Hello,
thanks for the welcome. I appreciate it.
I did see a neurologist last year, in fact I joined this list briefly
last fall and asked about it and several people suggested I see one.
she said the workup was in the normal range. I had written down an
exhaustive list of my physical issues (which I think had 19 items) and
she described it in her report as a "litany of complaints." I was
kinda insulted about that, but I heard that sort of thing is standard
medical terminology and not an insult.
she said I could have CP, because it was a "wastebasket diagnosis," but
I did not have one of the (3 or 4? I can't remember) major forms of it.
she thought I had Asperger's syndrome, because of my clumsiness,
stiffness, lack of social skills and being very introverted. she
recommended neuropsych testing for that. I have seen a therapist for
several years for depression/anxiety/abuse issues, and she strongly
disagreed with the Asperger's, telling me definitively that I did not
have it, and she also disagreed with the need for testing. I had a
full IQ/personality test workup before I saw my current therapist. It
was completely useless.
My therapist called the neurologist to see why she recommended that
testing, and to discuss whether it was really needed. the neurologist
never called back. I hear that's normal, even when neurologists
recommend psychiatric tests.
the neurologist also recommended an MRI to see if I had brain bleed as
an infant. my therapist did not think that was necessary either -
suppose the MRI showed something - basically, so what? It wouldn't
change anything.
my therapist actually recommended that I go to Kennedy Krieger in
Baltimore and get evaluated. I never did that because I tried this
other stuff instead. I don't know if I could have some form of CP that
is not typical. the physical therapist told me I definitely did not
have it and to stop worrying about it, but I keep thinking that this is
just so unusual - I don't see many people my age (almost 38) like this.
the PT also told me that I was walking too slowly and that causes
problems. people do it when walking hurts, but he said movements get
messed up then.
I had no idea there was anyone diagnosed with CP later in life. I
thought everyone was diagnosed by about age 5 or so.
I agree that not having a diagnosis makes it hard, but there really
isn't one, other than "i'm just that way." I'm too stiff to be just
considered out of shape.
thanks,
MK
-----Original Message-----
From: [log in to unmask]
To: [log in to unmask]
Sent: Fri, 1 Sep 2006 8:41 PM
Subject: Re: I'm new here - muscle stiffness
Hi, Mary Catherine, I'm Kat, one of the list mods and a CP living
and working in NC. Welcome to the list!
I suggest you get a workup by a neurologist simply to rule out MS, MD,
and yes, even CP. We have people on this list who were diagnosed with
CP later in life and it doesn't seem to be that unusual.
I am wondering if the reason you don't seem to be able to find a
specific treatment with a PT is because you don't have a specific
diagnosis? I know that stiffness is stiffness, but it seems to me that
if you were diagnosed, say, with rhuematoid athritis, your treatment
regiem would be different than if you were diagnosed with MS. Just a
thought.
Personally speaking I find that stress increases my fatigue and
consequently stiffness, and I have found that meditation helps
considerably as does stretching and weight-lifting. I can say that the
more you move the less stiff you'd be. So the main thing is, to keep
moving! I know that Mag, a member of this list, will recommend
Feldenkrais and that'd seen to be something to look into.
Kat
On 1 Sep 2006, at 20:19, Mary Katherine Powers wrote:
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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