Re: What's causing this - Restless leg syndrome??

[Guest guest]

In a message dated 12/27/2006 5:23:46 P.M. Central Standard Time, jdytart@... writes:

I hope everyone here doesn't think that all I do is complain, becausereally mostly I don't, and I know in a lot of ways I'm making greatprogress. I had both knees replaced October 20th, and this is what ishappening now... Every day by evening, my legs feel more and more"antsy" and by bedtime it is really annoying, keeping me from gettingto sleep in the first place. As far as I can tell from reading, thesymptoms are exactly the same as "restless leg syndrome" - what helpsmost is a little vigorous movement, like using my exercise bike for afew minutes. Has this happened to anyone else, and if it did - I hope- it went away with time? Or any other hints how to deal with it.Thanks,Judy

Hi Judy, it happened to me also. I take Neurontin for it. It seems to be getting better after a year. It's aggravating isn't it?

[Guest guest]

In a message dated 12/27/2006 8:38:14 P.M. Central Standard Time, jdytart@... writes:

I wonder why this happens, ? I'm thinking maybe it's becauseof the nerves that are damaged in doing the surgery. If that's thecase, then maybe as they heal over time, the feeling goes away?Does Neurontin work for you without too many side effects? Did you goto your orthopedist or your regular doctor - I haven't mentioned thisto my orthopedist yet, because I just figured out what seemed to begoing on.I hope yours goes away soon and totally.Judy

Actually, this is weird but my psychiatrist gave it to me. It also helps with anxiety and she said that this would help that also. She's very cool. I don't notice anything from the Neurontin other than the legs are better. I take it at night before bed and for me it works. I kind of had them before my surgery, but it made them worse. I think part of it is just thinking about the legs too much.

[Guest guest]

I wonder why this happens, ? I'm thinking maybe it's because

of the nerves that are damaged in doing the surgery. If that's the

case, then maybe as they heal over time, the feeling goes away?

Does Neurontin work for you without too many side effects? Did you go

to your orthopedist or your regular doctor - I haven't mentioned this

to my orthopedist yet, because I just figured out what seemed to be

going on.

I hope yours goes away soon and totally.

Judy

>

>

> In a message dated 12/27/2006 5:23:46 P.M. Central Standard Time,

> jdytart@... writes:

>

>

>

>

> I hope everyone here doesn't think that all I do is complain, because

> really mostly I don't, and I know in a lot of ways I'm making great

> progress. I had both knees replaced October 20th, and this is what is

> happening now... Every day by evening, my legs feel more and more

> " antsy " and by bedtime it is really annoying, keeping me from getting

> to sleep in the first place. As far as I can tell from reading, the

> symptoms are exactly the same as " restless leg syndrome " - what helps

> most is a little vigorous movement, like using my exercise bike for a

> few minutes. Has this happened to anyone else, and if it did - I hope

> - it went away with time? Or any other hints how to deal with it.

>

> Thanks,

>

> Judy

>

>

>

>

>

>

> Hi Judy, it happened to me also. I take Neurontin for it. It

seems to be

> getting better after a year. It's aggravating isn't it?

>

[Guest guest]

Yeah, Neurontin is used for several things, and seizures is one of them. It didn't help with my pain either, just my restless legs. My Mom takes Tegretol but that's a lot more dangerous, or has a lot more side effects, but works for her. Makes her weird though and slur her words and she has to have her blood levels checked.

[Guest guest]

neurontin is also for pain, but it doesn't help with my pain at all. i think it's also used for some seizures, i could be wrong about that though.

RLS is a real disorder, it's not just all in the head. there are several good websites with great info. i really feel for anyone who has it because it will drive a person nuts. lol it's so darn aggravating.

http://www.rls.org/NetCommunity/Page.aspx? & pid=178 & srcid=-2

http://www.wemove.org/

http://www.helpguide.org/life/restless_leg_syndrome_rls.htm

Hugs,Lindy LouRight THR 1/22/2007

I wonder why this happens, ? I'm thinking maybe it's becauseof the nerves that are damaged in doing the surgery. If that's thecase, then maybe as they heal over time, the feeling goes away?Does Neurontin work for you without too many side effects? Did you goto your orthopedist or your regular doctor - I haven't mentioned thisto my orthopedist yet, because I just figured out what seemed to begoing on.I hope yours goes away soon and totally.Judy

