Patient letters on RLS symptoms and remedies- Page 84

Sent: Saturday, January 03, 2009 12:03 PM
Subject: RLS causing other symptoms?

I have had RLS for about 12 years. I now take 2mg clonazepam before bed, but was told to up that to 3mg yesterday my my neurologist. The reason for the trip to the neurologist was that I fell over one month ago, hitting the back of my head quite seriously. Since then I have been having what he describes as "post concussion syndrome." This includes fatigue, inability to concentrate, vertigo, and irritability.

About two weeks ago my face began to hurt, feel cold / hot, feel as if it were being pricked by needles, etc. This feeling began on the left and progressed to the right. It was exacerbated by any facial expression (laughter, frowning). I also began to have twitches when I sat down and difficulty holding a book, or page. My ever-present leg, foot, and torso cramping became worse, and my RLS symptoms worsened--waking me and once I was awakened not able to go back to sleep. By the time I talked myself into the neurologist's office (he said seeing me wasn't necessary), I was limping (very tired), unsteady, and desperate for help.

He asked me if I'd like to take Vicodin, to which I replied "No, thanks." He then upped my dosage of clonazepam to 3mg at bedtime and gave me a prescription of tramadol, which he told me to take liberally. He said the knock on my head had caused a flare up of RLS and that all symptoms stemmed from that, except for the facial pain which he said he could not do anything about.

When I returned home I looked up tramadol and its warnings (included was the warning to not take with head trauma), and then remembered that he had prescribed it for me last year and I had taken it only twice because it seemed to slow down my breathing--aha, I had a full prescription in the reject box of pills I keep (I know this is not a good idea). He assigned these symptoms to RLS. No one ever has done that before.

I am 64. I have had iron therapy (infusion) twice for RLS (and, hopefully, cramping). Over the past few years I unsuccessfully have chased down the causes of my various cramps and limping (especially when I'm tired), have been studied for MS, came up as inconclusive and probably not. I really don't know what to do now.

My question boils down to this: Do leg, foot, torso cramps; twitching at rest (head, hands, arms, legs); eye flashes; facial pain have any connection with RLS? Why would a doctor prescribe tramadol for such symptoms--especially along with 3 mg clonazepam? Should I just hang around for 6 months and wait for this to clear up (because of my age, as per doc)? If not, whom should I see?

Ellen I.

Medical Reply

Your muscle cramps have nothing to do with RLS. I have no idea why your doctor prescribed clonazepam and tramadol for your problems other than thinking that it may take care of RLS and leg cramps. However, most RLS specialists (myself included) do not use clonazepam for RLS as it causes fatigue, dizziness and many other symptoms (especially with its long half-life of 40 hours). Tramadol does help RLS but is not a first line drug for this disorder.

Currently, Mirapex or Requip are the first line treatments and drugs of choice for RLS. Other drugs should only be tried if these are ineffective or cause side effects. You should see a doctor who specializes in RLS or if one is not available, a neurologist who specializes in movement disorders and sees a lot of RLS cases.

Sent: Sunday, January 04, 2009 10:56 AM
Subject: Augmentation?

I am so confused. I have had RLS for probably 30 or so years. Now that I am 72 the RLS has gotten worse. I have been to many doctors, tried all sorts of meds. Recently I was sent to a young neurologist, he put me on Mirapex, .25 mg., at first just at 9pm. Right away I started having symptoms early in the evening. He told me take one at 11 am. I have been fine since. Sleep well. Once in a while I get symptoms but never last long.

I check in on RLS.org; WeMove, and this site often. I read so much about how horrible augmentation is and that Mirapex, Requip and Sinemet are the worst offenders. I know that people with RLS all respond differently to different meds., The last time I went to my new neurologist., I ask him about augmentation, and his response was, "what's that". So I explained it to him. At least he was honest, he said, "People with RLS know more about the syndrome than I do.". I feel because of reading all the posts about Mirapex etc. that there is something terrible around the corner for me.

But as of now I am sleeping better and no RLS symptoms than I have in years. I would like to hear your thoughts on this. Also I just finished reading Dr. B's book on RLS and it is great. A guidebook for sufferers of RLS.

Betty B.

Medical Reply

Mirapex should be started at .125 mg (not .25 mg) and increased only if this lower dose does not work adequately. It does sound as if you developed augmentation from the Mirapex .25 mg (which may not have occurred with the lower .125 mg dose). However, it is not clear why taking an additional dose at 11 am should clear up this problem (as the 11 am dose should wear off by about the early evening).

Typically, to treat earlier onset RLS, we recommend taking the Mirapex earlier in the evening. If this does not work, we would then recommend taking 2 doses (one about 1-2 hours before the onset of the earlier symptoms and another at your usual 9 pm time) by splitting the original dose (that would be 2 doses of .125 mg) before increasing the dose as did your doctor.

At this point, I would probably recommend doing nothing different as you are doing well. If you do develop worsening augmentation (hopefully that will not occur), then getting off the Mirapex for a few weeks (that has to be done carefully) then restarting Mirapex at a lower dose or changing to Requip might be helpful.

A Reply from Betty B.

Sent: Tuesday, January 13, 2009 12:20 PM
Subject: Re: Mirapex-augmentation

I have been reading the horror stories on the RLS.org site about people augmenting on Mirapex, and it scares me. I have been on Mirapex since August, it worked great for the first 30 days then I started having symptoms early evening. I was taking .25 mg. at 9 pm, when I called the doctor he put me on one .25 mg. at 11 am and one at 9 pm.

When I emailed you before you said since it is working leave it the way it is, but the doctor should have started me on .125 mg. I am getting more frightened the more research I do. I'm wondering if it would be better to ask the doctor to wean me off of it now before things get worse.

And maybe put me on an opioid. Or to cut down on the dosage of Mirapex. I am very confused. Sometimes I believe a little knowledge is dangerous. What would happen if I cut down the dosage?

Betty B.,
West Virginia

Medical Reply

It does sound as if you are developing some mild augmentation. However, mild augmentation is not always a real problem and can be taken care of by taking your dose of Mirapex earlier (1-2 hours before the new earlier onset of your RLS symptoms). You can lower your Mirapex dose to .125 mg (you will know very quickly if this is an adequate dose) but you might have to add an additional dose before bedtime to carry you through the night.

I would not rush to change to an opioid at this point. If you do develop more severe augmentation, it then very simple to discontinue Mirapex and start an opioid. Within a week or 2, your RLS symptoms will be back at baseline (where you were before your started any Mirapex). So, as you can see, augmentation is really not as bad as it sounds (as long as you know how to treat it as detailed above) and can be easily managed.

A Reply from Betty B.

Sent: Thursday, January 15, 2009 6:56 PM
Subject: re: augmentation

In a recent email you said , that if you develop worsening augmentation getting off the Mirapex for a few weeks and that "has to be done carefully", then restarting Mirapex at a lower dose or change to Requip. What did you mean by "that has to be done carefully".

I lowered my dose from .25mg at 11am and at 9pm to .125mg around 3pm and .125 at 9pm. Now I am having symptoms that seem to be getting worse. Should I get off the Mirapex and ask the doctor for an opioid. Or try the .25 mgs. at 3 pm and again at 9 pm and see what happens. The .25mg did help in the beginning and I decided to lower the dose, which I probably shouldn't have done.

My doctor is very new and tries to help me, but is very inexperienced with RLS. He even commented that a RLS patient usually knows more about RLS than he does.

Betty B.,
West Virginia

Medical Reply

The getting off Mirapex part is simple; just stop it cold turkey. The being careful part refers to taking opioids to control the worsening RLS symptoms which should last about 1-2 weeks (at which point your RLS should go back to baseline).

We typically use a strong opioid (oxycodone, methadone) at whatever doses relieve your RLS symptoms. This of course varies dramatically from patient to patient but doses of 5-10 mg up to 3 times per day are typical.
 

Sent: Wednesday, January 07, 2009 9:41 PM
Subject: Help for my RLS?

I am 32 years old and have been diagnosed with RLS for 3 years now, I first tried Requip and had horrible night terrors and headaches. The doctor switched me to Mirapex. We have tried different doses and was most recently on .75mg. for the last few months I have had several strange things happening.... compulsive eating , and shopping. The shopping was so bad that my family sat me down to talk about it.

I just found out that it could be the Mirapex, I talked to my doctor and he changed me back to a lower dose of Requip to try. No tapering off of the Mirapex. I know I should have but I guess I just wasn't thinking clearly but now I am having pain everywhere, it sort of feels like someone beat me with a baseball bat, not sleeping, and now a sense of doom , depression and crying spells.

Do you have any advice?? The Requip does not seem to help the RLS at all and it gives me a horrible headache and hangover feeling.

Carissa , LPN

Medical Reply

It sounds as if the dopamine agonists (Mirapex and Requip) are not for you. Discuss changing to an opioid (oxycodone, methadone, Ultram, etc.) and/or an anticonvulsant (Neurontin, Lyrica). One or both of those medications should do the trick.

Sent: Thursday, January 08, 2009 10:52 AM
Subject: RLS & Muscle Pain

I have had RLS and PLMS for many years. Medications have included clonazepam at bedtime, and it has definitely helped so that I sleep through the night. Requip and Mirapex seemed to have no effect on me either way.

1. I have extreme burning pain in my legs, most noticeably whenever I sit for periods of time or when I go to bed. I am compelled to massage the muscle, which makes it even more painful but I can’t seem to control this. It is very severe pain, like a knife stabbing into it. I am taking Vicodin for the pain, and sometimes Darvon when I need to be more careful (driving, etc.). Nothing takes the pain away entirely; it just makes it bearable at best.

2. I recently went through another sleep study which confirmed the diagnosis, but was also told that I never reached the REM stage of sleeping. The doctor at the center said that there were no known amounts or REM that people require. Is that correct? I have always thought that this was the most important part of sleep.

