Patient letters on RLS symptoms and remedies- Page 39


Kicking RLS/PLMD Patient

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.



Sent: Wednesday, January 09, 2002 7:02 PM
Subject: Raising ferritin level

I am a 50 year old woman who developed severe RLS six years ago.  To control my 24 hour restless legs over the past several years I have tried Sinemet, Neurontin, Mirapex and I am currently using Permax to alleviate my symptoms.  Nothing has worked wonderfully well.  

Four months ago I shared some RLS ferritin research with my neurologist and had my iron levels checked.  My ferritin level was 17.05 ug/ml (13.00 normal low and 150.00 normal high), and my serum iron level measured 49.00 mcg/dl  (25.00 normal low and 156.00 normal high).  In order to raise my ferritin level I began taking a 65 mg iron supplement tablet (ferrous sulfate 325 mg) once a day, and have done so for approximately four months.  

In checking my iron levels last week, my ferritin level has gone up to 24.59, but my serum iron has risen just over the normal level to 159.00.  My doctor is concerned about iron overload and has suggested that I reduce my iron supplement in half.

How can I raise my ferritin to the level suggested for RLS sufferers without an iron overload?
Thank you,

Medical Reply

The serum ferritin level is a more accurate measure of body iron stores.  The serum iron levels depend on the amount of iron, but also on the iron binding capacity (how much iron binding protein) of the body. 
When iron levels are low the body produces more iron binding protein which can help carry more iron.  When you start taking more iron, this increased binding capacity may exist for a while and it may seem like the body has a lot more iron.
The number that helps look at this problem is the % iron binding (how much of the binding capacity is being used by the iron).  If this number is within normal limits, then the increase in the iron is just due to more binding capacity and is not a problem.
Discuss this with your doctor while looking at all the above numbers (if he does not have the iron binding capacity, then he should order it).

Sent: Thursday, January 10, 2002 7:00 AM
Subject: RLS and iron

I wrote a few weeks ago about my RLS.   I have just been diagnosed with iron-deficient anemia, and in my research on that, I found 2 references that said that RLS can develop as a result of iron deficiency and can be the initial manifestation of iron deficiency.  

Have you heard of this, and can you lead to any more info about it?  I find it interesting that both of these conditions could have the same causation. 

Thank you so much,
Kristina D.

Medical Reply

Iron is necessary for dopamine synthesis and dopamine, of course, is implicated in RLS.  So it is easier to understand why iron deficiency may be associated with RLS.

Sent: Friday, January 11, 2002 2:27 AM
Subject: RLS

I was excited to find your site and read letters from others who suffer from RLS. I am a 41 year old mother of three and I first started having my symptoms about 6 years ago. At first it was mild twitches that I attributed to being over tired. Over a relatively short period of time it progressed to stronger jerking movements and also an itchy, almost burning sensation.  

I was driving my poor husband crazy so finally I decided to consult a doctor (well, eventually several doctors) all of which told me it was stress and proceeded to give me stress management information.  The RLS continued and I had many sleepless nights, some nights only an hour of sleep before the clock went off to go to work. 

Finally in 1998 while at a doctor visit for a physical exam I decided to mention it to the doctor. He immediately told me Restless Leg Syndrome and kind of explained a little about the condition. He said he would prescribe me a muscle relaxer (Flexril). I went home thinking finally someone knows what is wrong and can help me. I took the medication that night and the RLS was worse than before.  I have been put on three different muscle relaxers all with the same results. 

After finding you site today I showed it to a doctor that I work with and she is going to prescribe one of the meds that you had listed. Wish me luck that it will work!  Thank you for the wonderful web-site and all the great info.

Medical Reply

Have your doctor prescribe Mirapex or Requip (as per the protocol on our RLS Treatment Page) and you have an excellent chance of having all your RLS symptoms relieved.

Sent: Sunday, January 13, 2002 8:20 AM
Subject: RLS
I discovered that there was actually a term for my problem last summer when finally doing research on a severe bout with insomnia.  My RLS started with both my pregnancies and never went away after the second one.  Last night my right leg (the one that seems most affected) throbbed all night from my groin down to my lower calf.  

I am currently taking Tylenol #3 most nights before bed or sometime during the night but am taking a few days "holiday".  I am used to the feeling of electric current running up and down my leg but the pain last night had me worried.  Are there any links between RLS and more serious conditions?  Thoughts of blood clots, bone cancer etc, added to the pain that kept me awake. 

I see that Parkinson meds are often used to treat RLS.  My grandfather suffered from Parkinson's and I do wonder about that being related to RLS as well.  I also noticed that MS medication is sometimes used.  I am just curious as I have not run into any material that discusses any possible related conditions.  


Medical Reply

RLS is a condition that does not change or develop into other conditions such as MS, Parkinson's disease, etc., despite the fact that similar medications are used.  There are other diseases (such as anemia, kidney failure, etc - see our RLS Treatment Page for more information) that seem to cause RLS, and when treated, the RLS also improves.
Mirapex or Requip would work much better than Tylenol #3 and avoids the risk of addiction.

Sent: Sunday, January 13, 2002 8:27 AM
Subject: Medication Change
I have written to you previously regarding my PLMD that occurs at sleep onset.  I also had the PLMD movements during the day.  I had been treating with Sinemet CR 50/200 and .5 mg Klonopin which was effective.  I recently changed the Sinemet to Mirapex, and although my sleep is the same I now have pain in my legs during the day and the night.  I am taking .75 mg of the Mirapex before bedtime and it does not seem to help the pain.  

The pain doesn't give me an irresistible need to move my legs and also I can feel it when walking around.  Any idea what this could be?

Kevin O.

Medical Reply

The pain does not sound like RLS.  Sciatica, muscle pain, etc. are other conditions that must be ruled out by your family doctor.

Sent: Monday, January 14, 2002 12:08 PM
Subject: Re: Just starting RLS therapy (see previous letter, December 11. 2001)

I am now taking 2 to 3 tablets of Sinemet.  Because of the "augmentation" that you have mentioned and from what I've read and also because the Sinemet helps some but not completely, I'm going to see my doctor this Friday to hopefully change to Mirapex or Requip as you have suggested.

However, there is one side affect that has me a little worried, "Orthostatic hypotension"... I am 30 years old... what should I be careful of if I start taking these medications? 


Medical Reply

If you start on a low dose (often only one of the lowest strength tablets) and increase by only 1/2 or one tablet (only if needed) every week, then there should be little chance of you having any side effects, including orthostatic hypotension (low blood pressure when getting up quickly and possibly fainting).

Sent: Tuesday, January 15, 2002 11:58 AM
I have suffered from steadily worsening RLS for the past 8 years. I think that I have tried most of the typically prescribed medications. Neurontin worked for a while. I became anemic on Permax. I have had a sleep study done by a top research MD. He says that Mirapex will not help me. 

I have been on Sinemet CR 50/200 for the past 3 years, having, as is typical, to keep increasing the dosage as augmentation/rebound set in. I take 1/2 pill at 11AM, 1/2 pill at 5PM, 1 pill at 11PM.  At 5:30 AM, with a vengeance, the pain begins, then the horrible feelings that I equate with what electric cattle prods must feel like. Sometimes, reluctantly, I take another half pill and I can soon after get back to a very deep sleep for as much as 3 hours. I find that very strange because it does not make me sleepy any other time..

