Patient letters on RLS symptoms and remedies- Page 38
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Sent: Wednesday, November 07, 2001 10:22 AM
Subject: Does this sound like RLS?
I am a 40 year old woman who has been experiencing many symptoms since I
had a horrible case of the flu last January. When I had the flu, my legs
were horribly affected with aches and RLS-like symptoms for several nights,
and then disappeared entirely.
However, I started having different aches
and pains throughout my body afterwards and have since been diagnosed with
costochondritis, fibromyalgia, and generalized anxiety disorder (sounds
like fun, doesn't it?!)
Now, that brings me to August when I
started having the crawling sensation, or a goosepimple-like sensation in the
thigh of my left leg. Since then, it has spread to my lower left leg and
right leg as well, almost on a daily basis. But, It seems to affect me
mainly during the day, though, and does not wake me at night- which I am
I am currently taking 15mg Buspar per day for anxiety,
which does not seem to make my legs any better or worse. Anyway, my doctor told me the leg problem is related to the anxiety, and that he wasn't
familiar with my symptoms. Does this sound like RLS to you, or something
Thank you for your time.
If the leg discomfort occurs at rest, is associated with an
almost irresistible urge to move the affected limb, and movement partially or
completely relieves the symptoms (only while the limb is being moved), then
you have RLS. If not, then you have something else.
Sent: Wednesday, November 07, 2001 2:55 PM
Subject: Thank You
I want to thank you for taking the time to answer my questions regarding
the immediate jerking awake I experience when I fall asleep, and
convincing me to convince my doctor to have a sleep study done. The
sleep study confirmed (as you thought it would) PLMD.
My doctor's plan on this is for me to take Sinemet and slowly taper off
the Klonopin (I am on 1 mg now). However, I still feel like I need a
sedative to get by the initial jerks that I have upon falling asleep.
Apparently, when I fall asleep, I fall so hard, I skip stages of sleep
and then I get the jerks that wake me up.
Is there any natural way to
avoid this so I can avoid taking the sleeping pill (a couple of nights,
I have been able to fall asleep with the TV. on because the noise may
keep me from falling so hard). If I take the Sinemet it has absolutely
no effect on the initial jerks that I get when I try to fall asleep.
Furthermore, I read from your treatment page that it only works for 4
hours; don't I need a longer lasting Parkinson's drug? Is there any
natural way for dealing with these initial jerks? Is there a way to
slow down my moving into sleep stages? I just feel like I will always
need a sedative for this and tolerance seems to be a problem with any
sedative. If I am 32 how can possibly take a sedative for 40 to 50
As I understand it, this is a mild form of PLMD. How does the PLMD
progress in patients with this mild form? Does it get worse like RLS?
As I also understand it, I have a 30% chance of getting RLS, is that
Sinemet is a reasonable drug for RLS, but I prefer to use
Mirapex or Requip. The plan should be to take enough of the Parkinson's
disease medication and early enough (possibly 1-2 hours before bed) so that
there are no PLM's at the start of sleep to prevent you from getting to sleep.
In that case, you would not need a sedative to get to sleep.
As far as lasting through the night, plain Sinemet does
not, but Sinemet CR lasts 6-8 hours and can be taken just before bedtime to
cover the entire sleeping time. Mirapex and Requip generally last
between 4-8 hours, so they may be able to cover you for the entire night.
If you do need a sedative, Ambien is a much better choice
as it is non-addictive and has no tolerance problems.
You are correct in that about 30% of PLMD sufferers may
eventually get PLMD, but this number has been well studied. The natural
course of PLMD is not well known, but most seem to progress slowly over the
years or not at all.
Sent: Wednesday, November 07, 2001 3:31 PM
Subject: RLS - ?
I am a 37 yr old female, and have always had some type of leg pain off and on
most of my life. It has never really bothered me until recently (about
last 2 months). My leg ache at night, I can fall asleep, but within 1/2
hour to an 1 hour I am awake. My legs ache, I can't explain because it
starts at my feet and goes all the way up to my thighs and it is just
constant. I am always tired no matter what time I go to bed, I toss and
until 3:00am. I have tried stretching, over the counter pain relief (Advil,
Tylenol) and nothing seem to work. I have read a lot of the letters and
believe I have RLS. I am wondering if there are any over the counter
remedies I could try, i.e.; vitamin, etc. at this time I do not want to take
You can have your doctor check your iron levels by getting
a serum ferritin level. If it is low then he can advise you on how much
over the counter iron pills may be helpful.
Other vitamins and non-prescription remedies seem to help a
very small minority of RLS patients, but we have them listed on our RLS
Sent: Wednesday, November 07, 2001 6:42 PM
I've used Ultram for quite a while. It's worked well for me but my
Neurologist thinks I should try Requip. (I've already tried Mirapex)
What is your suggestion for dosage for a bad case of RLS/PLMD? (210 PLM's per
hour) I need your expert opinion!
Requip should always be started at the lowest dose (.25 mg,
and for older patients we even have them cut this dose in half). Every
5-7 days the dose can be increased if symptoms are not controlled, by 1/2 or
one tablet until all the RLS symptoms are gone.
To determine the right dose of Requip for PLMD can be more
difficult. A repeat sleep study would confirm whether or not more Requip
is needed, but due to the expense of the test, this is not practical. If
you are waking up refreshed, then it is likely that you have the right dose of
Requip and if not, then it likely needs to be increased.
Sent: Thursday, November 08, 2001 10:02 AM
Subject: Post Pregnancy RLS?
My wife recently had a child and during her pregnancy she acquired RLS.
She has no previous history of RLS. It was bad enough to prevent her
from sleeping most of her last 3 months of pregnancy. To our relief
RLS has only reared its ugly head one time since then.
My question is;
can RLS continue after pregnancy as a result of getting it during the
pregnancy? One of our fears is that if we choose to have another
and if she gets RLS again during her pregnancy, that it may not go away
after the pregnancy. Thankfully this time it did. If it can
after a pregnancy, what is the percentage of the time does it continue?
Any help would be greatly appreciated,
n female patients prone to RLS, the third trimester of
pregnancy is a very common problem period. As with your wife's case,
it most often disappears after the pregnancy is over. A very small
percentage (there are no studies to tell us more precisely what percentage)
of women may have the RLS persist even after the pregnancy.
The RLS may or may not return with subsequent
pregnancies, but the odds are good that it will (again, no accurate numbers
here, but likely 60-75%). Also, a significant amount of women who
experience RLS during pregnancy, will have it return within the next 10-20
years on a permanent basis.
Sent: Friday, November 09, 2001 9:15 PM
Subject: RLS or PLMS
Hello, I am a 39 year old female who has suffered with fibromyalgia for the
past 13 years. I take 50mg of Elavil at bedtime. I have been
extremely tired for many years. I wake up and feel like I haven't
slept. A year ago, I had a sleep study done. Here are the
"This all night sleep study shows prolonged sleep latency, poor sleep
latency, poor sleep efficiency associated with multiple awakenings, frequent
arousals. Fairly frequent periodic leg movements in sleep were present
in this study. 223 myoclonic twitches were recorded with periodic leg
movement index 63 per hour. Only occasional obstructive sleep apnea,
hypopnea were present in this polysomnogram."
