Patient letters on RLS symptoms and remedies- Page 48


Kicking RLS/PLMD Patient

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



Sent: Friday, May 23, 2003 12:16 PM
Subject: RLS worse with antidepressant or augmentation?

I have had RLS my entire life.  For the past 4 years I have been taking Mirapex.  I take 3 of the.25 tablets each night.  I also take imipramine for panic disorder.  I have tried every antidepressant out there to find one more compatible with RLS, and I have not been able to tolerate most of them.  Wellbutrin made me so sick, and Remeron made me incredibly groggy and drunk feeling.  I didn't dare drive a car. 

Anyhow, I'm wondering if I need to find a more compatible antidepressant, or if I have augmentation?  The symptoms hit me in the evening, and even three pills do not relieve the symptoms for several hours.  Some mornings I am awakened with symptoms.  I seem to have more daytime occurrences if I am working on my computer or being somewhat sedentary. 

I am a farmer and spend most of my day on my feet.  When I do get the opportunity to relax, my legs make it impossible.  Could I have augmentation?  Do I need to try something else?  My GP has referred me to a neurologist, but I can't get an appointment for four months, and I think I will go crazy by then.


Medical Reply

You may be having augmentation and even rebound (causing the morning RLS), but it is difficult to tell.  The imipramine may be worsening your RLS and/or your RLS is just getting worse with time.  There are lots of antidepressants and although you have not had luck with the ones that are reportedly good for RLS, often trial and error is necessary to find one that will help your panic disorder but not bother your RLS (or cause other unwanted side effects).
For now, pain medications such as Ultram or Vicodin should allow you to not have RLS symptoms when trying to rest during the day.  Neurontin is another choice to treat your RLS.

Sent: Friday, May 23, 2003 10:01 PM
Subject: RLS
It was very interesting to read of someone else having  complete relief from RLS while visiting in a foreign country. Germany, Italy, Spain, China, no matter where, I have complete relief. I try to compare my daily routine at home and abroad and it is about the same with the exception of less stress on vacation. Getting there is a big problem, I walk about  the airplane  to keep from going crazy from RLS. It just consumes my whole body.

Xanax, narcotics don't do the trick. I have chronic kidney syndrome and have tried to stay away from medication, but that is impossible. I have had RLS since age 10-12  and now I am 65. Mirapex has helped a lot but I am on Zoloft and I find the mix causes a bad case of short term memory. Lowering the dosage of Zoloft to 50 mg doesn't help either. Has any one every had that problem?

I live in Arizona and the summer heat makes the RLS much, much worse. I try to take some type of analgesic, Tylenol with codeine, Ativan, etc but then I have a horrible headache all the next day. Has anyone learned how to handle the heat??


Medical Reply

Short term memory loss can occur for many reasons and is often difficult to explain.  Some RLS sufferers have seasonal symptoms (sometimes better in the summer) and just increase their medications at that time.
You may want to consider methadone which seems to be one of the best narcotics for treating RLS and works much better than codeine.

Sent: Saturday, May 24, 2003 11:59 AM
Subject: Questions about RLS and pain

I am 79 years old and have RLS since childhood. However, I didn’t have it all the time and mostly controlled it with aspirin and acetominophen or moving around. Actually I didn’t know what it was.

In 1999 I had hip revision surgery on my left hip and that opened a can of worms. RLS got much worse. I was given Percocet which, of course, helped. But, as with so many, my physician would not prescribe Percocet after the initial post-surgery prescriptions. About this time it was suggested I had RLS; I was getting only 2 to 3 hours sleep and was in bad shape. I found your web site (and thank you, thank you) and saw that you recommended Mirapex. My primary physician agreed to prescribe that although he knew nothing about it. It worked for a while, but it was making my mouth dry which resulted in a rash of dental caries which I had never had before. I knew that Percocet would work but could get on one to prescribe it. One neurologist wanted me to try Neurontin; I had two of the worst nights, being sleepy, yet not being able to sleep because of RLS.

From August 1999 until last summer, I have seen a succession of neurologists, none of whom really knew anything about RLS and none of whom would read the RLS treatment info that I gave them from your web page although my primary care physician did; he was very reluctant to prescribe opiates, however.  Last summer my primary care physician retired and I got a new one who was more willing to work with me on the RLS.

I have a great deal of pain, in my lower legs (the RLS sensory feelings start with creepy crawlies, etc and progress to pain or I just have pain).  I also have tingling, creepy crawleys, etc. then pain in my upper arms and across my upper back and I feel “shitty”, unable to do much of anything. In addition to RLS pain in my legs, I cannot walk very far without my legs hurting. However most of these symptoms and RLS is pretty much controlled with: 20 mg Oxycontin, one in the AM, one in PM, 2 mg Requip before bed, Percocet 5/325 for breakthrough pain, usually early morning (4 or 5:00 AM and late afternoon 4 or 5 PM.) I also take (for hypertension) 50 mg atenolol 2/day, 10 mg Hytrin before bed, Zoloft 150 to 200 mg for depression, split into AM and PM doses, Xanax 0.5 mg at bedtime (I have been taking this for years, originally for anxiety. If I try to stop, I get nightmares.

