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Global Patient Feedback for Restless Leg Syndrome ( Post a comment )
Question/Comment:
For (about 5 years) I have had leg cramps that make my cry. I wake up at all hours of the night to get my legs to quit hurting. Nothing has helped. When it is going to rain or the weather changes I don't get any sleep. Does it sound like I have RLS?
29 year old Female
Posted: 2009-03-26 16:05:52
iGuard.org Answer/Reply:
Leg cramps are not a common symptoms of Restless Leg Syndrome (RLS). RLS is typically described as unpleasant sensations in the calves, thighs, feet or arms, often described as: creeping, crawling, jittery, tingling, burning, and aching.
There are many different causes of leg cramps. It can be caused by dehydration, injury or low calcium or potassium levels in your body. Different types and causes of leg cramps can change the types of treatment. If your leg cramps are still bothering you, you may want to follow up with your doctor to find out the cause and the proper treatment.
Posted: 2009-04-03 17:09:34
Question/Comment:
One of the quickest ways to get rid of leg cramps is to drink tonic water when the cramps start. It takes them right away. My husband and brother in law also use this effectively. It's $.68 a bottle at Wal-Mart. Also you may need to increase your calcium intake.
63 year old Female
Posted: 2009-03-04 03:10:18
Question/Comment:
I have suffered from RLS and leg and foot cramps during the night.This sounds crazy but someone suggested in a newspaper article to try putting a bar of soap under your sheets. It worked for me and I suggested it to my son-in-law who looked at me kind of cross-eyed but he tried it and it worked. I don't know why it works; maybe it's a placebo effect but hey, it certainly can't hurt you to try it I asked my doctor about it and he said he hadn't heard about this but said if it works go for it.
One day my grandaughter was visiting and was in the bedroom before we made up the bed. She saw the bar of soap and asked my wife if grandpa was "losing it". My wife explained and we had a good laugh.
76 year old Male
Posted: 2009-02-23 19:32:43
Answer/Reply:
I was taking Quinine Sulfate tablets for cramps and restless legs, they worked great till I was told they no longer market these tablets. I then tried Qualaquin, but now my insurance company does not cover these as they are only FDA approved for Malaria.
This is a brand name for a quinine sulfate capsule.
I was also told about the bar of soap under the sheets, I will try that also.
58 year old Female
Posted: 2009-02-28 21:00:42
Answer/Reply:
I have had RLS for quite a few years. My mother has a book of home remedies, and she read about putting Irish Spring soap under the sheet, and I have not had a problem since then. I too, have suggested it to quite a few people, and everyone that I have told has tried it, and it works for them too. It does sound strange, but it does work. I think it is just the smell of it that relaxes you enough so that you can get a good nights sleep without legs or arms jumping.
53 year old Female
Posted: 2009-04-23 18:03:14
Question/Comment:
My friend, a 75 year old female, has flat feet. As a result of this, she has occasional leg cramps and sore, burning sensation in her feet. Any information concerning treatment for relief or cure will be appreciated.
78 year old Male
Posted: 2009-01-06 13:33:18
Answer/Reply:
Magnesiun helps with any leg cramps. Don't know of or have any side effects from it
& I am on Neurontin & many Rx's Try it! Seems to work pretty quickly also & it is CHEAP!!
Good Luck!
55 year old Female
Posted: 2009-01-20 13:28:17
Answer/Reply:
Is the Magnesium or the Neurontin that is helping your restless legs, or the combination? I am willing to try Magnesium, but am not sure my doctor would want me to take Neurontin. What other medicines do you take? My doctor has prescribed Chromagen. which is a high-powered Iron complex (it includes B-12, Vit. C, and a factor to reduce nausea), but it is very constipating and I only use it occasionally. I don't know if it has helped or not.
79 year old Female
Posted: 2009-03-06 08:41:12
Question/Comment:
I was diagnosed with RLS about 5 years ago, I am a 46 year old female. I originally tried Requip but did not like the side affects at all so my doctor switched me to Mirapex - I started on the lowest dosage possible and have had to increase the dosage twice in the last several years. The Mirapex does the trick but I do suffer from side effects such as compulsion and horrible nightmares......I recenty had to change neurologists because of insurance reasons and the new doctor had me try clonazepam (which did nothing but give me several nights of misery) and then gabapentin (again several nights of misery). So I am back to the Mirapex and its ugly side effects but at least I sleep. I am interested in those of you who mentioned the medication Carbadopa/Levadopa - that one I have never heard but I will be sure to ask my doctor. Thanks!