I understand that an association with iron deficiency is being investigated. Strangely enough, I have hemochromotosis, (iron overload). but I cannot help but think that there might be a connection somehow. As I understand it, it is thought that perhaps the brain does not get enough iron. Is it possible that if iron is being stashed away in the liver, pancreas etc that the brain becomes iron deprived??? I have been asked to participate in a study investigating iron metabolism in RLS but it requires that one give up all meds for 14 days before the study... NOT A CHANCE...I would love to help but I couldn't do that..
I have always felt that there must be some simple answer to this problem. I guess we just have to wait for someone to uncover it.
I look forward to comments,
New Jersey

Medical Reply

I have not idea why the doctor said that Mirapex would not help you.  If Sinemet has been helping (before the usual augmentation problems), then it is very likely that Mirapex will be of benefit. 
Let us know how you do with Mirapex, as that may relieve your RLS problems.

Sent: Tuesday, January 15, 2002 12:02 PM
Subject: No Subject
I just figured out that I have RLS by looking on the Internet on sleep disorders.  I went to my Doctor to get a cure, but she thinks I need an antidepressant.  I have tried several in the past, and do not want to try them anymore.  Finally yesterday she put me on Klonopin, which I tried for the first time last night.  It did not seem to make a difference.  However, I am willing to keep trying it for a while.  I have a very odd sleeping schedule.  

Sometimes I work from 5:00 p.m. to 3:00 a.m., then 2 days a week I work from 9:00 a.m. to 5:00 p.m.  I am wondering if this is my problem.  


Medical Reply

A changing sleep/work schedule can cause RLS to worsen and is not recommended for RLS patients.  Klonopin has a long half-life and may cause daytime sleepiness in a very significant percentage of users.
Mirapex or Requip are much better choices that should relieve your RLS symptoms and let you have a natural sleep without the use of bedtime sedatives.

Sent: Tuesday, January 15, 2002 4:30 PM
Subject: ferritin/tibc levels
Thank you for your quick reply to my question last week about raising my ferritin level from a 17.05 level (1/9/02).  After sharing your information about iron binding capacity with my neurologist we again checked my iron counts and found my ferritin to be 28.70 ng/ml, iron was 60.00 mcg/dl (25.00 normal low - 156.00 normal high), TIBC (Total Iron Binding Capacity) 349.00 ug/dl (250 normal low - 450.00 normal high), and iron saturation 17.2 (20.00 normal low and 50.00 normal high).
Not having a great deal of experience with restless leg patients desiring iron therapy, my doctor is not quite sure if my current iron levels warrant a continuation of my iron supplement (one 65 mg tablet a day).  At what level of TIBC do I cut back my iron supplement?  Can you provide additional parameters or sources which can guide iron therapy without producing an iron overload.
Thank you for your expertise and assistance.

Medical Reply

We normally treat until the serum ferritin level is above 45.  Once that is reached, then the iron should be continued for about another 3 months.  You can then check your serum ferritin levels every 3-6 months after that and see if you need more iron.
One iron tablet per day is not a high dose and may slowly improve your iron/ferritin levels (it may take several months or longer).  Normally we suggest iron tablets at 325 mg (65 mg of elemental iron).

Sent: Tuesday, January 15, 2002 9:20 PM
Subject: RLS and Mirapex
I am 61 and have had RLS for many years but only diagnosed about 2 and 1/2 years ago. Have been on several medications including Sinemet from which I got augmentation.  For the past 2 years I have been taking 3 Mirapex tablets, .0125mg per tablet per day.  One at noon, one at approx 6:00 pm and one about an hour before bedtime.  Until recently, this worked pretty well.  

I still would take Ambien occasionally for sleep.  In the past month or so, I have had considerable leg pain earlier in the day and the Mirapex does not seem to help.  Should I increase the dosage or try Requip?  

Thanks for your time its great to have this source for answers.  My doctor is one who doesn't seem to be interested in finding our more about RLS.

Medical Reply

Generally, increasing the Mirapex by a small amount (1/2 - one tablet) should work well in your situation.  Please make sure that your own doctor approves of this change in medication.

Sent: Wednesday, January 16, 2002 9:27 PM
Subject: Needing advice again

I last corresponded with you in July of 1999.  From  that time on I have been taking three .25mgs of Mirapex each day, which has been completely effective in eliminating my RLS.  However, before starting Mirapex in  1999 my doctor, unaware of rebound and augmentation effects of Sinemet for RLS, had been treating me with very high dosages of Sinemet (three 50/200 CR every day).  

And now,  even after being off Sinemet and on Mirapex for two-and-a-half years, I still have agonizing aching in my legs, which I call my "Sinemet legs," for which I have been taking two Ultram tablets twice a day (with two-to-three tablets of Tylenol 3 twice a day  for the drug holidays). I was sure that my "Sinemet legs" were the legacy left me by being originally treated with such high doses of Sinemet, since the pain mimics exactly the aching of the rebound and augmentation effects experienced while I was on Sinemet. I now am seeing a new neurologist.  

He offered the possibility that the aching in my legs is not due to Sinemet as I had thought all along, but to Mirapex!  What he wants to try this:  I'm to continue taking .25 mgs of Mirapex three times a day, to discontinue the Ultram and instead to take Neurontin (one 300mg Neurontin each day for five days, then two each day until my prescription for 30 Neurontin tablets is gone).   If the Neurontin is as successful as Ultram in dealing with the leg pain, my doctor then wants to try taking me off Mirapex, thinking that the Neurontin might possibly be effective for both my RLS and for what I have called my "Sinemet legs."  

I will be forever grateful to you for the advice you gave me when I first wrote to you  back in 1999 and I have complete trust and confidence in you. Would it be possible for you to give me  your opinion of my new doctor's plan of attack? 

With many thanks once again, 
Rita B.

Medical Reply

RLS is a strange disorder and some patients have had similar experiences to your "Sinemet legs".  It is quite likely that Sinemet was the culprit in causing this new problem and there is a slim chance that Mirapex, another Parkinson's disease drug which acts also on the dopamine system may be continuing your problem.  The only way to prove this would be to get off of the Mirapex.
The idea of adding Neurontin is a good one.  It works on many pain syndromes in addition to helping RLS.  If the Neurontin works, you may be able to get off of Ultram/Tylenol #3 pain medications.
The problem with using Neurontin alone (eliminating the Mirapex) is that most RLS sufferers need a high dose (600 mg to 2400 mg per day) and side effects (such as sleepiness) become quite common.  It may be worth the try to eliminate Mirapex and see whether it is causing your leg problem, but the chances of success (both controlling your RLS on Neurontin alone and resolving your Sinemet legs) are not high.

Sent: Thursday, January 17, 2002 3:57 PM
Subject: Followup to yesterdays email
Thank you for your response to my email of yesterday. I started the Neurontin today (this morning)--one 300mg capsule.  I'm supposed to take just one capsule a day for five days before going to one capsule twice a day.   I'm taking no Ultram at all.

I'm in misery.  Does it take the Neurontin a while to kick in or is my first experience of today the most I can expect from it?

My doctor comes to town  only on Tuesdays and I have no way of contacting him before then. Please tell me what to  do.

Rita B

Medical Reply

The Neurontin should work right away.  We increase the dose slowly so that you can get used to it.

