Every single day, for 13 years i've had
what they now call rls (restless leg
syndrome). If I lay down for a nap or to
sleep, within 15 minutes continuous spasms
will occur in one of my legs (varies). I
take mirapex for it. If I don't take
medication, my attacks prevent me from
having any rest and will continue all
night.
Neurologists think that the many people,
who have this disorder, have a dopamine
imbalance. They also have seen a
correlation with back disorders (which I
have also). In truth, they really know
little about its causes, much less any
cure.
My own first hand observations (as the one
with the disorder), persistently indicate
a direct relationship between - eating -
and the severity of my attacks. My own
notes from when the disorder began in
1991, relate that I had "some kind of
stomach virus" that lasted a couple days,
then. Within days afterwards, my daily
attacks began.
Has anyone else noted any leg spasms
related to stomach problems?
John
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JJa4c
New User, Becoming EHEALTHy
Joined: 21 Aug 2004 Posts: 4
Leg Spasms Posted: 08-23-04 14:47pm
Each leg spasm only lasts about 5 sec.
But they repeat in the leg, every 20
seconds. Once I counted them for an hour
and there was 120 spasms. Then I got up
from laying down, to stop them.
Do yours primarily occur when you are
laying down?
How long do your attacks last?
John
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JJa4c
New User, Becoming EHEALTHy
Joined: 21 Aug 2004 Posts: 4
Rls Posted: 08-26-04 09:36am
Sounds like your condition (fortunately)
may come from lack of movement for awhile,
like when you're sitting down and is
temporary.
Rls is a much more chronic condition.
Movement often relieves it (in its milder
form), but as soon as the person sits or
lays down it returns relentlessly over and
over again.
I was hoping others who may read about
this problem and who may have rls or who
may have someone in their family who has
it ... Might join us here to share
information on it.
John
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pitterpat
New User, Becoming EHEALTHy
Joined: 03 Dec 2004 Posts: 7 Location: France
Life With Rls Posted: 12-03-04 13:18pm
Rls has been found to be a genetic
disorder in most folks.... In other
words... We inherited it (most likely)...
When I mentioned my rls to my parents....
My dad immediately lit up and said,
"yeah, I have it.... We just always
called it 'the heebee jeebees".
Geeez....
Anyway.. I've been battling with it since
'93. I was under a great deal of stress
back then and taking benadryl to help me
sleep... Well, benadryl is now my own
worst enemy... Never touch the stuff any
more! Avoid anything with benadryl (
diphenhydromine) if you want to avoid a
very lond day and night with rls.
There has also been a corolation made
between anti-depressants and rls.
Caffeine is an rls sufferer's nightmare as
well. I have had to eliminate it from my
diet ... Or only have caffeine before
4pm.
My rls has been particularly bad over the
past 6 months. I attempt to get a good
night's sleep using mirapex to keep the
rls at bay.... But, it's not working so
well these days. Neurontin is also a drug
that works well for some suffering with
rls. Mirapex is not available here in
france, so i'm rationing my supply. I
"think" when I mix mirapex with ibuprofin,
before bed, then it helps me get to
sleep.
I feel for you... Really I do.... Most
folks don't begin to know how frustrating
this disorder is to live with. Most
nights I can fall asleep, but within 1/2
hour of falling fast asleep, my left leg
begins the spasms... And nervous
energy.... Usually spasm-ing every 15-20
seconds... Endlessly.... Till I finally
give in and get out of bed!
Am looking forward to hearing more input
from you all
pitterpat
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aggieally
New User, Becoming EHEALTHy
Joined: 28 Dec 2004 Posts: 1
Do I Have Restless Leg Syndrome? I Need Some Help Posted: 12-28-04 16:03pm
I currently have a pinched nerve somewhere
in my lower back...Doctors can't really
find it but know it's there...Most likely
a result from a herniated disc...It causes
pain down my right leg...Anwho, was in
p.T. And on nerontin for months...Finally
got off of it b/c it seriously can screw
you up...And the pain in my leg was fine
for a month! Well, started seeing a
chiropractor for some tension in my neck
and we started wroking on my leg...After a
few weeks, the pain starting acting up and
now it is crazy and is in both legs...All
my life I have had leg pain here and there
at night...Feels like lactic acid build up
andmy dad would rub them till they felt
better...Well, the past few nights, it is
so bad...I don't just have to move
them...But I have to crack my knees, my
ankles and my hips (which is hard)...It
feels like fluid is biulding up and the
pain won;t stop till I crack them...Over
and over for hours on end I am
cracking...It hurts if I stop...Does
resltess leg syndrome include this need to
crack my joints over and over? It is
keeping me up all night long...And insight
would be great...
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JJa4c
New User, Becoming EHEALTHy
Joined: 21 Aug 2004 Posts: 4
Not Much Pain With Rls Posted: 01-09-05 23:39pm
My rls does not have pain associated with
it. I - did - have sciatic nerve pain
originally (down my leg) when I got my
heriated discs years ago. But that went
away in a couple weeks.
So if you have pain, then i'd check nerve
damage and not rls. The rls is severe,
relentless (without medication) leg
spasms.