I recently went to another neurologist, supposed to know about RLS. I really wanted answers to some questions, but he looked at the list of meds, said he had something better; wanted me to start taking 100 mg Neurontin in the morning plus additional 1 mg Requip in afternoon. I didn’t see the point of adding Neurontin. I think he wanted to wean me off opioids. Didn’t get answers to my questions which are:

   1.    Is the pain I feel associated with RLS, especially arms and shoulders. I do have peripheral neuropathy in my legs and know that could cause some of the leg pain.

    2. I am fatigued a good part of the time. I seem to sleep ok, however. Could RLS and/or pain cause fatigue? I also have depression. I don’t know if fatigue is from RLS, depression or both.

Would it be a good idea to substitute a different anti-depressant? I tried Wellbutrin and had bad side effects. How about Effexor, which I understand, is both a serotonin reuptake inhibitor and a norepinephrine reuptake inhibitor. Both of these neuro-chemicals seem to be involved with pain pathways. Would it help to take an anti-depressant which also acted on pain? Could the walking pain be related to RLS? Or is it more likely from spinal stenosis. Are there any better treatments for my RLS, pain, fatigue? The fatigue bothers me the most.

Thanks for listening, sincerely,

Medical Reply

Trauma to the body (such as your hip surgery) is a common trigger for worsening RLS.  The pain that you are having could well be neuropathic pain that is associated with RLS in a minority of RLS sufferers.  The pain, however, could be orthopedic in nature, due to spinal stenosis, or even peripheral vascular disease (especially the pain in your legs with walking).  This may be more difficult to sort out and may need some other tests.
Your fatigue is also hard to explain as there are many causes of this common complaint.  Sometimes a sleep study is needed to see if PLMD or other problems are causing poor quality sleep that does not restore your energy.
Wellbutrin is on the short list of "good" RLS antidepressants but this is a very individual problem that can vary considerably.  Often only trial and error can decide which is the best antidepressant for you.
Neurologists like to use Neurontin as this is a drug that they are very familiar with and in your case he is likely hoping it will help your possible neuropathic pain (this drug is used for other neuropathic pain problems).  Unfortunately, Neurontin often causes unwanted side effects which limits its effect.  As it did not help you originally, it is likely that it will not help you now.
Oxycontin is a reasonable choice for a narcotic for RLS but methadone may work better.  You will probably need narcotics for the rest of your life unless some other new drugs become available for RLS.
It is hard to say whether or not seeing you might be helpful, but if you do not get better with the above advice, feel free to make an appointment.

Sent: Saturday, May 24, 2003 2:35 PM
Subject: Severe PLMS
I am a 50 year old male from Ireland. I  have suffered from  PLMS for several years and it has been getting worse to the point where I have excessive daytime fatigue, especially in the morning. It is usually accompanied by acute tiredness in my legs and an overwhelming desire to sit down as much as possible. A number of years ago I was diagnosed as having CFS (chronic fatigue syndrome) but I am beginning to think that  the effects of PLMS were causing the tiredness, which was always worst in the morning with v tired legs.

I have tried quinine but it had no effect. Same with Temazepam. I have also tried Klonopin at 1mg before bed but it "spaced me out" the next day to the point where it was worse than the effect of the PLMS. I am not sure what to try now. My doctor admits that my symptoms are more severe than any he has encountered (my arms flail at times too) and is at a loss what to recommend. He is open to suggestions arising from my own research. Hence my letter to you.

Any suggestions how to proceed would be gratefully received. Thank you in hopeful anticipation. 

Medical Reply

Mirapex or Requip are probably the best medications for PLMD and RLS. If there are concerns about daytime sleepiness (which occurs in only a small percentage of patients on these medications and then usually only at higher doses) then cabergoline (Cabaser) is similar and works very well.  You probably should have a sleep study to see if the PLMD are causing enough arousals to be causing your daytime problems and thus be worth exploring using new medications.

Sent: Wednesday, May 28, 2003 4:28 PM
Subject: Nasal sprays and RLS
I broke my nose a year ago and it has bled ever since.  Flonase and Nasacort, which I have used successfully for some time, seem to prevent my nose from healing.  The doctor has suggested trying Astelin (azelastine HCL), knowing I have severe RLS.  The packet says that it is an antihistamine.  Do you have any experience with Astelin and RLS?
Thank you,

Medical Reply

 Astelin is indeed an antihistamine and may worsen RLS in about 50% of cases (this is a very unofficial estimate).  The only way to know whether or not you can tolerate it is to try it (ask your doctor for a sample).
Allegra and Clarinex are the best of the oral antihistamines for not bothering RLS, but they also are about only 50% successful.

A Reply from Barbara

Sent: Thursday, May 29, 2003 11:52 AM
Subject: Re: Nasal sprays

Thanks for the reply.  I have used Nasacort and Flonase without any problems,  except that I have been told that they are keeping my nose from healing because they are steroids.

 I did try the Astelin for the past two days and yesterday I had some RLS breakthrough to the point that I had to take extra medication during the night last night, so I guess it is not going to work.


