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Old 12-19-2008, 09:00 AM   #1
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bondsnlove HB User
no help for RLS ?

Hi ,my name is Sarah,49 years old and new to the board. For as long as i can remember I have had RLS. Long before the health boards placed a name for it,I can remember getting out of bed at night and walking around my bedroom just to get the jerks and tinging to go away. I started seeing a V.A. doctor about five years ago as my reg. doctor. I was so happy to see a ad for med for RLS . On my next appt. to my doctor,I asked about getting the med. She refused to let me try it. she said she'd had a few under her care that she'd let try it and it changed their life,for the worse. She went on to say how it could make you gamble or have sex out of marrage???? She went as far as to tell me to get a bottle of poison from the mixed drink section of my store and sip a small amount before going to bed. As for yesterday I have a new doctor with the V.A. For some reason my other doctor can't "see" people anymore...hm wonder if she killed someone with her food store advice? lol Anyways,Have any of you tried the meds for RLS ? As for the side afects...I've been married for 26 years,we have eight daughters,27 foster children we helped to raise,21 grandkids and four great grand kids...I don't think there's a drup that could "make" me want to be un-faithful. As for the gambleing..We live on a 50 ak farm and raise horses and G.S. dogs for the police and rescue. I don't see me betting on which horse will finish eating first or how many pups our dog will have. On the funny side of the possible side afect,my husband says TAKE THE MEDS ,,TAKE THE MEDS..yeah, he's not worried about helping my RLS..he's got another reason lol
So, let me know what you guys think about the med. I wish I could remember the name and spelling of it,but hopefully someone will know what I am talking about,I've only seen one ad on T.V. I had to have my stomock removed almost ten years ago so I am VERY limited to what I can take. cold meds,aspern,anti-inflamatorys... all is off limit. I can drink red wine for pain and do drink 4 oz. of it a day . As you'd think,it knocks me out as if I'd drank a bottle of it. Without it,I can't sleep for RLS or pain from other things. With wine,I fall a sleep but wake up about 3-4 hours later and rest is over. Thanks guys and sorry I just wrote a book.

 
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Old 12-21-2008, 06:06 PM   #2
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Re: no help for RLS ?

The bad things I've heard about the RLS drugs are 1) they eventually stop working, 2) they cause "augmentation" (the RLS spreads to other body parts, arms, etc.), 3) when you go off the drug, there's a rebound effect (worsening of RLS). For those reasons, I've decided not to try them. Have you tried supplemental magnesium? If you search around posts here, some have written about success with it.

 
Old 12-27-2008, 01:56 PM   #3
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Re: no help for RLS ?

I have taken a few different RLS drugs. Mirapex , requip and klonopin which technically is not a rls drug. Yes I have taken the mirapex and it stopped working and took the klonopin and switched back to the mirapex. I tried the requip when I was first diagnosed after the sleep study and It didnt work well for me. Im not a good one to ask about the other side effects you mentioned. I just got divorced but I have been taking the rls meds for years and the divorce was recent.

 
Old 01-08-2009, 03:56 AM   #4
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puggsley2 HB User
Re: no help for RLS ?