Ruth A.
Rochester, NY

Medical Reply

Although many people with RLS use clonazepam for their problems, it is not one of the medications on my recommended list. It has a long half-life of 40 hours (the time it takes for the body to remove half of the drug) and can cause next day sedation (even when you are not aware of not feeling fully alert). We recommend shorter acting sleeping pills like Lunesta or Ambien which are much safer.

Your burning pain sounds like a neuropathy type of pain. You should discuss starting a drug like Neurontin or Lyrica which may help both the pain and RLS/PLMS.

Although it is thought that we all should get about 15-25% of our sleep in REM stage, very few people achieve this when monitored in a sleep lab. It is quite common to see REM sleep at 3-5% or less of sleep time in sleep lab patients. So, don't worry too much about that issue. You may very well be getting much more REM sleep at home.

Sent: Monday, January 12, 2009 8:32 PM
Subject: problems with methyldopa

My doctor changed one of my blood pressure meds from clonidine to Aldomet. As soon as I began taking the full 1000 mg per day (divided in four doses), my restless legs became awful. I am still taking Mirapex. I'm going to have to tell my doctor that I can't continue on the Aldomet. Is this common? I looked up the side effects of Aldomet and there was no mention of exacerbation of RLS.

Margaret T.

Medical Reply

Aldomet is a very old drug that is not used much these days as it tends to cause side effects (like dizziness), must be taken 3 times per day and does not work as well as newer blood pressure pills. As such, we do not have much experience with Aldomet and RLS patients but there is no known worsening of RLS with this drug (until your current report).

A Reply from Margaret T.

Sent: Tuesday, January 13, 2009 7:25 AM
Subject: Re: problems with methyldopa

Last night about 8:00PM, I took the last Aldomet pill (I was trying to take it earlier to see if that would prevent the RLS). Within an hour, I had maddening RLS even though I was walking around; if I had been lying down it would have been much worse. After more than an hour of this, I took Mirapex along with two Darvocet and finally got some relief. I plan to tell the doctor that I can't take the Aldomet without going bonkers.

Margaret T.

Medical Reply

As you have already found out, opioids like Darvocet help RLS quite quickly and effectively. However, Darvocet is one of the least potent opioids and you would get much more relief with Vicodin or even small doses of oxycodone or other potent opioids.

A Reply from Margaret T.

Sent: Tuesday, January 13, 2009 7:20 PM
Subject: Re: problems with methyldopa

I'm sure you're right; however, I prefer not to use stronger ones if I can get by without them, and I don't have anything else.
I told my doctor today about my problems with Aldomet. Her response was "Well I'd like you to keep trying to take it as we're about out of options." It's almost funny how little people understand about RLS. There is no way I'm going to subject myself to that voluntarily. However, since I can take three of the four pills, or 750 mg total, without the RLS symptoms, I'm just going to do that. I will tell her, of course, but I'm sure she won't understand why I can't just grit my teeth and work through it.

It's interesting to me that it only comes on with the 4th pill. I'm wondering whether that has to do with total dose or whether it has to do with time because of circadian rhythm. I considered taking one tonight at 7:00 instead of 8:00 to see if that would matter, but I could not bring myself to do it. It's like trying to convince yourself to stick your leg into a lion's cage when you've already been bitten once. (or, actually, hundreds of times).

Margaret T.

Medical Reply

My philosophy for treating RLS is that all the symptoms should be controlled and gritting your teeth and working through your RLS should be left to a middle ages torture chamber. I understand your concerns about more potent opioids which are shared by many. However, when used properly, these drugs are both incredibly effective and safe. Most of my patients in your situation are doing great even after using a potent opioid for a decade or two.

Sent: Tuesday, January 13, 2009 10:42 AM
Subject: Medication regimen for my RLS?

Because of a technical hiccup I am uncertain if the email I sent you earlier today was actually 'sent' so please excuse me if this is a duplication.

I will soon be seeing my GP and should be grateful for your advices, as he has previously been most accommodating to your algorithm and your previous emailed responses to me.

I have RLS more or less 24/7 (I also had it 24/7 before medication.) The medication helps greatly.
My current prescribed medications are:
Ropinirole 2 mg spread over the day
codeine 30 mg
Zolpidem (Ambien) 2 x 5 mg
Omeprazole 2 x 20 mg
Simvastatin 20 mg

Symptoms are both legs and both arms, but mainly the right side and mainly the right leg.
Very often I get a burning flush down my right leg for about 5 minutes prior to the full RLS 'crawlies' setting in.

My medications are generally taken as follows:
9 am .25 mg ropinirole
1 pm .25 mg  ropinirole
6 pm .5 mg  ropinirole (and sometimes 30mg codeine) 
9 pm/10pm .5 mg  ropinirole and 30 mg codeine
12 midnight .25 mg  ropinirole and 1 zolpidem 5mg
3 am/4 am .25 mg  ropinirole (and possibly 2nd zolpidem)

This regime is for a working day (I work at a desk) and does not give full relief. On a non-working day I can delay the time I start taking the medications because I am a bit more mobile and can 'walk through' the symptoms.

If I go out to dinner/movies/long car journey I ensure that I take .5 ropinirole and 30 mg codeine beforehand.

Recently I have found that it helps if I take an extra 30 mg codeine at 6pm and then a further 30mg at bedtime or thereabouts. This is a little more codeine than has been agreed with my GP and something I need to discuss with him.

Even so, I am rarely obtaining full relief and am constantly dealing with symptoms to a greater or lesser degree.

The zolpidem 5 mg helps sleep but I do not stay asleep and therefore sometimes take a second one in the early hours.

Recently the burning sensation in my right leg has been constant. RLS symptoms are at times affecting my arms but not the burning sensation.

I should add that I have very often aches and pains across my shoulders, arms, elbows, wrists, hands, hips and feet, again the right side is most affected with the elbow and hip being the most painful. This also does not help my sleep issues. Brufen Gel would appear to help the pain somewhat.

I have been on the ropinirole 2mg for about 2 years, and about one year ago I asked my doctor to add the codeine to help with RLS symptoms without increasing the ropinirole. This is because I am concerned about having or causing augmentation. I recently had an endoscopy which showed slight inflammation in the lower stomach. Blood tests showed ESR level at 36. Two years ago my ferritin was 59.

Before I see my GP I would really appreciate your thoughts on my present medication and the hope of better RLS relief. The RLS support site which I use has talked about Tramadol, but I think has also mentioned that this could cause augmentation.

I am approaching my doctor hoping for better relief and hope he will give me 4 codeine daily instead of the currently prescribed 2 daily.

I apologize for the length of this letter which is because I wished to cover as much background as possible. Thank you for bearing with me.

Betty R.

Medical Reply

There are several suggestions that might improve your RLS situation.

Although there is no problem with taking small amounts of Requip throughout the day, it is much more convenient to take larger doses at roughly 8 hour intervals (as 8 hours is about the effective period covered by an adequate dose of this drug). Furthermore, taking somewhat higher doses of Requip may help reduce your RLS symptoms. Even though you are concerned about preventing augmentation, it is really not clear that taking lower doses actually decreases the chances of developing this problem (even though a few experts believe that this may be true). I would suggest 1 to 2 mg three times daily (you might even consider Requip XL which lasts 24 hours but may be more expensive as it is not available in a generic form).

For most RLS patients, codeine is not the best opioid for relieving symptoms. Oxycodone or methadone work much better and may provide considerably more relief and are longer acting (methadone lasts 8 or more hours). It might be harder to get your doctor to prescribe these more potent opioids but they work so much better than codeine. Tramadol (Ultram) is also a reasonable choice but it is only of medium potency (often similar to Vicodin). Augmentation has been demonstrated with this drug but it is a very uncommon event (I have see only a couple of cases).

It appears that you are having some neuropathy type pains (the burning sensations) which typically respond quite well to the anticonvulsants (Neurontin, Lyrica). These drugs are often combined with Requip and the opioids.

A Reply from Betty R.

Sent: Monday, January 19, 2009 7:37 AM
Subject: RE: medication regime

Thank you for your advice. I have put this into practice and have started to take ropinirole 1mg x 3 times daily. I feel this is working much better. I would like to try and work at whatever it takes to get as much relief as possible, so I can go to my GP and say 'I've tried this and it is working'. There was still breakthrough on the 1mg three times daily even when I tried to supplement with 30mg codeine, twice a day.

Noting that you suggest codeine isn't the most appropriate for RLS, my friend who has back pain, gave me 5 of her Tramadol 100mg Slow Release (yes, I know this is frowned upon - sorry).

So yesterday, I had my 1mg ropinirole every 8 hours, and at 4pm took a Tramadol 100mg SR (actually it was Dramadol). During the evening I realized I had the best relief ever. Just the slightest little 'feeling' hardly worth the mention. I do not ever remember a time when the symptoms were so at peace. Also, the Tramadol appears to have eased my shoulder and hip pain. I told my husband that I felt almost like a normal person. I lay in bed contentedly, no squirmy legs, no sore hips or shoulder.

Today I will take another Tramadol SR at 4pm. Is there a benefit with immediate release Tramadol, compared the slow release. Bearing in mind I have RLS 24/7. And how long does the Slow Release last, would 1 pill each day be sufficient, together with the ropinirole.

I would love to be able to tell my GP that I have found a regime that works, and hope that he will give me the prescription for Tramadol. Also, I have read that 4mg is considered the maximum dose. Does this mean 4mg daily, or up to 4mg x 3 times daily. Just so I understand.

Thank you again for your recent advices, you have definitely helped me. I hope my doctor will be open to discussing letting me have Tramadol instead of codeine.

Betty R.

Medical Reply

You are correct in saying that it is frowned upon when patients take medications from their friends without checking with their doctors. Adverse reactions or drug interactions occur frequently and can be avoided by keeping your doctor in the loop.