Sent: Tuesday, January 22, 2002 2:42 PM
Subject: Double Checking my symptoms

I have had what I believe to be RLS for several years now, with it becoming worse over the last year.  I have read a lot of your articles and letters on this site.  My symptoms seem to fit except I do not kick in the night or have pain- just a dull ache that forces me to move my legs.  During the evening and through the night, plus when I sit for long periods, like in movies or at dinner, I get the symptoms as follows:  I don't have any legs twitches, and I don't kick anyone at night.  I get a vague aching feeling that forces me to move my legs.  I toss and turn at night when I don't fully wake up from it, but I eventually have to get out of bed and stretch my legs.  Sometimes this helps, sometimes it does not.

I started out with just a few times a month to every night and now the evenings too.  I don't think I have slept through the night more than a few times for a year now.  I often feel fatigued, and feel it is directly related to a bad night sleep.  I have always suffered from headaches, especially if I am woken up suddenly, or right at the beginning of my REM cycle.  Is this a symptom people have?

I have just started Bikram Yoga, so I will keep you all posted on how that works.  Bikram Yoga is also know as hot yoga.  I figure fully stretching all leg muscles in a hot room would be good for this (plus great for your health in general.)

I do not want to take medication for this, but I am getting very frustrated with my lack of sleep and hoe annoying this is.  I am very interested in any naturopathic and exercise related treatments. 

Can anyone verify that I have, at least in your opinion, RLS?

Thanks! Claire

Medical Reply

You do not have to experience leg twitches to have RLS.  Your case sounds very typical of RLS.  The Yoga may help, but most patients with your level of RLS problems will need medication to get relief.  Most who take Mirapex/Requip have great results without significant side effects.

Sent: Tuesday, January 22, 2002 5:57 PM
Subject: Foot tickling RLS sensation 


I have made so many notes after reading your  various letters. However none have mentioned the *foot tickling* sensation in the feet only.
My feet are normal to the touch but have an interior burning and the *pins and needles* sensation commences in the late evening and on getting in to bed I cannot bear the touch of the sheet
on my feet.
Do you think this is  some form of Restless Leg Syndrome or just bad circulation. Any suggestions would be greatly appreciated
Boca Raton, Florida

Medical Reply

Your complaints of foot tickling sensation occur in other RLS sufferers.  This is not a very common complaint, but also is not rare.  It may get better with RLS medication (Mirapex/Requip) or it may be a separate neuropathy type of problem (which unless related to B12, folate deficiency or diabetes, may not have a treatment).

Sent: Monday, December 31, 2001 7:18 AM
Subject: Requip


I had to gradually increase my Requip dosage to 2 mg, three times a day before it gave me relief. After about a month of great relief and good sleep, it feels as if I need to increase the dosage a little. How high should I go before I wean myself off of Requip and go back to Permax?

Medical Reply

You are on a relatively high dose of Requip already.  The maximum dose can be quite variable, but you are at about the maximum dose that I use for RLS.  Discuss this with your doctor and see if a change is in order.

Sent: Saturday, January 26, 2002 1:34 PM
Subject: No luck with some, good luck with one

I have suffered the accursed Restless Legs Syndrome quite severely for a good while now and frankly am having difficulty getting any relief from it at all.  A tendency runs in my family for RLS but I seem to have it the worst by far.  I've tried benzodiazepines (Valium, Xanax, Tranxene etc.) with mixed results:  Sometimes they seem to make it worse or even bring an attack on.  

Neurontin is the latest thing I've been trying but it doesn't really seem to help much.  900 Mg./day does nothing; 1800Mg. in divided doses will make me somewhat drowsy (and even a little dizzy with eyes crossing) but helps only a little -- the crawling sensation with one or both of my legs twitching happens anyway as soon as I start to relax.  

The one thing that does seem to help and is not by reports too risky to use, is Ultram.  But since this medication is, though not chemically an opioid, enough like them in overall effect to cause a potential problem with some people, physicians here are reluctant to prescribe it on a long-term basis -- unless I found one who suffers from RLS himself; then it might be different.  

Since the Neurontin doesn't work very well for me, are there any new developments?  Anything else in or out of that class that might be more potent?

Medical Reply

Have your doctor prescribe Mirapex or Requip and you should get relief.  If that does not help, let me know.

Sent: Monday, January 28, 2002 9:58 AM
Subject: homeopathic relief
I'm 58 and have been suffering from RLS for a couple of years. (Since beginning anti-depressants, I think). It had gotten so bad no one could sleep with me. I checked a few weeks ago at my local co-op homeopathy section and found a recommendation for Ignatia Amara, which I have been taking nightly with good results. 

That "crawling ants" feeling around bedtime has nearly completely gone and I have had no twitching at night that I am aware of. I read the instructions this morning and discovered I have been taking it incorrectly (with water, vs allowing pellet to dissolve in mouth), but it has worked well. I hope someone else can find relief with this stuff.

Terry J., Boise
Sent: Monday, January 28, 2002 2:16 PM
Subject: antidepressant search

I began experiencing RLS symptoms about 4 months ago when I stopped taking Effexor.  Originally, I thought it was due to tapering off the medication, but have since found out otherwise.  Now I am taking a pretty low does (300-400mg) of Neurontin which for the most part does the trick for my RLS. 

However, I am having renewed symptoms of anxiety and some depression and am interested in finding out what I CAN take that will have limited side effects and not increase my RLS symptoms.   I know that RLS patients differ in what they respond to-just wondered if you had seen success with one more than the other.

Thank you,
Jerri A.

Medical Reply

There is great variation in RLS patient's response to antidepressants.  Some get better while others get worse or stay the same.  Wellbutrin, Serzone and possibly Remeron have some theoretical advantages over other antidepressants.

Sent: Wednesday, January 30, 2002 5:41 AM
Subject: Nerve Conduction Testing necessary?
Yesterday I saw a new neurologist (we have moved), and my gross neurological exam was normal.  However, he would like to do some nerve conduction testing tomorrow.  Is that an expected test for PLMD and RLS?  I have no other major impacting health problems, and he would not elaborate as to what that test could unearth. Just wanted to touch base with a trusted and knowledgeable resource.  Thank you for your answer!     

Dennis A.. in TN

Medical Reply

About 40% of RLS sufferers may have minor nerve conduction abnormalities on nerve conduction tests.  The clinical relevance of this finding is very uncertain and bears no importance for treating or diagnosing RLS.  It is only done for research purposes to help elucidate any neurological finding associated with RLS.
Many neurologists will use this tool to rule out other disorders before accepting a diagnosis of RLS, but most of us who know and understand the disease simply make the diagnosis based on the symptoms and lack of any other physical findings on routine exam.

Sent: Thursday, January 31, 2002 5:21 PM
Subject: Questions about periodic limb movement
I am a 34 year old female and I have suffered with insomnia off and on for 2and a half years now.  I have seen a sleep specialist for this problem but have not had a sleep study, yet.  I feel twitching in different body parts -
legs, arms, shoulders - several times a day but nothing painful.  Any information you could share would be appreciated.

1)  Can periodic limb movement be triggered by a bee sting which led to
      blood poisoning?
2)  Is there a home diagnosis for this condition?
3)  Are there natural treatments for periodic limb movement?
4)  Can this condition be related to infertility


Medical Reply

Not much is known about what causes PLMD, but bee stings are not associated with this problem.  There is no way to diagnose the problem at home, the condition is not related to infertility and there are no natural treatments.  You will need a sleep study to make the diagnosis and decide on treatment.

