CMT and Pain

There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain.

According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."

Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! 

It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page.

I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individuals from all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.

Over 1,000 professionals during one of the sessions.

I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.