I do use the Tramadol ER (called Ultram ER here in the USA) for my RLS patients with symptoms 24/7. To get the same effect, you would have to take 3-4 doses of immediate release tramadol throughout the day as one Tramadol ER pill (as it lasts 24 hours as you have already found out by taking it).

Although the maximum recommended dose of ropinirole for RLS is 4 mg per day this is based on studies that used the medication only once daily. Therefore, we specialists often use the medication 3 times daily at up to 4 mg per dose.

A Reply from Betty R.

Sent: Wednesday, January 21, 2009 12:51 PM
Subject: RE: medication regime

I am sorry to trouble you again. Can you confirm to me, is it ok to take 1mg ropinirole x 3 times daily together with 100mg Tramadol Slow Release, or should it be one or the other.

I have found the ropinirole and tramadol together to work very well but don't want to take more than is acceptable.

Betty R.

Medical Reply

We do have many patients on tramadol and ropinirole together as this is actually a common combination.

However, you should check with your own doctor to make sure that he agrees with your treatment.

Sent: Wednesday, January 14, 2009 12:47 PM
Subject: Question about oxycodone and pregnancy

I was diagnosed with RLS about 6 years ago. I have been through the whole gamut of medications and oxycodone works really well for me. Before trying to conceive, I met with my OB/GYN and my sleep doctor and they both said that my current dosage of four 5 mg oxycodone per day would be fine throughout pregnancy and would not cause withdrawal for the baby. Now that I am pregnant, my OB is asking me to try to drop down to two 5 mg pills per day.

I am concerned that this will make sleeping impossible as my RLS symptoms have already gotten worse. I'm also confused as to why her opinion is different now that I am pregnant. I am planning to talk with her about this at my next appt but also wanted another opinion.

My question is twofold--is this dosage of oxycodone (four 5 mg pills per day) safe for the baby during pregnancy (physically and neurologically) and is it enough to cause the baby to suffer withdrawal after being born?

Lauren

Medical Reply

Your questions are difficult to answer accurately as there is little data or research done on this topic. Low dose oxycodone is category B for pregnant females but the exact dose is not well defined. Typically, we like to keep the dose as low as possible (which likely explains your OB's change of heart). A total of 20 mg per day is a low to moderate dose but again, this is not really well defined. An alternative choice (which I prefer) is to use methadone but most physicians do not have experience with this drug.

As long as the opioid is stopped a few days before delivery, your baby should not suffer from withdrawal problems.

Sent: Thursday, January 15, 2009 12:33 PM
Subject: Hydroxychloroquine and RLS?

I have recently been prescribed hydroxychloroquine for Raynaud's Disease. My RLS had been contained with certain drugs. However, it has suddenly become much worse. Have you heard of a relationship between this drug and RLS?

JM

Medical Reply

There is no known relationship between hydroxychloroquine (Plaquenil) and RLS. Furthermore, it is not in a class of medication that is known to worsen RLS.

Sent: Thursday, January 15, 2009 1:13 PM
Subject: aspirin therapy for PLMD

Can anyone help with recommendations to reduce PLMD? I do not have any day time symptoms, feelings or movements – but my sleep study results indicate that I jerk myself awake 15 times per hour. I would prefer not to take drugs but heard that a simple aspirin at bed time may be effective?

In need of sleep,
Scott A.

Medical Reply

Aspirin has no known benefit for PLMD. Treatment of PLMD is somewhat controversial in that it has not really been proven that the leg kicks worsen sleep enough to cause daytime problems. This does not mean that PLMD does not cause problems only that we have no medical/scientific proof of this issue.

There are no non-drug treatment of PLM. Mirapex and Requip are very effective at controlling/eliminating PLM but you should discuss this treatment with your sleep doctor.

Sent: Thursday, January 15, 2009 4:45 PM
Subject: Just started taking medication for my RLS symptoms

I have been reading through the many posts on this site and want to thank you for the insightful information. I have experienced RLS symptoms for several years but just recently began hearing about RLS and realized that this medical condition fit my problem to a tee. I met with my family physician about 2 weeks ago and discussed my RLS with him.

He immediately prescribed Requip which I began taking that night. I started at .25mg and ended up at 1mg before noticing any improvement. The Requip did seem to take care of the ‘creepy crawly’ sensation that caused me to stay awake each night however I began waking up several times throughout the night which never occurred before. The waking up multiple times throughout the night caused me to be more tired throughout the day than not taking anything at all.

I talked again with the doctor about this and he advised that I stop taking the Requip and instead prescribed Clonazepam (.5mg). I talked with the Pharmacy and they indicated that this medication did not actually treat my RLS but was meant to simply put me to sleep. They also indicated that this medication is not to be used long term and should only be taken for no longer than 6 months. Several of the other side affects concern me as well with this solution.

I have in the past taken pain medication such as Vicodin and Percocet (for a hernia surgery and kidney stones) which I noticed helped tremendously with the RLS symptoms. Is this something that I should mention to my doctor? I do not want to come across as a someone who is seeking narcotics however I am at a point where there must be some happy middle that can be reached. I can feel my RLS 24x7 but it only affects my quality of life when I try and sleep.

Rick E.

Medical Reply

Although sleepiness is the more common side effect of dopamine agonists (Requip and Mirapex), insomnia does occur. You are quite right to be concerned about taking a another drug to treat the side effects of your primary drug, especially when the drug to be used is clonazepam (Klonopin).

You might try Mirapex which may or may not work better. If this drug does not help, then an opioid (starting perhaps with Darvon) or tramadol may be a very good choice. Alternative drugs include the anticonvulsant drugs like Lyrica or Neurontin.

Sent: Monday, January 19, 2009 8:21 PM
Subject: RLS and MS?

I read your site letters and am intrigued to know if any of your readers/writers suffer from MS as well as me. I am a 46 yr old man living in Scotland (the capital of MS apparently) and was told I have RLS by my partner.

She suffers terribly as can't sleep when I'm "in motion". I looked up another site and saw some interesting facts that a group of Italian scientists had discovered: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2491510.

Have you any thoughts on how to help my RLS and possibly my MS? I have remitting relapsing MS and was diagnosed (officially as I knew there was something afoot) on March 5th 2008.

Davie P.

Medical Reply

Although RLS has been found to occur more frequently in MS patients than others, you do not have RLS. Your description is of PLMS (Periodic Limb Movement in Sleep) which consists of leg kicks occurring in groups of 4 or more during sleep.

RLS occurs only while awake as it is defined by an urge to move your legs (often associated with a creepy-crawly sensation) that occurs while at rest and gets better with movement. Unless you have those symptoms, you do not have RLS. People with RLS do have PLMS very commonly (over 85% of RLS patients have these PLMS) but most of the people (like you) who have PLMS do not have RLS (for example, PLMS are very common in people who are on antidepressant medications).

Sent: Tuesday, January 20, 2009 5:49 AM
Subject: rotating opioids RLS

I read the following in an article on pain management (for HIV patients):

Opioid rotation for chronic pain and long-term therapy

When a patient is on opiates for several months, tolerance often develops and improved pain control can be achieved by rotating to an alternate opiate – for example, going from long-acting oxycodone to long-acting morphine and then to the fentanyl patch.

My question for you is: when tolerance has developed on a (long acting) opioid and instead of upping the dose, do you think the above mentioned strategy will work for RLS patients?

Corrie A.

Medical Reply

I have not really heard much (or anything) about any advantage for rotating opioids. All the opioids act on the same opioid receptors so there should be no advantage (except when one causes side effects) for changing from one to another. At equally potent doses, I have seen no benefit from changing from one opioid to another for pain control or for RLS.

Sent: Tuesday, January 20, 2009 11:57 PM
Subject: Treatment for RLS?

I am a 23 year old male, and I believe I have a moderate case of RLS. I honestly think that I have had it for about 5 years now, but I have never gone to a doctor to get it diagnosed. My symptoms include the feeling that I wan to pull my legs (particularly my right leg) out of socket. This feeling makes me want to move my legs from side to side really fast.

I also get the urge when I am sitting down to put the ball of my foot on the floor and move my leg up and down at a rapid case. This tends to get on a lot of peoples nerves because I have been known to shake a whole room when doing this. For some reason it just makes my legs feel better.

Also I believe that this has resulted in me having Insomnia. I can stay up for hours on end, even with the lights out and I still don't feel relaxed. I think that this stems from the symptoms of the RLS. I have also found that I tend to fidget with my feet. (i.e.) putting the heel of one foot into the space between two of my toes and rubbing or moving them.

The lack of sleep is driving me nuts and I don't know what to do SOME ONE HELP!

Matthew W.

Medical Reply

The answer is very simple. Just see your doctor and ask him or her for Requip or Mirapex. That should take care of your problem.

Sent: Wednesday, January 21, 2009 11:34 AM
Subject: Tolerance with Mirapex and Requip?

I have what I assume would be classified as severe RLS. I’ve had symptoms for probably about 10 years, and have been treated with slowly increasing doses of Mirapex. Right now I take the Mirapex every 4 hours while awake, alternating doses of 0.5 mg and 0.75. I seem to build up some tolerance, and have to increase the dose every few months.

Interestingly, about 3 years ago I was diagnosed with multiple sclerosis. I was treated for a period of time with high dose steroids. I didn’t realize until I was tapering off the steroids that it had improved my RLS symptoms. As the steroids decreased, my symptoms got worse again.

Now I am having a great deal of difficulty with my RLS. We tried changing to Requip, but that didn’t seem to help as much as the Mirapex. I’m wondering if a different mechanism of action would work better. And, would I build up a tolerance to that, as well? Perhaps, alternating every 6 months or a year? I have to do something! I work at a desk job, and in the afternoons I have a really tough time concentrating on my job.