Sent: Thursday, January 31, 2002 6:35 PM
Subject: RLS and Thalidomide
My name is Jackie. I have had RLS since childhood but it became a nightmare due to chemotherapy....sometimes only getting 3 hrs sleep a day. In 98 I went on a drug called was in a clinical trial.  My RLS ceased to be after the very first dose (200 mg). The side effects at this and higher doses are not pleasant (constipation, tiredness, bloated feeling sometimes and peripheral neuropathy) but a heck of lot better that the intensity of the RLS  My restless legs were my worst nightmare.  It was only when I took myself down to 50 mg that I had to add Mirapex once in awhile.
I am off he Thalidomide at this time and the Mirapex is having a difficult time keeping things in check.....  My local oncologist keeps saying he is going to write something on it but hasn't.  Surely there is something in the Thalidomide that can solve this problem. I wouldn't know who to contact, no one seems to be interested......I guess they have never experienced this problem.
Jackie R.

Medical Reply

The problem is that the mechanism of action of Thalidomide is not well understood, even for its chemotherapeutic uses.  We also do not fully (of often at all) understand why the RLS medications seem to help, other than the ones that increase dopamine seem to help most.
It would thus be very difficult to figure out why Thalidomide is helping RLS and there are so many other questions that need to be answered (and very few researchers available) before looking into this.

Sent: Friday, February 01, 2002 6:41 PM
Subject: neuropathy and RLS. Connection?

I have ad RLS for years, waxing and waning since childhood.  For about 10 years I have had peripheral neuropathy, secondary to injuries, it is thought.  The left foot/ ankle are the worst by far.  I have had an ankle block, which didn't work, then a fibular block, which helped for about a month but now seems to be on the wane. 

My question is this:  When the left ankle pain flares up, it seems to be almost always followed by and RLS 'attack' in the left leg.  Am I imagining things?  Or is there some known connection between the two problems?

No one here seems to have a ready answer, and it would take another two months, at least, to get back in to see the neurologist.  And I'll just bet that you know more about it than he would anyway!

Getting very discouraged,
in Tucson

Medical Reply

About 40% of RLS sufferers may have a neuropathy demonstrated with nerve conduction testing.  Most of these patients will not be aware of this neuropathy as the symptoms/manifestations may be subclinical (too mild to even notice). 
A small, but significant percentage of RLS sufferers (I do not know how many) have very noticeable neuropathy symptoms, most often presenting as a burning sensation in the affected limb.  It may or may be related in time to the onset of the patient's RLS symptoms.
In your case the neuropathy has a known cause which is different than the unknown cause of the neuropathy associated with RLS.  It is therefore difficult to speculate as to the relationship of your neuropathic pain and your RLS.  It is likely that any painful stimulus may somehow trigger RLS.  We do know that stress, for example, may trigger RLS in many cases.

Sent: Sunday, February 03, 2002 12:28 PM
Subject: Mirapex and Requip
Which is the least likely to exacerbate insomnia?  For someone with RLS, all they need is a medication which worsens insomnia.  

Thank you,
Karen U.

Medical Reply

Strangely enough, both can cause sleepiness or insomnia (likely fairly equal chances of trouble with each drug).  It is very hit or miss with either drug, with sleepiness being the more common side effect (at higher doses of the drug).
Sent: Monday, February 04, 2002 4:44 PM
Subject: RLS

I am very grateful for this site and hope you can shed some light on this subject.  My daughter, who is now 11, started having exactly the symptoms described in RLS when she was about 8 years old.  It just suddenly started happening one night.  

It starts when she lays down to go to sleep and it takes her 45 minutes to 2 1/2 hours to get to sleep.  Sometimes she will sleep all night and be fine in the morning and sometimes it wakes her up all night and then she may have it when she wakes up in the morning for a couple of hours.  But, she only gets it about 2 times a month.  

She does not have an Attention Deficit Disorder of any kind.  She is a calm happy, active girl.  She does have one other peculiar health problem that doctors cannot diagnose.  Starting 4 years ago she would wake up throwing up, like she had the flu, three to fifteen times a day, no fever, no other symptoms.  It happened about once a week.  She was having a hard time with math in school (Third grade multiplication facts!).  But other than that had no stress at all.  

As she has gotten older the throwing up has lessened.  No it only happens once about every 2-3 months.  The doctor has run all kinds of tests, and found nothing wrong!  I would also mention that she is very thin, about 68 lbs and 4'9".  She eats lots of fruit and vegetables, some cheese, pasta and not a lot of meat.  

I read somewhere that calcium has helped people with this problem.  Is that true?  I am VERY hesitant to have her take any prescription drugs.  And can you tell me, will this get worse with age or go away?  Thank you for your help!  

Penni R.

Medical Reply

Many RLS sufferers can trace their symptoms back to early childhood, so it is quite possible that your daughter does indeed have RLS.  It is quite hard to diagnose RLS in children, so it might be a good idea to take her to an RLS specialist and confirm the diagnosis.
Calcium is not one of the minerals that helps RLS.  If she does not further treatment, you should check with an RLS doctor.

Sent: Monday, February 04, 2002 5:08 PM
Subject: rls and cervical changes
Have there been reports in the literature of an association between changes in the cervical vertebrae and RLS?  If so, can you give me a reference?

R. F. W., DVM, PhD

Medical Reply

There are no reports specifically with changes in cervical vertebrae, but it is well known that trauma to the body and especially the spine (as in disc surgery) may exacerbate or trigger RLS.  There is no literature on this but most RLS doctors have made this observation.

Sent: Tuesday, February 05, 2002 11:06 AM
Subject: RLS
I just recently discovered your site, I have spent days reading the messages.  It' s great comfort to me to find out I am not alone in my struggle with RLS.  I am also surprised that it affects so many people and you see or hear little information about it.

I am 39 years old, I have suffered from RLS for as long as I can remember.  I found out it actually had a name and treatment five years ago after reading a magazine article.  We all were relieved it was actually a treatable condition, my mother is in her late 60's and my brother is 43, we all have it.  My brother has been on Sinemet for five years and I have been for three, my mother chooses to try to manage without medication.  She finds it is diminishing as she gets older.

I have a few questions regarding RLS:

1.  I have not read any other messages in your website of families being affected.  Are we unusual or can it be hereditary?

2.  Is there any connection between RLS worsening from alcohol?  I am not a big drinker, but I notice that with just one or two glasses of wine, in a very short time I have a severe attack.

3.  My family doctor is not too familiar with the condition.  When I first asked for the Sinemet medication my brother was on she listed many dangerous long term side effects by taking Sinemet.  Quite frankly, scared me and I went another 6-8 months trying to manage without
medication.  I came to the point of being so deprived of sleep and trying to raise a young family that I choose to risk the side effects and go on Sinemet.  I am glad I did and this drug still does the trick for me after three years on it.  I take one pill a night at bedtime after a hot bath, and it usually lasts 5 hours, at times I have had to take another 1/2 around 3:00 or 4:00 am.  What is your opinion of being on this drug or another Parkinson's type drug for possibly the rest of my life?

Thank you again for the wonderful website and the support you offer RLS sufferers.