46 year old Female
Posted: 2009-01-02 15:59:23
iGuard.org Answer/Reply:
I was diagnosed with RLS in my mid 30's, and was prescribed Sinimet and Klonopin. Sinimet is the brand name of the drug you were referring to. I take 3 25/100 mg. tabs of Sinimet, and 3 mg. of Klonopin every night before I go to bed, and have had no problems or severe side effects using these medications. I have been on this dosage for several years now, and have not had to make any adjustments. I did go off Klonopin for awhile, something you have to titrate down slowly so you don't go through withdrawal symptoms, but went back on it about six months later, as it did help me fall asleep better. You do have to eat something before taking Sinimet, because it will upset your stomach, I almost quit taking it because I got sick when I first started it, but I adjusted and just learned that I have to eat before taking it. Hope this information helps you, I am 54 now, with no major side effects.
Posted: 2009-01-07 14:45:29
Question/Comment:
I had RLS severly. tried requip but had to quit due to very severe muscle spasm in both legs from foot to hips, so bad at night it was worse than RLS. I started with a product (waiora) about month ago (was for help with my fibromyalgia) and the only side affect was my RLS is down to hardly anything. I take 10 drops of their naturial cellular defense in coffee in a.m.-2 tlbsp. essential daily nutreints and 2 capsule of their healthy aging formula. I wake up with hardly any stiffness and my legs feel nearly pain free. don't know if you can publish these comments but this has sure helped me. (will be 73 in 3 days-female )
73 year old Female
Posted: 2008-11-20 11:32:15
iGuard.org Answer/Reply:
I have been on Requip and Neurotin for several years now and anytime I have asked the Dr. about my severe muscle and foot cramps he has said he did not know what to do with them, so I am printing you artical out for the Dr.to read.. The Dr. recently changed my meds to 600mg of Neurotin and mirapex, my legs ae driving me up a wall and I don't wake up all day long.
Posted: 2008-12-07 16:04:12
iGuard.org Answer/Reply:
I have been on Requip and Neurotin for several years now and anytime I have asked the Dr. about my severe muscle and foot cramps he has said he did not know what to do with them, so I am printing you artical out for the Dr.to read.. The Dr. recently changed my meds to 600mg of Neurotin and mirapex, my legs ae driving me up a wall and I don't wake up all day long.
68 yr old Female
December 7, 2008
Posted: 2008-12-07 16:05:15
Answer/Reply:
i to was put on requip for rls, and had the same problem,every nerve in my body was crawling so bad that i considered, taking a hand full of sleeping meds just so i could get some relife, and now medicare, is going to stop paying for the mirapex i take for rls, and its the only medication that helps. so now i dont know what to do, maybe shake medicare up or wake them up
55y female
56 year old Female
Posted: 2008-12-17 21:03:52
Answer/Reply:
Same problem, though years older. May I suggest you go to
< www.rls.org > ...on your computer and get current information about what is being done in the field of Restless Leg Syndrome? Excellent source site! Their Phone #-1-877-INFO-RLS...
And best of luck. It's a dreadful condition, and perhaps in numbers, we can fight Medicare decisions!
81 year old female...see below. I need my MIRAPEX!
83 year old Female
Posted: 2008-12-19 17:57:03
Answer/Reply:
I'm not very familiar with Medicare, however, have you tried calling the pharmicudical company itself? Often they have 'bridge' programs where they will give you the medication for a smaller fee or even free, and they will often also fight for you to get approval. I can't promise it will work, but the worst anyone can say is no. And the best is that both of you might be able to get the medication. Another option is for your doctor to ask the company to provide it to you under a 'compassionate use' clause, meaning it makes your quality of life much more meaningful. Again, just thoughts, but didn't think it would hurt to share them. Good luck! I, btw, take Mirapex and have not had any unbearable side effects (then again, when you're on thirty-plus meds and suppliments it's truly hard to tell), however I do know that I had horrific nausea with Requip, so I couldn't take that since I live with nausea daily and that drug just increased it. Mirapex is so much better for me.
