Question:
Restless Legs Syndrome
Hello! I've suffered from Restless Legs Syndrome(RLS) for a long time, but it's been more frequent since having WLS. If you don't know what it is, it's a creepy/crawly feeling in your legs. You have an ansy, urge to move your legs, and the more you try to not move, the greater the urge becomes until it's an involuntary movement. It usually happens at night when you're trying to relax or go to sleep. The past few weeks it's gotten worse to the point of keeping me up at night. Does anyone else suffer from this, and what do you do to elevate the symptoms? I've tried getting up and walking, massaging, "shaking" my foot, everything, and nothing helps...I've made a doctor's appointment concerning it (just to be safe) but wanted to see what ya'll had to say about it too...Thanks! Denise 316/156 — lily1968 (posted on March 4, 2004)
March 4, 2004
Make sure they check your potassium. I get horrible cramps and creepy
feeling in my legs and feet when my potassium is low.
— Cathy S.
March 4, 2004
I used to get that pre-op. Now I don't. I don't know why. I do exercise
5x a week, but I don't know if it is related.
— mrsmyranow
March 4, 2004
I had this...........it was low potassium. It also caused cramps. I am
also hypothyroid and after losing almost 100 pounds, found that I was
overmedicated on thyroid medication. I haven't had any more problems since
I started taking a potassium supplement and the doc reduced my Synthroid.
I'd talk to the doctor before I started a potassium supplement if I were
you though.
— SCbabe B.
March 4, 2004
Denise,
I get this too and I might be wrong but I don't think you are talking about
the intense cramping that comes from potassium but an irresistable urge to
move your legs. I have never been officially diagnosed but I'm pretty sure
that it is restless leg syndrome. Mine will come on when I'm drifting off
to sleep, when I've been sitting for along time in a car and even if I'm
uncomfortable from a full bladder. Sounds weird, huh? I get a burning,
pulling, creepy crawly feeling in my legs and sometimes it's so bad that it
makes me want to cry. It's not that the pain is so bad, because it's not
so much pain, it's just such a restless feeling. I guess that's where it
got it's name. I'm sorry that I don't have any helpful advice because I've
yet to see my Dr. about it, but am suffering so badly right now that I'm
planning on doing that soon. I have heard that they can treat it with
medication used for MS if it's severe enough. Hope it gets better for you.
— denisel
March 4, 2004
Hi Denise...me again. I just checked with the Restless Leg Syndrome
National Organization, or something like that and found some interesting
results. I learned that sometimes iron deficiencies and other vitamin and
mineral deficiencies could be the cause of an onset of symptoms. I had
this pre-op occassionally but mine has worsened since I've been post-op as
well, perhaps due to my low iron levels recently. Perhaps have your Doc
check your blood levels when you see him/her. There are also many
medications that are used to treat the symptoms and one of them is used to
treat Parkinson's disease rather than MS, I was mistaken about that
earlier. Anyway, ther is a website with alot of information that might be
interested in. Good luck!
www.rls.org
— denisel
March 4, 2004
I agree with the low iron and pottassium being the culprit. I suffered
with it during my two pregnancies and the doc said it was probably because
I was anemic. I had it pretty bad after surgey for the first 2 months
(always at night) and my doc told me it could also be from the anesthia.
Now I seldom get it...maybe 3-4 times per year, but it definately is a
horrible feeling and wakes me up at night. I usually have to keep walking
around until it passes. I try to stand in the kitchen and eat a small
snack with some milk as well. It usually subsides within 30 minutes. I
bet it could be low iron or pottasium though so certainly checking with
your doctor is a great idea. Good luck!
— emilyfink
March 4, 2004
This is due to a deficency of dopamine created by the basal ganglia. I have
suffered from this for over 10 yrs now and my father has had it for over 30
yrs. He is very active in the "rls.org" and Night Walkers. Has
done much research with John Hopkins Univ.
