my job or my age. Small aches and pains that didn't quite have a
reason to be there. Little constant pains that would pop up randomly
and would then go away without any sort of changes in my behavior. I
tell you, not everyone will experiences things like this, most will
feel some type of pain in their body that they will most likely be
able to trace to a movement, or misstep, or fitness and lack thereof.
What I am saying is that not every little ache and pain that you may
feel should be indicative of some horrible illness and may in fact
just be you getting old and out of shape. So, stop reading this blog
and get outside and do something physical! Ok, I am ready just
kidding there. Keep reading! I need more readers!
What I have noticed personally; since I have yet to find the
secret formula to place myself into someone else's body, is that I
have some consant pain but there is nothing that seems to be able to
remedy it. I have a pain medication patch that is on my body 24/7,
but I can still feel the pain brewing in the background and more
unfortunate than that is that the medication does nothing to stop the
spasms that are constantly occurring throughout my body and only work
to contribute to my overall pain. Such a vicous cycle, don't you
agree. I am able to ignore most of the pain. Then the spasms progress
and get to the point where I am in tears because they cause pain
everywhere in my body and I know that I can't ignore it. So, I hope
that there is enough medicine in my bag of tricks that I can mix to
make it all stop. Let me just make a disclaimer here: DO NOT TRY THIS
AT HOME. Or work. Or at the park. Or in your garage. You get the
Mixing medications is a BAD idea. I don't care if you are a
“nobody” or a master surgeon. This is just plain dangerous. Now,
with that being said, this is something that I do on a nightly basis.
Part of the reason for this is that I have discovered over these past
few years is that I have a terrifying tolerance for medications. In
the little more than 3 years that my doctor and I have been working
dilligently to manage both the spasms and the pain, we have gone
through almost every type of medication that is available without
rendering me completely useless to the awakened world. We have used
everything in the non-narcotic category before we finally had to move
to narcotics (which was the last thing my wife and I wanted to do).
We have done this with pain management medications as well as those
used to control the spasms. Unfortunately, as it stands now I believe
that we have met the effacacy limit for the meds that I currently use
and thus must now try to discover what the new medications will be
and see how long it takes to get them right.
On the opposite side of the spectrum, I have heard many stories
from others with MS whose doctors immediately want to treat them with
medications. Before the doctor has done anything other than an
initial physical, they want to start giving hard pain medications to
the patient to “manage” their pain. Neither the patient nor the
doctor have enough of a relationship together to know what, if any,
pain the patient is in. When I first began searching for answers to
my symptoms, this was the first type of doctor that we encountered.
Barely asking any questions, and doing no physical exam whatsoever,
offered me “pain drugs” immediately. When I told this doctor
several times that medications were not at all what I wanted, but
rather wanted to know what was going on with my body, he still
refused to comprehend what I was saying and just continued to try to
prescribe strong pain drugs. At this point my wife had to physically
stand in front of us to keep me from becoming too upset and doing
something stupid. These types of doctors are unfortunately all too
common when it comes to the world of MS and the like diseases.
Thankfully, we were able to get a referral to a specialist from
this doctor's office which led us to my current neurologist which has
been with me since the very beginning. When we had our very first
consultation I made it extremely clear to the doctor that I did not
want any medications, and instead was seeking a diagnosis as to what
was happening to me. I think this came as a surprise to him since
just as there are doctors who wish to give drugs without reason,
there are just as many, if not more, patients who seek medications
rather than a true diagnosis and management method of their ailment.
However, when you put these two types of people together, the only
result is mistrust, deceit, and in the end death for the patient.
These types of people are the ones that make understanding MS and
pain so difficult within the medical community because although one
may be able to outwardly see physical MS symptoms in a person, seeing
pain is not truly possible and relies solely on the patient.
In conclusion, I write this as the topic for this month's blog as
I find myself in constant pain and find that although I never wanted
medication initially, I too was unaware of the level of pain that
comes along with MS as the disease progresses. Now that I have been
living aware of my disease for these past 4 years (almost), I realize
that there are many questions that will never be able to be answered
merely by reading other MS-ers accounts of their illness. What can be
gleaned by reading and research though is an insight into the many
different ways that this illness affects those with it and how many
have dealt with it both in management and in maintenance. These accounts can also give an insight into ways that you might live with
and deal with MS as it pertains to you. Or, as I have discovered
through my own twisted way, different things within the MS world that
can cause humour, comfort, perspective, and the medicinal power that
only laughter can bring. For as I have always said, this may not be
the life that anyone ever imagined having, it is something like it.