My doctor prescribed Klonopin (0.5mg) to be taken with the Elavil at
bedtime. For the first couple of months, I had more energy than I've
had in a long time. Within the past several months the fatigue has
returned. After a visit to my doctor this week, she prescribed
Mirapex. I was alarmed when I found out this was a drug used for
Parkinson's Disease. These are my questions:
1. Can I take the Elavil (I absolutely must have it to control the fibromyalgia) with the Mirapex at
bedtime? How many hours before bedtime
do you recommend taking these medicines?
2. I have no symptoms of RLS while I'm awake other than being dead
tired. Does that mean I have PLMS? What is the difference
between the two? Does PLMS usually progress to RLS?
3. Do I have a mild, moderate or severe case?
4. Is Mirapex addictive and what about safety?
5. How long can I safely been on Mirapex?
Thank you so much for your help,
You only have PLMD, not RLS as RLS is the creepy-crawly
feeling that occurs in your limbs while you are awake. To assess the
severity of the PLMD we have to know how many of the PLM's cause arousals
(the PLM arousal index) instead of the total PLM's. PLM's that do not
cause arousals do not cause any sleep disturbance.
The Klonopin does decrease PLM's and arousals from PLM's,
but it often will cause daytime sleepiness and tolerance occurs.
Mirapex is a much better drug and although it is used for Parkinson's
disease, the dose for RLS/PLMD is much lower. It is not an addictive
drug (like Klonopin). You can stay on Mirapex indefinitely and it
should be safe.
Sent: Monday, November 12, 2001 11:57 AM
Subject: What could I try next?
In the past I've tried Madopar and Sifrol for my RLS. Even in
higher doses, these drugs did absolutely nothing for me. At his moment I
take a Xanax 0,5 mg now and then, before going to bed. It helps somewhat but
it doesn't provide me a normal amount of sleep.
What could I try next? Is it worth to try another anti-Parkinson
medication or is it likely that this class of medication doesn't work for
My RLS is worst between about 4.00 AM until time to get up.
Therefore short acting medications can't get me through the night (as I
notice with Xanax).
Saskia from the Netherlands
Madopar (levodopa/benserazide) and Sifrol
(Pramipexole-Mirapex in the USA) are both potent RLS drugs in the dopamine
class. If neither of these helped you, then it is unlikely that other
dopamine agonists will be very beneficial.
Xanax is a relatively short acting
sedative (which is one of the reasons that we like it as it should not
leave you sleepy in the morning). If you need a longer acting
benzodiazepine, then Ativan (Lorazepam) at .5 to 1 mg may take care of
your RLS problem.
Another solution would be to consider a
long acting narcotic, such as methadone, just before going to bed.
A Reply from Saskia
Thank you very much for your quick response. On the
internet I cannot find the Dutch equivalent for Ativan (Lorazepam). Do
you know where I can find the right name?
Another thing is that I've noticed my RLS gets better
when I take two aspirin or paracetamols. Does this mean that I could
also look for a medication in the class of pain-medication? In your
medication list I found the name 'Ultram'. With this medication I have
the same problem as with Ativan: I can't find the Dutch equivalent.
I do not have access to the Dutch drug formulary so I
cannot be sure what is similar to Ativan. Check with your doctor
for a medication that is a little longer acting than Xanax. Another
alternative would be to increase the dose of Xanax to 1 mg.
Aspirin and paracetemol (Tylenol) are pain
medications, but of entirely different classes. They generally do
not help RLS so it is hard to advise you on what similar medications to
Ultram (Tramadol) may not be available in your
country and there are no other similar drugs that I know of.
Tuesday, November 13, 2001 5:45 AM
I have a severe case of restless legs. I
have tried most of the meds out there, Sinemet, Permax Requip. I have
been on Mirapex for 3 years and I take 4 .25mgs from late
afternoon to bedtime. In the last few months my restless legs
has started much earlier in the day, like at 2:00 pm.
Should I be taking one tablet earlier during the
day? I also have rheumatoid arthritis, which I take 200 mg of Celebrex
and 50 mg of Ultram. The Ultram 1 tablet twice a day. Sometimes
it seems the Ultram does help the RLS. The Mirapex does make me
sleepy. Do you have any advice?
To improve your RLS it may be necessary to increase
your Mirapex, but if daytime sleepiness is limiting you, then you may be
stuck. Sometimes, after taking the increased dose of Mirapex for a
while, you may get over the daytime sleepiness.
Ultram is a very good drug for RLS, and you certainly
can use it to supplement your RLS treatment (with the approval of your
doctor). Neurontin may be another choice to add to your medication
Sent: Tuesday, October 16, 2001 11:20 AM
Subject: RLS Medication
I am 58 and I have probably had RLS for over
30 years. For the first 20 years I didn't know what it was and
just suffered, rarely sleeping more than 2-3 hours at a time. About 10
years ago I finally told my doctor about it and he prescribed Sinemet.
It worked fine for a while but I had to continually increase my dosage
until the augmentation problem kicked in.
He than switched me to
Permax which also worked great for a time. I took Permax for about 4
years. My prescribed dose at the end of 4 years was .2mg per day but
on many days I would take up to .3mg per day with no relief. Sometimes
I would take a Sinemet pill with the Permax and would get excellent
relief but I felt like I was taking too much medicine.
I than asked my
doctor to switch me to Mirapex which also initially gave me excellent
relief. I am now up to .75mg of Mirapex and sometimes take 1.0mg but
do not always get relief anymore. Many times I can't fall asleep until
2:00AM however once I fall asleep I seem to sleep well.
My question is ; should I switch back
to Permax or take some combination of Mirapex and Permax or Mirapex and
Sinemet, My fear is that I am running out of medications to treat
my RLS. I am afraid of taking any opiates and would prefer not to.
Any advise you can provide would be
Oak Island, NC
I have several patients that seem to get some
tolerance to Permax, Mirapex and Requip. What I have found to work
in some of these patients is to alternate these medications (usually
every few months or so) when the tolerance occurs.
Another alternative would be to add a drug like
Ultram or a narcotic which may help you keep your dose of Parkinson's
disease drugs lower.
Sent: Thursday, November 15, 2001 8:07 AM
Subject: Struggling with meds for RLS
I am a 57 year old male, who 4 years ago was diagnosed with RLS (probably
unknowingly having it for 20+ years). This conclusion was made by a
prominent sleep specialist after my having completed an all night sleep
study. It was found that I kicked 54 times an hour, over a 4 hour sleep
period. He prescribed 2mg of Klonopin, which helped for a while.
sleep study was performed while on Klonopin, with the results that I was
still kicking 18 times per hour over a 6 hour sleep period.
I should add that I have had a previous sleep study done looking for
evidence of sleep apnea. This respiratory specialist found that I had a mild
case of sleep apnea, not bad enough for a CPAP unit. She also
said that I had "an intrusion of alpha waves in my sleep and there was
nothing that she could do for me"!
Well when my current sleep specialist
told me that I had RLS, I asked what did the respiratory doctor's report
indicate. It showed that I had kicked 774 times over an 7 hour
sleep period. This was my "alpha wave intrusion"!!