Anyone dealt with a similar situation?
Metabolic Wreck

Medical Reply

Tolerance does occur with the dopamine agonists, Mirapex and Requip although this happens only in a small minority of patients.

There are alternative drugs available. Typically the painkillers (opioids or tramadol) or anticonvulsants (Neurontin, Lyrica, etc.) can be very helpful for patients not doing well with the dopamine agonists.

A Reply from Metabolic Wreck

Sent: Thursday, January 22, 2009 6:40 AM
Subject: RE: Tolerance with Mirapex and Requip?

Thank you so much for the information. I will forward it to my neurologist, and see what he thinks I should try. He was reluctant to switch from a dopamine agonist, because he said, “we know that works for you”, except that I have to take so much I almost can’t function! I had heard that Neurontin may help, but was not aware that Lyrica could, as well.

The Wreck

Medical Reply

The opioids or tramadol often work better than Neurontin or Lyrica. Although there is a stigma about taking them, they are very safe and effective when taken correctly.

Sent: Wednesday, January 21, 2009 2:11 PM
Subject: Restless Leg Syndrome

I'm am a male, and 52 years old. I've been taking Requip for restless leg syndrome for about 3 years. The Requip originally worked great. Lately, for about the last 6 months it doesn't seem to work as well. Most recently, it doesn't work at all. Although, if I don't take it at all, I don't ever fall to sleep. Now when I take it, I toss and turn for a couple of hours before I fall to sleep.

I am not really 100% sure that what I have is RLS. I don't actually feel any pain in my legs. My symptoms are more just restlessness. Restlessness to the point of feeling claustrophobic, unless I move around. I do however get relief from just moving my legs about.

I've had problems to the point of having to stop a car and get out and walk around. I've been on airplanes where I have had to get out of my seat to move around. I've had to abort massages from the same symptoms. All the rest of my symptoms are the same as RSL. I only get them when I'm not moving. Mostly in the evening. Very often after eating. Very often while sitting on the sofa watching t.v. at the end of the day.

The claustrophobic feeling is getting worse all the time. I'm getting scared to be "cooped" up anywhere. The other day I was giving blood and almost have to get up in the middle of it. Like I said, moving my legs around often relieves it, but getting up and walking around works much better.

I'm just wondering is there any other disease / syndrome I could have? Also, I'm not very keen on taking or trying a lot of drugs. Requip is the only thing I've ever been on for anything, and I would give almost anything to not have to take it anymore.

Mervin

Medical Reply

It does sound like you have RLS as there is very little else that fits the description you have written.

As far as treatment goes, changing to Mirapex may be helpful. If not, changing to another class of medication like painkillers or anticonvulsants should work.

Sent: Thursday, January 22, 2009 11:46 AM
Subject: Mirapex and Gambling

My mom has been a victim of RLS since she was a teenager. She is now 54, and her RLS is at its worst. She has told me that she would rather cut off her legs than to have to deal with the restlessness. She has been taking Mirapex since it first came out, and is now taking as many as 4 a day. In addition, she will sometimes take pain pills at night to help her with the RLS.

In the last 2 years, she has developed a gambling problem. She had a successful career, and was always very responsible with money. She is now in extreme debt and will probably have to work the rest of her life to make up for it. She also changed her career to be an auctioneer, which I think is a way for her to gamble without feeling guilty.

She has been dumping money into slot machines on a daily basis, and purchasing large amounts of scratch off tickets when slot machines are not available to her. She lives in a state that allows slot machines in gas stations, and there are a number of these gas stations where she lives. She can spend 3-4 hours a day in a little room playing these slots, and then tells people she had to go get cigarettes, or go to the store. It is very sad that she is wasting all of her money, only to realize one day that it was the medicine that caused it all.

My mom also has other side effects, which I think is linked to the Mirapex. She is often forgetful, and can't seem to concentrate on one thing at a time. This concerns me, because I have read about Alzheimer's possibly being a side effect. My mom also has sleep apnea, and never gets more than 5 hours sleep a night. A lot of times, she will sleep two hours at night, and then take a nap during the day. She has also put on a lot of weight, and although this is not a concern for me. I'm sure its not making things easier for her.

My mom and I have a very close relationship. I have talked to her about the medicine, and she has agreed to make an appointment with her neurologist. I was only able to convince her to do this, by showing my concern in the form of tears. When asked about the gambling, she either denies it, or in a couple instances lies about it. This is something my mom has never done, is lie to me.

I am very worried about her upcoming appointment with the neurologist. I am looking for advice on what to ask of the neurologist, and how to get the message across to the doctor without offending my mom. My mom has told me that Mirapex is the only thing that works for her, and I hope that this is not the case.

Concerned Daughter

Medical Reply

Alzheimer's disease is not one of the side effects of drugs like Mirapex. However, her weight gain may have worsened her sleep apnea making her sleep even less restorative and thus decreasing her daytime function (especially cognitive functions). She may need a repeat sleep study to re-titrate her CPAP levels.

Sent: Monday, January 26, 2009 10:54 AM
Subject: Medications for RLS?

I have been on Cymbalta for about 2 years and just before Christmas I ran out and the insurance wouldn't cover cost so decided to wait until January to refill. My RLS was so much better so decided not to refill. Now I have a horrible problem with my emotions, but it didn't start until after I was off the Cymbalta for 3 weeks.

Shouldn't it have been out of my body after that amount of time? I have over the years been on all the medications that are recommended for RLS.

I have never been diagnosed with depression but could have been because of severe RLS . It has been very hard to cope.

These are the medications I am taking now:

Triazolam .25mg for sleep
Hydrocodone 2-3 daily.
omeprazole
sublingual B-12, folic acid
calcium 1200 mg daily
magnesium

Where do I go from here?
TW

Medical Reply

It typically takes about 1-4 weeks for antidepressants to kick in and to lose their clinical effect so your course is quite expected. Cymbalta typically tends to worsen RLS so you may want to consider Wellbutrin which is RLS friendly.

A Reply from TW

Sent: Sunday, February 15, 2009 12:42 PM
Subject: RLS Medications

I stopped taking Cymbalta in December. I am now off all of the antidepressants. I had been on them for years and found out they were making my RLS worse. Now I am having anxiety attacks and also RLS has started up again 24/7.  I have been reading your medications of choice .

Should I ask my doctor to prescribe Wellbutrin? I also take Neurontin and hydrocodone for pain. It seems we have to research our problem and with our doctors help, find the best way to live with RLS.

TW

Medical Reply

Wellbutrin is a great choice as it is the most RLS friendly antidepressant. However, it may not work for everyone’s depression/anxiety problems.

Sent: Monday, January 26, 2009 7:39 AM
Subject: Advice for RLS and depression?

I have had RLS for about 10 years. 6 years ago it was extremely bad, and it turned out my iron was low and supplements helped. It has come and gone since then. This past year however, it has been horrible, and it seems to have gotten a new twist: I also twitch in my sleep all night. I had back surgery about 5 years ago, and will be going for a spinal fusion in the next year. I take Zoloft 125 mg, Wellbutrin 300 mg, and Ativan 2 mg (the Ativan was what was originally prescribed for the RLS).

I had my iron checked a few weeks ago and it is ok. I do have sleep apnea (mild) but I use a CPAP machine. I am at the end of my rope, as the last week and a half has been the worst ever. What can I do? I see narcotics mentioned and I do occasionally take painkillers for my back. Is that something I should be looking at for the RLS? That scares me a bit, because of the possibility of addiction. Also, I don't know with the combo of anti-depressants I take what RLS meds would help. Could my back problems be making the RLS so bad? I have so many questions and no answers; is there any advice you could give me? Thank you.

Jandy from Canada

Medical Reply

RLS can be made worse by back pain and by the Zoloft you are taking. However, if you need the Zoloft (and do not do well on the Wellbutrin by itself) then you will have to work around it.

At this point, Requip or Mirapex are the drugs of choice for your RLS. These should be tried before going on to pain killers (which are very safe if taken appropriately under medical supervision) or anticonvulsants.

Sent: Wednesday, January 28, 2009 6:37 PM
Subject: My RLS symptoms

I believe I have a very rare form of RLS. I have intermittent stabbing-like pain in my lower right abdomen about every 20 to 30 seconds when I have RLS flare-ups. The pain is very intense. I'm taking Mirapex and it wasn't helping as of about a month ago. I thought it was losing it's effectiveness.

I'm still taking it because my doctor wants to make sure the Mirapex is ineffective. Well, I've had no RLS in the last week or so. It really Heaven on earth and I'm really cherishing every single moment. I know that eventually out of the blue the RLS monster will strike again like a ton of bricks as before. But for now, I'm enjoying my being pain-free from RLS which is quite unusual for me.

Carol Ann

Medical Reply

Just remember that there a lots of other drugs that may help your RLS when the dopamine agonists (Mirapex and Requip) do not help.

It may be helpful to get a copy of my new book on RLS (Coping with your sleepless nights).

Sent: Wednesday, January 28, 2009 8:04 PM
Subject: RLS and antibiotics

I know when I am ill my RLS gets worse. My question is concerning antibiotics and RLS. I have been taking Levaquin for an infection. My RLS seems to be worse since starting the medicine.

Do certain types of antibiotics make the RLS worse, or is it only because I am ill ?

Doug,
Wisconsin

Medical Reply

There is no known link between any antibiotics and RLS. It is most likely that you are correct in assuming that your infection is exacerbating your RLS.

Sent: Thursday, January 29, 2009 6:51 AM
Subject: RLS

I am 66 and have had RLS as long as I can remember. For the last 15 years I have been on Requip, than on Mirapex and now I am back on Requip. Both Mirapex and Requip have been very helpful. I currently take 1.5 mg of Requip at dinner time and another 1.5 mg at bedtime which has worked for years.

