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Hello

Welcome! Lenkaland shares my adventures in creative photography, raising kind children, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

Do You Know? CMT and Exhaustion

So I've read a lot of fact sheets and brochures about CMT.  They are all well thought out and scientifically documented, which is great.  But I saw a post yesterday on a forum where a person with CMT was venting.  "The doctors don't get it," the writer said, "CMT is serious and painful and can lead to death because it can affect the nerves that control the diaphragm and breathing.  CMT is not a mild, slowly progressive disease." I'm paraphrasing because I don't want to start any arguing with the poster on the original forum.  CMT affects everyone differently.  However, I believe serious components of CMT are often left out of the fact sheets.  Maybe because they are hard to quantify scientifically, or there is not enough data to connect cause and effect.

At the same time, when I was diagnosed, CMT was all about hands and feet.  I had (have) scoliosis which the doctors said was unrelated.  Now scoliosis is connected to CMT.  CMT is bigger than peripheral nerves.

I am not a scientific site so I can make social connections.  My Did You Know observations come from years of participating in forums, reading blogs, and going to support meetings.  These are questions that come up again and again.  Yet are still considered outside the CMT experience on many fact sheets.  It's time to document the whole of our challenges.

And it matters because we can get better treatment if we have these symptoms included in the CMT profile.  Right now insurance companies deny me valuable anti-fatigue medicine because fatigue is not considered part of CMT.  Yet every single person that I talk to about CMT and fatigue knows exactly what I'm talking about.

We can also plan our self-care better if we consider known challenges of CMT.  If we include pacing and lots of downtime into our day, we'll won't aggravate symptoms as quickly, or push ourselves towards injuries.  Naming it and owning it allows us to accommodate it better.  So, CMT and exhaustion.

In my interviews, every single person mentioned the 'payback' factor of overdoing activities.  And overdoing activities may be as simple as standing for 20 minutes.

Something that Nate said has stayed with me.  He said, "It feels like there are two parts of CMT.  The physical challenges and the exhaustion."

and at the end of today, I am exhausted.  Part of real life, off to bed :)

planned but I have field trip with Anika tomorrow and work on Thursday and Friday so it may be the next couple of weeks :) -Do You Know?  CMT and injuries, circulation (not tolerating cold and/or heat), and pain (nerve pain, joint-pain, unexplained pain) . . . ?  what do you think?  Comment below with ideas :)

Ian

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