Sandy B,

Medical Reply

1) RLS is quite hereditary.  At least 60% of RLS sufferers have a family history and it is likely that the number would be even higher if we could check with dead relatives who may never have articulated their leg problems.
2) Alcohol is known to worsen RLS and some are more sensitive than others.  Check our list of drug and foods to avoid.
3) Sinemet should be safe to use for many years as long as the dose is kept low.  When more than 2 of the 25/100 pills are taken per day, there is a very high chance of getting augmentation and rebound.  I generally prefer using the newer Parkinson's disease medications, Mirapex and Requip as they are safer and more effective.

Sent: Saturday, February 09, 2002 2:06 PM
Subject: What cured me from RLS
After several years of RLS and being told by the doctor that I didn't need to take anymore Sinemet because it would cause more complications in the future 

I began doing my own research.  I found that a food that I was eating was causing this RLS condition, yes, believe it or not, if you will stop eating lettuce your condition will improve.  At first I thought it was dairy products but I found it to be lettuce. I don't know what's in it, or why it causes it, but don't knock my cure until you try it. If this works for you please email me to let me know.

Albert M.,
Eight Mile, Al

Medical Reply

We will put your letter on our website and see if others benefit as you did.

Sent: Saturday, February 09, 2002 10:46 PM
Subject: Treatment for sensitive legs associated with RLS
I have had RLS for the past five years. Medications that work sooner or later lose effectiveness.  Hyperesthesia (over sensitive legs sensations) in my case has responded to the use of a blanket cradle (a device that elevates the sheet and blanket so they do not touch the feet or legs). 

These are inexpensive (12-25 dollars),  and some are collapsible during the day so the bed can be made and the appliance is unobtrusive. If sensory symptoms predominate in your case as they do in mine, it's worth a try.

Sent: Monday, February 11, 2002 2:34 AM
Subject: Bad dreams with Permax
I am trying Permax at the moment for RLS . My dose is 0.225 mg and although it does not work everyday yet for daytime symptoms (I have it all day), I feel a bit stronger, because I sleep all night. The problem however is that I have very vivid dreams now and get up in the morning with raging thoughts in my mind and cannot concentrate properly during the morning and sometimes all day. I also take 15 mg of Remeron at bedtime. 

My question is, will I go on with the Permax (I still need to go a bit higher is dose) or shall I ask my neurologist to change to either Mirapex (Sifrol in Holland) or Requip? 

I want to thank you also for this wonderful site. I read it a lot. 

Corrie A., 
The Netherlands

Medical Reply

A few RLS patients do better with Permax, but most get much better responses to Requip and Mirapex.  There is no absolute wrong or right way to treat RLS in your case, but I would advise changing to one of the two newer drugs.

Sent: Thursday, February 14, 2002 9:42 AM
Subject: RLS not doing well even on Neurontin
I have been dealing with RLS for as long as I can remember.  It's gotten to the severe stages in the last 5 years.  Since I had my daughter 7 months ago, it's gotten worse again.  I have gone the gamut on the different drugs.  

Over the last two years, Neurontin (400 mg, 5x a day) has been my miracle.  Since my pregnancy, however, I've gone to 10-19 Neurontin - same mg.    I don't know what else I can possibly do now.  

It feels like my doctor is starting to not believe any longer.  Plus, it's hard to get someone to call me back as he's so busy.  The last  drug I've tried is  Mirapex which I had a nasty reaction to.  

I'm desperate...  do you have any suggestions? 

Karen, Huntsville, Alabama 

Medical Reply

It depends on what type of reaction you had to Mirapex.  If the side effect did not have to do with the dopamine class of drugs (but rather just to Mirapex) then it might be worth trying Requip.
If not, then using narcotics alternating with Ultram may help you.

Reply from Karen

Sent: Friday, February 15, 2002 7:02 PM
Subject: Re: RLS
I was VERY nauseous for the 4 weeks that I took it.  I also developed a very nasty migraine during that time.  My doctor is now suggesting some kind of pain pump implanted.  I can't believe that there isn't something else that I could do.  

He won't go the narcotic route though.  He says that at 31, I'm too young for that stuff.  I've made an appointment with another doctor next week out of desperation.  He was in practice with the doctor that I have now.  

If he doesn't work out, I'm stuck as there aren't any other neurologists in the area without driving 45 minutes to an hour.  Unless you'd like to move your practice to Alabama?


Medical Reply

Sorry, but Alabama is just a little too far away for me.

You still may want to try Requip as your reaction could very well be specific to Mirapex.  You can start with a very small dose (1/2 of a .25 mg tablet) and work up to a higher dose very slowly (by 1/2 tablet per week).
If that doesn't work, you should find a doctor who will prescribe narcotics alternating with Ultram as I have already suggested.

Reply from Karen

Sent: Saturday, February 16, 2002 2:21 PM
Subject: Re: RLS
What do I say when a doctor tells me that I'm too young to start narcotics?  What other type of doctor could I see other than a neurologist?  (There are only 3 neurologists in my area... one I'm
seeing now, one I have an appointment with next week, and the third isn't accepting new patients.)  


Medical Reply

It is difficult to tell a doctor what to do if they are not comfortable treating the disease with the appropriate drugs. You probably have to find another doctor who understands the disease and is willing to prescribe the drugs that will help you.  If given correctly, even the narcotics can be quite safe.
A sleep doctor may be better, but even in this specialty, unless you find one that deals with a lot of RLS, you may get significant resistance in using the narcotics and other medications.

Sent: Thursday, February 14, 2002 3:16 PM
Subject: Restless Leg Cause and relief

I have suffered from RLS since I was a very small child, and it was not until recently that I actually realized that I was not the only one on Earth with these symptoms.  I am 28 years old.

 I have found two triggers that initiate symptoms:

1 - Crouching down (squatting) for more than a few seconds anytime during the day guarantees severe symptoms that night. (as a tile-setter, I found this extremely frustrating)
2 - When laying in bed, merely thinking about RLS (such as noticing a lack of symptoms at that time) will trigger RLS. 

The only remedy I have found is sleeping on my stomach, which helps in all but the more severe nights. 

Daniel R.,  
Amenia, New York

Medical Reply

  I've spent many years beating my legs with my fists; it's comforting to know there are others who understand and are working towards remedies.  

Please go see a doctor and get a prescription for Mirapex or Requip and your life should be a lot better.

Sent: Sunday, February 17, 2002 11:37 AM
Subject: RLS Parkinson's disease medications and MS?

I've been taking Parkinson's medications for restless leg syndrome for about six years. My RLS is severe and it takes a relatively high dosage to temper it. I'm on Requip now and was on Permax for over five years. I wonder what the physiological effect is from these drugs. 

Do they retard muscular activity, or do they shut down something in the brain, or what? I have primary progressive MS and can barely walk. I use both a cane and a walker to move around. 

My question is: do Parkinson's medications have an effect on leg movement and mobility for someone with MS? Would I be better off with a different type of medication?

Medical Reply

Your questions are good ones, but as we do not know how the Parkinson's disease medications work,  it is impossible to answer whether they are working on the nerves, muscles, brain or somewhere else.  it is unlikely that these medications are impairing your leg and muscular activity or mobility.

Sent: Monday, February 18, 2002 7:25 AM
Subject: Dostinex for RLS?
Have you ever prescribed Dostinex (Cabergoline) for RLS?  I understand it has been used in Sweden.
Thank you,  

Medical Reply

I have received significant positive feedback from the UK and Europe for Dostinex (Cabaser outside the USA).  The problem is that it is very expensive as the FDA approved use here is the USA is for prolactin tumors (which are dosed only once or twice a week) and the daily cost ends up being prohibitive (especially as it is not covered by insurance for this use).