Medical Reply

Make sure that when you spray the steroid nasal sprays that you spray away from the septum. That is the most common reason for side effects from these sprays as they are otherwise very safe and effective.

Sent: Friday, May 30, 2003 1:19 PM
Subject: RLS and foot/ankle swelling
I am 46 and have suffered with RLS for as long as I can remember.  I unfortunately have sleep apnea as well.  I am currently on .50 mg. of Mirapex at bedtime and use a CPAP machine.  With this regimen I feel blessed to be getting 4-5 hours of sleep per night for the first time in many years. 

Recently my feet and ankles have started to swell with aching, burning and general leg discomfort. This starts first thing in the morning and lasts all day.  My usual symptoms are white hot needle like pain with involuntary movement throughout the day which worsens in the late afternoon and evening continuing into the night.  I do have upper body movement and pain as well.  Is the swelling related to RLS or is this some new demon?

I would also be interested in a comparison of Parkinson's and RLS.  People understand that Parkinson's is a complicated disease process but if you have RLS the implication is that you are making it up. 
While depressing, I find comfort in reading the letters on your sight.  Only an RLS sufferer can understand these perplexing and life diminishing symptoms.  I don't want to whine about my difficulty but once and awhile it is nice to know that someone else truly understands and that we are not, as uninformed physicians so often state, in need of a psych consult.
Arlington, Washington

Medical Reply

The pain in your legs may be due to a peripheral neuropathy that occurs with RLS.  It sometimes responds to Mirapex but may need pain medication (Vicodin) or Neurontin.  The swelling has nothing to do with RLS and is due to some other reason.
Parkinson's disease and RLS have nothing to do with each other except for the fact that dopamine agonists (Mirapex, Requip) help both diseases.

Sent: Saturday, May 31, 2003 12:42 AM
Subject: Restless legs question...

My girlfriend suffers from what seems to be RLS.  I am trying anything I can to help her. 

Have there been any reports of hot water helping RLS symptoms?  I have thought about saving and buying a hot tub for us in hopes that the hot water might help.

Greg B.,
Seattle, WA

Medical Reply

I would not go out and buy a hot tub based on possible benefits for RLS.  Many patients find that baths or showers of hot, cold or alternating hot and cold water may temporarily (often enough to help get to sleep).  But before you buy one, make sure that this treatment actually helps your girlfriend.

Sent: Saturday, May 31, 2003 9:10 PM
Subject: Blessed Relief!
I have just found a miraculous device with which to treat my horrendous case of RLS, which I have had with increasing severity since age 10!  It is from Brookstone (a store, catalog and website company) and is called the Ottoman 2.0.  It is an electric "footstool" with grooves to place your legs in, which kneads your calves while you just relax. 

For the first time in years, I can watch TV without my legs flying around all over the place. I sleep better at night after using it in the evenings, too.  It cost $250.  If you have a couple of thousand dollars lying around, you can get a massage chair with a built on Ottoman.  BTW, I have NO monetary, investment or business connections with Brookstone or the product.

I just know what it is to suffer RLS, and now I seem to have found, if not a cure, at least a treatment and blessed relief!  Hope you all can give it a try!!! 


Medical Reply

Many RLS sufferers have found that massaging their legs to be helpful so it does make sense that a vibrating device would provide relief (for some, but not all RLS patients). 

Sent: Sunday, June 01, 2003 12:45 AM
Subject: It's 2:40 AM & I'm Awake!

Thank you for this web site.  I am 37 years old and I can remember having RLS all of my life. Is Parkinson's Disease related to RLS?  My grandfather died of Parkinson's a few years back. 

My mother delivered me when she was 6 1/2 months pregnant.  This was due to her taking an overdose of quinine in which she was trying to abort.  I can't help but believe, it's like I've had withdrawal symptoms from the quinine all of my life.

The only medication that I am on is Dextroamphetamine for ADHD, one a day.   Last night I went to sleep at 4 AM.  Some nights are worse than others.  My doctor prescribed Amitriptyline tablets 25 mg, one at bedtime.  I've tried cutting them into four's but they are still too strong for me to take and still get up the next day. 

Thanks for letting me sound off,

Medical Reply

Parkinson's disease has nothing to do with RLS except that similar medications (the dopamine agonists) help both conditions.  Quinine at regular doses or even with overdoses have nothing to do with RLS and should not have caused your RLS problem. 
Amitriptyline has a much better chance or worsening RLS than helping.  It is often used as a sleeping pill but there are much better ways of treating RLS.  Mirapex or Requip work very well and should allow you to be symptoms free and live a normal life.

Sent: Sunday, June 01, 2003 10:01 PM
Subject: can RLS be from Paxil withdrawal?

My Dr. recently switched me from Paxil, (which I was on for 8 years to treat depression & anxiety), to Wellbutrin. I requested a switch as Paxil had some side affects and I have been reading some negative things about it. I was on 20 mg per day.

I was happy that my withdrawals were not that bad at all, he did not wean me off since it was only 20 mg. I just started the Wellbutrin in its place. The last few nights I cant sleep because of the RLS, and I also feel the need to rub my arms as they feel restless too.

