Patient letters on RLS symptoms and remedies- Page 52


Kicking RLS/PLMD Patient

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



Sent: Thursday, February 19, 2004 7:46 AM
Subject: RLS Interest

I happened on your site by accident and it looked interesting. I've have a problem for many years that sounds identical to many of the folks in the email section. I thought I was just weird, now it seems there are a lot of people with this problem.
Some years back I ran across an article (sorry don't remember where) that discussed this situation. It suggested that there was a connection between a lack of magnesium in the body and these various sensations. It recommended a product you can buy in most drug stores called "Slo-Mag" - it releases slowly, over time. I tried this and it did in fact help considerably.

There used to be times when I would try just about anything to get a little sleep in the middle of the night. I did find that by taking the "Slo-Mag" my episodes were greatly reduced and happen only infrequently now. For those times that still happened, a very strong vibrator/massage unit applied to my lower back and extremities for about 15-20 minutes would allow me to get a little sleep at least.

For what it's worth, I also take 2-3 mg of Melatonin an hour or two before going to bed. I definitely understand the feelings of complete helplessness, frustration, anger and depression.

Good luck to all with this syndrome. There may very well be other people worse off, but to the person having one of these episodes - they wouldn't know it.

A Medical Reply

Others have suggested and tried Slo-Mag.  It helps an extremely small minority of RLS sufferers unfortunately.  Melatonin also helps few patients.

Sent: Sunday, February 22, 2004 5:22 PM
Subject: RLS
I was delighted to find this information on the Internet. The letters are extremely interesting and I agree with many of the "cures". The main one is the woman who tried leg wraps. My similar solution was to use my husband's elastic knee braces. I never go to bed without one on each calf. They are easier to use than elastic bandages, which I tried first. It has helped tremendously along with other methods I've tried through the years. If all else fails, I raise my legs and massage them toward my heart. I am of the opinion that blood circulation can be at the heart of the problem.
Tom H. noted that sitting in certain chairs aggravates the RLS I found this to be true also. A hard back chair seems to be the best to use for long sitting sessions. A therapist told me to never sit so that the back of your knees are pressing on the chair seat and irritating the nerves. Also, do not cross your legs ( a difficult habit to break, but so important). When in a car I keep a pillow at my back so my knees are free of the seat.
After reading many articles on RLS, I added a multi-vitamin ( with 18 mg iron), calcium and magnesium to my daily diet. I definitely feel that the iron helped alleviate my symptoms from nightly episodes to bi-weekly.
My doctor gave me Elavil but it made me very groggy the next day. Luckily, I have not needed anything for a couple of weeks now, just stretching exercises. I know it will return, It always does!

Sent: Wednesday, February 25, 2004 11:30 AM
Subject: Insomnia with Mirapex?
I am taking .25 mg of Mirapex a day for RLS and have been very pleased with the results.  However it appears the medication may be causing insomnia.  I was taking the medication because RLS wouldn't let me sleep.  And now it appears the side effects of the medication are keeping me awake. 

Is there any solution?


A Medical Reply

You may try a smaller dose (.125 mg) and see if that helps the RLS but does not cause insomnia.  Another choice would be to change to Requip (.25 - .5 mg).
If that does not help, then perhaps a change to Neurontin would take care of your RLS and resolve your insomnia problem.

Sent: Wednesday, March 03, 2004 12:29 PM
Subject: Drug interactions with Mirapex
I just started taking Mirapex last night, to combat PLMD.  I am also currently taking the other following drugs: Lexapro and Wellbutrin (for OCD), Klonopin (for GAD), and Elavil (for insomnia.)
Even though a pharmacist has said that there should be no problem with interactions, would any of these medications be counter-productive to any beneficial aspects of the Mirapex?

A Medical Reply

There are no interactions amongst your medications but Lexapro and Elavil have a reasonable chance of worsening RLS.

Sent: Wednesday, March 03, 2004 7:15 PM
Subject: RLS Symptoms getting worse

I have been on Mirapex and Trazodone for sleep for about six months and thought things were under control.  I am an adult athlete and the stress of competition has always been a problem for me but the last two weeks, the weakness and shaking in my legs during and after competition has left me wondering who's body I'm in.  Even workouts are becoming difficult to complete.
I'm taking .25 mg of Mirapex at night and have added two doses of .125mg each during the day to try and stop the weakness and accompanying pain in my legs.  This has not stopped the pain and weakness and I was wondering if I should increase the dosage.
Any suggestions would be appreciated.
Paula S.

A Medical Reply

That is a very difficult question to answer.  Mild exercise will often improve RLS but vigorous exercise will usually result in worsening RLS.  I have many RLS patients who have had to curtail the level of their exercise to help control their RLS.
There is a chance that increasing the dose of Mirapex, but only trial and error can decide that.  You should discuss making that change with your doctor.

Sent: Thursday, March 11, 2004 2:34 PM
Subject: RLS Relief

I started getting RLS in my lower legs (mostly left leg) at age 31.  For the past two years, I have found that doing the following prevents RLS about 90 to 95% of the time:

1. After breakfast: (1) 1000 mcg sublingual B-12 tablet
2. No caffeine after Noon
3. At bedtime: (2) 1000 mcg sublingual B-12 tablets +  (1) calcium-magnesium citrate tablet (250mg calcium citrate, 125mg magnesium citrate combination)

I use a rapid dissolving B-12 that is sold at Trader Joe's called 'Under the Tongue B-12'.

If I am particularly active on a given day, then I might take an extra B-12 at bedtime (i.e., 3).  Hope others find this information helpful. 

GGB, 41 year old female from Tucson, AZ

Sent: Thursday, March 11, 2004 12:00 PM
Subject: Concern about Permax for RLS?
My general practitioner was advised by our local neurologist to try a long list of drug treatments for my RLS.   We tried them all until we came to pergolide.   This has better effect than any of the others but we are growing suspicious that it may have some contribution to other conditions.  

Would you agree that Pergolide is still the best treatment with less side effects than other drugs.   We are particularly worried about pulmonary fibrosis.


A Medical Reply

Pergolide (Permax) was used a lot for RLS up until about 5-6 years ago.  It does work well for RLS but tends to have more side effects than the newer dopamine agonists (Mirapex or Requip). 
There is a concern about pulmonary fibrosis when using Permax and you can get more specific info about this on our website.
There is an additional concern about valvular heart problems occurring with the drug and several case reports have been noted, but this does not confirm that pergolide is the cause.  If you are taking the medication, then you should have periodic echocardiograms to check your heart valves. 
For the above reasons, I do not any longer prescribe Permax, but rather use the alternative newer and better drugs.

Sent: Wednesday, March 17, 2004 3:59 PM
Subject: Approval of drugs for RLS?

I am a long term sufferer of RLS and my GP has tried pain killers, sleeping tablets etc. and because I am now becoming seriously debilitated through lack of sleep, he referred me to a Consultant Neurologist. It had to be a private referral as there is a two years waiting list in this area.

The consultant recommended Mirapex and Requip and wrote to my GP.  My GP has absolutely refused to prescribe these drugs as they are unlicensed and he has very little knowledge of them. Where does that leave me? At the moment I feel at a dead end. I could go back to the Neurologist and ask him to prescribe but this would have to be a private prescription and I have no idea what the cost would be.

