I progressed to a walker after about three or four weeks, and then to two
canes. As my mobility increased, I started having muscle spasms in my legs
at night (I'm T5, affected from the lower rib cage down, but not in the
arms at all). The doctor put me on Baclofen and explained that I was
discharging electrical energy from my legs during the day by walking, but
at night, the energy resulted in spasms. I don't have the spasms anymore,
and went off the Baclofen, which I primarily took because the spasms woke
me up. In the general scheme of things, I don't remember the spasms being
that painful. However, I was very sensitive to pressure--anything touching
on my legs, especially my feet. I characterize the pain as somewhat like
needles and pins after your leg or arm has "fallen asleep". In my feet,
it's still like that. In my legs, it's less intense, more like irritation,
or for some reason, I call it grumpiness at being touched. Except for my
feet, always more intense, I am more annoyed at touch in areas that haven't
been desensitized, like the other day at the dry cleaners when the
attendant kindly used the lint brush on my back or when I was at the park
with friends and sat in one of those rubber swings that pressed against the
sides of my hips--very annoying. I also have certain areas, particularly
on my left leg in the upper thigh and inside of the knee, that just hurt
sometimes--the pain is quite sharp. Rubbing the areas seems to help.
Another thing that helps is meditation in which I think good smile energy
to that area and wish it well. The meditation also helps for girdle pain I
have just below my breasts, especially on the right side of my rib cage and
to a lesser extent on the left side. My acupuncturist also helps with the
girdle pain and left leg pains.
It's been five years for me, but I've decided to see if acupuncture can
promote further healing of the hypersensitivity/pain in my legs and my
inability to sweat in my legs. He'll be putting needles in my spine once a
week. I had the first treatment last week, and the needles were achy in
the part of my spine that's not hypersensitive, which is a good sign that
he found treatment spots that needed energy. (In my lower spine, where the
skin is hypersensitive, it was somewhat painful.)
My experience with bladder spasms was in the first week. My bladder was
QUITE distended because I had been retaining urine unbeknownst to me. I
was told I might have bladder spasms, and the first night I was in
excruciating pain when they hit until I was given a medicine specific to
that problem. They tried to brush me off with a couple of tylenol rather
than beeping a resident, but I insisted (not something I'll always bother
to do). I do have occasional loss of bladder control now, but it is NOT
associated with bladder spasms (to my knowledge). Most often it is first
thing after getting up in the morning or after a nap and not relieving
myself immediately. If he has this pattern, you might consider putting a
portable potty next to his bed.
I do not have a complete recovery yet, but have had small, slow improvement
over the last five years. I can run short distances in a sort of goofy way
(but without falling down). I can dance--I went and danced to Zydeco
Saturday night. I can't do spins as well as I could or get too elaborate
(yet), but I'm dancing. This was a big goal of mine from day one in
physical therapy.
A good attitude and determination count for a lot. They speak well for
Matthew's continuing improvement. Someone suggested to me once that
children don't know what is normal, they have primarily their own
experience as an understanding of what "life" is. Matthew may not realize
he is working and will have to work harder than other kids, but just do it
and move on.
Best wishes,
Aurore