41 year old Female
Posted: 2009-05-04 18:17:30
Answer/Reply:
Where do you get the waiora? I would like to check it out
68 year old Female
Posted: 2009-02-01 15:49:01
Question/Comment:
I was taking Requip for my Restless Leg Syndrome, although the doctor had prescribed it 'off label', in other words, he said, you don't have sleep apnea, but it runs in your family, so we'll try this and see how it works. Well it worked really well, I used to sleep all day, and now I was able to get up and stay awake all day. Then, Medicare insisted I switch to the generic, Ropinorole, which is for Sleep Apnea. I used it for 2 months, but was waking up several times at night, and falling asleep. So my doctor wrote a script that said, 'no substitutions allowed'. But the pharmacy said Medicare said, 'You can't do that, you HAVE to take the generic. So I went back to my doctor, who'd done the sleep study, and he prescripted Gabapentin, which is for seizures, which I also don't have. And so now, I'm taking that, and its not working so great. I'm also going through menopause, so I've added a few other new things to see if they'll help Black Cohosh, 40 mg, and Lutein 20 mgs for eye health, Rapid Energy Chewing gum and when I've used up the Gabapentin, I might try a homeopathic remedy for restless legs I got at the store: Hylands Restful Legs.
52 year old Female
Posted: 2008-10-05 23:27:57
Question/Comment:
i also have rls; and m.s. ,i am always in pain. i take generic requip,generic synermet, plus baclofen,tramadol,even cymbalta for pains. but i still have spells all day and night,they start at my knees and go down,i tighten my legs and it helps for a second.i cant really find the right words to tell you how it feels,but my god .it hurts.i am also in a wheel chair,but i can still take a few steps,i also am trying to move my legs all the time,any ideas.could it be something else? thanks for any help,janie,
46 year old Female
Posted: 2008-09-26 23:38:14
Answer/Reply:
Hi,Janie, I was reading your comments. I've suffered for yrs. before I found out that I had Multiple Myeloma (bone marrow/blood cancer) and than I was diagnosised with fibromyalgia. You might want to start keeping a journal to see if your pain worsens in different weather,or during different times of the month. Hope this might help! God Bless, Lori
44 year old Female
Posted: 2008-10-01 16:26:53
iGuard.org Answer/Reply:
i also .have rls,ms constant pain i go to clev clinic. take neurontin,pain patch, and percoset for brkthru pain. went off ms injections for a while(?) seems to work for me very well! Tried pain pump, pain regulator (both oper. at CC) but this combo works the best for me.
Posted: 2009-02-16 12:30:15
Question/Comment:
SEE MY POSTING....42 YR OLD FEMALE ON GENERIC SYNEMET
43 year old Female
Posted: 2008-08-04 21:16:59
iGuard.org Answer/Reply:
My mom has a severe case of RLS and it has been driving her crazy for at least a year now. She's tried Requip, with little to no relief. She was just prescribed a low dose one pill at bedtime Sinemet generic today and instructed to try it for 10 days. What should she expect if it is to work. I'm so afraid it won't and she will give up. Any serious side effects?
Posted: 2008-08-14 21:41:43
Question/Comment:
Wow! It's amazing what influence the pharmecutical companies have these days!! I have had Restless Leg Syndrome for more than 20 years...and I'm only 42. I have been on the generic form of Sinemet, Carbadopa/Levadopa 25-100 since I was 23 yrs old (It's used to treat Parkinson's but I'm told that doesn't mean I'll get it). I started with 1/2 a pill but am now up to 1....sometimes, lately, 1 1/2 depending on how bad my legs get. I swear by this stuff!!!! I have never tried Requip or some of the other stuff all of you are posting about....my mom has (a recent sufferer for 2 yrs) and she says the Carbadopa/Levadopa works the best for her. Carbadopa/Levadopa in it's generic form is fairly inexpensive...and it works for RLS! I have been searching for side effects....because after all I have been taking it for 20 years but can't seem to find any. I was told I would build a tolerance to it...but I think 1 to 1 1/2 from 1/2 pill over 20 yrs ain't that bad!!! Maybe it's not for everybody....but I wouldn't trust anything else!
43 year old Female
Posted: 2008-08-04 21:13:46
Answer/Reply:
I was given the carbadopa/levadopa form of sinamet when I was finally diagnosed with RLS after 30 years of no sleep, severe spasms, and generally just wanting a way out of my misery! Initially, I thought I was in heaven for about one week, and then the augmentation began! Even my ARMS started severe RLS! So I found another Neurologist specializing in RLS, he put me on Mirapex, and although I must increase dosage in tiny amounts, it has kept me well controlled for about 6 blessed years.
And yes, my Medicare Advantage plan has informed me that Mirapex will be placed in a costlier tier next year (Who decides these things?), I cannot switch to Requip due to nausea, dizziness, and limb pain when I was on trial research for its use in RLS! So thank you, Medicare, it will cost far more next year, but what is the choice?
I am an 81 year old female who has suffered RLS (undiagnosed) since 30 years of age!