[Guest guest]

The way my Dr described Neurontin’s

effect was that it helped pain meds work better. It slows down or blocks the

way nerves respond so you can take smaller doses of pain meds and get

the same relief as a larger dose. A smaller dose

equals less side effects. Neural response inhibiter ( I

think) is the big fancy name they call it. Neurontin is one of the

drugs that take several weeks to get to the proper level in your body

so you can’t just take one when you feel like you

need it, like aspirin or Tylenol. And as a word of warning do NOT just

quit taking them. The withdrawal is horrible

and mine sets in at about 48 hours. I could quit methadone cold

turkey, if I had to, but Neurontin is a whole different

story. Plus they are expensive, I have been in

the “doughnut hole” of social security prescription coverage for 6

months

and my Neurontin costs me close to $300 a month.

[Guest guest]

Thanks so much, Lindy - I will check out that link. Meanwhile, I have

a new plan which seems to help somewhat - I get on my exercise bike

for a few minutes before going to bed and it seems to calm it down.

If I could only take a warm bath, I know that would help too - but I'm

still not able to sit down in the tub - or afraid to try. Soon, I hope.

It's such a weird and annoying thing to have - Take care of yourself

too...

Judy

>

> Judy,

>

> Yes, that is RLS (Restless Leg Synrdome). I've had it since 1994 --

all of a sudden one day out of the blue, it started. My mother also

had it for years, BAD, but no doctor every actually told her that's

what it was -- they all acted like they thought she was crazy. It was

before you heard so much about it. Now there are commercials for it

on TV. She had a bunch of jerk doctors though.

>

> Anyway, I take Neurontin for it and most the time it helps; however,

I still can have it bad some nights. In bed, it drives my husband

nuts because I have to move my legs constantly to make it hurt less

and of course, I cannot sleep when it's that bad. Sometimes I have to

go to the sofa to spare him, no sense in us both being miserable. I

only have it in my left leg, which I think is weird, but maybe it isn't.

>

> Just today, I just did a search for it and found the Australian RLS

Foundation -- here's the link --

http://www.rls.org.au/index.php?page=static & func=show & content=what_causes_rls

> If you read the first couple paragraphs, it states how it is linked

to Chromosome 12 or 14, thus proving it is inherited.

> And Judy, I do NOT think you complain.

> Hugs,

> Lindy Lou

> Right THR 1/22/2007

>

> I hope everyone here doesn't think that all I do is complain, because

> really mostly I don't, and I know in a lot of ways I'm making great

> progress. I had both knees replaced October 20th, and this is what is

> happening now... Every day by evening, my legs feel more and more

> " antsy " and by bedtime it is really annoying, keeping me from getting

> to sleep in the first place. As far as I can tell from reading, the

> symptoms are exactly the same as " restless leg syndrome " - what helps

> most is a little vigorous movement, like using my exercise bike for a

> few minutes. Has this happened to anyone else, and if it did - I hope

> - it went away with time? Or any other hints how to deal with it.

>

> Thanks,

>

> Judy

>

[Guest guest]

Thanks for all the info, - I will see my regular doctor in

about a week and I'll ask her about it - she's awfully good and

usually very helpful.

Maybe it's due to thinking about my legs too much - obsessing, in fact

- but it seems too annoying to be just due to that!

Judy

-- In Joint Replacement , Critrkrazy@... wrote:

>

>

> In a message dated 12/27/2006 8:38:14 P.M. Central Standard Time,

> jdytart@... writes:

>

>

>

>

> I wonder why this happens, ? I'm thinking maybe it's because

> of the nerves that are damaged in doing the surgery. If that's the

> case, then maybe as they heal over time, the feeling goes away?

>

> Does Neurontin work for you without too many side effects? Did you go

> to your orthopedist or your regular doctor - I haven't mentioned this

> to my orthopedist yet, because I just figured out what seemed to be

> going on.

>

> I hope yours goes away soon and totally.

>

> Judy

>

>

>

>

>

>

> Actually, this is weird but my psychiatrist gave it to me. It also

helps

> with anxiety and she said that this would help that also. She's

very cool. I

> don't notice anything from the Neurontin other than the legs are

better. I

> take it at night before bed and for me it works. I kind of had

them before my

> surgery, but it made them worse. I think part of it is just

thinking about

> the legs too much.