Quote:
Originally Posted by bondsnlove View Post
Hi ,my name is Sarah,49 years old and new to the board. For as long as i can remember I have had RLS. Long before the health boards placed a name for it,I can remember getting out of bed at night and walking around my bedroom just to get the jerks and tinging to go away. I started seeing a V.A. doctor about five years ago as my reg. doctor. I was so happy to see a ad for med for RLS . On my next appt. to my doctor,I asked about getting the med. She refused to let me try it. she said she'd had a few under her care that she'd let try it and it changed their life,for the worse. She went on to say how it could make you gamble or have sex out of marrage???? She went as far as to tell me to get a bottle of poison from the mixed drink section of my store and sip a small amount before going to bed. As for yesterday I have a new doctor with the V.A. For some reason my other doctor can't "see" people anymore...hm wonder if she killed someone with her food store advice? lol Anyways,Have any of you tried the meds for RLS ? As for the side afects...I've been married for 26 years,we have eight daughters,27 foster children we helped to raise,21 grandkids and four great grand kids...I don't think there's a drup that could "make" me want to be un-faithful. As for the gambleing..We live on a 50 ak farm and raise horses and G.S. dogs for the police and rescue. I don't see me betting on which horse will finish eating first or how many pups our dog will have. On the funny side of the possible side afect,my husband says TAKE THE MEDS ,,TAKE THE MEDS..yeah, he's not worried about helping my RLS..he's got another reason lol
So, let me know what you guys think about the med. I wish I could remember the name and spelling of it,but hopefully someone will know what I am talking about,I've only seen one ad on T.V. I had to have my stomock removed almost ten years ago so I am VERY limited to what I can take. cold meds,aspern,anti-inflamatorys... all is off limit. I can drink red wine for pain and do drink 4 oz. of it a day . As you'd think,it knocks me out as if I'd drank a bottle of it. Without it,I can't sleep for RLS or pain from other things. With wine,I fall a sleep but wake up about 3-4 hours later and rest is over. Thanks guys and sorry I just wrote a book.

My 63 year old wife has RLS and she eventually went to a neurologist in Perth Western Australia. He prescribed Sifrol on an increasing dose. She took 1/4 of a tablet (1/8mg) the first night and has had no recurrence of the symptoms. She am still only on 1/4mg and all is well again.
Sifrol was originally a drug for Parkinsons disease but it works wonders for her RLS. Ask your doctor for his opinion and insist on getting help. Most doctors here thought she was imagining the problem and it took a few table thumps before she was treated seriously.

Last edited by puggsley2; 01-08-2009 at 03:59 AM. Reason: It was my wife who has the symptoms not me

 
Old 01-08-2009, 05:09 AM   #5
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Re: no help for RLS ?

It may be a great idea to at least try some magnesium citrate. Along with that take some calcium too, because magnesium can lower your calcium and they do work well together, one will help the other absorb into the system. It's easy, it's cheap and works wonders for many with your symptoms. Sometimes people get restless legs just from being low on Mag./Calcium and dehydrated too. Drink plenty of water, if you don't drink much water now, increase it slowly, you can get water poisoning if you drink too much too fast. Start out with 250mg a day, increase it slowly till you notice a difference, if you get a runny stool just back off the dose a little bit till you get used to it, then increase again, your body will adjust eventually. To be on the safe side begin taking the calcium along with the Magnesium. Any questions just ask. Diana

Last edited by drs; 01-08-2009 at 05:10 AM.

 
Old 01-29-2009, 01:11 PM   #6
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Re: no help for RLS ?

I'm with drs, here. I was diagnosed with almost 500 movements a night (arm and leg) during a sleep study. Iron supplementation and mirapex did nothing, except make it worse. I found out by accident (sorry folks, my family doctor and my specialists denied this was a possibility) that blood pressure medication was causing my problems...when I switched meds, my plms STOPPED! I have since learned that electrolyte imbalances and other deficiencies (magnesium in particular) can cause rls as can many different kinds of meds.

I might add that simply taking a supplement may or may not help...there is much more to this!

Bethsheba

 
Old 03-18-2009, 07:09 AM   #7
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Wink Re: no help for RLS ?

I have had RLS for many years.....some say it's directly linked to my iron deficiency anemia....but I was put on Neurontin and didn't like the side effects but took it anyway.A family member who is a Dr asked me to try Lyrica.I take 75MG 3Xdaily and I am finally free of RLS. It only has one side effect that I noticed-it does increase your appetite.

 
Old 04-19-2009, 10:09 AM   #8
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maggzz HB User
Re: no help for RLS ?