The dinner time dose still does fine and I have no RLS during the early evening (I do get sleepy at times). However, within the last 3-4 months the bedtime dose has stopped working. I usually take my bedtime dose about 11:00 PM and within a hour will start getting RLS symptoms . Sometimes the RLS symptoms last for 1-2 hours before I fall asleep and I usually get another bout of RLS in about 3 hrs. and have to get up and do deep knee bends and stretching to get back to sleep for another 2-3 hours.

I am wondering if I should increase my bedtime dosage of Requip or if I should switch back to Mirapex for a while or do I also need a sleeping pill.

Any advice would be appreciated as I am not sleeping much anymore.

Bob,
North Carolina

Medical Reply

Although Requip usually starts working in about an hour, it may take longer in some people. Therefore, you might benefit from taking your dose earlier (about 1-2 hours earlier). If this does not help, then speak to your doctor about increasing the dose.

Sent: Friday, January 30, 2009 11:43 PM
Subject: Requip and ferritin levels

Does Requip cause lowered ferritin Levels?

Ann G.

Medical Reply

Requip does not cause ferritin levels to change in any way. However, low ferritin levels are often associated with worsening RLS and treating these patients with iron may be helpful.

Sent: Sunday, February 01, 2009 5:40 AM
Subject: Topical Neurontin

Does topical (cream) Neurontin or Gabapentin give anyone relief from RLS?

Vera P.

Medical Reply

As far as we know, topical preparations of gabapentin do not help RLS. However, this has not really been studied.

Sent: Sunday, February 01, 2009 9:09 AM
Subject: Is my itching part of my RLS?

I am writing to ask for your advice/help. I'm not sure if my problem is related to RLS or not. I sometimes get the urge to move my legs when I'm in bed, but what's worse is the itching! The lower part of my legs (just above the ankles) itch so bad sometimes that they drive me crazy!

Do you think this is a symptom of RLS or do I have another problem. I put lotion on my legs all of the time, but nothing seems to work.

Judy L.

Medical Reply

It is often hard to differentiate RLS symptoms from other leg symptoms. If your itching symptoms are relieved by movement and come and go with the urge to move, then they are likely due to RLS. Otherwise, the itching is likely a separate issue.

Sent: Sunday, February 01, 2009 9:10 PM
Subject: Medical Advice Comment

Just out of curiosity, when so much of the scientific literature points to an iron deficiency component to the causality of RLS, why is it not discussed in greater detail with patients? As a former registered nurse with life-long RLS symptoms who followed the research and began iron supplements and Vitamin C, following the regimen used to treat patients with anemia and taken under the supervision of a physician, with great success.

 I get frustrated with all of these RLS "help sites" that only discuss the usual approved medications, primarily Requip and Mirapex. There are so many people truly suffering with this syndrome, why are they being deprived of an inexpensive solution that has been proven to help?

Achieving a ferritin level of 50 ng/mL is ridiculous--it is barely over the minimum of the normal range. With a normal range that spans upwards of 200+, why are they not allowed to at least reach the mid section of that range as long as they are monitored????? The deadly iron levels associated with hemochromatosis are not considered harmful until over 200 ng/mL for pre-menopausal women and over 300 ng/mL for everyone else. Truly severe cases of hemochromatosis will see upwards of 1000 ng/mL, a far cry from 50 ng/mL. Again, why are physicians so reluctant to discuss iron?

One respondent mentioned that he could no longer afford the approved medications. Iron supplements are inexpensive, over-the-counter, and readily available. Why are people being denied this symptom-saving advice? Yes, I am not naive enough to think that it will work as well for everyone, however, my hunch is that the vast majority of true RLS sufferers will realize at least some improvement with ferritin levels in the 100+ range because, once again, the iron connection to RLS is based on sound science, in research replicated in countries from Canada to Japan, as well as here in the US.

As a personal side note, I have become aware of how incredibly sensitive my body is to the amount of iron in my system. Although my ferritin level is now above 120 ng/mL--if something interferes with the absorption of that iron supplementation, there is hell to pay with the spasms 1 - 4 days later. Iron supplements work.

Frustrated Healthcare Professional

Medical Reply

Most all of the RLS specialists check serum ferritin levels and treat patients who have low iron levels. The majority of non-RLS doctors are still not that educated about RLS and do not really understand the iron connection and thus infrequently check for this or treat it. However, this issue is very complicated and not quite as straightforward as you may think.

There is a growing body of evidence that does show the link between low iron levels and RLS and that increasing iron stores may help many (but not all) RLS patients. The doses are not fully worked out yet but you are correct that higher serum ferritin levels may be necessary to relieve RLS symptoms. However, the real difficulty is achieving high serum ferritin levels.

As serum ferritin levels increase, the body’s ability to absorb iron through the gastrointestinal tract decreases. It is therefore very hard to achieve even levels of 50 by the oral route. In addition, most people have trouble tolerating adequate oral iron tablets as they tend to cause gastrointestinal upset (pain, diarrhea, constipation, etc.). Therefore, it is rarely a significant concern in these patients about getting their iron levels too high and thus causing hemochromatosis (although all patients receiving iron should have their serum ferritin levels closely monitored as levels above 200 may cause problems).

Experimental studies have shown that intravenous iron can easily bring serum ferritin levels above 50 (and they are often brought to the 200 range) with dramatic improvements in RLS symptoms (however, not in all patients). Intravenous iron therapy is somewhat risky and is still done only experimentally (in approved research protocols) for RLS patients. We are hoping that more research will clarify this issue to give us safe guidelines and procedures that will lead to a better therapy with iron that will allow many RLS patients to avoid the need for daily medications like Mirapex and Requip.

A Reply from Frustrated

Sent: Monday, February 02, 2009 9:29 AM
Subject: Re: Medical Advice Comment

Thank you for your quick response. I am fully aware of the issues regarding iron and RLS--the difficulties with absorption for many people along with problematic gastrointestinal side effects and the lack of clear and safe guidelines for the use of intravenous iron--however, does this preclude giving all RLS sufferers at least the option of trying iron supplementation to achieve a much higher ferritin level than the 50 ng/mL? Many RLS sufferers are young, being diagnosed at an earlier age at a time when their bodies have a greater ability to tolerate iron supplementation.

Why is it not stated that working towards achieving a level over 100 ng/mL under the supervision of a physician can/may help many patients? I agree that adequate iron stores is not the entire picture and that many patients need both the approved medications and iron supplementation--I myself require both. That said, it has been the iron supplements that have made the greatest difference in the evening--I can now sit still, without any sensations in my lower extremities--and read a book or snuggle up with a family member--finally.

Also, why, when patients with traditional anemia or end stage kidney failure receiving dialysis have been treated for years with iron with all of its problems, are RLS patients are not encouraged to pursue this avenue of treatment as well as long as it is in conjunction with traditionally approved methods of RLS treatment?

On a personal note, it breaks my heart when I read some of the personal stories of some of these sufferers or view the photos of the woman on the rlshelp.org website sleeping on the floor with her legs tied to a frame in order to gain some much needed rest when there exists the possibility of greater relief through iron supplements and yet they are not being encouraged to pursue this avenue of treatment along with the traditional treatments.

And I ask again, just because there may be difficulty in achieving a higher serum ferritin level, is it fair to deprive ALL patients of this possibility/information?

Still Frustrated

Medical Reply

I can understand your frustration but there are several other factors to consider. The first is that the FDA approves iron infusion therapy only for patients with severe iron deficiency anemia or for dialysis patients. As there is some significant risk with this therapy (allergic and other reactions occur occasionally but when given as a usual treatment this adds up to a lot of patient adverse reactions), doctors who administer this treatment without approved indications expose themselves to significant medical-legal risk (which is a real concern in our litigious society).

Furthermore, long term risks of therapies that are not studied in specific population groups (in this case, RLS) may have unexpected side effects. Even established very beneficial drugs like Vioxx have been found to have serious side effects after further study. Therapies really need to be studied adequately to prove that the benefits outweigh the risks before doctors should recommend them to large classes of patients. There are clearly very good reasons why the FDA demands proper investigation prior to approving the use of drugs. We really do not want to do more harm than good in the long run.

Iron infusion therapy has improved over the years and is safer than previously (when the risks were higher) but still has a higher risk profile than using most other drugs for RLS off-label. Therefore, most all of the RLS specialists who do prescribe a slew of off-label drugs are still extremely reticent to administer iron infusion therapy.

Sent: Monday, February 02, 2009 11:56 AM
Subject: RLS/Mirapex

I've been taking Mirapex for 8 years now and with great success until recently. Approximately 6 months ago I began having difficulty falling asleep and once asleep, awaking after 3-5 hours of sleep. My initial dose of Mirapex was the usual .125, but has titrated to .25 twice a day/as needed. I've noticed that lately even with the Mirapex I still feel the RLS but more in my trunk and arms.

My primary physician prescribed some Ambien, which does help me to fall asleep, but am still awake after a few hours. Think I need to switch to a opioid?

Jay R. in Johnstown

Medical Reply

It sounds like you are experiencing some augmentation from taking Mirapex. You could remain on the drug and simply treat with a longer acting sleeping pill (such as Lunesta) however, it may be better to change to another class of medication as the augmentation is likely to worsen with time (although this may be a slow process).

Opioids (or tramadol) or anticonvulsants are the next choice to consider replacing the dopamine agonists.

Sent: Saturday, February 07, 2009 5:20 AM
Subject: restless leg syndrome

I have been under treatment for RLS for about 8 years now. At first I was just given Ambien, I took this for about 5 years and eventually it was deteriorating my sleep. My doctor sent me to a sleep specialist I had a sleep study done and was diagnosed with severe RLS. I was given Requip and Gabapentin at that time. After about a year it seemed to not work as well and I had developed rebound during the day that was almost to the point of being unbearable.