>

[Guest guest]

Good grief! $300 a month - great plan they've worked out for us, huh?

You didn't say why you take it - do you have RLS also? From the

replies I'm getting, it seems to be rather common - I don't know if I

always had it and the surgery made it worse or if the surgery could

have caused it in some way...

Take care,

Judy

>

> The way my Dr described Neurontin's effect was that it helped pain

meds

> work better. It slows down or blocks the

> way nerves respond so you can take smaller doses of pain meds and

get the

> same relief as a larger dose. A smaller dose

> equals less side effects. Neural response inhibiter ( I think) is

the big

> fancy name they call it. Neurontin is one of the

> drugs that take several weeks to get to the proper level in your

body so you

> can't just take one when you feel like you

> need it, like aspirin or Tylenol. And as a word of warning do NOT

just quit

> taking them. The withdrawal is horrible

> and mine sets in at about 48 hours. I could quit methadone cold

turkey, if I

> had to, but Neurontin is a whole different

> story. Plus they are expensive, I have been in the " doughnut hole "

of social

> security prescription coverage for 6 months

> and my Neurontin costs me close to $300 a month.

>

[Guest guest]

it's weird but when i was a child, i always shook my legs when i went to bed, sort of like rocking myself to sleep and i did this into my adulthood as well (drove my first husband nuts as well, ha ha). my legs didn't hurt back then, it was just a habit to soothe myself. the restlessness came about in 1994. weird!

Hugs,Lindy LouRight THR 1/22/2007

Good grief! $300 a month - great plan they've worked out for us, huh?You didn't say why you take it - do you have RLS also? From thereplies I'm getting, it seems to be rather common - I don't know if Ialways had it and the surgery made it worse or if the surgery couldhave caused it in some way...Take care,Judy

[Guest guest]

The same thing happened to me, Judy. It wouldn't occur until I had gotten into

bed, and

then it would start. It lasted several weeks after my hip replacement. I found

that if I got

up and walked around a bit, it subsided. It was so annoying.

Arianne

>

> I hope everyone here doesn't think that all I do is complain, because

> really mostly I don't, and I know in a lot of ways I'm making great

> progress. I had both knees replaced October 20th, and this is what is

> happening now... Every day by evening, my legs feel more and more

> " antsy " and by bedtime it is really annoying, keeping me from getting

> to sleep in the first place. As far as I can tell from reading, the

> symptoms are exactly the same as " restless leg syndrome " - what helps

> most is a little vigorous movement, like using my exercise bike for a

> few minutes. Has this happened to anyone else, and if it did - I hope

> - it went away with time? Or any other hints how to deal with it.

>

> Thanks,

>

> Judy

>

[Guest guest]

I have never been told I have RLS but I do

jerk around in my sleep. My DR. and I sat down and discussed long-term

options for pain control. I am going to need something for the rest of my

life so he thought adding Neurontin would give

me more flexibility with pain medication dosage later on. It works! Some

Dr.s disagree but my body knows the truth. Yes,

I have

days where my thoughts are “muddy” but it’s rare when it

happens. I’ll gladly take the trade off.

I do hate to pay the $300 a month but I pay

extra for a “premium” program through Aetna

so all of my generics are only $2

so over the big picture it works out. The “doughnut hole” thing stinks but I will take over paying cash

for all of my meds.

I did for

a couple of years and the $1200 - $1500 per month took every penny we had plus

some. My health plus a crooked

lawyer left me set up to have nothing for the rest of my life. There are

people worse off than I am and I need to keep reminding

myself of that every day.