In the ensuing time I had stopped taking Klonopin and tried Sinemet and Sinemet
CR without any success.
Currently I am back on 1mg of Klonopin along
with .5 mg of Mirapex with very limited success. I awaken, as I have for the
last 5 years feeling totally exhausted, like I never had slept at all.
I personally feel that I am not getting stages 2 & 3 of sleep? I do have
some REM sleep (that I know of) early in the AM which always awakens me,
ending my nights sleep. My normal length of sleep is 6 hours, this being the
absolute maximum, never more than that. There are nights that I suffer from
onset insomnia and get only 3-5 hours of sleep.
I do not have the creepy, crawly feeling in my legs any more during the
evening before bed (which I had previously). There is no pain involved.
I avoid caffeine, alcohol and keep regular sleep times with no daytime naps.
Additional meds that I take are 800IU of vitamin E, 20 mg of Lipitor, 20 mg of
Losec and 250 mg of Ticlopidine. The latter twice daily. My ferritin level is
My deceased mother, one of her brothers and 3 of my first cousins on my
mother's side have this, only to a lesser degree.
Any suggestions you may have will be greatly appreciated.
It sounds as if the RLS part of your problem is resolved
with your current medications but the PLMD part may or may not be treated.
The only way to tell whether or not the PLMD problem is still a concern would
be to get another sleep study.
The daytime fatigue and lack of rest you are experiencing
may be due to continued PLMD or due to the side effects of Klonopin. This drug has a very long half-life (30-40 hours) and when taken regularly it
will cause daytime sleepiness and fatigue in a high percentage of patients.
It may be helpful to change to a short acting sleeping pill
(such as Ambien) and see if this improves your problem.
Sent: Friday, November 16, 2001 11:54 PM
I have restless leg syndrome. Was treated with Sinemet which helped, but
the longer I was on the medication, the condition seemed to worsen.
The Internist has now given me Zanaflex to try. The first dosage made me
very itchy, and the RLS was even worse without any improvement on the first
dose. I am hesitant to continue this treatment - my doctor is leaving
week of vacation - without being able to call him about these problems.
Do you have information regarding Zanaflex as treatment for RLS?
Zanaflex (tizanidine hydrochloride) is an anti-spasticity
drug that has no known role in treating RLS. There have been some
anecdotal patient reports that this drug has helped, but otherwise it is
really not indicated for RLS.
Sinemet helps at first, but typically worsens the problem
with time (as in your case). Mirapex or Requip are your best bets to
control your RLS. Most doctors do not know how to prescribe these drugs
so they will choose other much inferior or useless drugs when treating RLS.
Sent: Saturday, November 17, 2001 10:00 PM
Subject: RLS, CFS/IBS and tyrosine/leucine
I wrote to you a couple of months ago about the possibility of the
anti-depressant Prothiaden making my RLS worse, and you replied it might well
do so. After discussion with my psychiatrist, I decided to go off the
Prothiaden slowly, and when I got to a low dose (25 mg, just one tablet) I had
a few wonderful RLS free nights.
However, my irritable bowel syndrome (IBS) got worse as the anti-cholinergic
effect of the Prothiaden had been helping. With the IBS the RLS came back, but
in a somewhat different way - less jerks and more "tension building"
before the odd jerk. At first this wasn't too bad, but is now slowly worsening
and I'm almost back to where I was with the Prothiaden (which I no longer seem
to need for depression or anxiety - these haven't come back).
Mirapex and Requip are not available here in Australia. So what would be the
next best thing? (I have tried Sinemet and Tegretol, but the side effects
caused me to stop them).
One other thing I have come across is the relationship between tyrosine (and
muscle catabolism) and leucine in CFS people. The following is an excerpt from
an article "An Update on ME/CFS Research at the University of
Newcastle" in the "Queensland ME Quarterly", p22-23. (The University
is in New South Wales, north of Sydney).
"Many of the symptoms of CFS are consistent with a host response to
pathogenic challenge. The issue we are focusing on is the proteolytic
response, or catabolism, which involves muscles, acting as a protein
reservoir, which release amino acids to fight infections and to build new
materials when needed. This well documented response is seen in trauma,
infection, stress, certain genetic anomalies, acquired disease states and
cancers. There are two types of storage reservoirs, the fibrillar reservoir of
muscle fibers used for contraction and strength, and the non-fibrillar
reservoir of non-structured proteins from inside the cytoplasm in the cell.
A key amino acid indicating non-fibrillar catabolism is tyrosine. Increased
levels of urinary tyrosine are a very well documented indicator of a
proteolytic response. Urinary tyrosine levels in most patients with CFS
indicate a non-fibrillar response. What this means is that there is an
underlying organic process in most of the patients with chronic fatigue or
chronic pain conditions. When the non-fibrillar response is insufficient to
meet demands, the fibrillar response is switched on like a back up system. In
many patients we see the amino acid 3-methyl-histidine, which is the marker
for this fibrillar response. So, using well documented markers of metabolism,
we have found that the body is responding to some kind of prolonged,
traumatic, perhaps infectious, challenge.
As the protein reservoirs release nutrients, rising levels of the Branch Chain
Amino Acid (BCAA) leucine switch this proteolytic response off. We find in
most patients that the leucine level is very low, sometimes undetectable,
meaning catabolism will be sustained. The tyrosine/leucine ratio then gives us
an indication of the extent of the proteolytic response."
In my CFS tests done two years ago through the University of Newcastle, I have
definite fibrillar and non-fibrillar responses, my urinary tyrosine levels are
way above normal, and my leucine levels below normal. My 3-methyl-histidine
levels are also high. My tyrosine/leucine ratio is 8 when it is considered
that problems arise above 4.
Having seen this article recently (I didn't know about the role of leucine
before), I decided to give the BCAA's a go (they can be bought over the
counter at a health food store). Please note that the article does not
specifically refer to restless legs, just catabolism, but given my test
results and symptoms I thought a connection was possible.
The BCAA mixture contains leucine, iso-leucine and valine. I found that the
BCAA tablets are very good for restless legs - they fixed the problem! No more
"tension building" and jerking, or the need to get up and walk
On the down side, I have found that I now have a tingling/burring sensation in
my feet and lower calves, and a little tingling in my fingers. This sensation
is not pleasant and is present all the time. So, unfortunately, BCAA's don't
seem to be my answer, but I have included the above as RLS is not uncommon in
CFS patients, and someone might benefit from it. Note also in the earlier
days, amino acid supplements were given to, and of benefit to some CFS
However, if anyone knows what to take for the tingling/burning symptoms, I'd
RLS and CFS are both not very well understood disorders.
There may be a link between the two disorders (I feel that the sleep
disturbance from RLS may be one of the significant causes of CFS in these
I have had Australian RLS sufferers who have been able to
obtain Mirapex and Requip. They are a much better way to treat RLS and may
help your burning sensation complaints.
