Saturday, March 12, 2011

And With It Comes Pain...

Sometimes I feel like I'm standing on the outside of discovery...watching and waiting while new developments happen in CMTA research, amazed at how much further we still need to go to raise awareness of Charcot Marie Tooth Syndrome.  This doesn't just mean raising awareness in the general public, so that understanding and acceptance may grow.  That is only a small even larger part is the difficult task of raising awareness of CMT within the medical community.  This includes all facets of medicine--neurologists, orthopedists, general practitioners...the list goes on and on.  As a patient, if you were to say to any one of these professionals "I have Multiple Sclerosis" you would most likely not hear responses such as "What?" or "I've never heard of that..."  I know that it sounds implausible, but I am here to tell you; I've heard those statements when I report the fact that I have CMT...more than once.  That is not to say that doctors wouldn't still need to do some research on a disease such as MS, in order to provide a patient with the best care possible.  That is exactly what should's when such practices don't occur, that it becomes frustrating.

That is one way in which people with CMT still have a big fight on their hands...despite the fact that this disease was discovered in 1886 (125 years ago,) by three French doctors: Jean-Marie Charcot, Pierre Marie and Howard Henry Tooth, there is still so much misinformation and lack of knowledge within the medical community.  125 YEARS!  It is just amazing to me that in all that time, we are still standing on the brink of knowledge...fighting against this misinformation, misdiagnoses and a lack of progress.  I don't envy the CMTA its task of improving this situation, which is why I feel the need to help wherever I can.  Recently an e-mail made its way through the CMT community, asking for people's stories about pain.  You see, right now there is another form of misinformation to be squelched among medical professionals: the belief that CMT causes no pain.  People with CMT are actually being told that the pain they are experiencing has nothing to do with their disease, that it must be caused by something else.  So I pose a question to all my readers out there, because I need help in understanding this latest development...and my question is "WHY is this even an issue??"  If you have a person with CMT, a diagnosis that most likely took years to be determined, why would you not listen to them?  Why would you tell them their pain is due to something else, or worse...that it's 'all in their head?'  If your patient has a disease of which you have limited knowledge, isn't it your duty as a medical professional to search for the answers, and admit when you don't have them?  You may be familiar with the Hippocratic Oath which is an oath historically taken by doctors swearing to practice medicine ethically.  I ask you...isn't the act of listening to your patients, and searching for answers (when you don't have them,) the very definition of ethical?

And so I share my story of pain...because it is something I have lived with for more years than I can count.  It is real, it is is sometimes so blinding, all I can see is white-hot nothingness until it passes.  And it comes in many forms...some are more tolerable than others, and just cause me to grit my teeth and move on.  Other kinds of pain I have experienced reduce me to tears that are uncontrollable, and embarrassing...and when they finally stop I grit my teeth--and once again move on.  It may be hard to believe after reading this that I consider myself fortunate...because of the many things I have found over the years to help me, my pain has been greatly reduced; the braces, which improve my balance and posture, causing me to walk more efficiently and not run into as many walls, while helping me to stand up straighter (no longer hunching my back.)  The pool therapy, which has strengthened my muscles so that they are less inclined to spasm and cramp...especially improving my core, so that my back is less likely to go out.  Don't get me wrong...I still experience these moments, though the frequency has decreased dramatically.  While there are other forms of discomfort I still live with daily, such as sharp nerve pain and muscle aches in my hands and arms, after I type too much...or struggle to open something...or lift too many pounds.  I still struggle with back pain, though some days are much better than others.  Probably the hardest and most frustrating thing I have to deal with is what I feel when I bang my hand, or arm, or hip into something such as a car door or a desk...those moments bring on the tears I can't control.  When you've lost muscle because of atrophy, there is not much to protect you from the 'elements' so to speak...when you bang your hand into the end table reaching for the phone, or your toes on the edge of the bathtub stepping into the shower, that's when you are blinded.  And there is not much to be done about that, as that protection against those bumps and bruises is gone.

It is my hope that this story about pain and the stories of many others with CMT will be shared with the professionals...that even now, doctors from all different fields of medicine are reading these stories and hearing about our experiences.  To all of you within the medical community; I implore you!  The time is now...your patients are coming to you with the trust and faith that they will be heard.  If you don't have the answers, be honest with a person with CMT, I am always more impressed with the professionals that admit there is still something to be learned.  Hear what your patients are saying, and never dismiss...they deserve a voice, and will have one through you...if only you are willing to listen.


  1. Go girl! I hope that many medical professionals will be able to read this and learn something from it. Medicine has come a long way but there is still much that medicine does not know; you are a voice to help them learn.

  2. You'll have to excuse me .... as I ponder how to start this commentary .
    I wonder to myself , how aged is this soul that we know as Christine ? A beautifull , charming , ever smiling to the world , and ever ready to lend a helping hand woman. But, also a seasoned warrior , one with grit and conviction ,that will let no obstical in her path, sway her from the mission she " knows " she must take upon herself, and see it through it's difficult course ! What better Champion,
    then one who bares the scars of battle?
    Having been to many many doctors and hospitals ,I dare say if a proffessional were to ignore me , tell me my pain was "in my head " , or that " It just wasn't there .....well I can't print the outcome !
    I'm sorry for your pain , and yet have seen your courage in hiding it, and going on in public when indeed you were most likely not doing well . Were it possable that I could shoulder your pain , I would .
    Continue your fight Christine , keep us , your readers, informed as to what "WE " can do to help in your fight .I believe in you , as I believe you have that "Warrior " in you , as much as your "Faith " and " Confidence " .

  3. Forgive me as I try to start this commentary .
    Having read this , I now look upon Christine, and wonder the age of her soul ? For somewhere in there was once a great warrior, with the strength to win battles , and over come obsticals that would befall the commoner. A warrior spirit full of fight not for self gain , but to champion others . What better Champion then one who has the scars and pain of those she fights for !
    I have been to many many doctors and hospitals , and if I were told my pain was not there / or in my head , or not paid attention to Gabrial, the walls would be coming down !
    I'm sorry for your pain Christine , and for all those who suffer in silience with " CMT " because the "MEDICAL WORLD " isn't listening.
    But you , the Warrior , getting out information , working with other " CMT " groups , making people aware , and your voice heard .....that's how wars are won !
    You must keep us , "YOUR READERS ", who back you and support you , aware of what we can do to help you in your cause . Christine , you're a Champion for your cause , and yourself . Keep digging down to find that "Warrior " , and you'll keep winning battle , after battle .
    I'm very proud of you .....

  4. Christine,

    This was difficult to read, a heart wrenching plea to doctors to pay attention and listen. Perhaps you could print this out and have copies to hand out to practitioners who need to read it.

    I'm fortunate to have found a great neurologist, who not only understands that CMT is painful, but always asks me about my pain and offers suggestions for help. I have found that Lidoderm patches for the nerve pain in my arms/feet are very effective. For me massage works wonders as well. I imagine you have already tried everything.