u/FastCause6078

What was I thinking…

Oldest turned 4 this past Saturday, so of course that’s the day we had her birthday party. We rented out a 24ft inflatable water slide that EVERYONE begged me to get on. Finally I obliged, Sunday I was hurting. Today… the pain is unbearable, the exhaustion is unreal. My hands feel swollen, my neck hurts so bad that it feels like one wrong move and it’ll just break. My ankles are bruised. I feel unstable. I’m taking ibuprofen but that’s not touching it.
Not looking for sympathy, don’t really know why I’m posting this lol.

reddit.com

u/FastCause6078 — 10 days ago

▲ 2 r/CharcotMarieTooth

Gabapentin and daily life

CMT 1A, 34f with 2yr old and 3 yr old. Just got out back on Gabapentin with these instructions; days 1-3 take one 100mg at night, days 4-8 take one 100mg morning and night, day 9 and forward take one 100mg 3 times a day.
How do you all function?! I’m still on one 100mg at night because I’m walking around like I’m drunk, I look like a ping pong ball when I’m walking hitting wall to wall, I need to be functioning..
Lyrica isn’t an option, it made unable to make decisions or even function.

Are we just dealing with the pain? My neurologist at my last appointment really started pushing hand controls for driving (idk what we will do once I lose all muscle/function in my hands). Muscle wasting in my legs is awful, but I’m able to walk which is a blessing! She doesn’t understand how I’m still driving especially since my foot slides off gas and brake constantly.

u/FastCause6078 — 2 months ago