New here

[Guest guest]

Hi all - I'm new here - somehow I got an email invite and I'm SOOO glad!

I'm 34, married, have 3 kids - a 4 year old son and twin 15 month old daughters.

I have CMT 1A; first symptoms as a baby - first surgery (achilles release) at 15

months old. Second, bilateral achilles release and plantar fascia release at 10

years old. I wasn't properly diagnosed until age 19, when I also had Guillain

Barre Syndrome.

My current problems are these -

1. The weakness in my hands. Prior to the pregnancy with the girls, I really

didn't have hand symptoms. I had slow NCV's in my hands, but no real symptoms.

Now - my hands go numb all the time - on the phone, on the computer, sleeping,

driving. And my muscles are so weak. Opening food items, fastening buttons,

doing my girls' hair (and they have a LOT of hair!) - it's all become SO

difficult!!!

Are there things that would help??? Supplements? Exercises? I tried wrist

splints at night, and frankly, they made the pain worse! It was so bad I

couldn't sleep with them on.

2. The pain in my legs. It got really bad during the pregnancy, then it got a

little better, but lately it's gotten bad again. My neurologist mentioned

Lyrica, but I'm still breastfeeding, so I can't take it yet. In the meantime,

she gave me ONE vicodin a day. One. That was in response to me telling her I

was taking 2400 mg of ibuprofen a day just to function, that it wasn't

controlling the pain, and it was tearing up my stomach. I'm no doc, but one

vicodin to 2400 mg of ibuprofen? Isn't that like throwing a 16 oz bottle of

water on a house fire??? Seriously...I understand the stuff is addictive...I'm

a social worker and I've worked with addicts before...but HELLO? I'm in PAIN.

All the time. Between that and my migraines, it makes me SO CRANKY. It makes

it so hard to be patient with my kiddos. It makes it hard to concentrate on

anything except the pain.

So what works for you all? Do I need to ask for a pain management specialist?

Will they even work with me, while I'm breastfeeding? Because I'm not willing

to stop breastfeeding; the daughter I'm breastfeeding has food allergies and

can't drink cow's milk, so she NEEDS my milk. Does Lyrica even work? Do I at

least have that to look forward to when I AM ready to stop nursing?

Thanks!