I have since decreased my Requip from 3 mg to 2 mg and it seems to have helped some, I also take 700mg of gabapentin and 1 mg of clonazepam. I have a little bit of hang over in the morning but it goes away. My problem is, I still cannot sit still for more than 1/2 hour. This starts about mid afternoon and gets worse throughout the evening. I cannot go on lengthy car rides ( more than 45 min or so) without it really causing rebound. Evenings are the worst for me. I sleep alright , about 5-6 hours a night but getting to sleep is the problem. I cannot sit and watch television in the evening, I am constantly walking stretching and massaging my legs to get some relief.

I have made an appointment with a new sleep doctor and will see him in march. I do have lower back pain and cramping and have had it from a child. I have seen a chiropractor regularly but it hasn't helped the RLS. Are my meds causing the rebound? I have tried to cut down on the Requip and get no sleep at all if I do. Are there any other meds out there that can treat RLS? I tried Mirapex and had adverse reaction to it.

Are studies being done to connect lower back pain and RLS? And last of all...do you think I should see a neurologist? I know this is a lot of information, sorry for going on and on. I am 51 yr old post menopausal female with no iron deficiency.

JT

Medical Reply

f you are getting earlier and more intense RLS symptoms since starting/increasing your Requip, then you are likely suffering from augmentation. The best course would be to stop this drug completely. However, you must then take an opioid (hydrocodone, oxycodone, etc.) up to 3 times daily or else the RLS symptoms will drive you crazy (or crazier as the case may be) for a few weeks. Even after this initial exacerbation period, you will likely need to maintain on an opioid.

It may be helpful to stay on gabapentin in order to keep your opioid dose as low as possible. We typically do not use clonazepam as it causes drowsiness and has a 40 hour half-life so it stays in your system longer than is needed.

Although some neurologists are knowledgeable enough to treat your RLS, you may need to search for one (or a sleep specialist) who is experienced enough to treat Requip rebound with opioids.

A Reply from JT

Sent: Monday, February 09, 2009 4:00 AM
Subject: Re: restless leg syndrome

I have found a different doctor to go to and hope I can get some relief. I don't think the opioid will be a solution for me though as I am allergic to every one I have tried so far (hives). The clonazepam is a concern though as I was unaware of the 40 hour half life. I am assuming this is adding to my daily tiredness and will discuss this with my doctor.

I will do more research to find a neurologists in my area that may be able to help.

JT

Medical Reply

You may want to consider tramadol which is not really an opioid (although it is often classified with the opioid group. It does not really work through the opioid receptors and does not share any allergic reactions) and typically works very well for RLS.

Sent: Sunday, February 08, 2009 8:48 PM
Subject: Fatigue with RLS treatment?

I am a 3 year heart transplant recipient and I have sleep apnea, high blood pressure, diabetes, RLS and a few other things. For sleeping I take 10 mg Ambien. It helps me go to sleep faster and makes it easier to tolerate the CPAP mask. For RLS I take 3 mg of Ropinirole which seems to help quite a bit.

Also, when RLS is really bad I will wear a pair of knee high suppression stockings like you wear after a surgery and they help a lot. My problem is tiredness and energy loss the next day.

Jerry

Medical Reply

It is hard to say whether the tiredness is due to Requip or your other problems. The best way to figure that out would be to stop the Requip for a week (you could use Vicodin or some other opioid instead) and see if the fatigue improves. If it does, then you may want to consider another medication for your RLS.

Sent: Monday, February 09, 2009 9:08 AM
Subject: Restless legs worse with medications?

I have suffered from this malady for a long time. It is familial as several members of my late father's family are sufferers as he was. For some months now my Doctor has been treating me with Adartrel or Requip (Dopamine) but of late the symptoms have become much worse and have extended to my arms with severe tightness in my neck / shoulder area. Should I ask for a change of medication or are the symptoms being exacerbated by the fact that I am also taking Citalopram?

Any help would be so welcome. Sometimes I feel driven dotty!

Joan in the UK

Medical Reply

From the information that you have given me, it is difficult to determine if ropinirole (Adartrel, Requip) is the cause of your worsening RLS or whether your symptoms are being exacerbated by citalopram. If you recently started the citalopram, then it might be the culprit and changing it to a more RLS friendly antidepressant (bupropion).

If that is not the case, then it is more likely that you are experiencing augmentation from the ropinirole in which case it should be changed to another class of RLS drug (painkillers or anticonvulsants).

Sent: Tuesday, February 10, 2009 11:01 AM
Subject: RLS and Depression Medications

I am taking several medications for major depressive disorder, and as a result I am suffering from RLS, it is pretty severe and Ambien does nothing to help me get some sleep. My psychiatrist seems completely unfamiliar with this problem and has not offered any solutions. I am not in a position right now to discontinue my medications.

I am on Celexa, Wellbutrin, and Buspar, also a low dose of Ritalin as needed due to daytime fatigue because of the RLS. I believe the Celexa is the culprit but if I stop it the depression returns full force. The Celexa also causes anorgasmia, so sexual activity is not a viable way to relieve the RLS.

My GP is not much help either, years ago he prescribed Mirapex but I couldn’t stay awake during the day on it. He will definitely not give me anything potentially habit-forming, such as benzodiazepines, opioids, etc. even though I have never had an addiction problem. He just doesn’t prescribe those medications.

I have had RLS on and off since I was 17 (I’m 49 now). I also have a long history of depression and dysthymia, I need an SSRI but they all cause RLS.

Andrea S.

Medical Reply

When an antidepressant drug like Celexa is needed to keep severe depression at bay, we typically do not try to stop it but rather just treat around this drug. Even though Mirapex caused sedation, it may still be worth a trial of Requip to see if that is better tolerated.

If the Requip does not work, then the opioids (or tramadol) or anticonvulsants (gabapentin, Lyrica) are next on the list. If your current doctors will not prescribe these drugs, you should see a specialist (neurologist, sleep specialist) who will.

Also, Provigil tends to be a safer daytime stimulant than Ritalin.

Sent: Friday, February 13, 2009 6:42 AM
Subject: RLS better with ibuprofen and clonazepam.

I’m 58 and have suffered from RLS since I was a young child. At that time, the doctor told my mother I didn’t have enough calcium. My RLS seemed to subside somewhat during my 20’s and 30’s, but it reared its ugly head again in my 40’s and is now practically a nightly event.

As soon as I start feeling the uncomfortable leg movements, I take one ibuprofen and either .5mg or 1mg of Clonazepam depending on the severity of the evening. Even though it can only be 10pm, I go to bed and put a pillow between my legs. Usually I can fall asleep within a half hour if I really focus on relaxing.

Mirapex and Requip gave me very unpleasant side effects. Mirapex made me feel “weird’ until the next afternoon, and I had difficulty swallowing with Requip, even though both drugs did relax the legs. My doctor also had given me Ambien. I found that was effective for about three hours at most.

I drink a lot of water and always have, exercise frequently (doesn’t seem to matter if I do or not), am generally healthy, so there’s no rhyme or reason as to why I have this condition. I’m just thankful this condition finally has a name, but it would be wonderful to know a cure.

Try the ibuprofen and Clonazepam. It doesn’t always work but typically it does for me anyway.

Pam

Medical Reply

Typically, ibuprofen does not help RLS. Clonazepam also does not help RLS but rather helps people with RLS to get to sleep. As it has a very long half-life of 40 hours, there are many drugs with more reasonable half-lives that would be safer (Ambien may not be right for you as its half-life is quite short at 2.5 hours).

A better treatment plan would be to try anticonvulsants (gabapentin, Lyrica) or painkillers (opioids, tramadol).

Sent: Monday, February 16, 2009 4:03 AM
Subject: RLS better with Lyrica?

Just checking to see if you have any experience with Lyrica helping symptoms of RLS. My PCP gave me a RX but the drug company would not honor it. I used to be on 2 mg Requip - then I got too much and actually made my RLS worse with worse symptoms. I am not currently on anything and I am going out of my mind. Sinemet does not work at all.

I cannot sleep and the pain is excruciating. My neurosurgeon said I do have lumbar stenosis but nothing that could cause RLS - I also have urinary and fecal incontinence - he said these are not related at all. I cannot find a good doctor who could help me. 

I have gone to gynecologists, pelvic floor doctors, and they believe it is more neurological. I have been to 2 neurologists; one who told me to read Suzanne Sommer's book, and the other was just an idiot. I really need help.  I am at my wits end.

Betty

Medical Reply

I do have lots of experience with Lyrica for RLS. Most of the patients do very well with this drug. Some do not benefit from Lyrica and others have may have side effects but the majority do benefit very significantly from this drug.

You may also want to consider adding painkillers (opioids or tramadol) on an as needed or regular basis. The combination of drugs should take care of your RLS problems.

I cannot speak about your incontinence problems as that is beyond my expertise.

Sent: Monday, February 16, 2009 8:29 AM (see previous letter dated Thursday, September 18, 2008 10:58 AM)
Subject: RE: Requip the problem and iron therapy?

I’m reading your book, which I am really enjoying. I’ve been taking Iron glycinate by Xymogen. I also am trying Blood Builder, which has 125 mg of biglycinate, which is apparently equivalent to 25 mg of iron. I don’t know how to translate my dosages of these products from the recommendations in your book. I didn’t see anything about iron glycinate or biglycinate.

They are supposed to be highly absorbable and easy on the digestive system. I like the Blood Builder because it has 100 mg of Vitamin C, and some folic acid and Vitamin B 12. My last blood test taken last month showed my ferritin level to be 15. I had been taking only 1 capsule of the iron glycinate twice a day and I wasn’t taking it on an empty stomach. So I want to take it correctly and at the right dosage.

Can you tell me how much to take of these products and which one you recommend? Below are links to the products to their brand websites.

http://www.xymogen.com/2008/formula.asp?code=000099

http://www.wellnessresources.com/products/blood_builder.php

Anne C.