Only thing that will relieve the symptoms is Meds. Such as dopamine and or
Mirapex. It is along the same lines as Parkinsons Disease. But not related.
IF you need anything please feel free to email me. Inqurie on a sleep study
to find out how severe you have it.
— diannapullen
March 4, 2004
I am so glad you asked this questions and the answers are interesting to
me. I have suffered from this since I was a kid, but have never been
diagnosed. When I have tried explaining it to other people it sounds just
to weird to believe. I have even felt it in my arms when trying to sleep;
somtimes during regular waking hours too. Is it possible to have restless
arm syndrome as well? hmm ..I have never got much help with this issue and
thankfully it tends to come and go with me; not constant. It tends to
appear at times when I'm more tired and worn out. Again, thanks for asking
this. Im going to look more into it myself. RNY 11/25/03 -62
— JennA
March 4, 2004
I have exactly the same thing, but I havent seen a doctor about it. I take
1 tylanol and a hot bath when my legs get that way and am thenable to fall
asleep. I am sure that sounds like a simple answer to a very complex
problem , but my solution works for me. I hope it will help you too. good
luck
— terri R.
March 4, 2004
My mom and her best friend have this same problem. They call it the Jimmy
Legs :)
I don't know why they call it that but I think they are trying to make
light out of a bad situation. I have had it before and it is really
annoying. My mother says she gets them when she takes two Benadryls. I hope
that you get to feeling better.
— Jan D.
March 4, 2004
I'm sorry, it's Jemma Legs :)
The reason why they call it this is because you have to Jemma them around
to try and get some relief.
— Jan D.
March 4, 2004
I GET THIS FROM TIME TO TIME..I HAVE MS, THIS IS COMMON FOR MS PATIENTS...I
DON'T TAKE ANYTHING FOR IT...FEEL FREE TO EMAIL AT [email protected]
— BARB W.
March 4, 2004
AARRGGHH! I HATE Restless Leg Syndrome! I have found some relief lately by
taking carbonyl iron, specifically the name brand Fe-osol. It's not
prescription. My psychiatrist recommended it - she said it really helped
her RLS. I have found that it makes my ocurrences of RLS less frequent, and
when I do get it, it's not as bad. I haven't had WLS, so I don't know if
WLS folks can take extra iron or not. Oh! And by the way, iron supplements
have always made me nauseated, even on a full stomach, but carbonyl iron
does not. The cheapest place I found to get Fe-osol is Wal-Mart. Have you
ever had RLS strike you in the movies? Or church? Or while riding in a car?
People look at me like I'm some kind of wriggling maniac. It's awful. In
the past, I was helped by taking quinine sulfate. That helped for a long
time, but it doesn't seem to, now. Also at one point I was greatly helped
by an herb called butchers' broom. That also doesn't seem to work for me
anymore. I've also stretched, exercised, massaged - you name it. What an
annoying condition it is! Good luck to you!
— Kim A.
March 4, 2004
Hi, I have restless leg syndrome. I take Merapex for it and it works. LM
— catly
March 4, 2004
WOW!! There are lots of us out there! RLS is the worst! My first time
experiencing this was when I was pregnant, and at the same time, my mom
started RLS going into Menopause. I assumed the association was hormones.
Mine continued into WLS, then has subsided in the past year (I'm over 2
years post). Now I only get it once in a blue moon. I still associated it
with hormones b/c when losing weight rapidly, your estrogen is affected
because it is stored in your fat cells. It seems as if it is always
hormone related with me (and mom). I guess it could be a deficiency in a
mineral/vitamin and the hormone thing only seems coincidental. I don't
know. I used to take Benedryl just so that I could get some sleep, and it
seemed to make it worse. I did learn on a RLS message board somewhere that
Benedryl DOES make it more intense. I hope you find relief. The different
theories are interesting.
— Cheri M.