Sent: Sunday, November 18, 2001 7:19 PM
Subject: RLS driving us insane
My aunt has had RLS since I can remember, but over the last few
years it has gotten worse. She was always very active, but then she
just kept getting weaker and weaker. And then leg pain was moderate she
was up all night but could handle it. She went to an neurologist and he
put her on Sinemet trying every way you can think of with this
medication. And putting her on every other Parkinson's disease medication to
Nothing helps her Mirapex, Requip, Comtan and toooo many others
to mention. She was taken off of Sinemet and that was horrific the
withdrawal was horrific. Then they started ECT treatments. And
all that the doctors put her back on Sinemet. Her augmentation again is
horrible it doesn't last long she takes 25/100 every 4 hours. She takes
Lorcet every 4 hours to try and make the Sinemet last.
She has panic
attacks, hallucinations, fits of agitation. I tell you it has been
nightmare for 3 years. I am her niece, and if I hadn't loved her for
the person she was before this horrible disease I would have bailed a
long time ago. She goes to Cleveland to a world renown doctor. In December,
all her doctors wrote letters that nothing helps.
Maybe a nerve block or
implant might work? Has any one had any success with this? I also
heard reflexology was helpful. Anything you can tell me would be
useful. To all of you out there suffering you are not alone, you are
not crazy! God Bless each one!
RLS and CFS are both not very well understood disorders.
There may be a link between the two disorders (I feel that the sleep
disturbance from RLS may be one of the significant causes of CFS in these
I have had Australian RLS sufferers who have been able to
obtain Mirapex and Requip. They are a much better way to treat RLS and may
help your burning sensation complaints.
Sent: Monday, November 19, 2001 3:01 PM
Subject: Re: RLS
About a year ago, my doctor put me on 2 40 mg tablets of Celexa a day. She
also gave me a prescription for Trazadone, 1-2 tablets a night as needed. I
was feeling very overwhelmed and tired. I had no energy to do anything. At
first, I did feel better. I had described to her the feelings in my legs at
night and she asked me if I thought I had RLS but I said no because I didn't
know what it was.
After reading all the information I can find on the
internet I am sure I have RLS. I hurt my back a few months ago and she gave
me a prescription for Ultram. When I take this I feel wonderful. I have
energy and I feel alive. I have no need for Trazadone at night and sleep so
well. I know I am taking too much Ultram, up to 8 of the 50 mg tablets a day.
would you suggest for my treatment?
The amount of Ultram is a very high dose (as you have
stated). Although the Ultram works well for RLS, there are better
treatments such as Mirapex or Requip which may eliminate the need for most if
not all your Ultram.
Monday, November 19, 2001 8:40 PM
Subject: RLS & Vitamin E
I'm 41 years old, and have only had RLS for several years. My symptoms
occur only at night when I'm trying to fall asleep. I call it a
"twitchy" feeling. Usually it starts with my right foot
(from like the middle of my calf) down to the bottoms of my feet. I get this
electric kind of feeling, and I absolutely have to twitch my leg or stretch
my feet and twist them. If I fall asleep right away, I'm usually fine. If I
have trouble falling asleep, the twitching will set in, and I won't get to
sleep until 2 or 3 in the morning.
I have no trouble when I nap in the
daytime. Now insomnia has set in. I have been diagnosed with fibromyalgia, I
take 1/4th of a 25 mg tablet Amitriptyline to help with sleep and for
chronic pain, and tablet Vioxx 50.
I have a worse time sleeping now and of course the feet jumping problem
is worse. Yes summer is worse for me also but I found that by sticking my
feet out the end of the blankets and letting the fan keep them cool does
That motion sickness pill makes them really bad!!!!!!!!!!! Even sitting
in a chair my feet drive me crazy. One thing I found that really helped , was to take 1000 IU of vitamin E
daily after 3 days or so...NO MORE RLS!!
But I was concerned about the Vitamin E getting stored in my liver.
Just how much is safe? I would really like to take this again.
We have not heard of Vitamin E helping RLS, but anything is
possible. A dose of 400 IU is probably the more common dose, but many
have taken 1000 IU per day for years without problems.
Amitriptyline and motion sickness pills will almost always
make RLS worse.
Sent: Tuesday, November 20, 2001 8:13 PM
I have been reading through all the other
information e-mails on this site and I think I have finally found the
answer to my aching legs at night. I can sympathize with so many of
these people because I have suffered too many sleepless nights due to aching
and throbbing legs.
I too have a history of alcoholism (not
drinking now) but can think back to my early teens and having these aches in
my legs. My parents put it off to growing pains and now, my doctors keep
telling me its all in my mind. I can go to bed at 10 o'clock at night
and at 3 in the morning I am still awake. For the last month I
have been able to find some relief, believe this or not, in taking 3 or 4
puffs on of marijuana before I go to bed and find the aching stops and
I can sleep. I stopped smoking it and in a couple of nights, the
aches were back and so was the sleeplessness.
I do experience the pains during the day
and find they are getting more frequent. But, especially because I
work with heavy equipment, I certainly don't smoke it during the day, only
before I go to bed.
Have you ever heard of RLS sufferers using this type of
therapy? I know it is not right, but with no doctor is helping me with
prescriptions. It is
the only way I have been able to sleep.
Any suggestions or help in the Western Canada area would be greatly
Thanks for any help,
Many RLS sufferers have resorted to marijuana to relieve
their RLS. This drug seems effective in treating RLS (as best as we can
tell from anecdotal reports), but it is illegal and as you have stated is not
appropriate for use when working with heavy equipment.
Mirapex or Requip should give you as much or better relief
and is safer (less side effects and it is legal).
Sent: Tuesday, November 20, 2001 11:02 PM
Subject: New name
Isn't it time to rename Restless Leg Syndrome? I can actually deal with
the symptoms in my legs. It's when I feel it between my shoulder blades
that I want to chop my head off. I can also count on feeling it down my
arms. One at a time of course. Anyway, it is such a benign name
for such a terrible affliction.
Thank you for all you do,
Some want to call it Restless Limb Syndrome (to retain the
RLS name), but as you have pointed out, it also occurs in muscles other than
those in the limbs.
There has been a lot of debate about changing the name of
RLS, but most RLS sufferers who do not know that the disease even exists can
find it easily by doing a web search (which often includes the word leg).
Sent: Saturday, November 24, 2001 10:35 AM
Subject: Requip dosage
The doctor who started me on Requip has
advised me that I shouldn't go above 4 mg per day. I did not reach an
effective dosage until I was up to 6 mg per day, taking 2 mg at noon, 5
pm, and 10 pm. I reached this dosage after four weeks on this medication.
I've had a full week of good sleep for the first time in several years.
Need I worry about this dosage level and how likely is it that I will have
to keep increasing the dosage? I had to do the increasing with Permax
until I was told to go no higher. What's the maximum I should go with
Requip? Will it help to supplement my current dosage with Darvocet?
Parkinson's disease patients can go up to 24 mg per day,
but most RLS sufferers need only a fraction of that dose. The typical
range of Requip for RLS is between .5 mg and 1.5 mg per day. The 6 mg
per day is an extreme dose reserved for only the worst few percent of RLS
sufferers. There is no upper limit of this drug for RLS, but only rare
cases need your current dose or higher.
Darvocet or other narcotics may diminish your need for
Requip, but that may invoke a whole other set of possible concerns.
Sent: Tuesday, November 27, 2001 6:51 PM
Subject: New Prescription
My doctor gave me amitriptyline 50 mg today.