My question is, can this be from Paxil withdrawal? I did not have it before nor did I have it while on Paxil. If it is from withdrawal how long will it last? I take Klonopin at night if I really have to but do not want to start a new med. in addition to the Wellbutrin, which I think I am doing well on except for the RLS and lack of sleep.

Can you please answer these questions and give me your advice on how to deal with this? 

Medical Reply

Normally Paxil is worse for RLS than is Wellbutrin, but in your case it is quite possible that Paxil was actually helping your RLS and stopping it would thus make you worse.  There is no withdrawal problem with Paxil except for a gradual return of the problems that Paxil may have been improving.
If you must stay off Paxil, then perhaps another SSRI (Celexa, Prozac, Zoloft, etc.) may work better (but possibly worse for your depression/anxiety as it may be that this class of medication could not be as good as Wellbutrin, but only trial and error may elucidate this problem).
If no change from Wellbutrin is feasible, then the addition of Mirapex or Requip would be much better than Klonopin.

Sent: Monday, June 02, 2003 10:15 AM
Subject: RLS worse with medications?

I have a mild case of RLS.  Recently, it has gotten worse.  I just started taking Zyrtec and Nasacort for my allergies.  Is there any connection?  (I have also been taking a very low dose of Prozac for a few months but have not noticed any changes since starting that.) 

I feel like there is something seriously wrong with me.  I can not sit still at work.  I am going to stop taking all allergy meds for the time being.  Please let me know what you think.

Heather G.

Medical Reply


The Zyrtec is the most likely culprit.  Antihistamines are very common drugs that worsen RLS.  If you need an antihistamine, then Claritin, Clarinex, or Allegra are much better choices, but even they may cause worsening of RLS.  Your nasal spray, Nasacort, is fine.

Sent: Monday, June 02, 2003 12:10 PM
Subject: Mirapex and Xanax or Valium
Due to being the classic corporate stressed out male in my early 50's, and now seeing a therapist,  it appears that Xanax or Valium may be in my future,  for issues not at all sleep related.  Currently, I'm doing quite well treating my RLS Mirapex, so I want to make sure I inform my doctor of that fact.  

And then,  will the Xanax (or whatever) then be in lieu of the Mirapex or in addition to it?   I know that that is my internist's job to know such things, but I like to be forewarned.

Medical Reply

Stay on your Mirapex and Xanax can then be prescribed only to treat your anxiety.  For chronic anxiety (more than 2-3 weeks), an antidepressant/anxiety medication (the SSRI's, Wellbutrin, etc.) are much better choices. They cause less (if any) sedation and are not addictive.

Sent: Monday, June 02, 2003 8:01 PM
Subject: RLS

I've been dealing with this condition for about 15 years.  It may have contributed to my marriage break down.  Always feeling tired and no energy to do things. 

About  three or four years ago I tried marijuana.  It worked beautifully.  I wait till the twitching starts and just take one puff.  That is enough for about an hour.  Then when the condition reasserts itself, I have another puff and I am often now gone for the night.  It works for me and is far cheaper than prescription drugs. 

I wake up with no effects from the marijuana that I'm aware of.  The smoking aspect is the down side.  I've tried mixing the marijuana with chocolate, works fine but uses lots of the marijuana.


Medical Reply

Many RLS patients have noted that smoking marijuana helps (most often dramatically) their RLS symptoms.  The only problems are cost and the legal status of using the drug.
Mirapex or Requip also work well, are covered by insurance and are legal.

Sent: Wednesday, June 04, 2003 4:41 AM
Subject: RLS

I have been given several medications  . I am having a difficult time finding a doctor that  will address my RLS problem. Your site has been most helpful and I have been researching RLS treatment. The medications my doctor has me on are Mirapex,.125 3 daily, Zoloft, Restoril and Vicodin for pain . I do not take Vicodin unless pain is bad.

My vision is blurred at times in my right eye and I am wondering if this could be caused by medication. I do feel like I may be on too much medication but I am desperate for a nights sleep.

Any suggestions you have would be appreciated. 


Medical Reply

If the medication was causing blurred vision, it should cause it in both eyes, not just one eye.
You may need more Mirapex and Vicodin (you can also alternate Vicodin with Ultram if there is a concern about addiction to narcotics).
Zoloft can worsen RLS so I am not sure why your doctor added this medication (unless he is treating you with this drug for depression).  If you still can't sleep, Ambien may be added as a sleeping pill.

Sent: Wednesday, June 04, 2003 9:23 AM
Subject: REQUIP

I am 49 years old and have had RLS for about 10 yrs.  I have been taking Requip for the last 4 months ( .25mg twice a day) and it has helped me sleep and I have do not have the daytime symptoms that I had with Sinemet, I will also  take one half a pill of Vicodin on those nights that the Requip is not working, which varies week to week, from none to three times a week. 

I have noticed that I feel tired and fatigued during the day and wonder if the Requip could be causing the problem.

Medical Reply

It is very hard to say if Requip is causing your daytime fatigue but one way to settle this would be to only use Vicodin for a few nights and see how you feel the next day.