When are we likely to have a licensed drug for RLS?  I feel that at the moment it is a question of geography. GP's in some areas will prescribe these drugs whilst others will not.

My suffering is intense but I have limited resources and I don't know where to go from here,
Margaret Z.

A Medical Reply


t will be at least a year or so before Mirapex or Requip gets FDA approved for RLS.  It takes a lot of time, money, and studies (I have been involved in 2 of them) to get the FDA to approve a known drug for another indication.
You should be able to find a GP that will prescribe these drugs even without FDA approval.

Sent: Friday, March 19, 2004 12:22 AM
Subject: Cancer Patient with long history of RLS/PLMD

I was just referred to your site this evening and find it to be incredibly informative.  I am wondering if you can help me with my particular situation. I have had RLS/PLMD for at least 10 or 15 years or more, and it seems to have worsened in the last few weeks.  I sometimes am up until 3 or 4 a.m. with the creepy crawly feeling most RLS sufferers are very aware of.

I have Multiple Myeloma, a terminal bone marrow/blood disease (cancer), diagnosed on 9/26/01.  I was exposed to Agent Orange while in Korea near the DMZ in 1968 and 1969 and am rated 190% disabled by the VA and 100% disabled by Social Security. Part of my rated disabilities with the VA include Peripheral Neuropathy (PN), likely as a result of taking Thalidomide to treat the cancer, but possibly due to the Agent Orange exposure.  I am a 57 year-old male.  Treatments I have received for my cancer include 10 treatments of radiation in late 2001 and another 10 in late 2003 (first to the L3 site where the initial tumor was, and then to the pelvic area where I began experiencing pain). Medications and chemo I have been on include VAD, Thalidomide, Dexamethasone, Medrol, Cytoxan, Prednisone, and now a very recently FDA-Approved drug, Velcade.  Velcade is specifically designed to treat multiple myeloma, and is known to cause PN in some patients and make it worse for some who already have it.  I also take a monthly infusion of Zometa (Palmidrone?), a bisphosphonate, to help rebuild the bones that are destroyed by the multiple myeloma.

I currently ONLY take the Velcade (infused at 1.3 mg/L2 2x/wk for 2wks and then rest 10 days) and the Zometa (monthly) as treatment for my myeloma. However, I also take Celexa (40 mg qd), Ativan (1 mg tid), Coumadin (7 mg qd hs), Neurontin (300mg tid), and Mirapex (.5mg qd, hs).  I have been on Mirapex for at least 4 years and had to increase the dose from .25 to .50 about 6 or 8 months ago, and it seemed to help some.  I typically take the Mirapex and the Coumadin about an hour or so before retiring. I only started taking the Neurontin to any extent in the last 6 months as my neuropathy increased.  I also have severe sleep apnea (93 awakenings per hour) and must use a Bi-PAP machine every night or else the quality of the sleep I get is so poor that I am a zombie the entire next day.

By way of vitamins/supplements, I take Feosol (Iron) (65mg qd), Super B-Complex (one tab qd), Vitamin E (400 IU qd), Multi Vitamin (from Costco) - (1 tab qd), Alpha Lipoic Acid (2-100mg caps tid), Folic Acid (800mg qd), Selenium (200mg qd), Coral Calcium (1000mg caps tid), Vitamin B-6 (200mg cap qd, then 50 mg cap later in day), L-Carnitine (500mg tab qd), L-Glutamine (2-500mg tabs, bid), Fish Oil (1000mg cap - qd h.s), and Potassium (K-Dur) (20meq tab qd).  Many of the vitamins and supplements are recommended to treat Peripheral Neuropathy by Dr. Richardson at the Dana Farber Cancer Institute (DFCI), and they do seem to help.  He includes the Neurontin in the recommended regimen.

So, given this rather exhaustive medical history/medication listing, I am wondering if you think there might be some factors that are interacting to increase my RLS.  Particularly (possibly) the Velcade, which I just started on 1/20/04, and which seems to be knocking the heck out of my multiple myeloma, which it the MAJOR MONSTER I am fighting against to stay alive.

Is there a relationship between PN and RLS?  Should I take some Mirapex a bit earlier in the day, as some have mentioned?  I do begin to get RLS around 7 or 8 p.m., but it is worst by the time I retire around 11 p.m. Should I try Requip by itself, or combine it in some fashion with the Mirapex?  Should I occasionally take a med holiday from the Mirapex?

Oh, by the way, I have also had a chronic dry (non productive) cough for the last 14 months, and it sometimes becomes so violent that I literally lose consciousness.  I've had no luck getting it diagnosed and treated after seeing a pulmonologist, neurologist, ENT, gastroenterologist, and an allergist. They state I may have mild Acid Reflux!  However, the allergist saw me when I was taking steroids to activate the other cancer medicine, and he said the tests would not be valid while on steroids.  I have been off them for two months now, and hope to have the tests done in the next week or so.  In the mean time, I have taken a slew of inhalers and cough syrups to try to minimize the coughing.  I doubt this contributes to the RLS, but felt I'd better mention it just in case.

So, again, with all that, can you help me?  I'd sure like to get rid of this, or at least get it to a point where it is much more under control.

With desperate hope,
Tom C.
Murrieta, CA

A Medical Reply

If Mirapex is working, then is no reason to change to Requip which is very similar nor do we usually combine those two drugs together.  Generally, I advise my patients to take their Mirapex 1-2 hours before bed and also 1-2 hours before times in the day when they will be having RLS problems (such as at 5-6 pm to cover your 7-8 pm RLS problems).
There is nothing obvious that I can see that may be causing worsening of your RLS (you can double check the list of drugs on our website that worsen RLS) but RLS can worsen for many reasons (such as increased stress) or often for no reason what so ever (it can be a very perplexing disease at times!).

Sent: Friday, March 19, 2004 10:29 AM
Subject: Allergy relief
I have been taking Mirapex (.125 mg) nightly for about three months now for RLS.  I have several questions: At bedtime, once in a while I don't feel any symptoms like tingling.  Should I continue to take the Mirapex anyway?  The symptoms definitely return the next night. 

How does one know if their RLS condition might be symptomatic of some other condition like Multiple Sclerosis?   Also, allergy season is here with the juniper trees doing their pollen thing.  What should I take to get relief from the hay fever I am experiencing?  You make a point to avoid Benadryl and histamine containing medications?  Is Claritin to be avoided also?

Thank you for any help you can offer,


A Medical Reply

The problem with treating RLS is that once symptoms occur they are much more difficult to relieve.  Taking a small dose of Mirapex (as you are doing) 1-2 hours before your symptoms normally occur can often prevent RLS symptoms that might need even more medication to be relieved. 
As you cannot predict which nights you will have your RLS problems, it is likely more prudent to use the medication on a preventative basis every night.  If you don't mind suffering with RLS symptoms when not taking the medication, then you can try using it on an as needed basis.
Claritin is tolerated by more than 50% of RLS sufferers, but Allegra and Clarinex are equally well tolerated and are more potent antihistamines.  A better approach is to use a steroid nasal spray (Nasonex, Flonase, Rhinocort, Nasacort, etc.) starting about 2 weeks before your allergy season starts until the end of the season.  This is very safe treatment that avoids the issue of antihistamines completely.
RLS is not usually a result of other conditions.  It may be made worsen by iron deficiency (and all RLS patients should have a serum ferritin level checked), but only very few other extremely obvious conditions such as kidney failure result in RLS problems.

