Sunday, February 9, 2014

Pain? Or pain in the ass...

    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 picture.
    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.

1 comment:

  1. Dear..pain? or pain in the ass auditor
    I really like so much your article, it is amasing how to you persist indirectly on readers of you article, to answer you or to discuss with you about something very special in order to peseuade you either to endure this amount of pain, what you have alrady or to to expect more coming pain on you in the next following days. My suggestion ist first to look at what you are doing now, concerning the pain, the medications and you, in otherwords the relationship between you and, the pain and the medications.As I unterstood you have been living with this pain since years. I try to believe you now that this pain is very strong, aching and unendurable. To unendurable is not right , because you are still living, so it a painful pain, Ok, agree? I think pain has a lot to do with us, it is called pain, because it pains us, if it does not pain us, then it is not a pain. Please let me share two important persons in my life in this discussion. Years ago, my came back from work at night, he was annoyed and unhappy and asked my brothr to give aspirine because he had got a headach, but my father never took aspirine in his life, specially before that time, my brother knew that and he did not want to refuse to give him that, themn he gave him asweety bonbon, he told him quickly to swallow it otherwise it will not help him, then after minutes he started to feel better and even very good, then he left and he was sure what he took was aspirine, but infact it was just a piece ofbonbon.Any way, so this was to see the influence of ideas on the brain, which later by thinking and kocking the thought to become a ready dish of pain, I agree with you that there are moments, wherre this formula cannot exist, when therre ist a severe pain around a wound, or during bleeding and similar thing like that. But most of the pains what the human beings carry, feel or smell are all coming out of the brain or coming from the unconscous part of the brain to move later to conscous part of the brain, for me this process ist like cooking and putting later the spices and peppes on the dish of pain. I have exerienced in my life years of pain, but believe me I found it is much more easier to endure or to stand the physical pain than the psychological pain. At that moment i Call it depression, frustration and misery which i never wish them to any body on the earth. The secon person is actually my wife, who is all her life taking about pain and she is not fine, she takes daily different kinds of medication, she knows a lot about pharmacy and what you need for what why and when. I alwys tol her to stop talking about pain and medications and she is not fine. But she does not listen to me, because she does not believe me. Lately she changed a little bit her mind about me and started to talk less than before about pain, once in the back,once again in the head, once in the stamach. But life goes on like that. I advice you to engage yourselve with something nice, something amusant, something let you forget the idea of pain, medication and at the same time something moves you forward toward your target in you life.