Sent: Wednesday, June 04, 2003 9:23 AM
Subject: Kicking legs at night

I seemed to kick my legs constantly every night.  The odd thing is that I sleep through it but my husband doesn't.  It has now become a problem in that my husband can not sleep with me.  If this is RLS, then why am I not waking up? 

I had a very severe case of Guillian Barre in 1988 requiring a ventilator for assisted breathing and since this illness have kicked in my sleep.  For some reason, over the years it continues to get worse.  Any thoughts?

Thank you,
Kim W.

Medical Reply

It is likely that you have PLMD (your leg jerks) and not RLS.  We do not know why this occurs but it is not related to Guillian Barre syndrome.
Most patients with PLMD do not get arousals with their leg kicks (and thus are not aware of their leg movements) and thus only their bed partners will notice and be bothered by this problem.  If you are experiencing daytime fatigue or sleepiness then you may be affected by your PLMD and a sleep study would help diagnose this problem and see if it needs medical treatment.

Sent: Wednesday, June 04, 2003 2:37 PM
Subject: Weird creepy crawlies in groin?

I have been suffering with RLS for years...I took Klonopin, Paxil, etc.  I am also recovering from compulsive overeating by the 12 Steps of Alcoholics Anonymous.  Last fall, I decided to quit all drugs cold turkey because I felt very "foggy," with memory loss, etc.  It was heartening to read other letters and your feedback on the "normalcy" of memory loss.

I have been suffering with menopause and very acute depression for the last several months.  A psychiatrist has prescribed 200 mg of Wellbutrin which I have been taking for about 3 weeks...I began with just 100 mg for the first week.

I feel very anxious which I was told could be expected at first...I have some symptoms of RLS...but the most discomfort I am having is groin creepy crawlies...RLS in the groin this it the meds?  I also take Synthroid and Reminfemin and Vitamin E. 

Thank you, thank you, thank you...for your Website.

Medical Reply

RLS can occur anywhere in the body where there are muscles.  The groin is not the most common place to experience RLS but your are definitely not alone with this complaint. 
Wellbutrin is supposed to be one of the better antidepressant drugs for RLS but is possible that it could be bothering your RLS (the only way to tell is to go off and back on the medication and see if the RLS changes).  Your other medications do not interact with RLS.
If your RLS is bothering you, then Mirapex or Requip may work well and hopefully you will not have any daytime problems.

Sent: Thursday, June 05, 2003 10:50 AM
Subject: RLS better with Lortab?
Thanks for your website. I have finally figured out what this nagging disorder is.  I thought maybe just everyone maybe has these nasty nights trying to sleep and stay still. I guess not.  I just never knew how to explain why I cant sleep. It has to be RLS.

I have every symptom, the squirmish, jittery, tossing and turning sometimes burning sensations from my trunk down. only now can I say RLS! I am 31, an active healthy male physically and mentally. I have tried Ambien 10 mg for sleep, it put me to sleep, but for about 2 hours, but it never stopped the RLS.

Only since reading articles of this syndrome I have found what works absolute all night for me. A few weeks back I had some wisdom teeth removed and my dentist prescribed me a med called Lortab 10/500.  I had some left, and after reading articles on RLS, decided to try them for it. the result was amazing. 

No RLS on those days! I know they are for pain, but they worked every time before bed. now the hard part. How do I tell my doctor, or neurologist this without them looking at me funny?

Thank you,

Medical Reply

Just tell them that you have the classic symptoms of RLS and need to be treated (the same as if you had asthma, arthritis, diabetes, etc.).
Lortab is a very effective RLS medication but should only be used when other medications that are not addictive have not helped.  Have your doctor prescribe either Mirapex or Requip (as per the instructions on my RLS Treatment Page) and your RLS symptoms should be taken care of without the need for narcotics.

Sent: Friday, June 06, 2003 1:48 PM
Subject: Question about RLS and CFS

Thank you so much for helping us online. I have been diagnosed with Chronic Fatigue Syndrome. (If you are familiar with this condition, you'll know that this is a very unfortunate choice of names for it.) I have had RLS for about 10 years, but it was always mild until I developed CFS (after a serious viral infection two years ago). With this new condition, the RLS got much worse but after my doctor checked my ferritin levels and found them below 50, he approved my taking iron and, along with leg wrapping, that has been giving me enough relief.

However, the past two weeks, the RLS has suddenly increased in intensity. Just as an example, last night, after initially falling asleep,  I was up for two hours with RLS in one leg and then after falling asleep for two hours, was up for three hours with RLS in the other leg. As you can imagine, this is devastating for someone suffering from CFS. I can barely function today. I regularly take a small amount of Xanax (.37 mg) each night in conjunction with the CFS because it helps diminish the body pulsating which keeps me from getting to sleep. I don't want to increase that dose because I don't want to get used to a higher dose that would then require drug holidays. In the past, my doctor has not wanted to prescribe any of the Parkinson's medications for the RLS because he's concerned they will exacerbate the CFS symptoms.

So, I feel at a loss as to what steps to take next. My doctor is very receptive to my feedback and I'm seeing him next week. Can you tell me what you advise for someone with both RLS and CFS? Again, I appreciate this service so much.

Toni B.