Sent: Sunday, March 21, 2004 2:24 AM
Subject: RLS in arms?

I was wondering if it is possible to have RLS but in your arms??? I get the same type of feelings described on this website, only in my arms, not my legs.


Medical Reply

It can occur in your arms, but most RLS sufferers usually start with the feelings in their legs and later have it work up into their arms.

Sent: Monday, March 22, 2004 3:17 PM
Subject: There's no relief!
I am taking clonazepam but I an awake in the middle of the night kicking my legs and can't get back to sleep, also during the day my legs ache no stop have to keep moving or taking bath after bath I'm miserable.  I just go of off Percocet which gave me much relief but was taking it for another reason such as back pain. Now I'm thinking I really need to be on just to live a more normal life 

Thanks for listening to me,

A Medical Reply

If you are having problems with PLMD (leg jerks at night) then Mirapex or Requip are better drugs.  Clonazepam is a very addictive drug that can cause other problems with long term use.

Sent: Wednesday, March 24, 2004 6:24 PM
Subject: Hemochromatosis and RLS?

I have searched the web and cannot find any information regarding a connection between hemochromatosis and RSL.  Hemochromatosis is caused by
overload of iron in the blood and primarily affects people of Northern European and Celtic origin.

My question is if you know of any connection between RLS and it's prevalence in a particular ethnic group?

Thank you,
Geraldine O.

A Medical Reply

There is no known connection with hemochromatosis.  There is a connection with the opposite problem of iron deficiency.

Sent: Sunday, March 28, 2004 8:53 PM
Subject: RLS better with unwrapped bar of soap?

I have been afflicted with RLS since in my teens, nothing has seemed to give me lasting relief until the latest thing I have tried (we'll try almost anything, right)? Put an unwrapped bar of soap under your bottom sheet near where your legs lie. Last night I slept from 11PM until 6:30 this morning without a
twitch for the first time in years! I had to pass it along in the hopes that it might give another person some relief.

Lola I. S.

Sent: Thursday, April 01, 2004 10:55 AM
Subject: Grape seed extract or fish oil for RLS?
I have had RLS since I was a child, but didn't know what it was until a couple of years ago.  My symptoms are alleviated only with the use of Percocet.  Although I am also on Neurontin, 300 mg two three times a day with no relief, or very little.  Percocet 7.5 so far is the only relief I get for a couple of hours or more at a time. 
I have a friend who also has RLS and she uses grape seed extract (pill form) I tried to find it but so far have had no luck finding it.  She is going to give me a weeks supply to see if it does any good,  I will try it.  Have you ever heard of this remedy.  She also takes fish oil capsules along with it.  Her herbalist is the one who recommended this treatment.
Maryann S.

A Medical Reply

There is no known benefit from grape seed extract or fish oil.
Ask your doctor to try Mirapex or Requip which may have a better chance of relieving your RLS symptoms.

Sent: Saturday, April 03, 2004 10:18 AM
Subject: Great News for Chiropractic Treatment for RLS!!!!

Yes, for years I have struggled with RLS and found temporary relief in various forms ,only to be devastated when it no longer was effective.  I went to my chiropractor for a pinched nerve in my lower back and mentioned the RLS problem.   Well.... he considered it a challenge and after one adjustment I had a good nights sleep .

After three treatments a week for one month and walking 2 or 3 times a week. I am now free of ALL symptoms and off of the Neurontin (600mgs) , which was no longer working.    Please, pass this on to everyone and if it can help just one more person, it will make me happy.    My doctor is going to document this and send it on to whomever is interested.       

To me it's a miracle !!!!
Teresa V.

A Medical Reply

Chiropractic treatment has helped a very small minority of RLS sufferers.  There are a few who have had excellent relief from RLS symptoms with chiropractic adjustments, however most get either no benefit or do not sustain the improvement.
Let us know how well this works for you in the future.

Sent: Saturday, April 03, 2004 9:21 PM
Subject: Mirapex Keeping Me Awake?
I tried taking a low dose (1mg tablet each night) of Mirapex after my sleep study recently confirmed that I do have RLS.  However, it seemed to keep me up off and on all night!  I took it for only 2 or 3 days and then discontinued it because I already have severe insomnia that I take Ambien for. 

Is Mirapex likely to cause difficulty sleeping in some people?  Would it help to take it during the day? Also, does Neurontin help some people with RLS?

Carol F.

A Medical Reply

Mirapex is known to cause insomnia.  Strangely enough, it can cause daytime sleepiness in other patients.  Normally, patients start at a much smaller dose, .125 mg (which is 1/8 of a mg) and work up to a higher dose only if necessary.  Sleep studies do not show RLS but rather PLMD (leg jerking).  If you do have the wake symptoms of RLS (you have to be awake to feel the RLS symptoms), then you usually want to take Mirapex 1-2 hours before they occur.
Neurontin works reasonably well for RLS and PLMD and often causes increased sleepiness.

Sent: Wednesday, April 07, 2004 10:29 AM
Subject: My son with RLS in Michigan

I had written you previously about my son (Mack) and his RLS. All the Parkinson's disease drugs he had bad side effects. His doctor now has him on Xanax to help him sleep and Vicodin for the RLS. It has helped. He still has bad days.

His friends have told him that marijuana may help and I'm afraid he may try it on those bad days when the Vicodin isn't working. I don't want him to go that route. Can marijuana hurt him if he does that with the medicine he's on?

He's only doing 2 Vicodin a day and one Xanax. Wouldn't it be better if he tried 2-3 Vicodin with one Xanax per day, in hopes of getting this under control?  He knows these do help.

Please help,
Donna N.

A Medical Reply

Vicodin at 2 tablets per day is a relatively safe dose.  With higher doses the risk of addiction/tolerance increases significantly.  Xanax also can be an addictive drug if taken daily.  Drug holidays may be helpful to avoid addiction/tolerance or changing to a non-addicting sleeping pill such as Ambien may be another alternative.
Marijuana (from reports that I have received from RLS sufferers who have tried it) is a very potent treatment for RLS.  Most find that 1-3 puffs will resolve their RLS symptoms within seconds or minutes.  The drug is however, illegal and smoking it has other health risks.
There are other options such using Ultram (tramadol, a non-narcotic pain killer) instead of Vicodin or to alternate with Vicodin (he can alternate every 3-4 days).  Neurontin (an anti-seizure drug) is another choice for RLS and is not addicting.

Sent: Friday, April 09, 2004 8:53 PM
Subject: Restless Legs bothering my husband?
I don't have any pain or anything like that associated with this problem, except that it seems to constantly wake my husband.  I can remember my mother telling me when I was a child to keep my feet still, and even now, I seem to move them a lot, mostly unconsciously.  But it has not been a problem until recently and my husband is really complaining about it. 

I seldom drink alcohol and have about 3 cups of coffee a day and very little soda or tea.  Do you have any suggestions?  I haven't spoken with my doctor about it as I didn't really consider to be a problem until just recently.  He keeps waking me up and telling me what's going on with my feet.  I'm 49 years old. 

Thanks for any advice you can provide,
Melanie C.