83 year old Female
Posted: 2008-12-19 17:36:21
Question/Comment:
I have RLS and was told about medications that could/would help, but I'm not sure what to take. I was also told that by taking something for my RLS at such a young age, I could possably become immune to the medication. Is this a true statement or am I just being paranoid? I have had this condition for aprox 11 years now.
29 year old Female
Posted: 2008-07-31 22:34:40
iGuard.org Answer/Reply:
Unfortunately, disease symptoms change - they often get worse over time and require an increase in dose of medication or a change in medication. People may confuse this worsening of disease with becoming immune to a particular medication.
Posted: 2008-08-06 15:13:01
iGuard.org Answer/Reply:
I am 33 and I take amatriptyline for RLS. I have also taken neurontin, mobic, etodolac, ambien, garbetin, and a few others. I have just come out the military and VA swears that I did not have this condition. WHATEVER!!! My legs feel so......It is a feeling that is so hard to describe!! I can't stay sleep at night, my legs are constantly moving.....THE AGONY!!! If you have a good physician; you can tolerate the pain and he/she can help you through. Make sure that you describe your sleep pattern and how long it usually takes you to fall asleep. Keep a journal of how you feel with the medication you are taking and you will finf the right combination of medication to help you with your pain. God Bless You and Good Luck!!!
Posted: 2008-10-20 03:36:08
Question/Comment:
I take Neurontin 3 times a day to help with my moods and for restless leg syndrome. So far it has days it helps and days it doesn't, but I will give it time.
37 year old Female
Posted: 2008-07-26 22:47:35
Answer/Reply:
My mother takes this medication also and she said the same thing about it. It had its days were it would help and when it wouldn't. She didn't give up either and now it works all of the time. Hang in there and it will do what it needs to when it needs to.
29 year old Female
Posted: 2008-07-31 22:25:25
Question/Comment:
Requip did the opposite of what it should have done for me. I felt like I was having seizures all night. I love Mirapex.
53 year old Female
Posted: 2008-07-17 17:19:31
Question/Comment:
I have found Lunesta to be very helpful regarding RLS.
71 yo female
73 year old Female
Posted: 2008-07-03 19:04:49
Question/Comment:
I have been taking gabapentin-300mg. 1 pill at night and it gives me relief to make sleeping at night alot better.
54 year old Female
Posted: 2008-06-18 02:34:03
Question/Comment:
I am 45 yrs old and suffer from RLS. My doctor prescribed Propranolol for it. I don't thing it helping much, but I can't afford Requip. What can I do?
47 year old Female
Posted: 2008-05-30 06:04:06
Answer/Reply:
With your doctor and the maker of REQUIP ,"GlaxoSmithKline" they should be able to help you. There are a lot of programs that can help with medication. Best wishes to you. All I know is if I did not have my Requip I would not be able to function.
45 year old Female
Posted: 2008-06-22 21:24:38
Question/Comment:
I have RLS and Requp 3 mg. has helped me more than words can say. I suffered from RLS for 33 yrs and believe me it's no fun. I started off with 1 mg. than 2mg, now 3mg. Hope this helps.
70 year old Female
Posted: 2008-05-26 12:30:24
iGuard.org Answer/Reply:
I alsosuffer from Restless LegSyndrome, and until three years ago, I didn't know Requip existed.. For 40 years I suffered with it. Like you I started off with 1mg,than 2mg, now 3mg 3x a day. What a relief!
I JUST WONDER WHAT HAPPENS WHEN IT NO LONGER WORKS. HOPEFULLY I'LL NEVER GET TO THAT POINT.
Posted: 2008-07-17 14:08:36
Answer/Reply:
I alsosuffer from Restless LegSyndrome, and until three years ago, I didn't know Requip existed.. For 40 years I suffered with it. Like you I started off with 1mg,than 2mg, now 3mg 3x a day. What a relief!
I JUST WONDER WHAT HAPPENS WHEN IT NO LONGER WORKS. HOPEFULLY I'LL NEVER GET TO THAT POINT.
70 year old Female
Posted: 2008-07-17 14:08:36
Question/Comment:
I take both gabapentin and requip for RLS. I have had it for 25 years. When I was only taking the gabapentin I had relief for many years but the older I got the worse my RLS got. When I started taking the requip at the same time I really got relief. I actually slept all night for the first time in years. It felt so good! I have found that if you put a pillow under you feet it does give some relief.
52 year old Female
Posted: 2008-05-16 10:48:54
Question/Comment:
I am taking Mirapex - was wondering what dose the 85 year old lady was taking!