Sent: Monday, February 18, 2002 7:07 AM
Subject: RLS
I was diagnosed with RLS about a year ago.

I am taking Neurontin 300MG three times a day which seems to help the restlessness and pain during the day (mainly in one leg that seems to be effected the most).  In the evening 1 50MG of Ultram which helps me fall and stay asleep most nights.

Recently I have noticed muscle movement in various parts of my body during the day (and while trying to fall asleep).  It isn't impacting my ability to fall asleep though.  The areas vary, but usually only one area is impacted at a time.  The areas include finger, hand, arm, leg or stomach.

Is this related to the RLS?

Medical Reply

Very likely you are experiencing PLMD in those muscle groups.

Sent: Tuesday, February 19, 2002 8:12 PM
Subject: RLS 7 Myasthenia Gravis

I am curious to know whether RLS can be related to Myasthenia Gravis.  I have been diagnosed with RLS, but feel that my constant lack of energy and fatigue cannot be solely attributable to this condition.  Medication has been prescribed for the RLS but I am often still very tired and weak during the day.  

There are period when I feel reasonably normal, but I often have bouts of unbearable tiredness when I need to lie down and sleep.  My energy levels are extremely low at these times.  I keep fit with ballroom dancing 2-3 nights a week, and playing golf 3 times a week.

My sister has recently been diagnosed with Myasthenia Gravis, and this made me question whether there could be a link between the two conditions. Perhaps RLS can be triggered by MG?

Yours sincerely

Medical Reply

We do not know the cause of RLS, but I can say definitely that there is no relationship between Myasthenia Gravis and RLS.  Fatigue is quite common in RLS due to lack of sleep. 
Even in patients that do get to sleep enough hours despite their RLS, there is a good chance of PLMD (over 90% of RLS sufferers have PLMD) causing arousals that make the quality of sleep very poor and thus may result in daytime fatigue.  Only a sleep study can determine if PLMD with arousals are a factor.

Reply from Elaine


Sent: Wednesday, February 20, 2002 3:00 PM
Subject: Re: RLS 7 Myasthenia Gravis

Thank you very much for responding so promptly to my query.  I have had sleep studies done which determined that I was getting an extremely poor quality of sleep due to numerous arousals.  However, I do not understand why the medication is not having an effect, and in fact seems to make me more tired for about two days after taking it.   Is it possible that the drugs taken for RLS can in fact aggravate the symptoms of MG?  Do the drugs for RLS suppress neuron activity, where the drugs for MG heighten neuron-to-muscle activity?  

My sister who lives overseas and has been diagnosed with Myasthenia Gravis also has restless legs, and this is why I initially queried whether there could possibly be a connection.  If it is not known what causes RLS, has any research been done that actually rules out a connection between RLS and MG?  This is a genuine interest so I hope you don’t mind me pursuing this issue.


Medical Reply

No one has looked into RLS and Myasthenia.  The reason is that when dealing with a rare disease like Myasthenia, it is easy to pick up associations with other diseases.  RLS is quite common (6-9% of the population) so it would not be unusual to have some MG patients who might also RLS (or other common diseases such as high blood pressure, asthma, etc.). 
The RLS drugs have no known effect on MG.

Sent: Wednesday, February 20, 2002 7:18 AM
Subject: Dieting
I have a question an dieting and exercise.    Most folks have probably noticed that any change in the equilibrium of their body can kick off RLS symptoms.    So, I'm trying not to exercise (treadmill)  immediately before bed.  

As to dieting, I am interested in supplements such as vitamins, but also some advice on the various diet aids such as Xenedrine.    Like everyone else here, I avoid any and all stimulants, so I definitely wanted your advice before pursuing this.   Could you please comment on dieting, diet supplements and exercise?   

As always, many thanks  !!!
Dave R.

Medical Reply

Mild exercise early in the day (before evening) may help RLS, but moderate to severe exercise, later in the day usually worsens RLS.
Most diet pills (especially the over the counter ones) tend to worsen RLS.  Diet supplements can have all kind of ingredients (and have never been proven to help), so we suggest that you avoid them.
Dieting should be done slowly (the same is true for non-RLS patients) at about one pound per week.

Sent: Wednesday, February 20, 2002 11:33 AM
Subject: RLS
My son has an extra-ordinarily severe case for most of his life. We have pursued many avenues with little results. He describes his as a severe burning sensation of the legs--like actual fire. Have you heard of this symptom? Others seem to be pain, tingling, etc. and that is not at all what he has. 

He has gone thru the sleep diagnostic clinic, tried every new medication known for RLS and nothing seems to help. Therefore, I am trying to narrow it down to someone who is familiar with the "burning" in the hopes that will lead us to some results. 

We once heard of a procedure wherein they cut or clip some nerves and after being in a constant fog with different medications, that alternative sounds good to him but we can't seem to find anyone who knows anything about it.

If you can shed any light or point us in new directions or feel a visit to you would be helpful, please let us know. Thank you for your kind attention.
Betty L.


Medical Reply

Due to the large amount of patients that I have with RLS (in addition to the contact that I get with my support group and on the internet) I have heard of most unusual RLS phenomena.  The burning is actually not rare and a significant percentage of RLS sufferers have similar complaints.
We believe this occurs due to an associated neuropathy with the RLS or it can just be a manifestation of the RLS alone.  It is much more difficult to treat but will respond to medications in most cases.
The surgical procedure that you are referring to is likely a caudal block which is useful to nerve problems such as sciatica, but has no role in RLS (as they would not know where to do the nerve block).

Sent: Wednesday, February 20, 2002 5:00 PM
Subject: The PLMD Question
Among the various publications that are many ways of identifying PLMD as being different from RLS. In many cases it is referred only as PLMS -- a sleeping disorder -- and in others both PLMS and PLMW are identified as if they were different one from the other. 

I am one of the perhaps 30% of us who have only PLMD, not RLS as well.  And I have a bad enough case that I can have real problems ANY time of the day or night I am at rest. AND, I can detect no difference in symptoms, nor in the effectiveness of the Mirapex I take, between the attacks, either day or night.  

Am I the exception? Is there clinically a difference between PLMS and PLMW or is it just the time of the day it happens?  If the latter, why not just call everything PLMD? What have you found over the years, with your large number of RLS/PLMD patients?

Newt H.

Medical Reply

There is no difference between all the various names of PLMD.  That is probably the best name for the disorder as most patients will have sleep and wake leg jerks.

Sent: Wednesday, February 20, 2002 8:57 PM
Subject: restless leg syndrome and my treatment
I have had restless leg syndrome for 4 years now. Each year it got worse. In 2001 it reached its max in pain. I first started kicking in my sleep. I didn't realize that I was even moving. Then I began to sling my arms and Jerk my legs.  My fiancé  tells me that I acted like I was trying to kick start a motorcycle in my sleep. 

Last year 2001, RLS started before I went to bed, with aching pains throughout my lower legs and calves, into my hips. I felt like I needed to get out and walk. I have taken everything from Permax, to Pamelor, Mirapex, Everything that could possibly be used to treat Parkinson's Disease, which is twitching, body movements, aches, pains. None of them worked. 

Clonazepam worked for a while, but when I started waking up in the morning and my legs hurt so bad that it hurt to walk. My legs felt so tender and sore, from kicking, and having the muscle spasms, that I felt like I had been on a treadmill and a bicycle for 12 hours straight.  In all reality, my body had been moving all night. Legs kicking, and twisting my ankle in circular motions throughout the night. 