Medical Reply

CFS is not well understood and may in fact be due to many other diseases.  It is not uncommon for patients with CFS and RLS to have no CFS problems once their RLS is adequately treated.
There is no medical information about any drug making CFS worse (or even better).  I treat my RLS with CFS with Mirapex or Requip which generally works very well.

Sent: Friday, June 06, 2003 3:44 PM
Subject: Possible Treatment (works for me)

I have what I would describe as a moderate case of RLS. It doesn't happen every night, almost never in the daytime, but when it does occur it can be very bothersome. I tried several non-medication approaches and have found one that works 100% of the time for me.

I am a big guy (6'4" and 240lbs) so this will have to be scaled down to suit smaller people, but, I have my 11 year old daughter walk on my legs. She weighs about 100 lbs. I mention this only because the pressure of the massage therapy would have to be significant to work. I lay on my stomach and have her walk up and down my legs to the knee, and then (and this is crucial to the effectiveness) she stands on my rear end with her heel pressing directly on my sciatic nerve in the hip socket. She moves the pressure up and down a bit until the whole sciatic nerve has received a strong dose of "acupressure".

For other people, a very vigorous massage with some strong pressure would probably work. For the sciatic pressure I'd still guess you would need someone to use their elbow and really press hard. Like I said, it should be close to the point of pain to over-stimulate the nerve, but in the end, it's great.

I've been doing this now for about two years and it has never failed to work. During the process it may cause discomfort for some people, but in the end, your legs feel completely relaxed and I notice that I rarely have a reoccurrence for several days afterward.

Hope this helps,
Robert G.

Medical Reply

Leg wrapping, massage, etc. is often very helpful for RLS sufferers.  These tricks work mostly for mild RLS cases (such as your case, which is mild despite your assessment of moderate)

Sent: Saturday, June 07, 2003 9:06 PM
Subject: RLS, drugs and epilepsy?

I have been diagnosed with RLS and have received treatment w/Mirapex but I am now at .5 mg and still have symptoms that sometimes effect the arms. The first time I had this was about 6 years ago while I was pregnant? Could that be the trigger?

I did not have it again until I started taking antidepressants last year  and now I finally am off Wellbutrin -the only one that worked, I am wondering if Paxil could have triggered the condition. Also, I had a left temporal lobectomy 11 years ago for epilepsy, complex partial seizures. I am seizure free but wonder if that might have caused this condition .

The drugs that I took for my seizures in the 80's were Tegretol and Depakote. I still wonder if this stuff isn't all interrelated?

Rosa M.

Medical Reply

There may be some interrelation between your epilepsy and RLS but this is not well understood.  Wellbutrin is one of the better tolerated antidepressants for RLS, but the other such as Paxil usually worsen RLS more than they help.
Pregnancy usually worsens RLS during the last half and especially third trimester.
Many anti-seizure drugs help RLS.

Sent: Sunday, June 08, 2003 1:58 PM
Subject: PLMS and iron levels
I wrote to you recently about my severe PLMS at night. I had tried various drugs without much success though small doses(0.5 mg) of Klonopin seem to help without next day sedation. On my last visit to my doctor I asked for a serum ferritin test as I had read that a low count might cause PLMS.

My reading was only 3 which was very low. Is it possible that this may be causing my PLMS and is iron supplementation likely to lead to an improvement?


Medical Reply

It may very well be that the low iron levels (your should now have serum iron levels checked in addition to ferritin) may be causing your PLMS.  There is a reasonable chance that increasing your iron levels (this may at times be difficult even with adequate oral iron supplements) may improve your PLMS.

Sent: Wednesday, June 11, 2003 8:22 PM
Subject: Daytime naps for RLS/PLMD?
Today I found out just how severe my restless leg syndrome is.  I have the sensation and the leg jerks and shoulders, arms and legs.  I'm not sure yet what the true numbers are but the sleep disorder doctor that it was severe and prescribed Mirapex.
I think this began about 30 years ago when I was in high school and I have approached this as a psychiatric problem as opposed to a sleep problem because I fall asleep at night and wake in the morning.  The daytime/resting stuff was possibly PTSD (Post Traumatic Stress Disorder).  The psychiatric stuff never really fit well.  It was lucky that I got a referral to a sleep doctor.
I understand that Mirapex has a dangerous side effect - especially for drivers (of which I am one.)  And I am prone to bad side effects in drugs that I  tried in the past, psychotropic and others.  I am currently taking Celexa and find that it takes the edge off the sensory part of RLS among other things.  I have time to change my sleeping patterns and take day-time naps.  I'm wondering what is probably the best route to go: meds or changing sleep patterns.
Please advise,
Lucy in Ontario, Canada

Medical Reply

If you have PLMD (the leg jerks) then they will occur even with daytime naps (the PLMD prevents the sleep from being restorative) thus the daytime naps will not be helpful and should be avoided.
Mirapex can cause daytime sleepiness (strangely enough it can also cause insomnia) but this usually occurs at higher doses (above 1-1.25 mg per day).