A Medical Reply

It sounds like you may have PLMD.  If you are well rested during the day then it is not bothering you and you need no treatment.
As far as helping your husband, the simplest and safest (no medications!) way to resolve your (actually his) problem is to get twin beds and move them apart by a couple of inches when going to sleep.   This should keep your kicking legs away from your husband.

Sent: Monday, April 12, 2004 3:05 PM
Subject: Anticonvulsant medications and RLS?

I recently discovered that I suffer from RLS.  I am a 69 year old male.  My doctor prescribed hydrocodone (5/500 mg) at bed time initially, which helps some but not enough.

I understand that Neurontin, an anticonvulsant, is quite popular in treating the symptoms of RLS.  I am somewhat surprised that Topamax (topiramate) is not mentioned here among the anticonvulsants.  I heard some anecdotal stories where one 25 mg tablet a night of Topamax helped a RLS patient considerably.

I would appreciate your comment,
Frank J. H.

A Medical Reply

Most of the newer anticonvulsant medications have had some anecdotal success with RLS.  Neurontin is the oldest (of the newer ones) and has been used and studied the most extensively which is why it gets most of the press in RLS publications. 
Most RLS specialists will use the anticonvulsant of their choice or switch around until they find the one that works most effectively for any individual patient with the least amount of side effects (commonly, daytime sleepiness with most of them).
Requip or Mirapex are currently the most effective RLS medications and are generally used before narcotics or anticonvulsant medications by most (by not all) RLS specialists.

Sent: Wednesday, April 14, 2004 7:41 PM
Subject: Neurontin Causing Insomnia??
I have tried 100 mg. to 300 mg. of Neurontin at night to help with my RLS.  I know anything is possible....but have you heard others say that Neurontin worsens insomnia?  I have had a terrible time sleeping since I started it even in combination with Ambien. 

Do you think taking Ambien and a low dose (.125mg.) of Mirapex together is something else that may be worth a try?

Thanks for your help,


A Medical Reply

As you have stated, the commonest side effect and problem with Neurontin (which often limits its use) is sleepiness.  But everyone is different so if you are experiencing insomnia then your body clearly responds differently.
Most (but not all) RLS specialists prefer Mirapex over Neurontin and it usually works well with Ambien.

Sent: Friday, April 16, 2004 8:26 PM
Subject: RLS not responding to Mirapex?
I live in a rural part of North Carolina and had trouble finding a physician who knew about RLS. Once I did, we tried Klonopin (clonazepam) to no avail. We tried Mirapex beginning at 0.25 mg once at night in mid 2001 and have increased dosage to 6.0 mg at night. This is above the recommended max so I have asked to begin a different therapy.

At this point my physician seemed unsure of what to do. He chose to begin backing down the Mirapex and beginning with pergolide at 0.25. I know it has been only a couple of days but this doesn't seem to be working. 

Any suggestions on what to follow a long use of Mirapex with . The pain an lack of sleep is again almost unbearable.


A Medical Reply

It is unlikely that dopamine agonists (Mirapex, Requip or pergolide) will help you at this point.  Other drugs to consider would be Neurontin and pain killers.
For moderate to severe RLS, pain killers such as narcotics (Vicodin, methadone) or Ultram (the only non-narcotic pain killer) are usually very effective and can give needed relief of symptoms.  Neurontin may be helpful to keep the dose of the pain killers lower, if it does not cause unwanted side effects (usually daytime sleepiness).  If managed correctly, the pain killers can be both effective and safe.
You might even consider (sometime in the future) adding Requip to your regimen to see if a smaller dose may also decrease the need for pain killer medication.

Sent: Sunday, April 18, 2004 4:04 PM
Subject: newly diagnosed with RLS

I have just recently been diagnosed with RLS.  I have had cramping in my legs as long as I can remember, but I have never had this "crawling" sensation until about 1month ago.  It started first just at night, but now I get that sensation even when sitting during the day.  Only when I stand or walk does it go away.  A month  before that I was experiencing nightly cramps.

 Upon diagnosis, my doctor  prescribed Sinemet.  I took it thinking everything would be OK, only to have the worst night yet.  The crawling sensation went away for about 1/2 hour and then came right back only worse than before.  I tried taking a second one to see if it would do any good, but the same thing occurred.  I was also feeling wide awake the whole night. 

I have never had a problem with insomnia, so this whole experience is completely new and very disturbing.  I am constantly trying to convince myself that nothing "bigger" is going on here - that it is, in fact , RLS. 

My question to you is, is it worth it to try Mirapex?  Or will I most likely experience the same thing?  Also, is it pretty common for RLS to come on so quickly and get so much worse so fast?  
South Pasadena, California

A Medical Reply

RLS usually gets worse over years but can come on suddenly (usually after some trauma, new medication or new medical condition).  Your reaction to Sinemet is somewhat unusual as it takes weeks or months to get problems with Sinemet (we don't recommend using this medication).
Mirapex is somewhat different than Sinemet but they both work through the body's dopamine system, so it is possible that it might cause problems.  It still may be worth trying Mirapex.

Sent: Monday, April 19, 2004 6:18 AM
Subject: Q Vel for RLS?

I have suffered with RLS for over 30 years and it seems to be getting worse. Some years ago, I took an over the counter drug called Q Vel which helped instantly for RLS. I purchased it at Rite Aid. I cannot find this drug any longer nor do I have an empty bottle so that I could see what drug company manufactured them. Did you ever hear of this drug or know anything about it. It would certainly help all RLS sufferers tremendously. I am desperate to find out where to get this medication or who manufactured it.

Lois B.

A Medical Reply

Q Vel is quinine. This helps an extremely small minority of RLS sufferers so is generally not recommended for this disorder.  It is a good treatment for leg cramps (which is why it is given very often as initial treatment for RLS and as stated does not generally help).
Quinine is no longer available over the counter and must be obtained with a doctor's prescription.  It does have side effects so it should be taken under a doctor's supervision.

Sent: Tuesday, April 20, 2004 12:14 AM
Subject: RLS and disability payments?

I have had the RLS syndrome since a very young age.  Probably around 21. Now I am 42.  Last few years the pain has been very excruciating and I am unable to sleep.  I do not get to sleep more than 3 to 4 hours.  My work is impacted severely and I am unable to balance my daily routine and relationships with family and friends.  I have been on almost all the medicines and right now take Prozac 20mg a day.  I am unable to take up any projects as I am a business consultant.  I am just physically exhausted and mentally drained.

I am tired and exhausted and I would like to seek your advice.  I have disability insurance.  Should I go ahead and file for disability insurance claim.  Are there any who have done so and what are the chances. Is RLS considered a reason for applying for disability.

Please advice and I will greatly appreciate it.
God Bless you.

A Medical Reply

RLS may not be listed amongst the diseases that cause disability but any disease that prevents you from working would qualify you for disability.  It may be more difficult as most disability programs and examiners will not be familiar with RLS but with persistence, you should be able to prevail.
The other side of this problem is that the vast majority of RLS sufferers should be able to get relief and be able to work.  You may have to see a doctor who has more expertise in RLS to get help.  Even though you have been on most RLS medications, sometimes it takes different doses and combinations of medications taken together to get relief. 
Don't give up yet!