When I first saw a doctor about the restless legs she told me that the only drug that worked for it was Clonazepam (an anti-convulsant) I took it happily for years until it started to become less effective. Then I think I must have tried every other drug available for RLS and none of them worked. My first doctor was right. I am now back on it and I just take more. It doesn't seem to have any side effects and I have to take something. RLS is one of those conditions that could drive you insane if you had to just put up with it:.

 
Old 04-20-2009, 01:17 PM   #9
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Re: no help for RLS ?

When I stopped taking Vitamin E my RLS stopped.

Some people get relief from putting a bar of bath soap in bed near legs. I use this for cramps and it works. Doctors agree that it works, however, they have no clue how or why it works. There is no harm having a bar of soap in bed, give it a try and see if it helps.

I use Dove bath soap and many other brands work also.

 
Old 04-20-2009, 06:20 PM   #10
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Re: no help for RLS ?


Hi bondsnlove
Enjoyed reading your post book... hahaaa~ Your a very busy lady. Wow-Zer...& Congrats on the blessings around you.
Wrestled with RLS for so many yrs.. No pun intended.. One night, my legs took off; One would've thought I was gonna take off and fly. In earnestness not to wake up hubby. Yet, I hear this wisper of a voice from him, asking. Did you Win the Race? the giggles started. The legs really do seem to have a mind of their own.. Requip possibly sound familiar ?
~ One of the posters on this thread mentioned RLS do-N-it's thing with the rest of the body too. Yeppers, I must of looked like a wet turkey trying to take flight... Legs and arms goin constantly! I just didn't have a flight pattern.
You'd written a bit of humor about the ( side effects ) My thoughts exactly ! Ummm, Now through my own expierence. I can only relate to what I'd go through and express the reality of what seems to the average bear that the ( side effects ) seem a bit out there. One would also possibly think ~ I have more control than that. and I'd surely know the who, what, when & where...

There is a medicine I take only at night; that I now tell hubby the very moment I take it. As it responds to me very quickly.. within 10min. I go streight to bed, I do not pass "GO". If a phone call comes in ~ I've learned not to accept. Hubby has come in the room, not realizing I'd taken the medicine and we have a completely normal conversation/ interacton. Next day, to confirm the conversation or plans made ect. I'm saying: What are you talking about ??? I never said I'd do that... ect.... many a very warm debate. Cuz, I did not say that...! ~ ~ I was able to connect the dots of the many Duuh, moments.
A person literally responds/interacts just like normal
.
They do not act like ~ what one would think as their off or not themselves in anyway... completely normal ~This is, as unbelievable, as RLS is...

Explaining the symptoms to Doc 30yrs. ago he'd look at me a bit " Yeah, Right "!! ??? with a " Your too Young to have ". Response. My father suffered endless years of RLS.
Listed below is what would assit me.
~ Warm / Hot shower ( H2o sraying on lower spine right before bedtime ).
~ Warm / Hot Soaking bath right before bedtime. (A bit of stretching the lower back and legs before shower or bath).
~ Warm / Cool packs placed under or near lower swell of spine. ( kept there during the night ).
~ Anti-Inflammatory OTC
~ Arthritis type cream or spray applied to the lower swell of spine. ( DO NOT apply directly after a bath or shower ).
~ 8in. x 10in gel patch applied to lower swell of spine. ( The patch contained like a camphor - menthol - eucalyptus combination in a gel base ).
~ Increased Calcium w/vit-D.
~ Reviewed nutritional intake.
~ Reviewed everything that I ate & drank that would increase neurological stimuli.
~ Slept in different rooms. On couch, recliner, air mattress, floor.
~ Chiropractor.
Ultrasound, TENZ unit, Manipulation.

Hope you can pull the help from what I've posted and surely didn't want to overwhelm anyone. All is well in the scope of working with RLS. My body does not absorb nutrients very well and have found a strong connection to that aspect...
Best to all


















Last edited by Drain Bamaged; 04-20-2009 at 06:40 PM.

 
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