i hope it works for you too. it has helped many, but,
not for everyone. hope you will fall into the first
catagory.
--- Tamar Raine <[log in to unmask]> wrote:
> kendall,
> I'm going to be trying baclofen pump... finally got
> xrays that show my hip
> muscles are so tight they're pulling the joint all
> wrong and that is why
> I've got so much f000ing pain. Ii am on vicodin by
> day, and endocet at
> night for pain control. I really am praying the
> baclofen pump works because
> i dont know if i can take another year like this!!!
> arghhh..
>
> Tamar Raine
> [log in to unmask]
> Now serving tee shirts! and soon to come, Maui
> posters and other items;
> www.cafepress.com/tamarmag
>
>
> > [Original Message]
> > From: Kendall David Corbett <[log in to unmask]>
> > To: <[log in to unmask]>
> > Date: 9/3/2006 5:39:29 PM
> > Subject: Re: I'm new here - muscle stiffness
> >
> > Mary Katherine,
> > =20
> >
> > Janet says:
> > =20
> > The balance and coordination issues sound a lot
> like CP, and even if =
> > it's not CP, you're dealing with the same issues.
> When I was in my early =
> > 30's, my functional abilities started to decrease,
> so walking got =
> > harder, the range of motion in my arms decreased,
> and in general my =
> > muscles were stiffer (or tighter). So I went to
> my Doc, and got an =
> > increase in my medication and in the course of 10
> years, I got a walker, =
> > a new (to me) drug, a neurologist, a baclofen
> pump, and a really good =
> > massage therapist/body work practitioner. Ask
> anybody on the list, asnd =
> > they'll tell you that aging makes CP harder to
> live with, even at ages =
> > that aren't generally considered to be "aging."=20
> > =09
> > =20
> > I also found that "regular" PT wasn't that
> effective. It was only =
> > after I got the baclofen pump that I found out
> what stretching was =
> > supposed to be like. Now I can stretch and have
> it make a difference, =
> > in that my muscles won't immediately go back to
> the "pre-stretch" state; =
> > the same thing goes for massages. It seems that
> "regular" orthopedic =
> > docs don't quite know what to do with people with
> CP, yes it's odd, very =
> > odd but I think it has to do with experience.
> They're used to dealing =
> > with relatively straightforward problems, and CP
> is complex, especially =
> > as we age. =20
> > =20
> > You might try seeing a neurologist, as sometimes
> muscle stiffness has =
> > a neurological basis. You would hopefully get a
> good work-up, and =
> > perhaps a prescription for a muscle relaxant. I
> know that if I didn't =
> > have good pharmaceuticals, I would be curled up in
> a ball so tight that =
> > it would take a crowbar to straighten me out.
> > =20
> > Congratulations on finding a practitioner who
> can help you - that's =
> > half the battle. Good luck with your quest to
> find more answers.
> > =09
> >
> > Janet (and Kendall) Corbett=20
> >
> >
> > ________________________________
> >
> > From: Mary Katherine Powers
> [mailto:[log in to unmask]]
> > Sent: Fri 9/1/2006 6:19 PM
> > To: [log in to unmask]
> > Subject: [C-PALSY] I'm new here - muscle stiffness
> >
> >
> >
> > Hello,
> >
> > I hope you don't mind my being on this list. I'm
> new. I do not have
> > CP, but I have issues with chronic muscle
> stiffness that cause pain and
> > make movement difficult. I'm doing physical
> therapy for it. I was
> > hoping to get some suggestions on dealing with
> muscle stiffness that
> > might help.
> >
> > what I can do is limited, so the stretches have to
> be really gentle.=20
> > I've tried doing stretches too hard and had a lot
> of trouble moving
> > after that. I've been told to take it easy and
> build up slowly.
> >
> > I have chronic pain in my legs, back, neck,
> shoulders, arms, and
> > occasionally fingers. I'm overweight and I've
> been told that although
> > that does not help, it's not the cause of the
> problem. I was told I
> > was out of shape because people much more
> overweight than I am have
> > more mobility. I agree with this, but my muscles
> have always been
> > stiff. It's just the way I am.
> >
> > I can walk but it is difficult. I'm hoping the PT
> will make it easier.
> >
> > Also, I was a preemie (11 weeks early) and I have
> the typical balance,
> > coordination, etc. problems. my vision is not
> great and I have no
> > depth perception. that really is not the problem
> though, it's the
> > muscle stiffness that gets to me.
> >
> > any suggestions on dealing with muscle stiffness
> would be appreciated.=20
> > when I tried googling it, all kinds of information
> on all kinds of
> > different conditions, like Parkinson's, came up,
> none of which I have.
> >
> > another strange thing, and I was wondering if
> anyone could comment, is
> > that I've had no luck going to "regular" PTs who
> were recommended by my
> > doctors. they are at places like "sports and
> spinal" and some other
> > group, and they tend to be very cursory, don't
> understand what I'm
> > talking about, and then circle a couple stretches
> on a piece of paper
> > and tell me to do them, and usually I can't do the
> stretches they want.
> > It's weird. I went to someone today at a place
> called Pain and
> > Rehabilitation Medicine and I spent $250.00 for an
> appoinment that
> > lasted about an hour. It was like night and day -
> he was excellent.=20
> > he does not take insurance and still he has a
> waiting list about 2
> > months long.
> >
> > Any experiences like that, where the "regular" PT
> places recommended by
> > doctors just don't work? I find that odd, like
> they should know a bit
> > more about what they are doing.
> >
> > thanks,
> >
> > Mary Katherine
> >
>
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