In looking through the different letters in this site, I have not seen
anyone taking these before. The doctor did say that these were better
than Mirapex or Requip.
Do you know anything about this new pill and
are there any adverse side affect I should watch for? Also, I am
taking 25mg of Vioxx per day (mornings only). Are these compatible?
Elavil (amitriptyline) is one of the antidepressant pills
that has a high incidence of worsening RLS. This drug is on the list of
medications to avoid (see our RLS Treatment Page), so most RLS specialists
will recommend not taking this drug if you have RLS.
Mirapex and Requip are the drugs that RLS specialists use
the most. Vioxx is an anti-inflammatory drug that generally has no
effect on RLS, nor does it interact with most RLS medication.
Sent: Wednesday, November 28, 2001 5:21 PM
Subject: restless leg syndrome
My husband has had restless leg syndrome for several years. It now seems to
be getting worse. The first medication the doctor tried was quinine and it
did nothing. This week he put him on Neurontin and it has made him very
There is no way to cut down dosage on a 300 mg capsule right?
He also has Meniere's Disease and has to take 2mg of valium three times a
day. I feel that this may be why he got a bad reaction to the Neurontin.
Quinine is a great mediation for leg muscle cramps, but has
no role in RLS. Neurontin is used by some RLS specialists, but dizziness
and sleepiness often limit its usefulness. It also comes in 100 mg
capsules, so you can get a lower dose by using them.
Mirapex is a better drug (in my experience) for RLS and at
low dose (which is what most mild to moderate RLS patients need) has few side
effects. Most doctors do not know how to prescribe it for RLS, so you
may need to bring in the information on its use from our RLS
Sent: Thursday, November 29, 2001 5:50 PM
My family calls RLS "the jumpies", and my mother, father,
uncle and brother all suffer(ed) with it. My experience is of a sudden
tingling somewhere in the affected leg, followed by the irresistible urge to move it. I have tried mind over matter, whereby I
relax and tell myself to let it happen, to experience the feeling rather than
moving my leg to make it go away. I then feel a spasm passing
through the affected muscles deep inside my leg, and can feel and
watch my toes moving and stretching as part of this.
The problem is that
the sensation of this spasm makes me feel almost nauseous, and generally
I have to give in, get up, and walk about - putting weight on the
affected leg seems the only effective remedy. Occasionally I can
make it stop by pressing my thumb hard into my foot just below the inside
ankle bone - pressure on the affected muscle where it comes near the
skin surface can sometimes help. I am going to try acupuncture for
Interestingly (and thankfully) it's never in both legs at once, and seldom
happens during the day (presumably because I'm standing, walking or
sitting upright). I sometimes have the sensation in one of my arms, but
this is less common. It also seems to come in phases, and was awful
towards the end of my pregnancy. I could guarantee that every time I sat down
to put my feet up it would start. It's very difficult tracking the effect of
diet, stress levels, hormonal changes etc which could all be affecting it.
I haven't needed to resort to medication so far, but sympathize with those who
An English sufferer
Sent: Friday, November 30, 2001 3:04 PM
I've had RLS and used Diazepam 5mg for 30 years
with good results. However, I have developed stenosis of the spine the
last few years and need a muscle relaxer to help to sleep with that
condition. I have found that increasing the Diazepam to 10mg works
better for both conditions and I don't need the muscle relaxer. But my
doctor does not agree with the increase in dosage. He may be concerned
about addiction. Would Ambien be a better choice?
Ambien is not a muscle relaxer, so will not help the spinal
stenosis problem as the Valium which can act as a muscle relaxant.
Valium can be quite addictive, so keeping the dose low (and using it
intermittently if possible) is a smart idea.
It would be better to consider Mirapex for your RLS, so
that you will not need any sedative/sleeping pill at all for this condition.
Sent: Saturday, December 01, 2001 12:07 PM
Subject: RLS and rheumatoid arthritis
I have been diagnosed with RLS and PLMD as well as mild peripheral neuropathy. I presently take 0.125
Mirapex and Ambien 10 mg daily. This has almost completely
relieved the PLMD which was driving me crazy and I am grateful for this.
However, at almost 67, the RLS and muscle cramps and pain in my legs,
feet and back is getting worse.
My doctor is helpful, though not
extremely knowledgeable (I know this from the info I have obtained from you
and others on the Internet) He has tried Ultram (it makes me very
nervous without much other results), Darvocet N (which helps a little) and
occasionally Vicodin (which works fine, usually 1/2 of 5/500 and later the
other half if needed).
I was diagnosed with RA in my early 20's but it
has only caused occasional flair ups with a small amount of finger twisting.
I can lay on my right side and my right leg will draw (all by it's self)
off my other leg and to the left. I call it "toeing in".
I have had insomnia since childhood and have tried various benzodiazepines
am afraid of dependence. I just know I'm tired of the whole mess.
still work as a secretary in a hospital in a very stressful job. The
muscles in my neck and back just spasm so bad at times I want to throw up my
hands and quit but I need to work and I might add, want to as long as I can.
I'm sorry if I have taken up too much of your time but wanted to give
you the "whole ghastly story".
Any suggestions will be very
much appreciated. (I do take Celebrex 200 mg bid for the arthritis which
I am sure includes osteoarthritis now).
Increasing the Mirapex, or using it more often during the
day, may help some of the RLS which is not currently resolved. If this
does not help, then supplementing with Vicodin is a reasonable approach.
Sent: Sunday, December 02, 2001 1:05 PM
I am to have Hiatal Hernia repair surgery [laparoscopic], very soon. I am 71yrs.
old, and have had 4 surgeries since 1998. And in 1998, I had anemia [7grms],
had 3 units of blood. The anemia started my RLS, and I've had RLS ever since. Under a
doctor's care and Mirapex, with very good results. After each surgery, I
awoke in recovery room, with very bad RLS, in my right leg and lower right back,
where I usually have RLS.
After this last surgery, gall bladder, and as I was
waking up in surgery, no leg problem, but my stomach felt as though, I had severe
RLS where the Laparoscopic surgery was done. The doctor kept ordering Bentyl to be
given intravenously, and the more Bentyl I had, the worse the symptoms, and the
worse the symptoms, the more Bentyl I was given. I had told my surgeon about
the RLS, and being a surgeon, I am sure he knew very little about RLS.
have to go to a different surgeon for this Hiatal Hernia, and would like to
avoid all of this pain that was associated with the last laparoscopic surgery.
Before the gall bladder surgery, I did take the Mirapex at 11:45 pm, the night
before surgery, thinking I might be able to avoid a RLS attack. And this could
have worsened the RLS, with the anesthetic, and medication for nausea, and pain
I would like to know how to talk to this surgeon, about what I should have or
The RLS Foundation is in the process of preparing a
document for anesthesiologists and surgeons so they will know what to use
during and after surgery for RLS patients.
Right now, the best that you can do is to bring a copy from
our website of the
list of drugs that should be avoided for RLS sufferers and give it to your
surgeon and anesthesiologist before you have your surgery.