By the way, I agee with the person who
mentioned a food relationship. Sufferers
like myself keep logs sometimes of their
diet along with times of attacks and
medication. And, there is no doubt that
i've definitely seen a food correlation.
John
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StewPttr
New User, Becoming EHEALTHy
Joined: 13 Jun 2006 Posts: 1 Location: Edinburgh / Scotland
Muscle Spasms Posted: 06-13-06 07:02am
Hi john,
two months ago I returned from india after
having an extremely bad bowel disease. At
its worst,
i had up to 40 (forty) bowel movements a
day, even when not eating. On return,
within two days,
i had severe leg cramps which I still have
and am awaiting the results of an mri
scan. All my
bloods seem normal, but my legs are in a
severely bad way. I have also lost a lot
of muscle mass.
Hope this helps.
Stewart
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pungup
New User, Becoming EHEALTHy
Joined: 24 Sep 2006 Posts: 1
I Ahve Spasms Too Posted: 09-24-06 11:00am
Hi,
i have spasms too in my leg at night.
Things have become pretty bad in the lsat
few months. It takes place in my left
leg. Just like some other folks here,
starts 10 minutes after I lie down and
then continues on till I give up and watch
tv for another 2 hours. Once or twice,
watching tv has also not helped. It is
interesting though because I usually lie
down on the couch and there I do not feel
any spasms. Maybe it has something to do
with my getting into the sleep mode, or
maybe the shape of my bed which somehow
piches some nerve on my bak that triggers
these spasms.
I do have a lot of stress. I have a
sciatic nerve problem, though it was never
diagnosed properly..The x-rays did not
show any disc problems in my back. I did
get a ergonomic chair after that and
physiotherapy for my back (both of which
helped). While reading other blogs I
realized that a streched/tense mucle in my
pelvic floor may be pinching the nerve.
Another thing. During spasms if I press
att eh place where the two of my legs
join, there is a lot of pain. Sometimes,
during teh day, I feel excessive pain at a
singular point in the "palm" of my leg
(pardon my english). Does anybody else
also has such symptoms.
For now, I am counting on the tv.
p
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 09-24-06 12:57pm
Hi there! We are all different. A lot of
us deal with herniated discs, sciatica
problems, rls and what works for some may
not work for others. I live in a lot of
pain and have a lot of neuro problems and
have degenerative problems with my joints
and discs, etc. Am at the end of my ropes
with meds, I have tried mirapex, flexeril,
neurontin, requip and sleep meds and other
meds and not much helps and I just about
refuse surgery as I have been there and
done that and it seems like the situation
becomes worse after awhile with scar
tissue and arthritis so I just accept it,
move on and do the best I can. My diet is
good and I do not get myself stressed out.
I realize that their are people that are
alot worse off then I am. I fall alot but
I am not ready for an electric wheelchair
which I have, when I do go out, I use my
electric scooter.
I do hope you all find some relief soon,
as I said before, what works for some may
not work for others and vis versa!
All the best!
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mikeboy
New User, Becoming EHEALTHy
Joined: 16 Apr 2007 Posts: 1
Posted: 04-16-07 11:56am
I am 15 and am having muscle spasms as
well and some times i am limping and i hav
been bugging my parents for a cane but
they refuse. Do you guys think a can could
help or not? sometimes i get pain in both
my ankles at the same time as well and in
both legs, so is a cane a good idea or no?
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Bobster57
New User, Becoming EHEALTHy
Joined: 22 Jan 2008 Posts: 2 Location: ,
Thanks: 1
Thanked:0
Leg spasms prevent me from sleeping. Posted: 01-22-08 18:26pm
Was just trying to
get a bit of sleep today.Had to leave work
early because of a 3 day migraine.
Problem is I can't sleep no matter how I
try. After about 10 mins. lying down my
left leg (only my LEFT leg) begins to
'spasm' very strongly.
I'm 51 yrs. old and have been living with
this condition since the age of 31.
This has altered my life enormously &
I feel very much for all who suffer
similarly with this 'chronic' condition.
Years ago I was able to be examined by a
neurologist by spending time in a sleep
lab on three separate occasions.
This doctor who is now since retired
prescribed Clonazepam which I have been
taking for 20 yrs! When I take the meds.
about an hour before bed it allows me to
doze off and get some sleep. It's not a
very good reparative kind of sleep. The
spasms go on just the same all night long.
My wife sometimes has to sleep on the
couch some nights as she says it's just
too much.
I have learned to live with it somewhat
but it affects me a great deal. I've seen
other neurologists & really don't
offer much help.One told me that I will
live with these spasms (completely
involuntary) by the way, for the rest of
my life. Pretty depressing. No matter what
I try I have found nothing that keeps the
spasms from coming.
I've read many postings on here that fit
my condition to a "T".
I was born with what my parents could
describe as the start of spina-bifida.
Literally was a hole at the base of my
spine covered with a thin fragile skin.
When I was only 5 days old my parents had
me operated on at a neurological hospital
in Montreal. This I assume 'arrested' the
development of more Spina-bifida? I can't
be sure as my parents are no longer with
us. Anyway just a thought, a person always
wonders why one is affected by something
that 'ails' you.
