Lupus Tics Or "vibrations" Posted: 06-18-04 10:13am
I was diagnosed almost a year ago. Since
my diagnosis it seems that I go from one
symptom to the next. And there are days
when I feel like I don't even want to get
out of bed. Now my rhuematologist has
diagnosed that I also have fibromyalgia.
I wanted to let the person know who has
tics or twitches that I also have them and
they seem to be getting more frequent and
stronger. I am wondering if there is any
kind of medication that can be given to
control them or if this is just one of the
many things I have to live with. They
can be somewhat embarrassing if you are
around a lot of people and all of a sudden
your leg twitches out straight in front of
you. And then again it can be somewhat
humorous as well.
Also, I am wondering if anyone has any
ideas on how to keep life as normal as
possible for kids especially on those days
when I feel real poorly. Between my
hubby and I we have 9 kids. 5 of them
are under 18 and live with us. They are
all great kids and know about my illness.
But sometimes it is hard for them to
understand that I cannot always be the
perky mom they want me to be. Then I
find myself over doing to try to keep
things normal. Any suggestions?
Lori
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 06-18-04 15:53pm
Hi lori! Welcome!
A thought on the twitches...Have you had
your magnesium levels checked? I know I
talked to my immunologist and she said it
was quite common amongst those of us with
auto-immune diseases. My come and go...I
usually laugh when they happen. wish I could be of
more help...
As for the kids, I know in our (clarebear
and me) old support group, we had several
people that made the kids a part of the
day...If you know you are going to have a
bad day in bed, let them join you (this,
of course, depends on their ages.) you can
also allow them to feel important and
involved by letting them help you. I know
many parents that I have spoke with have a
hard time with that one, but it helps the
kids to feel like they are a part of the
solution. It makes them feel that they
are important, not only to you, but to
your feeling better.
i do hope you feel better soon! Hugs,
ladybrannon
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lwyswright
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 18 Location: Arizona
Thanks For the Welcome Posted: 06-18-04 23:17pm
Thank you for the reply. I have had my
mag. Levels checked, and like everything
else it is totally out of whack. So, I
am on supplements for that.
As for the kids, they are a part of the
day. But, their ages range from 9
through 17 so it is difficult to spend a
day in bed without interruption or having
to run some sort of errand or whatever.
They are pretty good at helping out,
however they don't really understand the
disease yet, and they don't get how one
minute I can feel great and less then five
min. Later that all changes and I feel
like crud. And the fatigue hits me like
a ton of bricks at the oddest times. So,
I am trying to help them understand but at
the same time trying to be the mom I was
before all of this. Sort of a hard
balancing act.
Thanks again for the reply.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 06-23-04 12:07pm
A thought...Have you ever visited the
"spoon" website? If not, it is
wonderful to teach people how you deal
with lupus...It gives great insight and
may be able to help you explain to your
kids.
Just a thought.
Try this: (cut and paste into your browser
then make the "h" on the "htm" part
lowercase, don't even try to link...It
never works...At least for me! )
http://www.Butyoudo
ntlooksick.Com/spoons.Htm
Hello ladies...
Welcome to the forum and yes
ladybrannon, I do remember some of the
ladies (and gentlemen) in our old support
group who had *great* kids as far as the
lupus went.
I had tics too, but my legs didn't
suddenly straighten out or whatever; I had
what were akin to muscle spasms. My
fingers would suddenly jump and it
reminded me of when people get the
occasional eye spasm.
Anyway, when I mentioned it to my doctor
he said that exercise would take care of
the twitches.
...Needless to say for some of us exercise
is currently out of the question but even
a walk around the block will help.
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Schizophreniahealth
This page was last updated on June 11, 2008
wish I could be of
more help...