Monday, December 03, 2001 12:58 PM
Hi! I just wanted to ask for some advice. I think I have restless leg
syndrome. I'm a 16 year old female and I can remember having trouble with
this since I was 8 years old. I remember sleeping over at friends house
walking around their houses in the middle of the night trying to get the
feeling out of my leg, the feeling of wanting to move it and knowing that
if I didn't move it would drive me insane.
If I said anything to my mom
she would tell me it was asleep and to walk around. I have had to leave
movies countless times to get up and walk around because the feeling was so
intense. I read on your sight that the syndrome gets worse with age, which
really scares me because my problem has always been significant and I
usually only have it in my right leg.
I don't go to bed until I am so tired
that I know I'll be able to fall asleep because I dread knowing that if I
lay there my leg will bother me. I need some help...where do I start? I live
near Cleveland, Ohio and I've never really gotten my problem "checked
Your help would be GREAT.
Show your parents the info from our website and convince
them to have you see a sleep specialist. There are several goods ones
in your area. You will be amazed at the relief you can have with a
drug like Mirapex at low dose
Sent: Tuesday, December 04, 2001 11:37 PM
Yes I have RLS do you know if PremPro might have anything to do with it?
Hormones sometime effect RLS. The only way
to tell for sure would be to stop the hormones for a month or two and see if
the RLS gets better.
Sent: Thursday, December 06, 2001 10:22 AM
Subject: Treatment for PLMD
We had a speaker at our support group
meeting who said that he would
treat PLMD differently than RLS. He mentioned prescribing Klonopin,
he later said that, speaking of RLS, he does not like to prescribe sedatives
or narcotics. He feels that Mirapex is his choice.
Do you consider PLMD and RLS to call
for different medications? I
have been of the impression that what will work for one will work for the
Newt in Portland
You are correct. The treatment is more or less similar
for RLS and PLMD. First choice is Mirapex or Requip, second is the
sedatives. Narcotics work better for RLS than for PLMD, but may still
Sent: Friday, December 07, 2001 11:17 AM
Subject: Restless Leg Syndrome and/or PLMS
I am thirty five and for the past year I have incurred involuntary jerking
of my legs and at times the entire side of my body. The jerking
lifts my leg well off the bed and I cannot even sleep in the same bed with
my wife. The jerks wake me up many times and I'm extremely tired the
My doctor prescribed Elavil to begin with and it has not helped
all. My other symptoms are numbness in my arms and I wake up feeling
especially in my legs and around my neck. My mother suffers from
feet" and Peripheral Neuropathy. I don't know if a genetic
could be part of my problem. Do you have any suggestions?
It sounds as if you have PLMD (not RLS). Elavil may
actually worsen the problem. Mirapex or Requip are much better choices
that might resolve the problem. A sleep study may be helpful to better
define the problem before starting medication.
Sunday, December 09, 2001 3:46 PM
RLS years and year
I have suffered with Restless leg syndrome since
the early 90's. It worsened after my laminectomy, however it was ever
increasing since I fractured my back in 1990. After numerous years I finally
went to Mayo for a sleep study and found that I had both sleep apnea and
severe restless leg syndrome.
We tried opiates first and they helped for a
while but in the end Permax was the only real solution. In the past
RLS only affected me when I started to relax at the end of the day. Now my
legs will twitch and pulse, if you will, at any time of the day if I have not
voided my bladder.
After reading your page about uric acid problems or
kidney problems and my symptoms of restlessness while fully alert but with a
full bladder. I am worried. I am very over weight as well now.
do I need to tell a regular doctor to get him/her to do the necessary
investigation to see if I have other problems that are expressing as
restless leg syndrome? I would like to add that people around me just
don't understand the uncontrollable twitching of my legs.
It is very common to have RLS occur or significantly
worsen after surgery, especially back surgery.
RLS is very common with patients who have severe kidney
problems when the urea (NOT uric acid) is increased. Your problem with
your bladder and uric acid should have no effect on your RLS (at least
as far as I know).
Sent: Monday, December 10, 2001 11:12 AM
Subject: Re: Medication alternative for RLS
Thank you so very much for responding to my email. I have a great doctor
here who prescribed the medication I mentioned below over the years after I
showed her the treatment information from your website.
So following your email, I asked her to prescribe Ultram and Parlodel.
Parlodel is the first drug she wouldn't prescribe citing bad side effects.
did try Ultram - it works somewhat for about six hours but leaves me
jittery. I tried taking another when the RLS woke me up in the middle of the
night but that just compounded the side effects although it was great for
the RLS. I'll only stay on it if I am desperate. Any other suggestions?
Thanks again so much. It is wonderful to have someone I can write to
I have several patients on Parlodel and if started at a low
dose and increased slowly should be no real problem. If side effects
occur, just stop the medication.
Another choice would be Neurontin, but that should also be
started at a low dose and increased slowly. That can be taken with your
Sent: Monday, December 10, 2001 6:01 AM
If you will recall I have PLMD which occurs immediately upon my falling
asleep. I have been using Sinemet CR and a small dose of a sedative
which has resolved the sleep initiation problems. However I have now
been experiencing a problem after about my first 4 hours of sleep of
These awakenings seem to be occurring during my REM sleep
because I can vividly recall my dream and my upper body feels completely
paralyzed when I wake up. It is often difficult to get back to sleep
from these. Could this be related to the PLMD?
It is possible that your problem may be related to PLMD,
but it sounds more likely that this is a REM related problem. PLMD do
not generally occur during REM sleep.
You are describing a form of sleep paralysis, which may be
due to overactive REM in your case. Many of the benzodiazepine sedatives
decrease REM, after which there may be some REM rebound later in the night.
Sent: Tuesday, December 11, 2001 11:19 AM
Subject: Ferritin test
It is becoming more apparent that low iron and RLS go together
when I asked for a ferritin test to be included in my blood work several
years ago, my doctor said that Medicare would not pay for it. I paid
myself and was pleased to find it to be 89, well above the suggested minimum
At our last support group meeting I
asked for a show of hands for
those who had been tested for ferritin and at least six people responded.
When I asked how many had paid for that test themselves, nobody raised a
What is your approach to this obvious
diagnostic tool? It seems to me
that, when anyone has been diagnosed as having PLM or PLMD the ferritin test
should be run immediately since correcting a low level of iron can, in many
cases, effect complete relief without resorting to medication. Does
now recognize RLS as a disorder that it will cover? Specifically the
ferritin test? If not, and my doctor is still correct, what can be
convince Medicare that this is an extremely important test? From a
group leader point of view this is vitally important since we tend to
recommend the test but my doctor cautions that, if Medicare still doesn't
accept it for payment, it may still slip through their screening process but
later be picked up in an audit and thrown back to the patient for
reimbursement. I would hate to be blamed for a recommendation that led
The problem is that Medicare has very strict and rigid
rules to determine what it pays for and what it does not cover. Each
blood test has a list of diagnostic codes that will enable the test to be
covered by Medicare.
If the code is not on the list that supports the test,
then your doctor (or the lab performing the test) must have you sign a form
stating that you are aware that the test is not covered by Medicare and you
are responsible for the cost.
RLS is barely recognized by Medicare as a disease entity.