[Guest guest]

On Dec 28, 2006, at 7:34 AM, Critrkrazy@... wrote:  Yeah, Neurontin is used for several things, and seizures is one of them.  It didn't help with my pain either, just my restless legs.  My Mom takes Tegretol but that's a lot more dangerous, or has a lot more side effects, but works for her.  Makes her weird though and slur her words and she has to have her blood levels checked.   I was on Neurontin for a short time to try to help with long-term insomnia.  It helped me sleep - during the day. ;D  I was literally passing out at my desk, couldn't walk straight, and my speech was slurred.  It was horrible and I only took it for a short time.The Aussie article is an eye-opener, especially if it's linked to iron deficiency.  From a short glance at the article, it looks like people who have it consistently are unable to properly absorb iron.  I wonder if that could be extrapolated to those post-op who have suddenly developed this, that it's something as simple as mild anemia, even so mild as to not be picked up on blood tests?  Have any of us had our blood levels tested for anemia or iron deficiency?  I had weight loss surgery (duodenal switch) in Aug 2005 so had extensive bloodwork done quarterly for a year.  My iron levels were ok.  I've always had jumpy legs at night to some extent, but usually some leg lifts will calm it down.  Since the TKR (right knee) surgery beginning of Nov, it's worse.  Of course, the surgical pain compounds things - twitches that I wouldn't have normally bothered me were painful esp. at first.  I had so much trouble with it that my surgeon prescribed Valium as a muscle relaxer.  I don't take it every night but it seems to have helped and doesn't wipe me out during the day.Another suspect in muscle pain and spasms is magnesium deficiency.  Major stress, such as surgery, wipes out magnesium and it's hard to supplement orally (think "Milk of Magnesia", or "Bowel Prep").  I take Magnesium Glycinate, which causes less intestinal distress.  I also take magnesium injections once a week.  Low mag levels, btw, are hard to diagnose by regular bloodwork, so my "thinks-outside-the-box" doc suggested I try the injections for pain a long time ago and it helped.  Actually, I started out with magnesium IV's but now do the shots.I'm tempted to start up my iron and Vit C again - I noticed I'm also craving citrus (which turns me inside out!) and you have to take iron with Vitamin C.  Maybe it'll help.For those who have just developed this since surgery, I really wonder if it's a deficiency of some kind and that article makes me wonder about iron.  It would be interesting to see if supplementation helps.Note:  you have to take Calcium and Iron several hours apart.BTW, I was 7 weeks out on Mon.  I'm now at 130 for flexion and my extension is normal.  I have slacked on my exercises over Christmas so I need to do some major work on my strength.  I went up a few steps last Friday evening like a normal person for the first time in probably 25-30 years. Z (Valium - shades o' the 70's!)(Platform shoes!)(Disco!)(Give peas a chance!)(I'm OK - You're OK!)(Today is the third day of the rest of your life!)

[Guest guest]

Everyone has been so helpful - since a lot of us seem to have

developed this after surgery or it got worse after surgery - there

must be a connection. Nerve damage seems like one likely clue - but

what about the iron/magnesium connection? I think I will try a small

dose of iron - not the huge amounts I took pre- and post-op. I

already take magnesium daily so will continue that as well. And then

- maybe one of the most important things - try to be patient and give

this some time to heal and get back to normal. It's only been a

couple of months since my knees were replaced.

Judy

>

> I hope everyone here doesn't think that all I do is complain, because

> really mostly I don't, and I know in a lot of ways I'm making great

> progress. I had both knees replaced October 20th, and this is what is

> happening now... Every day by evening, my legs feel more and more

> " antsy " and by bedtime it is really annoying, keeping me from getting

> to sleep in the first place. As far as I can tell from reading, the

> symptoms are exactly the same as " restless leg syndrome " - what helps

> most is a little vigorous movement, like using my exercise bike for a

> few minutes. Has this happened to anyone else, and if it did - I hope

> - it went away with time? Or any other hints how to deal with it.

>

> Thanks,

>

> Judy

>

[Guest guest]

yes sometimes exercise does help it some . . . glad it helped you, JUDY.

Hugs,Lindy LouRight THR 1/22/2007

Thanks so much, Lindy - I will check out that link. Meanwhile, I havea new plan which seems to help somewhat - I get on my exercise bikefor a few minutes before going to bed and it seems to calm it down. If I could only take a warm bath, I know that would help too - but I'mstill not able to sit down in the tub - or afraid to try. Soon, I hope.It's such a weird and annoying thing to have - Take care of yourselftoo...Judy

[Guest guest]

In a message dated 12/28/2006 10:56:04 A.M. Central Standard Time, jdytart@... writes:

Good grief! $300 a month - great plan they've worked out for us, huh?

They have generic Neurontin.