Patient letters on RLS symptoms and remedies- Page 39
If you have questions or wish to describe your symptoms and treatments,
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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.
worked wonderfully well.
Four months ago I shared some RLS ferritin
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
325 mg) once a day, and have done so for approximately four months.
my iron levels last week, my ferritin level has gone up to 24.59, but my
has risen just over the normal level to 159.00. My doctor is concerned
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
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
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
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,
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
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.
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
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!
you for the wonderful web-site and all the great info.
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
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.
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
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
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 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
The pain does not sound like RLS. Sciatica, muscle
pain, etc. are other conditions that must be ruled out by your family
Sent: Monday, January 14, 2002 12:08 PM
Subject: Re: Just starting RLS therapy (see previous letter, December
I am now taking 2 to 3 tablets of Sinemet. Because of
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
However, there is one side affect that has me a little worried,
"Orthostatic hypotension"... I am 30 years old... what should I be
of if I start taking these medications?
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
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
I look forward to comments,
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
the first time last night. It did not seem to make a difference.
am willing to keep trying it for a while. I have a very odd sleeping
Sometimes I work from 5:00 p.m. to 3:00 a.m., then 2 days a
work from 9:00 a.m. to 5:00 p.m. I am wondering if this is my problem.
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
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.
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.
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
been taking three .25mgs of Mirapex each day, which has been completely
effective in eliminating my RLS. However, before starting Mirapex in
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
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
(with two-to-three tablets of Tylenol 3 twice a day for the drug
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
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
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
I will be forever grateful to you for the advice you gave me when I
wrote to you back in 1999 and I have complete trust and confidence in
Would it be possible for you to give me your opinion of my new doctor's
plan of attack?
With many thanks once again,
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
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.
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
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
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
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
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
leg muscles in a hot room would be good for this (plus great for your health
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
naturopathic and exercise related treatments.
Can anyone verify that I have, at least in your opinion, RLS?
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
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
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
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
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
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?
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
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
in what they respond to-just wondered if you had seen success with one more
than the other.
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
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
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
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
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 Thalidomide....it
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.
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
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
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,
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
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
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.
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
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
R. F. W., DVM, PhD
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
Sent: Tuesday, February 05, 2002 11:06 AM
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
affected. Are we unusual or can it be hereditary?
2. Is there any connection between RLS worsening from alcohol? I
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
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
Thank you again for the wonderful website and the support you offer RLS
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
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.
Eight Mile, Al
We will put your letter on our website and see if others
benefit as you did.
February 09, 2002 10:46 PM
Subject: Treatment for sensitive legs associated
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.
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
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
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
nasty reaction to.
I'm desperate... do you have any suggestions?
Karen, Huntsville, Alabama
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
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
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?
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.)
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
The only remedy I have found is sleeping on my
stomach, which helps in all but the more severe nights.
Amenia, New York
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?
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
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.
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
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
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
fall asleep though. The areas vary, but usually only one area is
at a time. The areas include finger, hand, arm, leg or stomach.
Is this related to the RLS?
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.
have been diagnosed with RLS, but feel that my constant lack of energy and
fatigue cannot be solely attributable to this condition. Medication has
prescribed for the RLS but I am often still very tired and weak during the
There are period when I feel reasonably normal, but I often have
of unbearable tiredness when I need to lie down and sleep. My energy
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?
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
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.
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,
The RLS drugs have no known effect on MG.
Sent: Wednesday, February 20, 2002 7:18 AM
I have a question an dieting and exercise. Most folks have
noticed that any change in the equilibrium of their body can kick off RLS
symptoms. So, I'm trying not to exercise (treadmill)
As to dieting, I am interested in supplements such as vitamins,
also some advice on the various diet aids such as Xenedrine.
everyone else here, I avoid any and all stimulants, so I definitely wanted
your advice before pursuing this. Could you please comment on
diet supplements and exercise?
As always, many thanks !!!
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
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.
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
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.
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.
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
Am I the exception? Is there clinically a difference between
PLMW or is it just the time of the day it happens? If the latter, why
just call everything PLMD?
What have you found over the years, with your large number of RLS/PLMD
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
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.
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.
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.
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
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
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
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
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:
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.
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
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
the 30 of the other Sinemet. I have totally run out of all pills, and
don't go to the doctor until Friday. Today is Wednesday and I am having a really rough
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,
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.
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?
Roundabout Cottage Withnell Chorley Lancashire UK
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
Sent: Saturday, March 02, 2002 9:43 PM
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
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.
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
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.
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
and .In the end we came to the conclusion that there was probably a
I have not officially been diagnosed with RLS but am sure that is what I
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.
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
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.
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/ cell-defense.com
and I was very interested in your site for personal and professional
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
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
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
You can check out my website at www.cell-defense.com/32934
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.
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
optimizing macrophage functions,
offsetting oxidative damage associated with lymphocyte monoclonal expansion and
stabilizing the mitochondrial membrane thereby, reducing apoptosis in lymphocytes.
optimizing macrophage functions,
offsetting oxidative damage associated with lymphocyte monoclonal expansion and
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.
The information and advice on RLS given on this web
site is for educational purposes only. None of the advice, information or medical
treatments should be followed without the supervision of your medical provider. The
information presented on this site is not a substitute for your doctor, but should be used
to help you discuss your RLS problem with your doctor. Do not undertake RLS medication
treatment on your own! Please seek qualified professional medical care to help treat your
If you have questions or wish to describe your symptoms and treatments,
send us email by clicking below.