It hurt the next morning, And I never want to experience that again. I called my neurologist and he advised me to come in. I put me on Methadone, Only 5mgs..Before I go to bed.  This has been the ONLY MEDICINE THAT HAS CURED MY RLS.    I truly had forgotten what it felt like to go to bed and sleep all night long, and wake feeling rested.  It was a miracle!

The medicine makes you sleepy, and the next morning your body is not tight, and in pain.  From time to time I had a bad night, with feeling achy, twisting my ankle, and legs hurting, but Nothing like what it lead to before finding this treatment. 

I am so thankful for my Dr. finding something that would take care of my painful aching legs.

When you kick all night, and hurt the rest of the day, go back to bed, kick and twist again, awake in the same shape, it gradually will get worse. I was told I was the SECOND MOST SEVERE CASE OF RESTLESS LEG SYNDROME THAT HE HAS EVER SEEN AND TREATED.
So when I hear about someone having RLS, I always read to see if they got as bad as I did, How long they have had it, and when it started. 

I'm 29 now and I will always remember those who are in the same boat as I am.  Only we know the pain, the tiredness and the feeling of Restless Leg Syndrome.


Medical Reply

I have a lot of severe RLS patients and use methadone very often. It does work very well for RLS, especially when all other drugs have failed.

Subject: PLMD

My husband is a very sound sleeper. I am not. I lie awake every night, while his leg "earthquakes" jolt me every minute or so (for hours). Seemingly unperturbed by these convulsions, he has a difficult time believing my woeful complaints about his spastic legs.


I recently heard or read something about the benefits of calcium in treating RLS. I found out more information from your website and others and have determined that he simply has PLMS. To my knowledge, he has no pain or "crawly bug" feelings, but he's not a complainer, so I'll confirm this when he returns home.

Phil (the bed-shaker), is a healthy 57 years, eats well, little to no caffeine or alcohol (never late), very calm, stress-free daily life. I'm the one who's losing sleep and going nutso!

He would prefer a medication-free life, as I would. So, did I hear correctly about the calcium, or was it just wishful thinking? Any other suggestions (besides a baseball bat!)? I know it's not as serious as RLS, but it can sure be frustrating and bothersome. (And I don't mean to sound so selfish... I'm sure Phil could be sleeping more comfortably, as well.) 

Any help appreciated. Thanks in advance.


Medical Reply

Calcium is rarely a factor in RLS or PLMD (which is what your husband seems to have). A much simpler solution is to get twin beds and separate them by a few inches just before going to bed.  That should eliminate the leg jerks from bothering you. 

Sent: Sunday, February 24, 2002 2:57 PM
Subject: RLS

In his book. " Stopping Restless Legs Syndrome" by Chet Cunningham
published by United Research Publishers:

"A low level of ferritin is reported in 25% of RLS and PLMS patients. Ferritin is a binding protein for iron. This is one of the best gauges for how much iron your body has stored or has in its savings account. It is usually right for the ferritin level to be at least 50 with those with  RLS. Iron influences how dopamine works in the brain. When it is low, it could contribute to disabling  the dopamine system. If an RLS patient's level of ferritin is under 50, and work is done to raise it to 50 or above, there usually is a marked improvement in the RLS patient. When a RLS or PLMS patient's ferritin level is below 50 an iron supplement usually is taken. A daily dose is one to three iron tablets of 65 mg of elemental iron and 125 mg of iron sulfate with Vitamin C added to help the iron absorption."

Cunningham does not say how he measures ferritin ( what unit). Is there a difference in measuring it between Germany and the USA or is ferritin always being measured in units as indicated below????

I had my ferritin level analyzed (measured) with the following results:

result:        unit    normal value
24.0          ng/ml     20 - 167

If I take an iron supplement to bring the ferritin level to 50, could the condition of severe RLS I am suffering from, be improved?? What is your opinion ??

I would be very thankful for your answer.
Juliane V.

Medical Reply

The units are the same.  What you read is true, but getting the serum ferritin level above 45 seems to help only a minority of RLS sufferers.  We are not sure why more are not helped but it seems that the iron does not get into the brain easily from the oral route.  It is still worth trying to take oral iron supplements to see if it does improve your RLS.

Sent: Wednesday, February 27, 2002 9:15 AM
Subject: Help
I am a 50 yr old female that has had this RLS for about 15 yrs....and of course here in the last couple of years it has got worse.  The doctor. tried the Sinemet, I threw the bottle away, which had the mg..60 pills a month.  Well, my legs got worse. It was pain in the morning, mid afternoon, and early evening. If I didn't have a pill around, I would really want to hurt myself.  It hurts so bad!

Well then the doctor tried the Sinemet 50/200 CR, and now I take the 60 pills from the first Sinemet and also the 30  of the other Sinemet.  I have totally run out of all pills, and I don't go to the doctor until Friday.  Today is Wednesday and I am having a really rough time.

Since the Sinemet causes this to exacerbate, what do you suggest my doctor to try for this? He has a very open mind, except when it comes to narcotics.  So without narcotics?  What do u suggest? .I need some relief from this dreaded crap.

Thanks so much for at least reading this,

Medical Reply

You do not need narcotics.  Have your doctor prescribe Mirapex or Requip (as per our RLS Treatment Page) and that should take care of your RLS and the problems caused by Sinemet.

Sent: Saturday, March 02, 2002 10:01 AM
Subject: Does anyone know why?
My fiancé is having a very tough time right now, as her symptoms appear to be getting worse.  One thing is for sure, her symptoms are always much worse the week prior to and leading up to her period.  Does anyone know why this would be and is there anything that can be done during this time to bring her some relief?
Thank you for your help.
Mark P.

Medical Reply

It is not uncommon for hormonal influences to affect RLS.  Pregnancy commonly worsens RLS and many have changes with menopause.
Mirapex or Requip prescribed as per our RLS Treatment Page should take care of her RLS symptoms quite nicely.

Sent: Saturday, March 02, 2002 11:42 AM
Subject: restless legs

I get restless legs in the evening, and then in bed, while watching television from an easy chair. If, instead of watching TV I continue working elsewhere in the house - in a sedentary position, probably while using a computer, I do not get the symptoms. Why?

Geoff M.
Roundabout Cottage Withnell Chorley Lancashire UK

Medical Reply

RLS most often occurs in the evening and is worse when not active (such as sitting watching TV or trying to get to sleep in bed).  What is very interesting is that certain types of mental activity (such as playing computer games, doing computer work such as word processing) seems to be able to ablate the RLS symptoms. This has been noted by many RLS sufferers who will bring a computer to use while traveling in a car or airplane to calm their RLS symptoms.
The reason that this works is completely unknown.  It is possible that activating one area of the brain cuts out impulses from another area (similar to shaking your thumb after hitting it with a hammer to reduce the pain signals).

Sent: Saturday, March 02, 2002 9:43 PM
Subject: RLS
I have only recently found your website and have begun to read through the letters and medical comments.  I am pleased to see that now at least someone knows what you are talking about when you describe the symptoms.  I was first aware of the crawling sensation in my legs when in kindergarten.   

For the first several years it only would affect me if riding in a car for periods of time.   In my teen years it began to bother me if I was seated any place.  It did not begin to bother me at night until my early 20's.  I used to be able to count on not having an attack if I was the driver of the car since I could remain very focused, but now I can still get the sensation even while driving.   