Sent: Friday, June 13, 2003 11:42 PM
Subject: Zoloft and restless legs?
I have taken Mirapex for a few years and it worked so well for awhile.  Lately, it does not help (only sometimes). 
My doctor has now prescribed Zoloft for restless legs.  I took one Zoloft this morning and tonight my legs are worse than ever .   He told me that since Mirapex is no longer working well, I must need an SSRI rather than the Mirapex dopamine medication.
I have a feeling that Zoloft may not be right and would like to know before I take it for a time and then  perhaps develop worsening symptoms from the Zoloft and then have to wean myself off of it (another problem I'd have to deal with).
What are your thoughts on this?

Medical Reply

The chances are excellent that Zoloft is causing worsening of your RLS symptoms as SSRI medications worsen RLS much more often than helping RLS (about 60% worsen, 20% remain the same and 20% get better).
The worsening of RLS (before taking Zoloft) while on Mirapex can be due to a few things.  It might be that your RLS is naturally worsening, in which case an increase in the dose of Mirapex may be helpful.  Other possibilities include tolerance or augmentation developing to the drug.  In this case, sometimes an increase in the dose will also be helpful, a change to another dopamine agonist like Requip may improve the situation or you may need to change to another class of RLS medication (not an SSRI).

Sent: Saturday, June 14, 2003 9:02 AM
Subject: Mirapex questions?

I am 61 (female) and was diagnosed with RLS about six years ago.  I was also diagnosed as having degenerative disease of the cervical area with mild radiculopathy.  I have symptoms in my arms as well as my legs and occasionally the creepy crawlies on my face.    The neurologist originally gave me Klonopin which gave me a terrible morning hangover.  The Klonopin and several other meds for my neck made my snoring worse.

I had a sleep study and I do not have PLMD.  I did however snore and had some mild hyponeas.  It was suggested I lose weight and use CPAP in the meantime.  I could not tolerate the CPAP on my face, even for a few minutes. 

I surfed the web and found the RLS list group and this site.  At my suggestion the neurologist gave me the Xanax, which worked pretty well with no side effects. I have been taking the same dose, 0.5 at bed time for several years. I also have a script for Ambien which I only take occasionally, two or three times a month.  (I save those for really bad nights.)

I retired, lost 60 pounds, and worked on life style issues.  According to my husband my snoring is rare, usually related to a heavy late meal with wine or a flare up of my nasal allergies.  I have done really well the last four years.  I still had the sensations, including during the day, but as long as I could sleep I have been quite able to ignore them.

Recently I had a worsening of my legs paresthesia, with more frequently leg/foot cramps and I started having occasional palpitations.  In April I had a complete evaluation for the heart palpitations.  The physician (new to me) seemed fairly knowledgeable of RLS, and asked lots of questions about my sleep study and my current sleep patterns.  I had a complete cardiac workup including a stress echo.  I did great on the stress echo and they can find nothing wrong with my heart.

He thinks the palpitations may be related to poor sleep.  The plan was to work on improving my sleep, starting with better treatment of my allergies and nasal stuffiness, and then progress to improving the RLS.  He renewed my Xanax and Ambien, and gave me samples and a prescription for Mirapex, plus samples of several allergy meds. 

Finding something that works for my allergies has been of course difficult.  The best solution seems to me to be more consistent use of Flonase.  (I was only using it when really stuffy).  I've tried Astelin, not sure that hasn't made things worse.  Couldn't tolerate Zyrtec (though he only had a few pills for a sample).  I started using Claritin occasionally when I know I'm going to be outside all day and Flonase, and an occasional Tylenol Sinus (one half dose) for sinus headaches. 

I tried the Quinine for a few days and I didn't notice any difference.

So now I'm faced with the Mirapex.  I read your site on starting, and have started at half of the 1.25 for five days.  So far no side effects but no difference in my legs or ability to sleep.  Tonight I will up the dose to 1.25.

My questions really have to do the best strategy for starting this stuff.  Currently it takes about an hour or so to fall asleep, and I wake up once, maybe twice during the night.  I am able to sleep in the morning until I wake up.  Theoretically I get at least 7 hrs sleep a night.  The paresthesia and twitching start in the evening, especially when I am reading or watching TV, but can happen during the day.

I am taking the Mirapex 45 minutes before I go to bed.  Should I continue to slowly increase the dose at that time?  Or would it be better to start one dose earlier in the evening with another dose at bedtime.  Do you have any problem with continuing the Xanax for bedtime.  (I have taken monthly drug holidays from the Xanax and not needed an increase in the dose.)  I am more concerned about restful sleep than about my waking paresthesia, they really are not that bothersome.  I would really like to keep the Mirapex at as low a dose as possible. 

The palpitations are better since I have gotten serious about good sleep hygiene (no caffeine after breakfast, no TV news in the evening, etc.), but not gone.  My doctor would like for me to consider another sleep study but is supportive of trying medications first.

You have a wonderful site.  Thanks so much for your wonderful service to us many RLS sufferers. 