We just recently got our own diagnostic code. In the past, we shared a
general category with other movement disorders which were completely
unrelated to RLS. Medicare is very slow to change and they have no
idea that a serum ferritin level should be done on every RLS patient. The RLS Foundation is working on this problem (and many others) currently.
Sent: Tuesday, December 11, 2001 12:07 PM
Subject: Just starting RLS therapy
I just wanted to put in my 2 cents worth... I have known for about 2
years that I had RLS, but I have lived with
the symptoms since at least 1995. That is the year in which I remember
actually "moving" my feet to relieve my
symptoms... The reason I remember this is because my cat would
my feet while they were moving! I
have always had problems falling asleep since childhood and now it is just
getting worse and worse.
Last summer I had back surgery and was put on about a couple of weeks worth
of Percocet... What a miracle
drug!!! Not only did it relieve my pain from back surgery, it gave me the
best sleep I've had in years!!! I would take
the medication and be asleep about 1/2 later... I would wake up feeling
rested and refreshed and I wouldn't feel at all
tired during the day, something that is VERY rare for me.
Unfortunately, when I ran out of Percocet, my doctor wouldn't refill the
prescription because of how powerful a
narcotic it is. Anyway, the quality of sleep I got while taking this
medication prompted me to seek out other
medications that might help me.
I tried taking just Ambien, but even though it made me really tired, I
still couldn't go to sleep easily because I still
*NEEDED* to move my legs and feet. Yesterday, I started taking 1/2 a pill
of Sinemet (25/100). It seemed to help a
little last night. I'm going to stay on this dose for another few days
and then increase to 1 pill if my symptoms are not
I just had a blood test to determine my "iron" levels and they are
so iron therapy is out for me.
I am really hoping that Sinemet is going to do the trick for me, but I have
a feeling that nothing is going to be a good
as Percocet... oh well...
Percocet and other narcotics work great for RLS, but as
they are addicting, they should be used only when other options have been
tried. Be very careful with Sinemet!! Once you exceed 2 of the
25/100 mg tablets per day, there is a very high chance of augmentation and
rebound occurring. Most doctors are not aware of this problem.
Mirapex or Requip are much better drugs for RLS and
should eliminate the need for narcotics and improve the quality of your
sleep. See if you can get your doctor to change to one of those
Sent: Wednesday, December 12, 2001 9:05 PM
Subject: Restless Leg Syndrome
My 21 year old daughter is a senior in college in NYC and
called me yesterday telling me that she has had a reoccurrence of RLS as of
two weeks ago, and it's never been worse. She has been under major
with papers and finals, and she waitresses on weekends. I told her to
relax and maybe she is doing too much. She said she hasn't slept
more than a couple of hours a night.
Needless to say, I am very
suggested she take a Xanax before she goes to bed, which she has a bottle of
from a previous bout with this condition, but she is afraid she won't
function in class early the next morning. Aside from the stress, I was
trying to think if anything changed medically in her life. Then I
that she recently went on the birth control pill about two months ago.
you think there could be a relationship between these symptoms and the pill.
Also, I have read that calcium and magnesium can help this condition, that
might be a deficiency of these minerals in the body. What else do you
might help her. She said she can't even exercise at the gym because
feels like it doesn't belong to her. She said the only thing that
punching it or extreme pressure on it.
It is so frustrating when you
help your child. Also, she had third stage Lyme Disease from
which I thought she had been totally recovered from. Do you think this
be a result of the Lyme disease. So sorry that I have so many
Please respond as soon as you can.
Thank you so much.
Xanax may be helpful for mild RLS and if the dose is low
enough, there should be no daytime sleepiness for most patients. Each
patient may need a different dose to be effective, but can get by with as
little as 1/2 or one of the .25 mg tablets. An alternative sleeping
pill that rarely causes any daytime problems and also has the benefit of no
tolerance/addiction is Ambien.
A better way to treat your daughter's problem is with
Mirapex or Requip which are Parkinson's disease drugs.
We do not fully understand the cause of RLS, but there is
no known link between Lyme disease and RLS.
Sent: Friday, December 14, 2001 11:38 PM
Subject: RLS/Thera beads moist heat
I have been taking the thera beads
moist heat pack to bed with me. I put it between my legs and sleep on
my side. This really helps stop the feeling of the RLS and I can go to
sleep. I also take Klonopin, however it doesn't work for me. It
was prescribed for GERD/reflux and it helps that condition. The Thera beads can be found online at the pain relief store. Hope this helps
other RLS victims. And I do feel like a victim.
Have your doctor prescribe Mirapex or Requip. They
work much better than other therapies. Klonopin is not indicated for GERD
(nor does it have any known benefit for GERD) so that does not make any
sense. It is a very addictive drug so it should not been taken unless you
are getting benefit from it and there are no alternatives.
Sent: Saturday, December 15, 2001 1:07 PM
I have had RLS for over 10 years. I discovered Klonopin about 5 years ago. (from an
article "Night Walkers") Klonopin has taken away the restlessness, but for over two
years I have been experiencing a lot of pain, sometimes starting at
4pm. The weird sensations are starting earlier in the day than they used
Is there any "safe" pain
medication I can take with the Klonopin? I appreciate any help.
Mirapex (a very safe drug for RLS) may help the pain and
the restlessness. You may then be able to slowly wean off of Klonopin.
Sent: Saturday, December 29, 2001 5:26 PM
Until about a year ago, I had never heard of
RLS, and I thought it was just something about my legs. I think this
may have been inherited from my Mother, who often complains of not being
able to sleep because of her legs hurting. Now I don't think of this
as a pain, but it can drive you up the wall trying to relax enough to go to
sleep. It feels like nothing you can describe that makes sense.
Its really not a pain as a pain you can pin point and deal with...this is
just a uncontrollable need to move your legs. I will walk and walk
through the house just for the relief. Thank You for having
information here that can maybe help me and my doctor to give me some
relief. Also I have found that if I take certain over the counter
medicines it appears to worsen.
I was wondering if anyone else has
notice this. Allergy meds are one med that I seem to get RLS with.
It does leave sometimes and stays gone for good lengths of time and then
returns and stay. Is this normal also?
Check out our RLS Treatment Page and you will see many more
medications that worsen RLS. Antihistamines in allergy medications are
amongst the worst for causing an increase in RLS symptoms.
The symptoms can come and go, often made worse by
medications or other things that you are doing.
Sent: Monday, December 31, 2001 2:00 PM
Subject: Re: RLS
What causes RLS and once you get it, does it ever go away or do you have to
take medication for it forever? Why is it worse some days than others? Does
the loss of estrogen have anything to do with this? Does caffeine or any other
certain foods contribute to the pain? Are there any vitamins or natural
remedies that can help? Does living in a colder climate matter? I live in
I consider myself very active and I eat healthy so what gives? I'm
not overweight and I don't smoke or drink. I don't have high blood pressure or
any other health problems besides the hypothyroidism.
All of my health problems seem to have started after the
lead to my hysterectomy, any connection there?
I really appreciate your help.
