Mary Katherine,
Find a physiatrist (go to www.aapmr.org, there's a directory there); Janet saw one a couple of weeks ago, and it was the most comprehensive history and physical I've seen, and as Janet says, "That's sayin' something, cause you've seen a lot of docs!" If you're anywhere close to Fort Collins, Colorado, let me know, and I'll give you the name of the one Janet saw.
Kendall
________________________________
From: Mary Katherine Powers [mailto:[log in to unmask]]
Sent: Sat 9/2/2006 12:56 PM
To: [log in to unmask]
Subject: Re: [C-PALSY] I'm new here - muscle stiffness
Hello everyone,
thanks for your comments. I still have a feeling that there is
something going on that has not been explained. I'd like to get a
thorough evaluation about CP from an expert to answer it either way.
Any suggestions? I work in Washington DC. At one point I had thought
of going to Kennedy Krieger. If there is someone I can see, or a place
I can go, please recommend a name/place.
I'd like to go somewhere where the doctor takes his/her time to do a
really long evaluation - the ones I've had tend to be a few minutes of
"let me see you walk" and things like that. I would be willing to pay
whatever insurance doesn't cover. any suggestions would be appreciated.
I walked more than usual yesterday and today I've got the overall
stiffness back - it's harder to move than usual, but not as hard as
last week when I had this. I can stand up, sit down OK. my arms hurt
but I can type. I do feel like everything is stiffer than usual,
though. I just kind of feel like lying in bed, but I've been told that
is not a good idea for stiffness.
about the ibuprofen question - it helps me, but it has to be a high
dose. I have a prescription for 800 mg pills. I usually take about
one per day. the standard dose from the over the counter boxes doesn't
work any more.
thanks.
-----Original Message-----
From: [log in to unmask]
To: [log in to unmask]
Sent: Fri, 1 Sep 2006 9:53 PM
Subject: Re: I'm new here - muscle stiffness
havng to fight yourself to walk sounds like at least
mild cp to me. i am no dr.
--- Mary Katherine Powers <[log in to unmask]> wrote:
> I still wonder that. I hope you don't mind all
> these emails. it's
> hard to talk to people IRL because they - I don't
> know - just usually
> tell me to move on with it. except for my
> therapist, who has wondered
> about the CP also.
>
> this sounds strange, but what I HATE the most is
> that when I walk, I
> fight myself. I guess this is stiffness? My lower
> legs front (shins?)
> don't want to move and I have to push them. It's
> this battle of who
> will win, me or my legs, and I'm telling you, I feel
> absolutely
> ridiculous because I'm talking about walking a city
> block or two at a
> slow pace. but I'm in this fight; does that make
> any sense? the
> harder I push, the worse it gets. I'm hoping the
> stretching will help.
> it's seemed to help so far.
>
> I had a scary experience last week where I took two
> short walks two
> days in a row (Mon and Tues) and on Wed when I woke
> up, I felt like
> someone beat me with a baseball bat. I was stiff
> from my lower back
> down to my ankles, and eventually the stiffness
> traveled upward to my
> neck and I got a bad headache. *everything* hurt.
> stretching seemed
> to help with that, but I had a hard time with
> climbing stairs, taing a
> shower, moving from a sitting to a standing position
> and back again,
> and just about everything.
>
> sometimes when my hands get tired I feel like I'm
> fighting them too to
> get the typing done, but I have much better arm/hand
> use than leg.
>
> I just don't like feeling that I'm in a fight when I
> walk. Is that
> stupid?
>
> MK
>
> -----Original Message-----
> From: [log in to unmask]
> To: [log in to unmask]
> Sent: Fri, 1 Sep 2006 9:14 PM
> Subject: Re: I'm new here - muscle stiffness
>
> Mary, you might just have a weird case of C.P.,
> because Premature
> birth,
> balance, co-ordination and stiffness problems are
> symptoms of C.P., and
> mild
> C.P. can sometimes fool doctors. Each case of C.P.
> is as individual as
> the
> individual.
>
> -----Original Message-----
> From: Cerebral Palsy List
> [mailto:[log in to unmask]] On Behalf
> Of
> Mary Katherine Powers
> Sent: Friday, September 01, 2006 8:19 PM
> To: [log in to unmask]
> Subject: 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.
> 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.
> 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.
> 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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