Sent: Tuesday, April 20, 2004 2:06 PM
Subject: Diagnosing RLS in infants?
I am concerned about my 10 month old daughter.  How early can RLS present signs and symptoms?  My daughter constantly tightens her legs and buttocks and sleeps for only short periods at a time.  She is jumpy and restless all night and day long.  We are taking her for a sleep study on 04/30/04. 

Do you think she could be showing signs of this syndrome at such a young age?

Thank you,
Liane W.

A Medical Reply

It is very difficult (to impossible) to determine a diagnosis of RLS at that early age.  It is possible to diagnose RLS once the child can articulate well enough to describe the symptoms that are causing the movements.
There are no tests to diagnose RLS.  It is done from the clinical story so verbal communication is essential.  Also, there are no good medical studies to show us how RLS manifests in very young children.

Sent: Tuesday, April 20, 2004 10:51 PM
Subject: Iron and blood and RLS?

I give blood about 4 times a year.  Could the lack of iron replacement cause RLS.  I eat quite a bit of red meat so I feel I get enough. Another thing I noticed is that when it rains I sleep more soundly.

Maybe we should all move up to Seattle...

A Medical Reply

RLS patients as a rule (always exceptions) should not give blood.  The best way to monitor how critical this is would be to check your serum ferritin levels as this is the most sensitive test for iron stores.

Sent: Wednesday, April 21, 2004 4:35 PM
Subject: Addicted to Ultram and how to get off?
I have had RLS for many years, and have had luck with Ultram.  However, I wanted to try getting off of it for awhile, as with most drugs it isn't working as well now.
I was off of it for about 36 hours, and I honestly believe I was having withdrawal symptoms.  I had a horrible episode of RLS last night, couldn't sleep at all and naturally I tried a sleeping pill, which appeared to make everything worse.  So in order to avoid another "night of madness" I took 2 Ultram and within an hour, the sweats stopped, and I could feel the RLS leveling off. (Even had diarrhea).  

It scares me to think that I can be addicted to that stuff.  Is there a safe way to come off of Ultram, and not be beset with horrendous RLS...I have been placed on Lithium by a neurologist but that did not work.  I have never had such severe symptoms when coming off of narcotic like hydrocodone, which I no longer take for the same fear of becoming addicted or having it not work when I really need it for pain. 

So right now all I am taking is Ultram and Bextra.  I take about 4 to 6 Ultram per day, and have been taking it for about a year.  Would welcome a suggestion.  My neurologist really just isn't responsive to RLS and I am finding another doctor, but meanwhile....I had RLS bad enough last night, I really think a person could commit suicide over it.

Joan S.

A Medical Reply

First of all, lithium has no role in treating RLS and indicates that the doctor has little expertise with this disorder.  You should definitely see a physician with more experience and interest in treating RLS.
Ultram has a very low addictive potential but cases have been reported (none that I know of yet with RLS).  After taking 4-6 per day, it is possible that addiction and withdrawal may have occurred, but I am not sure that is what happened to you.  It is more likely that stopping the Ultram (without replacing it with another medication to control RLS) just sent your RLS into hyperdrive and all the other physical complaints were as a result of the acute severe RLS.
Most often, when addiction occurs, tolerance to the drug occurs with it.  This would mean that you would have been increasing the dose of Ultram to get the same effect on your RLS.  As you do not indicate that this is what happened, addiction is much less likely.
Mirapex and Requip (both Parkinson's disease drugs) are generally considered the first drugs to use for significant RLS and the pain killer drugs like Ultram or narcotics should be reserved for when these drugs are not working well.  Using the pain killer drugs on an as needed basis (when there are breakthrough episodes of RLS not controlled by Mirapex or Requip) will generally eliminate any concern about addiction.

Sent: Wednesday, April 21, 2004 7:57 PM
Subject: An RLS sufferer on Requip.

I am a 53 year old women, thru a sleep study found out that I have PLM's (PLM index 64.5/hr.).  I was lucky to get 2 - 3 hours, not consecutive, a night.   My sleep doctor had prescribed  Sinemet (Carbidopa/LevoDopa) 1 to 2 tabs 1 hour before bedtime.  This helped for about 4 months, not walking up as much but soon I was back to the same awakenings.

 I returned to the doctor, he took me off of Sinemet and prescribed Requip, .25 mg, 1 hour before bedtime.  It seems to help a little but I still wake up 2 to 3 times in the night.  Sometimes my legs are painful and other times not.  But when I wake up my mind  doesn't want to go to sleep and I have a hard time falling asleep again.  I have increased the dosage to 2 Requip (.5 mg) 1 hour before bedtime, it doesn't seem to make a difference.

I wanted to know how much can I increase the dosage of Requip,  your website medical information states .25 to 1.5 mg per day.  Can I slowly increase before bedtime 1.5 mg. or would there be side effects. 

I also find when I take  2 tabs of Acetaminophen, extra strength, it helps me sleep better. Or can you suggest a sleeping pill that isn't addictive that I could take to sleep thru the night but not make you tried in the morning, as I need to get up for work in the morning.

I would like to thank you for this informative website and to people who have written in and shared there stories.

Pickering, Ontario, Canada

A Medical Reply

If it is not the PLMD or pain in your legs that mostly keep you up at night, then increasing the Requip will not help.  In fact, Requip can cause insomnia so it may be part of the problem.
In the USA we have Ambien which has yet not shown to be addictive.  In Canada, you have Imovane which may have less (if any) addictive potential.  You can use one of the more common benzodiazepine pills for sleeping (the shorter acting ones are better so that you do not have sleepiness the next day) and they are safe if you take them on an intermittent basis (every other day or take frequent drug holidays).

Sent: Thursday, April 22, 2004 11:03 PM
Subject: Carafate and Mirapex

I take 1.25 mg of Mirapex  and 2 mg. of Ativan at HS for my RLS.  RLS is diagnosed as "severe". I have developed significant reflux disease.  They prescribed Protonix for the reflux with no ill side effects.  Now they added Carafate 1 tablespoon 4x a day.  After only being on it one day and shortly after the 4th dose I noticed a resurgence of my RLS symptoms. 

Everyone, gastroenterologist, pharmacist and sleep physician tell me it won't interfere with the absorption of my meds.  I took the Carafate 2 hours prior to my Mirapex.  My question is does it affect the metabolism of my drugs for RLS?  After about 5 hours the symptoms abated to just a tingling in the lower legs.


A Medical Reply

Carafate is a drug that works by coating the esophagus and stomach and thus can bind drugs before they get absorbed (it does not affect the metabolism, but prevents the drug from ever getting into the body).  Although Mirapex is not listed as one of the drugs that is affected anything is possible especially if you notice a change since taking carafate.
You can try taking Mirapex with and without carafate and if you can reproduce your problem only when taking it, then you do not need any more proof that carafate is causing problems with Mirapex.  Not everyone's body follows what is written in the textbooks.

Sent: Friday, April 23, 2004 12:09 PM
Subject: Difference in narcotics?

My RLS is getting worse, Mirapex is not working as well, so sleep doc and I decided to go the narcotic route for awhile.  Working ok so far, but I notice you  recommend hydrocodone (Vicodin) in your replies.  My doc gave me Oxycodone. Is there a difference between them as related to RLS?

Also, is it time to re-evaluate the side effect profile of Mirapex?  I admit it was a life saver for me for 2 to  3 years, but i am now noticing stuff with long term use.  Between your site and others, many people have complained about weight gain,  and i also have gained about 60 pounds in time I've been on Mirapex. 