Being a passenger can still be miserable.   I can never predict when I am or am not going to have the symptoms and have kind of given up trying to analyze it.  I am 56 years old now and except for trying a Parkinson's drug during the 80's I have not taken medication for it.  Wasn't previously aware there was anything else to take.

During the past 10 years I have been able to pinpoint the source of the sensation - my sacroiliac joints to either side of my lower spine.  That is where the crawling feeling begins and during the last year those same joints have begun to also experience a dull ache, whether  the crawling feeling is there or not.   From reading some of the letters, apparently my case is not extreme.  

I do loose 2-4 hrs of sleep a night and even if I fall asleep I can still have a slight sensation when I wake in the morning.  I can't sit down to just watch TV or catch a nap without the RLS starting up.  The only sleeping position that brings a little relief is to sleep on my stomach.   I have been both physically fit and unfit and it seems to make no difference.  

General health is good - past Chronic fatigue/Epstein Barr problems but much improved the last few years.  Tiredness and stress definitely affect it.  Even though I have no specific additional questions, I would appreciate any medical comments you might have for me, and I will certainly write again if I find that something  brings consistent relief to me.  

After 50 years, I really am weary of it, but am grateful that the rest of my health has remained as good as it has in spite of the fitful sleep and inability to relax.

Sharon B.

Medical Reply

The best treatment for your RLS is Mirapex or Requip.  Have your doctor prescribe one of these medications for you as per our RLS Treatment Page.

Sent: Monday, March 04, 2002 7:01 AM 

I have had this problem since I was five (the earliest I can remember) tried my own treatments without much success. I am now 33 years old and haven't had one bad night since I discovered a liquid calcium, magnesium and phosphorus with Vitamin D preparation. 

I  take a tablespoon daily , usually before bed. I think from my research that my condition was quite severe. A few times I have felt it start as I lie in bed trying to fall asleep then realize that I have forgotten the liquid for a few days, this is rectified by getting back on my routine. 

It took a few weeks to get results when I first started, so don't give up. It is quite easy to find and I have tried a few brands (they have all worked equally well) the one I'm using now is Organika. Hope this helps someone else.

Sent: Thursday, March 07, 2002 1:05 AM
Subject: restless leg syndrome

After an Ivor Lewis oesophagectomy (oesophagus and stomach removal and new stomach made from intestines and placed in chest cavity), I started to get the “jiggles in my legs”.  It would seem to occur during the evening and night.  During the day whilst at work, nothing.  My job as a Maintenance Manager in a very large Nursing Home complex kept me busy so I figured it was there but I just was not noticing it. 

My wife was constantly on the look out to see if certain foods would start me off.  I hardly eat anything all day, so it was narrowed down to food between 6pm and 12pm .  In the end we came to the conclusion that there was probably a gluten intolerance.  Now, I have not officially been diagnosed with RLS but am sure that is what I experience. 

My wife has placed me on a wheat free diet (not quite as drastic as gluten free) and it has certainly helped enormously, although sometimes we cannot understand why I get an attack.  Maybe I need to try a week or so gluten free, but would love to know if anyone else has had the same or similar results.

Keith J.,
Western Australia

Medical Reply

Thanks for your writing us with your experience treating RLS.  We will post your letter and see if others have any similar responses.

Sent: Sunday, March 10, 2002 12:14 PM
Subject: Magnet & Water therapy for RLS
I suffered from restless leg syndrome for 30 years (I will be 60 this year).  What really worked for me is the following:
    1.  Before going to bed I put on magnetic leg and ankle wraps
    2.  I drink 8 to 10 cups of water during the day
I have no idea why this works.  When I do not do the above two steps, my restless legs return at night while trying to sleep.

Violet, Colorado

Medical Reply

Thanks for your writing us with your experience treating RLS.  We will post your letter and see if others have any similar responses.

Sent: Monday, March 11, 2002 6:17 PM
Subject: RLS - possible treatment product
My name is Beverly and I am a Registered nurse who was searching the website for RLS for resource  information for a potential customer for my associate with  a company that I am involved.  I am an independent distributor with Immunotec Research/  and I was very interested in your site for personal and professional reasons. 

I also have many of the problems mentioned in your letters from members. I became involved with Immunotec Research initially because of their flagship product. Immunocal. I have fibromyalgia, osteoarthritis, irritable bowel, difficulty sleeping from the fibromyalgia and I also have RLS. When my associate asked it I had ever heard of restless leg syndrome I told him yes and also told him I have it. 

This sparked his interest and while talking I realized that since I was sleeping much better since taking Immunocal it didn't occur to me that I hadn't had any recent restless legs either. Immunocal improves our cellular levels of glutathione and can help a multitude of problems. When I noticed your list of treatment drugs it occurred to me that Immunocal might help your patients. 

I noticed Sinemet as a drug used and since Immunocal has been very effective with Parkinson's and Sinemet is used for Parkinson's disease the use of Immunocal might help.  Immunocal has 22 yrs. of research to back up its claims and is now in the PDR and has patents of use which is very unusual for a dietary product. 

Medicare and Medicaid in 22 states now recognize its importance to medicine and there is no drug  side effects. It is a natural whey protein that can help boost your immune system. This product has given me a new lease on life and if I can just get more people to see its benefit I feel like I have helped mankind in my chosen profession. 

You can check out my website at  for further info. Check out the testimonial line and also the Medline for all the conditions that this product has helped. It sounds like it is too good to be true but I am a walking testimonial that it works. My cholesterol and triglyceride levels have also taken a big downhill slide since taking it, to the amazement of my doctors. 

If this helps just one of your RLS patients, then it was worth my time to write.  All mankind can benefit from this product because it boosts our immune systems and since we are all aging which will cause a decrease in glutathione what have you got to loose but your health and how important is that to you?  Please let me know if I can be of help. 

Beverly P. RN.

Medical Reply

Immunocal is indeed in the PDR and here is the write up on it from the PDR:

Immunocal® is a U.S. patented natural food protein concentrate which assists the body in maintaining an optimal concentration of glutathione (GSH) by supplying the precursors required for intracellular glutathione synthesis. These precursors are derived from a specially prepared bovine whey protein isolate. Glutathione (L-gamma-glutamyl-L-cysteinylglycine) is the major endogenous antioxidant produced by the cell. Glutathione participates directly in the neutralization of free radicals, reactive oxygen compounds, and maintains exogenous antioxidants such as vitamins C and E in their reduced (active) forms. In addition, through direct conjugation, glutathione plays a role in the detoxification of many xenobiotics (foreign compounds) both organic and inorganic. Glutathione is an essential component of the human immune response. Proposed mechanisms of immune enhancement include: optimizing macrophage functions, offsetting oxidative damage associated with lymphocyte monoclonal expansion and stabilizing the mitochondrial membrane thereby, reducing apoptosis in lymphocytes.

  1. optimizing macrophage functions, 
  2. offsetting oxidative damage associated with lymphocyte monoclonal expansion and 
  3. stabilizing the mitochondrial membrane thereby, reducing apoptosis in lymphocytes. 
As we do not know what causes RLS and how the known drugs help RLS, it is certainly possible that Immunocal may help RLS, but we obviously do not have any more than very limited anecdotal evidence.  We will see if others may have some benefit from this product after we post it on our site.


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