pain

[Guest guest]

Alisha here,

As I was reading the pain posts, I couldn't but help think to my own

suffering. I feel that everyone here has shown that there is pain and it all

affects us differrently besides we all have different types to being with.

For myself, I don't always post because of this weather now more than ever

its making my hands feel really funny and they get really cold but I do read

everything that's posted because I really feel connected to this group like

another family only this family knows CMT better than anyone. I am 18 and

have had chronic pain from my CMT for about 3 or 4 years now. I first had

pain in just my ankle when I was between the ages of 11 to 13 but it got

worse. My pain is literally from my hips to my feet, and then my hands and

wrists and sometimes my elbows. I get cramps, muscle spasms, the sensations

are always changing like burning and numbness, electric, sharp and then

dull, etc. I have X-linked CMT and I am the only female in my family

affected by this. I have physio and 2 OT's. I am just going back to my pain

clinic on the 18th for a follow up apt on my meds that aren't working right

now at all. I've been on several different types of medications and other

things to help my pain. I've read that not everyone tells there doc that

they have pain, they don't complain about it a lot BUT that's not true about

me. Pain is my #1 complaint about this all. Next comes the fatigue. I

honestly thought 5 odd years ago that all I would ever have was some mild

foot pain if I tripped but I was dead wrong. I have had several tests from

my neuro and she believes that I don't want to get better. She also believed

that this is all in my head. But that doesn't surprise me at all. A lot of

people still think that even though I am pretty sure that I have medical

proof of everything that's wrong with me. I had been thinking a while ago

was that I have this 17 minute video from Crabtree from

CMTInternational, I was thinking about having an assembly and having the

video played and explain to my entire school what's wrong with me, etc then

have my friend come also and do a bit on CMT and her life. Since I use a

walker because of my pain and fatigue people from my school see me walking

with it at school and then when I'm out later it usually isn't with me and

then they yell at me that I'm faking and other things. Sometimes I lash back

out at them but most of the time I ignore them because it isn't worth it. So

yes those who don't have pain you're the lucky ones at least I think so. Of

course there might be things that are affecting them and not me so maybe its

just a balance of symptoms or maybe its just the way we are all supposed to

be affected.

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