Is it hereditary? Strange how it slowly
began in my 30's and has never stopped.
What I consider is a very layman's
explanation of what is going on is this:
As we hit the sac & slowly doze off, a
sort of 'gate' between our brain & the
rest of our body closes. (Except for vital
involuntary things like breathing, heart
beating etc...). Mine doesn't close
entirely as if there were a hole in it
allowing some erroneous "firing" of an or
several neurons sending these signals to
the muscles in my leg, causing heavy-duty
movements! This is what I was told by a
neurologist.
I still wonder if that is the case or if
the leg has a 'mind' of it's own.
The Clonazepam is slowly destroying my
memory....and this I know for sure. Man! I
sure hope science finds a cure for this so
all of us affected can live normal
healthy, full of energy lives.
This is my story and I'm sticking to it!
Bob M. (Canada)
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Schenn
New User, Becoming EHEALTHy
Joined: 23 Mar 2008 Posts: 2
Leg and back spasms Posted: 03-23-08 10:21am
I've been having leg and back spasms since
I was about 18 (starting in back migrating
into legs). Im 25 now and I can barely
walk im in so much pain all the time, like
muscle fatigue. After about a mile, one
of my two legs will just stop working.
I'll be sending the signal, but there's
practically no response. Aches terrible.
Back spasms will get so bad when im
sleeping that it will jerk me awake in a
kind of ) ( movement. Picking things up
(more then once or twice) is near
impossible. Leg spasms are more like a
shuddering motion (like a rapid jerking of
random muscles instead of a hard jerk of
one or two muscles)
I bring this up, because it didnt get
severe until I had food poisoning in
Mississippi. Terrible day, during all the
... food poisoning... i aggravated a
muscle on my tailbone and that was an
awful experience. Since then however, is
when my leg problems got worse.
I'm going to a bunch of doctors, but can
only afford free ones (as im on the bottom
of the economic food chain if you will.
It's really hard to get out of that when
you cant move more then a few blocks a
day) The last ones concluded that it
wasn't degenerative arthritis like they
were thiking and so theyre sending me to a
neurologist whos willing to work my case
for free next week. *crosses fingers, im
tired of being a mystery*
"I was born with what my parents could
describe as the start of spina-bifida.
Literally was a hole at the base of my
spine covered with a thin fragile skin.
When I was only 5 days old my parents had
me operated on at a neurological hospital
in Montreal. This I assume 'arrested' the
development of more Spina-bifida? I can't
be sure as my parents are no longer with
us. Anyway just a thought, a person always
wonders why one is affected by something
that 'ails' you."
-Interesting, When I was at the hospital
in Miss. They said I had a "trace of
spinobifida" which my other doctors said
didnt make any sense and just ruled it
out.
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jnjhill
New User, Becoming EHEALTHy
Joined: 26 Jun 2008 Posts: 1
leg spasms Posted: 06-26-08 17:52pm
I have been having leg spasms since last
fall. Last fall was the worst of it. I
had several to the point of ER visits. I
have seen cardiology and endocrinology and
they were both negative. As I read these
statements, I feel more and more like my
spasms are a result of RLS. I do not
think I tend to move my leg when I am
asleep, but when it wakes me up, I
definitely move my leg around. It only
affects my left leg. I also have a back
issue, spina bifida occulta, which is a
malformation of 2 of my vertabrae in my
lower back. I currently take Zanaflex and
Vicodin at night. I also occassionally
take Xanax.
After reading several of these statements,
I may be revisiting my doctor to ask him
to treat for RLS and see if it works. I
realize that I may not be helping many of
you with my posting, but you have
certainly helped me.
Thanks
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misschatty
New User, Becoming EHEALTHy
Joined: 27 Aug 2008 Posts: 1
up all night Posted: 08-27-08 13:49pm
wow! My name is Dana and I am 37 years
old I was born with cerebral palsy (mild)
and one of my main issues is every night
my leg feels as if it is moving I notice
if I prop my leg up because mine seems to
be focused behind my right knee and bend
my knee out I seem to have some relief.
It seems to start about half and hour
after I lay down for the night and last
until about 4am in the morning. I have
tried tylenol pm and flexeril but none of
it seems to work. My dr wont give me the
new RLS meds because she insists that mine
is not RLS but rather a condition directly
related to my CP. As I read the many
postings all the syptoms seem the same.
Movement getting up out of bed and walking
or sitting on the edge of the bed putting
pressure on the back of my knee seems to
ease the nerve. I hear alot of people
mention mirapex. What are the side
effects and does it work. I was
considering talking to the dr about
lunesta or ambien cr but I dont think that
will address the issue because tired is
not the problem movement is the issue. I
am open for any suggestions. Luckily I
have a very understanding partner and we
will fight this thing together. I dont
know about everyone else but most people
seem to think since I do not have pain but
rather spasms I shouldnt be complaining
but after about 90 minutes of sleep a
night I think we leg sufferers are
entitled
Was just trying to
get a bit of sleep today.Had to leave work
early because of a 3 day migraine.