Medical Reply

As there are many different compounds (formulations) that contain iron, typically the actual amount of iron is expressed as elemental iron. That is the best number to use for comparison purposes. The Xymogen product contains 29 mg of elemental iron while the Body Builder product contains 25 mg. You can easily purchase very inexpensive formulations of ferrous sulfate (the commonest iron compound sold) that contain 65 mg of elemental iron. Any of these products can be taken up to 3-4 times per day (if tolerated) and get much better absorbed on an empty stomach with 200-500 mg of vitamin C to help acidify the stomach (which of course adds insult to injury for those with sensitive stomachs).

The most potent oral iron compound on the market currently (to my knowledge) is Niferex (I have just recently become aware of this product) which contain 150 mg of elemental iron. However, I would dose this product carefully (start with once daily and work up to 2-3 times daily if tolerated) as it will likely have a higher potential for gastrointestinal upset.

The best iron preparation for you (or anyone) is the one with the highest amount of elemental iron that you can tolerate. Only you can determine how many times a day to take the drug with a maximum of 3-4 times daily. As your serum ferritin level rises, you will absorb much less of any of the oral iron drugs (which is often the limiting factor for those who do not get the gastrointestinal upset problems).

Sent: Wednesday, February 18, 2009 5:30 PM
Subject: RLS: weaned myself of Mirapex after 5 years of use.

I’ve had RLS all my life, occasional at first, then for many years just before falling asleep. Irritating but I lived with it. I tried several medications in the past, incl. diazepam, but not on a regular basis (too drowsy), until my PCP told me about Mirapex, which I started taking late 2003. It worked well so took it regularly, usually ½ of .25 mg tablet at 7PM, the other half before sleeping. However, the RLS did get a lot worse over the last 5 years (much more intense in the early evening). I thought it was because of my age (>50 now) but it probably was severe augmentation. I also felt a lack of energy in the daytime, combined with difficulty sleeping (not caused by RLS symptoms, just a busy brain).

The sleeping problems got worse and worse and my PCP gave me zolpidem for occasional use. Because the RLS symptoms changed to a more constant burning (daytime too) even on Mirapex, I tried Requip, but it did NOTHING for me; the RLS (urge to move) was awful and I gave up after a week (December 2008). Back to Mirapex which gave instant relief but still severe sleeping problems. I tried zolpidem every night for a week. I sleep but don’t feel rested and now was getting “electrical tension” in my arms and shoulders too (more RLS?). I was unable to concentrate and was getting angry and depressed.

On January 22, I quit the Mirapex completely, fearing the worst. I had to take 10 mg Zolpidem PLUS a strong drink to sleep but I managed. The RLS symptoms were getting less. The daytime burning stayed. Then on Feb. 9 I also stopped the Zolpidem completely (I was down to 5 mg by then) and the RLS became milder again. I really believe that the Zolpidem made RLS significanly worse (I woke up with RLS!)

So now I am not taking anything and feel that the RLS is more or less where it was 6 years ago. It’s there mildly in the daytime and I have a difficult time sleeping but it’s MUCH less than when taking the mirapex.

I’m not sure where to go from here. I have not found an RLS expert here in the Northwest but need to do something to control the mild RLS I have now, primarily sleep better. I go to bed between 11 and 12 and stay there, even when I can’t sleep, which can take 2 hours. I feel the RLS in my calve muscles but the urge to move is minimal.

My iron levels are checked yearly and are “normal” but should I ask for a more specific test? My PCP knows about my RLS.

My questions:

1. Have others experienced the worsening of RLS with Zolpidem?
2. Can Mirapex augmentation/tolerance be so extreme (I was kicking my desk at 8PM waiting for the Mirapex to start working, now almost nothing)
3. I need better sleep with mild RLS. Will a sleep study do me any good (I know I have RLS). Would you advice tramadol for daily mild RLS symptoms?

J. from Seattle

Medical Reply

Worsening of RLS from zolpidem is very unusual as many RLS sufferers use this medication to get to sleep.

Augmentation from Mirapex (or any other dopamine drug) can be extremely severe. Many patients report extremely severe RLS symptoms that may occur even around the clock.

A sleep study is not very likely to help find out what is causing your insomnia (it is a much better study for excessive daytime sleepiness problems such as sleep apnea). Tramadol or opioids may be a much better choice to treat your RLS.

Sent: Saturday, February 21, 2009 7:42 AM
Subject: Alprazolam and Ropinirole (Requip)

When I take these 2 medications together before bedtime, my entire body and legs are so restless, I can't lay still. Please help!!!!

I am so tired. Requip alone works for RLS, but when I can't go to sleep and take a Xanax, this happens.

Judy M.

Medical Reply

Your reaction to Xanax is actually quite unusual as many RLS patients use benzodiazepines like Xanax (with or without Requip) to help get to sleep.

You may want to try a different class of sleeping pill such as Ambien, Lunesta or trazodone.

Sent: Sunday, February 22, 2009 2:45 AM
Subject: RLS and Pregnancy

I was referred to you by some of the good people on the RLS discussion board. I just found out I am pregnant (yesterday). I am a sufferer of RLS in a severe form. I take 1.5mg of Requip at night to sleep. During the day the RLS is terrible but I can't take anything because I drive so much. I cannot sleep a wink without Requip. I've been on it for over a year now but have had RLS for as long as I can remember. It got really bad during my 1st pregnancy, went away and then came back with a vengeance after back surgery.

I did not take any Requip last night because of the pregnancy, and instead, tried many other non-drug therapies, all to no avail. I have not slept a wink. Not only that, but I cannot even take weight off my feet without my legs going nuts. It has gotten worse with each passing minute and right now, I am standing up writing this email, all my weight on my feet, and both legs are just out of control.

At the moment I do not have any medical insurance, so I don't know how long it will be before I can get to a dr and figure out a new therapy for me during pregnancy. In the meantime, I do have to work and I do have a 5 year old to take care of. Do you have any recommendations for me? I think its going to be a very long day today.

Sarah J.

Medical Reply

Pregnancy and RLS is a difficult combination as we really do not like to give any medications that may harm the growing fetus. You should not take Requip as it is a Category C drug that should not be taken during pregnancy.

The safest drugs for RLS during pregnancy are the 2 potent opioids, methadone (my choice) or oxycodone. These work well when taken in low dose. However, it is often quite difficult to find a doctor who will prescribe these potent schedule III narcotics to patients (and even more so when pregnant).

A Reply from Sarah J.

Sent: Sunday, February 22, 2009 9:08 PM
Subject: Re: RLS and Pregnancy

Since this is my second night in constant movement and I am now experiencing a great deal of pain related to being on my feet for over 40 hours straight, I am planning on finding a doctor tomorrow who can do exactly as you have suggested. I am desperate enough at this point to refer to irrational behavior in order to get what I need to survive.

Thank you for clearing up about the Requip. I am also desperate enough that I was considering taking some tonight just for a little relief. if I take methadone for the duration of my pregnancy, will the baby be addicted to that med and have withdrawal after birth?

What about Iron IVs and things like that?

Sarah J.

Medical Reply

At the doses that we use, addiction to opioids or withdrawal problems do not seem to be an issue. However, it should be withdrawn a few days before delivery to avoid fetal respiratory depression when delivered.

There is no list of doctors who are expert in treating RLS including those who may use methadone. You simply have to call around to see if you can find one.

IV iron is not yet approved (or adequately investigated) for RLS (except in those with refractory anemia) and especially not for pregnant patients.

Sent: Sunday, February 22, 2009 7:45 PM
Subject: RLS and loss of leg control?

My father has Severe RLS and when he reads he loses control of his legs. Why is that?

Larry

Medical Reply

There is no known relationship between leg control and RLS. Therefore, you must look for some other reason for your father’s loss of leg control when he reads.

Sent: Monday, February 23, 2009 11:47 AM
Subject: Tiredness in the legs?

I have been taking Mirapex for my RLS for about 3 years now, and it usually works. However, I have developed a lot of joint pain and weakness in my legs, and just a feeling of very bad tiredness in my legs. It is usually worse at night, and keeps me up as much as the RLS did.

Could the Mirapex be causing this? It is quite severe at times and very hard to bend down to get something.

Lori H.

Medical Reply

t is difficult to translate what your feeling of tiredness in your legs really means and why it would keep you up. If the feeling is associated with an urge to move your legs and is made better with movement, then it may simply be a variation of your RLS symptoms. If not, then it is unlikely that it is related to RLS or Mirapex. You may be suffering from a neuropathy such as sciatic pain or peripheral neuropathy and if so, consultation with a neurologist may be helpful.

Sent: Monday, February 23, 2009 3:31 PM
Subject: ECT (Electroconvulsive Therapy) and RLS?

I am a 39 year old man from Vermont who is new to RLS. I have recently had two separate series of electroconvulsive therapy treatments. Have you ever heard of RLS being brought on by these treatments? It was only after these treatments that my RLS symptoms began (although my mother had RLS, so maybe it just brought the RLS that was lurking below to the surface, as I am sure that I was genetically predisposed).

I am currently out of work and do not have insurance so I can't see a doctor or get prescription medications right now. Are there any over the counter medications that you know of that are at all effective for relieving symptoms of RLS?

Josh l.

There is no known association between ECT and RLS. However, many of the patients who receive ECT also take psychiatric drugs that tend to worsen RLS (which may explain the connection, especially if you are taking new antidepressant drugs since your ECT).

There are no effective RLS drugs that you can buy OTC.

Sent: Tuesday, February 24, 2009 6:59 PM
Subject: Iron supplements?

Having had a ferritin level of 15, my RLS symptoms have (gratefully) been reduced with iron supplements.

I see a gastroenterologist for IBS (irritable bowel syndrome). Aware I am taking iron supplements, he now insists I may have internal bleeding. This testing is a large added expense for me, if not actually necessary.

I've read of many others with RLS having low ferritin levels who are now taking iron supplements. Is internal bleeding a consideration for us all?