March 4, 2004
I got RLS too! I got it pre-op in the early stages of my pregnancy (like
others), AND I got it shortly after my WLS. It's the pits, yes, but
luckily, mine went away after a month or 2 post. It may be hormone-related,
or vitamin-related, and others have told me that it could be a reaction to
the surgical anaesthesia (although that wouldn't explain why I got it in my
first trimester of pregnancy too). See your doc about it (maybe get an Rx),
but bear in mind that it's not uncommon in posties, and that it may go away
in time.
— Patricia E.
March 4, 2004
Sorry, forgot to mention this to an earlier poster - Jennifer A: Yes, it IS
possible to get RLS in your arms too. I got it in my arms during pregnancy
as well.
— Patricia E.
March 4, 2004
Original Poster here...WOOW!! Thanks everyone...I didn't realize how many
people this affects..Diana, thanks for the email, I've checked out the RLS
webite and it's great. I'm going to increase my iron (I take 150mg a day
as it is) by taking the Ferosol (thanks Cheryl). I will be having blood
work done next week for my 2.5yr postop checkup, so we'll see what's low.
I don't believe my potassium is low and I say that because I take
spironolactone (a potassium-sparing diuretic) for my PCOS, and I'm also on
the Yasmin BC pill that is also potassium sparing..it could actually be
alittle high. The worse place that RLS has come on is on a flight from
Seattle back to Orlando...arg! It was terrible. Thanks again everyone..you
don't know how helpful you've been...Denise :o)
— lily1968
March 5, 2004
My mother has suffered from this for many years and told her doctor about a
medication she read about in the National Enquirer. It is called Mirapex.
The doc hadn't heard of it but was willing to give it a try. It has worked
miracles for her and he now prescribes it for his other RLS patients. I
sometimes get what I call restless arm syndrome which is the creepy/crawly
feeling in my arms and shoulders and have taken a couple of mothers pills.
The really help if I take then when it first starts, otherwise it's a
sleepless night. Mum takes her pill every night and hasn't had a problem
since. You might want to ask your doctor or at least research the drug.
RLs is a miserable syndrome.
— Dianne C.
March 5, 2004
I suffer from RLS. My doctor now has me on 600MG of Nuerontin that I take
about 2 hours before bedtime. It works great - I was desparate! It's a
siezure medicine per classification but it never worked very well for
siezures according to my doctor but it's used alot for RLS. Good luck - I
know how frustrating this condition can be.
— Debbie C.
March 5, 2004
By the way, my grandmother had this also and she called it "The Heebie
Jeebies" :)
— Debbie C.
March 5, 2004
I have suffered with this for years and try to avoid taking yet another
medication. What I do is go take a hot shower, as hot as I can tolerate,
get into bed and wrap the covers tightly around me, like swaddling a baby.
I am then able to stop the unwanted movements and get to sleep. It is the
only thing that I have found that works 100% of the time. Good luck
— Betty S.
March 7, 2004
Hi,Denise. Yes, I have it and Yes it got worse after WLs. I talked to
Julius at Dr. Naaman's office and he said it was either that I was not
drinking enough water or it could be because my B1 or thiamine was low. He
told me to take 1 B Complex vitamin a day and I haven't had the problem
since.
— Carolyn B.
March 8, 2004
My husband has this, had this for as long as I can remember. He did not
have WLS, does not have a weight problem but is getting diagnosed with
sleep apnea and the docs asked about his legs so we are assuming they have
something to do with eachother.
— Gretchen B.
March 20, 2004
OK...this is weird...I was just reading questions like I normally do and
stumbled on to this question. For the past two nights, my arms and legs
have felt like I needed to move them. It has kept me up and is the
strangest feeling. It is like they feel like the muscles need to be worked
or something. I have been doing stretches and little exercises, but it
doesn't seem to help. Anyways, I didn't know that this was actually a
condition. Just thought I would add my comment.
— Beffy W.
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