I am taking .5 a day. I still have some problems - especially lately.
I have problems with walking also.
For the 49 year old - I feel badly you have not gotten any help. It is difficult to have a chronic condition.
Wish there were some answers.
I have firbromayalgia also and an auto immune disease - Sarcoid - plus a transplant patient.
lou g. 69 yr.
71 year old Female
Posted: 2008-05-13 16:41:32
Question/Comment:
I'm 85 yrs. old and have had RLS for over 5 years. I take Mirapex and Neurontin. When it became apparent that I needed to increase the Mirapex doseage my doctor changed my medication to Requip. It didn't help even in a small way. By adding 1 extra doseage of Mirapex daily, the problem was solved. A relative of mine takes Requip with great result. His reaction to Mirapex was the same am mine was to Requip. I can't even miss one doseage of Mirapex without bad results.
87 year old Female
Posted: 2008-04-27 11:02:49
Question/Comment:
All I can say is "I feel your pain". I have suffered for years and now my whole life is turned upside down because of fibromyalgia, hypothyroid, inflammation, low vitamin D, low iron, restless legs, no REM sleep and now I'm going to lose a job and benefits. TODAY I listened a radio show and perhaps you should take a look: www.hotzehwc.com.
The thing they stress is it's not normal to put something in the body that's not supposed to be there. Instead, find the missing nutrient or whatever, and start putting it back in the body.
I am on 80 mg adderral and 800 mg provigil to stay awake because I can't sleep correctly so I'm exhausted all the time. now the aches and pains are so bad i can't walk from the parking lot without stopping. i've had it with my 5 specialist and i'm going to try to see the dr. from the radio show today. i honestly think the meds are a vicious cycle and now i'm broke and about to be unemployed and uninsured because of 7 years of experiments with my body. Sorry, i think i needed to vent. check out the website and best wishes for recovery.
50 year old Female
Posted: 2008-04-23 18:16:17
Answer/Reply:
I so feel for you. I don't have the exact issues as you, but I do have many. With the Vit D issue, have you considered having your dr prescribe 50,000iu a week? It's a prescription only but you'll be shocked at how much better it makes you feel. If he won't do that or you can't afford that, you should take at least 4000 a day, and that's easy, there are inexpensive 1000iu a day capsules. That will help your inflamation and your mood, hopefully, because it did that for me. Also, the rem sleep, I read somewhere that often when you can't get rem sleep it's because you are short of melatonin, again, a relatively inexpensive way to solve sleep issues. My youngest who is 11 was on five medications at one point, and I've weaned him down. One of the meds was rozerem (sp?) and it was a $30 co pay. I have him down now to just a 20mg adderall during the day, and a 3mg melatonin at night, and he has been sleeping thru the night for the first time in his memory. And waking in a good mood because he has actually gotten decent sleep. Melatonin will run you around ten dollars for a bottle of ninety. An adult's dose, depending on your weight is usually between 3-6 mg. I was amazed at how instantly this worked for my son, I suffer from insomnia also, mostly from my own health issues, but it's been ongoing since childhood, and watching B get a full night's sleep is a blessing. And I had to take him away from the psychiatrist who simply kept drugging him more and more. I've gotten to the point in his illness (he has asperger's syndrome, with ocd, sensory issues the whole nine yards) and my stuff, pituitary sectreting tumor among many other serious issues, that I've been doing tons of research and if it's not dangerous to either of us, I will try anything to help us. I wish you the best of luck and just try melatoin, you may find that's one of the reasons you are'nt getting a full nights sleep. And if I were losing my insurance, I would go see every dr I needed to, and have them write prescriptions for me with as many refills as they would give me, as well as paper postdated scripts for anything that is controlled. I wish you luck, it sounds like you're really going thru a difficult time, but you aren't alone and if you need to vent again, please, do so. Take care of yourself!!
41 year old Female
Posted: 2009-05-04 18:47:56
Question/Comment:
i am taking both gabapentin and requip and still having a lot of problems with my legs hurting constantly Does anyone have any thing which works better or know of another way to get relief.
51 year old Female
Posted: 2008-04-22 20:43:52
iGuard.org Answer/Reply:
MIRAPEX - IT'S THE ONLY THING THAT HAS SEEMED TO HELP ME SO FAR
Posted: 2008-04-23 15:25:50
Answer/Reply:
my husband takes requip, kolonopin, and uses a fenental patch for his RLS and back. It works really good, only sometimes he does have to go get a shot now and then when the pain gets to bad.
54 year old Female
Posted: 2009-04-10 20:22:38
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