JMD

Medical Reply

It is very common for RLS patients to have low iron/ferritin levels. It is becoming more apparent that the low iron/ferritin levels may be due more to an increased daily loss of iron (nothing to do with actual blood loss) but this is still not well understood. However, before we attribute the low iron levels to increased basal iron loss we must rule out blood loss as the real cause.

We have found many cases in RLS patients of additional blood loss (on top of the usual increase in iron loss) which may be due to ulcers or even colon cancers. Therefore, you really do need to have your low iron levels further investigated before attributing it to the typical decreased levels common in RLS sufferers.

Sent: Monday, March 02, 2009 4:28 AM
Subject: RLS & Arthritis

I have both RLS & arthritis, along with some other ailments. But I never know what is hurting me the RLS, arthritis, or both. When the pain is in my knees I think it is the arthritis. I take Mirapex .25 mg twice a day and .5 mg of clonazepam. Which helps with the sleep problem. My doctor has given me tramadol for the pain in my knees.

I was wondering if it is ok to take the tramadol in between times that I take the other medications for the RLS. I'm trying to delay having to have knee replacements.

I know tramadol is given for RLS also. As I have read in your books.

Betty B.

Medical Reply

You should be able to differentiate arthritis pain from RLS pain by seeing if the discomfort gets better with walking (which would only occur with RLS) rather than worse (which should happen with arthritis.

Tramadol can be used for RLS and arthritis (as you have already noted) so it may be useful to do double duty to take care of both your problems at once.

As you probably already know, clonazepam is not my favorite sleeping pill (due to its very long half-life of 40 hours) and there are many other ones that are much better suited for this purpose.

Sent: Monday, March 02, 2009 5:41 AM
Subject: Question on Mirapex

A member of our Cyberspace RLS Support Group has been told by two cardiologists to get off of Mirapex because it causes heart problems.

We are aware of valvular heart disease associated with Permax. Has any of the research shown a connection between Mirapex and heart disease?

Vera P.

Medical Reply

The cardiologists clearly are incorrect about Mirapex. They may be confused in that Permax (as you have noted) and other ergot derived dopamine agonists (cabergoline, Parlodel) do cause valvular heart problems. The non-ergot dopamine agonists (Requip, Mirapex, Neupro) are not associated with any heart problems.

Sent: Monday, March 02, 2009 2:54 PM
Subject: OTC RLS medication?

I am looking for an over-the-counter medication for RLS as my daughter is out of work and has no insurance. She is 48 years old. I have been told about "legatrin" but am not sure of the spelling and the pharmacist does not recognize. He will order it if we can come up with correct spelling.

Darlene H.

Medical Reply

There are no OTC medications that provide any relief for RLS (including legatrin) despite the claims of many websites (all of which are clearly for profit ones).

Legatrin contains acetaminophen (Tylenol) 500 mg and diphenhydramine (Benadryl) 50 mg which is the same as a Tylenol PM tablet except that the dose of Benadryl is double that of Tylenol PM (which only has 25 mg of diphenhydramine).

Benadryl is one of the most potent drugs to worsen RLS so getting a double dose would be terrible for most RLS patients. Please avoid this medication.

Sent: Wednesday, March 04, 2009 10:28 AM
Subject: Marijuana for RLS?

I have had RLS for most of my life, now it is very sever RLS, twitching and jerking of my entire body 24\7, having augmented on Mirapex, gabapentin, to name a few. I know you and the Mayo Clinic now suggest to try tramadol then other stronger opiates like Methadone etc.

Before I tried opiates, I tried a lesser of two evils, marijuana, as you have stated many times it has worked for others. Marijuana worked wonders for me. For the first time since I can remember I had a good nights sleep. What is amazing is that I took only two puffs the first night and one puff each night just before getting into bed. It has been two weeks now and I feel alive again, sleep is so wonderful.

My doctor has said she will help me get medical marijuana if I can show her a study or documentation it works. Do you know of any study done on RLS and marijuana, or have any documentation that shows marijuana works.

Bill S.,
Oakville, Ontario, Canada

Medical Reply

There is no literature on marijuana and RLS as it is extremely difficult to do research on this drug (at least here in the USA). All the current evidence is anecdotal as noted by a few RLS specialists such as me. There is some current research that has shown some medical problems with the chronic use of marijuana, so one should be careful using that drug.

Sent: Thursday, March 05, 2009 4:12 PM
Subject: Mirapex and Requip for RLS?

I just found your site and am Thrilled! OK, my question:

I started out with Mirapex and after a year or so thought it wasn't doing that much good -- in fact, I swear that most days after I take it the RLS gets worse for a while, then settles down. So I started on Requip. I am now taking 0.25 mg of Mirapex about 2 or 3 in the afternoon, and then 2 mg of Ropinirole in the evening, somewhere around 9 or 10 (I forget very easily!).

We are away from home for six months so I haven't
Seen my doctor to check this out, and I'm really not
Sure just how much or what or when to take these...or if I should be taking both.

I have RLS EVERY day, and it is So Frustrating when it just won't let up. I do transcription work at home and spent much of the time putting my keyboard on TOP of my desk so I can stand to do my work...not too bad, but sometimes I can't even STAND still.

Oh, sorry - crab crab crab. The question is: Mirapex and Ropinirole both taken each day..?

I also noticed something on your site about pain pills helping. I had never heard that before. I took half a hydrocodone today because of back problems, and shortly thereafter took my Mirapex and suddenly worried about the two together. I guess that is no problem?

Thanks for any help you can give me. Bless you for having this web site. Now I know where I can go to perhaps get answers I need!

Susan B.

Medical Reply

Although very few RLS patients get any benefit from taking both Mirapex and Requip, there are a few who do better with this regimen. Typically, this is due to differing side effect (such as one causing drowsiness and is better taken at bedtime while the other causes alertness and is better taken during the day). The decision to take both together must be done on an individual basis. It is not clear what benefits you are getting by taking both drugs.

Opioids work very well for many RLS sufferers. They can be taken with the dopamine agonists (Mirapex and Requip).

Sent: Friday, March 06, 2009 10:51 PM
Subject: RLS and Warfarin?

Have there been any finders that being on warfarin makes RLS symptoms worse?

Karen

Medical Reply

No interaction with the blood thinner warfarin (Coumadin) and RLS have been noted.

Sent: Monday, March 09, 2009 12:18 PM
Subject: Disability and RLS?

I have RLS for about 40 years and I am 49 years old and taking Requip. I want to know that if I can apply for disability with having RLS?

Majid K.

Medical Reply

Yes, you can apply for disability. However, it is typically very hard to get disability especially when the diagnosis is RLS as the reviewers are not very familiar with this disease.

It may be helpful to get a copy of my book on RLS (Coping with your sleepless nights). Profits from this book are donated to the RLS Foundation. The book has a section on RLS and disability (with many helpful hints).

Sent: Wednesday, March 11, 2009 12:31 AM
Subject: RLS and Lyrica?

My doctor prescribed Lyrica for my RLS and I haven't seen anywhere that it is used for that. I haven't taken it as it was prescribed in the ER and insurance denied it. Now he never said he thought I had fibromyalgia but we had discussed the last ER doc telling me to go to rheumatologist to consider fibromyalgia. Is Lyrica effective for RLS. Also 7 years ago plagued with fatigue I had a sleep study done and the results showed PLMD but mild. Is there a such thing as it being "mild"?

All other tests were fine but that was clearly indicated. Been fighting doctors for years to listen to me that I am not "just" depressed. I think after some research that I did on my own that fibromyalgia is the clear main problem because all the problems I have are associated with it such as irritable bowel, painful heavy periods, depression, heart palpitations, PLMD/RLS to name a few.

How can I get yet another new doctor to listen to me at this point? What do I need to do?

Niki,
Kentucky

Medical Reply

You simply need to find a doctor who understands RLS to treat you. Although Lyrica is used to treat RLS (off-label), it is not the first drug of choice. Both Mirapex and Requip are the 2 drugs of choice (and FDA approved for RLS) and should be tried first. If you have adverse effects with these drugs or they do not help you, then Lyrica would be amongst the several drugs available off-label as a second choice.

PLMD has been rated in the past as mild, moderate or severe based on the number of leg kicks per hour. However, we currently do not use this assessment but rather would rate it based on the problems it causes with next day sleepiness/fatigue. There is some controversy amongst sleep specialists whether PLMS even when very frequent at night can really cause daytime problems.

Once your RLS is treated successfully, you will see if you have residual symptoms of fibromyalgia or other problems that still need to be treated.

A Reply from Niki

Sent: Wednesday, March 11, 2009 9:42 PM,
Subject: RLS and Lyrica?

I have done a little research on Mirapex and Requip. Seems they are going to make things worse. I am 32 and a stay at home mom and am already at my wits end with pain and fatigue and RLS and just wondered what really would help me be functional. I want to go back to school, have a life, be involved with my children.

Are Mirapex and/or Requip going to help or hinder because this has pretty much wasted and ruined my life for at least seven years! Thank you for your time.

Niki

Medical Reply

You simply need to find a doctor who understands RLS to treat you. Although Lyrica is used to treat RLS (off-label), it is not the first drug of choice.
Both Mirapex and Requip are the 2 drugs of choice (and FDA approved for RLS) and should be tried first. If you have adverse effects with these drugs or they do not help you, then Lyrica would be amongst the several drugs available off-label as a second choice.

PLMD has been rated in the past as mild, moderate or severe based on the number of leg kicks per hour. However, we currently do not use this assessment but rather would rate it based on the problems it causes with next day sleepiness/fatigue. There is some controversy amongst sleep specialists whether PLMS even when very frequent at night can really cause daytime problems.

Once your RLS is treated successfully, you will see if you have residual symptoms of fibromyalgia or other problems that still need to be treated.

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