The cause of RLS in still unknown and it is not understood
why it may vary from day to day. Caffeine and foods may worsen RLS (see
our RLS Treatment Page for more info). None of the over the counter
medications or natural remedies seem to help most RLS sufferers. Climate, level of fitness and other health problems are not factors in this
Hormone levels may have an effect on RLS, but this is also
not well understood. Some patients worsen with menopause and others get
better. The disorder very often worsens in the last half of pregnancy,
but whether this is due to hormonal problems or otherwise, is not known.
Sent: Tuesday, January 01, 2002 12:34 AM
Subject: l-tyrosine is solving my restless legs
I just wanted to get a message to other sufferers .
I have been suffering from RLS for over 20 years and have
tried all sorts of cures with no release. Recently I found some info
regarding a natural amino acid called L-tyrosine which I have been trying with great success for the past months.
It is truly amazing to stumble upon the answer.
Perhaps other RLS sufferers can find similar relief.
Various natural remedies such as L-tyrosine seem to help a
small minority of RLS sufferers, but we will put your information on our web
site to see if others may benefit.
Sent: Tuesday, January 01, 2002 12:33 PM
Subject: a couple questions
I currently take 0.5 MG of Mirapex late afternoon or early evening. I also
take 2 Feosol ferrous sulfate tablets (equivalent to 650 mg) with it.
This addition of iron supplementation has made a major difference in the
effectiveness of the Mirapex. I also take a tablespoon of Metamucil
every morning. I will read about the best times for taking the iron as I
just located the info in your helpful website.
1. Why am I so tired all of the time? I seem to be getting 6 to 7
hours of sleep but can't seem to feel fully awake and with energy. Since
I can't sleep additional hours, I don't know how to feel rested.
2. My RLS is worse when there is any pressure or fullness in the bowel
(especially the rectum). Is there any connection between RLS and nerves in this
If you are still tired after adequate sleep time (women
often need 7-8 hours of sleep) then there may be a problem with your sleep
quality. RLS patients may suffer from PLMD which causes the deeper
stages of sleep to be decreased. You may need a sleep study to prove
this problem then address it with the appropriate medications if necessary.
There may be other causes of fatigue such as anemia or
thyroid problems which should be ruled out first, of course.
There is no known relationship between RLS and nerves in
the bowel area or bowel problems.
Subject: Doctor for RLS?
Sent: Tuesday, January 01, 2002 2:20 PM
Thank God I found your site. I have been
suffering for as long as I can remember with RLS. My symptoms are
not being able to sit for any length of time before I must move my legs.
When I lay down at night to sleep, I must get up and walk around and then
fall asleep when I'm completely exhausted.
Of course, during the day
I'm ready to take a nap right after my lunch hour, but I don't think my
boss would approve. I do have some problems with my back (my 3 lower
disks are not in the greatest shape). I had injections to
relieve the back pain but I now have a constant ache way down in my lower
back along with legs I can't keep still. I am taking Zoloft (150 mg.
daily). I had been prescribed Wellbutrin but it gave me tremors and
was taken off of it.
I would like to know the correct doctor to
consult about these problems. Should I just go back to the orthopedic
doctor or some one else? When I complained to my general doctor last
year, he looked at me like he didn't know what I was talking about.
Thank you for any help you can give me.
Your general doctor should know about RLS, but
unfortunately, most know little or nothing. It is very likely that
your orthopedist will know even less.
You may be able to get your general doctor to prescribe
Mirapex by showing him our RLS
Treatment Page (which you can print out). If not, you should see a
neurologist or better yet, a sleep specialist. You should accept
nothing short of complete relief of your RLS symptoms.
Sent: Thursday, January 03, 2002 3:55 PM
I am in good health except for RLS and I
take Mirapex seven days a week for it. My doctor ordered a CBC
and I requested that the serum ferritin level be checked also.
His nurse called and told me everything
was fine on my blood work so I asked what the ferritin level was.
It was 25! I had asked my doctor how much iron I dare take per
day to try to relieve the RLS symptoms and he said iron has nothing to
do with it. I know some people have found relief by raising
their ferritin level. Can you give me any guide lines for taking
I don't want to eat a LOT of beef because
my cholesterol is borderline. Thank you for any help that you
The serum ferritin levels that are considered
normal by most labs are usually a minimum level of 10.
Therefore, when most doctors not knowledgeable about RLS look at
your value of 25, they assume there is no problem.
Levels below 45 have been associated with RLS and
treating with iron may be quite helpful. Check with your own doctor,
but one or two of the ferrous sulfate 325 mg pills per day should
bring your ferritin level over 45.
Sent: Sunday, January 06, 2002 6:22 AM
Subject: Sinemet withdrawal
I had been on Sinemet for approximately. one month
when my symptoms got worse. My doctor increased the dose, my
stomach couldn't handle it. I am now on Neurontin and was taking
a lower dose of Sinemet at night. This worked great for 3
months. Now my symptoms have once again worsened. Since I
cannot increase the Sinemet w/o getting sick, how am I going to
withdraw from this terrible medicine?
I need to know how long it will take to
get this drug out of my system. I know what it feels like to be
w/o Sinemet for a period of time. I thought I would go crazy.
Any suggestions to make this experience
more tolerable would be appreciated.
Have your doctor start Mirapex or Requip. Once
the Mirapex or Requip kicks in, you should have no trouble weaning off
Sent: Monday, January 07, 2002 8:38 PM
I am a 63 year old woman. I have had
RLS most of my life. When I was younger, I lived with it as it
would come and go... sometimes being severe and then letting up for
weeks. But when I reached menopause, my legs became worse.
Not only my legs became worse, but I was unable to sleep even
with medication for the legs. It was as if my head would not
shut down and go to sleep. That was 13 years ago.
I now have a neurologist who I see
regularly, and through trying several things over the past years, I
now take Requip for my RLS and Clonazepam for sleeping. It is
the best combination for me so far. I have been taking 3 of the
tablets of Requip at bedtime, and I can take one or 2 tablets during
the day if needed. And I take 2 of the 5 MG Clonazepam at
night to sleep.
My question is: Can this amount of
medicine cause any other problems or complications?
My legs are worse in the last year or
so... and I don't know if they would be worse anyway, or if the Requip
could make them worse... even while making the RLS stop long
enough to sleep?
And is there any evidence that
Requip effects the brain in any adverse way? Seems I have had
problems thinking clearly sometimes. And I don't know if it is
age or could it be the Requip? I know I am 63, but I am in good
health other than the RLS, and I don't think my brain functions should
be adversely effected at 63.
If you could shed some light on what
effects Requip is showing in patients, I would appreciate it. I
have been on Klonopin for several years...on and off... but could that
also have an effect? Or both medications? Is there
any evidence of these medications causing any other symptoms... even
while helping the RLS?
One can never be sure, but it is less likely that the
Requip is causing any of your problems. RLS does tend to get worse
as you get older, so that may be the best explanation for the worsening
that you are noticing. So far, Requip seems quite safe and no long
term complications have been noted.
The problems with your thinking is much more likely
to be due to Klonopin. It has a very long half life and causes
daytime sleepiness in a high percentage of people who take it every day.
A shorter acting sleeping pill (Ambien) is much better. If your RLS
is controlled by the Requip (you may need a higher dose if you are not
controlled completely on your present dose), then you should not need
any sleeping pill at all, which is even better.
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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
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