Even though it is not listed as a side effect in its profile, haven't enough people related this so that it could be accepted it may be true for good number of users?  Also, since it has been available now for around 5 years, i notice more and more  issues with Mirapex concerning breathing difficulties, skin problems, exacerbation of OCD, etc.

I am not trying to put a damper on Mirapex as it does its job and we all know  what  joy the relief of  RLS symptoms brings. I am just asking if maybe we should be more aware that it isn't as innocuous as it has been made out to be. I know PD patients take a lot higher dosage, but does that really mean anything.  They have Parkinson's and so its effect on them at higher dosages is not comparable to  other uses of Mirapex. 

What are your thoughts? Are you noticing an increase in Mirapex related symptoms?

My thanks  for a  valuable and informative site,
Steve C.

A Medical Reply

Vicodin is similar to Percodan (oxycodone) except that oxycodone is about 20-30% stronger as a narcotic which means it will work a little better (when comparing mg to mg) than Vicodin.  The other problem with oxycodone is that it is more of a controlled substance than Vicodin and in most states needs a triplicate prescription.
I have noticed some side effects with Mirapex but mostly the ones listed.  I have many patients on Mirapex (and most all the other RLS drugs) and have not noticed problems such as weight gain, breathing problems (I am also a lung specialist) or skin problems.  One has to be careful when looking at message boards and internet sites for side effects of drugs as there are many more posts by people who have had trouble which skews one's view of the drug.
Every drug has negative potentials which especially become more relevant when the drug is taken for many years.  We are still early in the learning process for drugs such as Mirapex and Requip but you can rest assured that if significant side effects are occurring they will get reported to the FDA (this is mandatory for all doctors) and then be put in the product literature.

Sent: Friday, April 23, 2004 5:42 PM
Subject: Mirapex and antidepressants?

I was just prescribed Mirapex for my RLS.  I have been taking Klonopin for the last couple of years but felt too drugged in the morning.  I also have sleep apnea and use a CPAP machine.  My real question is I want to know if it is ok to take Zoloft for my depression and Mirapex along with it.  I take 150 mg of Zoloft each day.  I was prescribed .250 Mirapex. 

I have had RLS since I was a little kid .  the only way I could sleep was to rock myself.  I find myself still doing that about twice a night so I hope Mirapex works but just am concerned about the Zoloft.

A Medical Reply

There is no interaction between Zoloft and Mirapex.  The only problem is that Zoloft usually worsens RLS (although a minority of RLS sufferers may actually get better with the drug.  If you really need the drug for anxiety/depression and you have not noticed significant worsening of your RLS then there should be no reason not to continue with Zoloft.
Mirapex often needs to be increased slowly until your RLS symptoms are relieved.

Sent: Saturday, April 24, 2004 11:50 AM
Subject: RLS & back pain?
I have been diagnosed with RLS.  One thing that concerns me is that I have a lot of back pain also.  Do you  know of any one else that has this symptom?  I bothers me  more than the RLS.

A Medical Reply

The two problems are unrelated.  As back pain is very common, many RLS patients will have both problems but that is simply the overlap of two common medical conditions.

Sent: Saturday, April 24, 2004 5:43 PM
Subject: Taking Mirapex along with Klonopin?
I took my Mirapex last night for the first time and my RLS was fine.  However, I have been taking Klonopin for about a year.  My doctor told me to stop Klonopin and start Mirapex.  I didn't sleep a wink all night, at least it didn't feel like it. 

I just was wondering if I should give it a couple of nights or is it ok to take my Klonopin along with my Mirapex.  Like I said, the Mirapex helped my RLS but I think the lack of Klonopin made my sleep bad.  Are the 2 drugs ok to take with each other.


A Medical Reply

Klonopin should generally be weaned off over a week or two.  Ambien is a good choice to use if you need some temporary help to fall asleep while getting used to being off of Klonopin.

Klonopin is a very addictive drug and should be used very carefully (if at all) for RLS.  You are better off without the drug.

Sent: Tuesday, April 27, 2004 9:51 PM
Subject: RLS worse with menstrual cycle?

I haven't had RLS in quite a while, but wanted to know if any other woman might have experienced it as I did, which was mostly around the menstrual cycle.  I also suffered miserably with migraines at the same time.  I used to take Fiorinol, but my doctor wanted me off of it after so many years (about 18 years!). 

Then a study came out of one of the Southern California universities, which made a link of taking several vitamins (potassium, magnesium,  b12, and calcium) for the migraines.  After about two months time, I stopped having the migraines around the menstrual cycle (or much lighter ones) and I have stopped my RLS.  Of course, my cycle brought with it a deep craving for carbs, cheese, chocolate and caffeine, which according to what I have read, may have been the trigger for RLS. 

What do you think?

A Medical Reply

RLS getting worse with menses is not unusual.  Getting better with vitamins and minerals is more unusual.  Not enough is known about the cause of RLS so it is difficult to explain why the hormones at menses would worsen RLS and why it got better with your treatment.

Sent: Wednesday, April 28, 2004 10:31 AM
Subject: RLS worse with hot weather?

I have been taking Mirapex for about 4 years now and have had to increase my dosage about 4 different times which has caused me great anxiety. One of the things I have noticed is that when we go on holidays to a hot climate (usually go in the spring) my RLS worsens and I have to increase the dosage.

Could you please tell me what you know about weather triggers and if I could go back to my previous dosage in the fall when the climate changes to a more temperate climate.

Thank you for your time

A Medical Reply

Weather seems to affect certain RLS sufferers.  Some are worse in the summer and others in the winter.  It is very difficult to figure this out or why there would be any association at all.

Sent: Thursday, April 29, 2004 11:23 AM
Subject: PLMD and Vitamin E?
I am a 61 year old woman  and my doctor has told me I have PLMD. This was discovered in a sleep apnea test and the doctor says in this test my legs move 54 time in one hour. I have been extremely tired for 3 years and wake up many times a night and never feel rested. I have been to many doctors and was told by the last doctor to try the sleep apnea test. The doctor first set me up on a sleep apnea machine which I have used for 3 month with no improvement.

He now has told me that I should take a large dose of vitamin E which may help the PLMD. He said to take 800 iu of vitamin E a day for one week then got to 1600 iu per day for a month then return for an evaluation. He also said that if this doesn't work there are other drugs that can be used.

My question is does vitamin E actually help and if so what is the probability of it helping me or anyone else? Also are the other drugs he mentioned dangerous? I was concerned when he told me that you can use a drug that is currently used for Parkinson.

Thank you in advance,
Linda ( very tired) 

A Medical Reply

Vitamin E has absolutely no role in RLS/PLMD.  There are no reports in the medical literature concerning that connection (showing that it does or does not help RLS).  I have not even heard of any anecdotal reports of Vitamin E and RLS/PLMD.  Therefore, I have no idea why your doctor chose to advise you to take Vitamin E for PLMD or what dose should be used.
The Parkinson's disease drugs (Mirapex or Requip) are indeed the best drugs for RLS/PLMD.  As with most drugs there are some possible side effects, but most do very well with these drugs.  It is certainly worth trying these drugs for their effectiveness in RLS compared with the small chance of adverse effects.
You can bring your doctor the section from our website on how to use these drugs so that he can properly prescribe them for you.

Sent: Friday, April 30, 2004 1:02 AM
Subject: RLS in Australia?
I live in Australia where some drugs are not available. I have had RLS for many years. I took Sinemet from 1996 until last Christmas but the augmentation had become a problem. I had reached 300 mg/day dose. I switched to Permax which gave me great sleep but I quickly developed what is probably an allergic reaction. It started with a severe stuffy nose (I am prone to this) but also there was an eye irritation which got very bad, forcing me to stop the Permax and go back to Sinemet which is just not good enough anymore. Even half a tablet of Permax to assist the Sinemet caused the allergic reaction again.

Requip and Mirapex are not marketed in Australia otherwise I would try Mirapex, although it is likely to cause a severe stuffy nose too.

I obtained a trial pack of Neurontin from my doctor but even at 900 mg it did not stop the RLS.  My doctor is helpful but knows very little about RLS. We do not have many doctors here who understand it.

Would you like to suggest the other medications that I should try next?

Richard L., age 66 years ,
Sydney Australia.

A Medical Reply

There are other dopamine drugs such as Parlodel which may be helpful for RLS if Mirapex and Requip are not available.  If the dopamine drugs available do not help you then alternating a narcotic (such as Vicodin) with Ultram may be very helpful.

Sent: Sunday, May 02, 2004 4:21 PM
Subject: RLS worse with cholesterol or hormone medications?

I have written to you in the past and would like to seek further advice (you were very helpful the last time that I wrote).

I am presently taking Mirapex for my restless legs (1 mg. at bedtime in conjunction with Neurontin (1500 mg.). 

A couple of months ago I noticed that I was itching terribly, especially at bedtime.  I saw my neurologist, and he wasn't really sure what could cause the itching, but said that it had to be something that changed within the last couple of months.  I got to thinking about all of the meds that I am taking, and the only thing that had changed was that I went from the estrogen-progesterone CombiPatch to FemHrt. In addition, I take Lipitor, and I am aware that it can cause liver problems.  (In the past, my liver enzymes have been very slightly elevated).

I spoke with my family physician and was allowed to temporarily halt the Lipitor. I also returned to the CombiPatch.  Within one day, I noticed a significant decrease in my restless legs.  Whereas I used to have to take Mirapex at about 3 p.m., and then again at bedtime, being off Lipitor and FemHrt, allowed me to take only 10 mg. at 7 or 8 pm.

Today, I began a new statin called Zetia (10 mg.).  Within eight hours, I have noticed a significant increase in the restlessness of my legs.  I don't think that I'm allergic--at least I haven't started itching, but is there any link between statins and RLS?  I would rather not take any drugs for my high cholesterol, and have peace with my legs!!  Do you know if there are any statins that don't exacerbate RLS? I know that drugs like Reglan make RLS worse--what is with these drugs?

Nancy L. C., M.A.Van Helsing

I have never heard of statins (like Lipitor) causing or worsening RLS and Zetia is a completely different class of cholesterol drug not in any way chemically similar to the statin drugs.  Of course, anything is possible.  I would have guessed that the female hormones would have been the more likely cause as hormones are sometimes implicated in worsening RLS.
It could also be that something else entirely is the cause of your RLS worsening and may not even be linked to the itching problem.

Sent: Monday, May 03, 2004 3:32 AM
Subject: Depression and RLS?

I am 54 years old and I've had RLS for 15 years. I've tried almost every medication which I've read in the e-mails. Either I couldn't tolerate them, they quit working after some time, or they just didn't work. I have been to four different neurologists and I've been to the sleep clinic and recently, had an EMG. I get 1-2 nights of sleep a week and then I'm awake the rest of the time. I used to be able to nap during the daytime but now I have the RLS during the day also. I have the RLS in both legs and both arms, at different times.

I feel like I have no life of my own anymore. It has worsened since January and these have been long months, with it getting worse all the time. I don't think my doctor understands the severity of it and I don't know how else to explain it.

I am on disability for chronic depression and I worry that this is affecting my depression. I try to keep a good attitude but suicidal thoughts have entered my mind. I'm also a "cutter" (self-abuse) and I often wonder if that would take away the RLS at least temporarily. I hope to reach my doctor today. I am desperate.

Does depression effect the severity of the RLS? I'm also on Zyprexa for psychotic episodes. My psychiatrist thinks that may be effecting it but she doesn't want to take me off of it yet. Is there any connection? Please help me.

Thanks for listening,

A Medical Reply

Depression does not usually affect RLS, but many of the antidepressant medications may worsen RLS.  Zyprexa does negatively affect the dopamine receptors, so it certainly may worsen RLS.  Only a trial off the drug to see if your RLS improves (with your physicians approval, of course) would be able to confirm its affect on you.

Sent: Monday, May 03, 2004 8:23 AM
Subject: HELP!! Doctors are not helping my RLS problems!
I have had it! I cannot sleep at night. My feet and legs go crazy! This is the most aggravating feeling, and it always happens at night. I feel like I have live wires running through my legs. I am taking lorazepam 1 milligram. and it is not helping. So, I take night-time cold medicine. Ibuprophren and any thing else I can get my hands on. I do not sleep well anyways.

Now it is worse. I found your web-site on RLS and found my self laughing about some of the stories people told. Because, not that the feelings in your legs are funny, nor that you can't sleep. But, that, it was exactly what I was going thru. My doctor won't prescribe much of anything for me. I had a car wreck in 1987 and had a broken right hip, now has 3 pins in it, a fractured left hip, a fractured pelvis and severe whiplash. I have sciatic nerve damage. A lot of pain there. He will not prescribe anything for this.

So, how do I get him to believe me about RLS??? I am at my wits end here. Not sleeping, being nervous all the time, makes one want to get out of this world. Like I said I have had it trying to make my doctor understand me. He is a Chinese man and I can barely understand him, much less he understanding me. He knows I have carpel tunnel syndrome too and whip lash. He said whiplash heals???? and he has done nothing for the carpel tunnel and now I have this jumpy legs. It is slowly but surely driving me crazy.

Can you help me or offer me any advise as to what or whom I should go to or get? Please help me.

Sincerely; Wanda G.

A Medical Reply

If you cannot communicate with your doctor for any reason, then you have the wrong doctor and should change immediately.  You can either find another primary care doctor who is willing to treat both your chronic pain problems and RLS or you can have him send you to various specialists who have more expertise.
A sleep specialist or neurologist (second best) can usually treat RLS.  A neurologist may be helpful for sciatic and carpal nerve problems, but a pain specialist (there are many of these around now) can be very effective.
You should not give up until you have gotten help from specialists who understand your problems and can communicate well with you.

Sent: Tuesday, May 04, 2004 10:40 AM
Subject: Question about Agent orange

I have read articles that RLS is a nerve problem and have also read that Agent Orange has been know to cause nerve problem.  Do you have any information on this subject or an option on this subject.  I am a 63 year old male and have been found to have osteoporosis in the spine. 

I have tried Fosamax 70 and Actonel 35 both with calcium and Vitamin D. Both the meds. causes problem with the Neurontin that I take for my RLS. It just stops working.  Any information on this problem. 

Thanks for any information,

A Medical Reply

Agent Orange is very poorly understood as to what it does and why only some people seem to have problems.  RLS is also very poorly understood as to its cause and mechanism.  There is no literature available linking the two problems although there certainly could be a connection.  I have not yet heard of any anecdotal reports which would link the two diseases.
There is no known interaction between Actonel or calcium and Neurontin so I cannot explain your observation that the Neurontin does not work when taking them.  If that is truly the case, the maybe a change to Mirapex or Requip would be beneficial.

Sent: Wednesday, May 05, 2004 2:12 AM
Subject: Methadone for RLS?
I may be starting methadone in the near future.  I was curious why you recommend it so highly over other opiates for someone that has no other options. What is it about  methadone  that makes you say it is a better drug for RLS. 

Mary P.

A Medical Reply

Methadone is one of the most potent narcotics for treating RLS and it lasts often over 8 hours which is much longer than most other narcotics.  I do reserve it for severe RLS as less potent drugs may then suffice.

A Reply From Mary P.

Sent: Friday, May 07, 2004 9:32 AM
Subject: Pain medications and RLS?
I'm having yet more trouble with my pain meds controlling my 24/7 day and night RLS.  I wrote a while back that I was on 4- 50mg Ultram a day alternating twice a month with Vicodin. I was starting to have some trouble with break through RLS on my Ultram and it took 50mg of Vicodin to control it on my drug holidays.  I had my ferritin level checked and it was 89. 

My doctor told me I could try taking more iron which I did and after about 3 months my Ultram was working wonderful again and I was down to 30 mg of Vicodin on my drug holidays. I would take 100 mg Ultram at 7:30 in the morning and it would work just fine until my second dose at 2:15 in the afternoon.

About 2 weeks ago, I started experiencing some breakthrough RLS at times and now I am fairly uncomfortable by 11:30 AM.  I just did my drug holiday this past weekend and I was up to 40mg of Vicodin to control it. I don't know what happened when I had experienced such and improvement. 

What do you think is going on and  any suggestions.  Thanks very much.  
Mary P. 

A Medical Reply

First, once your ferritin level is above 45, taking more iron should not help your RLS.  I can't say why you may have noted some improvement while taking more iron, it may have been coincidental.

It is difficult to say why your RLS is not responding to your medications right now.  It may be that the RLS is just getting worse on its own for no good reason (it gets worse as you get older and sometimes does this suddenly) or something that you are taking or doing may be causing the problem. 
It could also be that you are getting somewhat tolerant to the pain medications although this is much less likely with the drug holidays that you have been taking.   Also, drug holidays only seem to work if you completely avoid the drug.

Sent: Friday, May 07, 2004 11:38 AM
Subject: New to RLS

Am enjoying exploring all the resources of this website!  Thank you for making it available! Being a new diagnosed with RLS, my physician has prescribed amitriptyline (Elavil) to treat my RLS symptoms.

However, I'm reading and finding out more negative than positive where Elavil and RLS is concerned.

I went so far as to question my physician about these findings, and he was emphatic about my remaining on the Elavil for the time being anyway saying it had been known to relieve the symptoms of RLS.  Does this seem like the best advice?  Is there a particular drug that has been found to be "most" effective in relieving RLS symptoms? 

Thank you!

A Medical Reply

Elavil (and all the older tricyclic antidepressant medications) tend to worsen RLS.  A small minority of RLS may actually get relief from this drug (under 10%) which occur in mild RLS sufferers who only have RLS at bedtime so that the sedative side effects of Elavil may put them to sleep before the worsening can be noticed.  It is generally recommend that RLS patients stay away from this drug.
I normally suggest Mirapex or Requip for mild to moderate RLS.  They are usually very effective and can be used at relatively very low doses which will result in few side effects.  The pain killers may be more effective for treating severe RLS, but we try to leave those drugs for the tougher cases not improved by Mirapex or Requip.

Sent: Sunday, May 09, 2004 4:24 PM
Subject: RLS/PLMD and Prozac?
Thank you so very, very much for your invaluable contribution to the site.  It's like a support group to those of us who do not have that option.
I have suffered RLS and PLMD (my husband times the leg jerks and the timing is so exact it is amazing).  Of course, the PLMD keeps him awake, but I do not think I have this every night, or perhaps sometimes he just sleeps deeper, and I think I can sleep through these jerks if I am already asleep when they begin.  But it does seem like every night I lie in bed and have to move my legs back and forth.  Some nights it is worse than others and I feel like I am going to jump out of my skin!  My arms jerk occasionally too.  It doesn't matter what time I get into bed, I can never go quickly to sleep and I am reading off and on throughout the nights.  Reading helps take my mind off my jumping legs.  I am retired now, and sometimes take a nap or two during the day, however sometimes I don't.
Since I can remember, I have had difficulty falling asleep, and envy those people who just go to bed and within minutes fall asleep.  I also have difficulty staying asleep but just assumed I was a "light sleeper".  Now I think RLS wakes me up.  I pace sometimes, other times I have just beat my legs with my fists.  I am not sure RLS affects me severely every evening, but more and more I notice that I start moving my legs, ankles, feet, knees, and even thighs when I sit down every evening. I have tried exercise, hot baths, vibrating massagers and hot tubs with little or no help.
I have been taking Prozac for about 4 years (I am currently 56 yrs. old) and started it for headaches that would last for 3 days, and for peri and now post menopause symptoms, but now wonder if it has made my RLS symptoms worse.  In addition to 40 mg Prozac daily,  I take 50 mg Atenolol for high blood pressure; 20 mg of Lipitor for high cholesterol and 40 mg Nexium for GERD.  I HATE taking medication, and have tried getting off Nexium and Prozac but to no avail.  My GERD took a turn for the worse, and my husband said I was impossible to live with without the Prozac - and I think I was -- or maybe it was him that was worse when I got off Prozac!  I also have osteoporosis in my hips and am beginning to suffer pain in the left hip and down the thigh (might this be sciatica, RLS, or would it more likely be from osteoporosis?) 
I was interested to read on your site about Wellbutrin, and Remeron acting differently from the original SSRI's.  Can you give me your thoughts regarding these two antidepressants and the difficulty in switching from Prozac? 
I have a prescription for Xanax (for panic attacks) but seldom take it.  I was afraid to take it to help sleep for fear of addiction.  After looking at your site, I think I should not be afraid to take it fairly regularly for sleep, though I have noticed that Xanax does not always help me go to sleep, or keep me asleep.
Again, thank you so very much for your valuable web site and for all your help.  You must be a very generous and giving soul.
Kathy Bradford

A Medical Reply

Xanax can be used more often without concerns of addiction.  Generally, if you use it on an intermittent basis (about 3-4 days per week) the chances of addiction are extremely low (probably 0).
If you did not notice worsening of your RLS/PLMD with Prozac, then I would not consider changing to Wellbutrin (if it ain't broke, don't fix it).
Osteoporosis does not cause pain but only increases your risk of fractures with falls.
You may want to consider Mirapex or Requip at bedtime.  This would likely take care of your RLS/PLMD problems and allow you to sleep without having to use Xanax.  I know you do not like adding or taking medications, but when you have medical problems this becomes a necessity.  Why suffer when there are safe and effective medications available?


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 RLS symptoms.

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


   Click to go to the RLS HomepageRLS Treatment Page