J. C. in Missouri

Medical Reply

Poor sleep has been associated with heart problems but not palpitations (which is an electrical problem and is likely occurring for no good reason).  Staying away from stimulants may be helpful.
Mirapex may need to be increased slowly (you write that you are on 1.25 mg but I am assuming that you are really taking .125 mg then increased to .25 mg???), by .125 mg increments on a weekly basis until RLS symptoms are improved.  Most people do well taking the drug one to two hours before bedtime.
There is a chance that taking another small dose of Mirapex an hour before your sit in the evening may help your paresthesia problem, but it is always best if you can get by without extra medication.
Taking drug holidays with Xanax should help maintain its potency.  I also have my patients alternate this drug with Ambien rather than taking them together.
As you have no problems with PLMD and now do not snore, I do not see the reason for having another sleep study.

Sent: Sunday, June 15, 2003 8:11 PM
Subject: CRF (Chronic Renal Failure) and RLS
My husband lost a kidney to cancer in 1997. Since then the other kidney is failing due to IGAN.  He began peritoneal dialysis in January 2001.  He has, in the past 6 months developed  RLS and it is worsening. 

His physicians have advised Tylenol PM, Quinine, and Clonidine.  He is currently dealing also with hyperparathyroidism.  I have not seen in research, any advice for someone with CRF.  Naturally, we would like to find a remedy that would not conflict with his current medications. 

We would appreciate any suggestions?

Maxine in NY

Medical Reply

CRF (Chronic Renal Failure) is one of the most common causes of acquired RLS.  It can be treated with sedatives like Xanax, Parkinson's disease drugs like Mirapex or even narcotic medication.  It often gets better when the BUN and creatinine (measures of kidney failure) improve with dialysis.
Tylenol PM contains antihistamine like sedatives which worsen RLS and are contraindicated for this problem.  Quinine is great for leg cramps but has no role at all for RLS.  Clonidine has been mentioned in one article for helping RLS in a minor way but really should not be used if RLS is the only consideration.

Sent: Monday, June 16, 2003 2:21 AM
Subject: I need RLS help!
I really need help. My RLS started last year, a couple of weeks after I ruptured a cervical disk, irritating a nerve. I had an MRI but I am not under a doctor care since he said it will just take time. I have been taking Effexor for about 7 years.

Before that I tried Prozac which caused severe movement and sleep problems. talking, hallucinations, tics, muscle spasms, shaking, muscle jerks. I would throw myself off the bed at night. They got better when I stopped the med and switched to Effexor.

I am also an alcoholic and to make it even worse I was a drug addict when I was 20 (Amphetamines). I started using again 2 years ago. I am 50 years old and am afraid of going to a doctor because I do not think they will help me. If I tell about my drinking and using, I will not be able to get any help.

What can I do? No, I will not get help for my addictions. I have done that before, and been clean for 20 years and it doesn't work. Do you think it is possible to find a doctor who would be willing to treat me for RLS? It is a 24 hour problem now and is making my life unbearable.

Would it help if I lowered the dose of Effexor? I take 225 mg now and could try 150 mg. Would that help?

Medical Reply

One of the best classes of drugs to treat RLS are the Parkinson's disease drugs (Mirapex or Requip) which are not addictive and can be taken without any regard for your past history of drug problems.  The trick is to find a doctor who is well versed enough in RLS and RLS drugs to treat you with one of those drugs.  Often a neurologist or sleep specialist will be comfortable treating with the newer and better drugs.

Sent: Monday, June 16, 2003 7:38 AM
Subject: Sheer Energy stocking for RLS?

I used to have RLS until I started noticing my body and its symptoms.  At first I noticed that when I would try to relax on the couch after a days work at the office that my legs were constantly twitching.  I could not rest until I changed into something less constrictive. 

Then my legs started bothering me when I was at work, sitting at the computer.  So finally I said that maybe my pantyhose do not allow the blood to flow properly in my legs and all.  For one week now I have not worn my Sheer Energy pantyhose and I have been sleeping so sound. 

I no longer have the urge to move my legs constantly before falling asleep.  I just hope this lasts.  Maybe this will work for others.

Kay N.

Medical Reply

I have no idea why that has helped you. Often RLS sufferers like to have their legs wrapped tightly which seems to help but that is the opposite of your situation.  I hope this lasts for you and please let us know if it does.

Sent: Monday, June 16, 2003 8:45 PM
Subject: Daytime RLS?
I developed severe RLS in 1994 after taking antidepressants. Before that, I only had trouble with it when I took a long car ride. Now I have it day and night and its in my arms and shoulders also. My doctor started me on Sinemet and eventually I got terrible rebound from it . 

For years, I took Mirapex .5 mg at night to help me sleep and 4 of the 50 mg Ultram tablets to help me during the day. I can't take Mirapex during the day- it puts me to sleep.  Now my doctor said  that I was on to high a dose of Ultram and she took me off Ultram and added 900 mg of Neurontin in addition to the Mirapex. 

I was nearly  crawling out of my skin during the day.  My doctor now has me on  Sinemet CR 50/200.  I still get crawly feelings during the day but I am allowed  2 Ultram.  After 1 experience with Sinemet rebound , I am a nervous wreck worrying about being on Sinemet again but the doctor said I wouldn't get rebound with the Sinemet CR.  

1. Do you think this is true?

2.  I was doing so much better with the Mirapex and 4 Ultram. Do you think that is too much Ultram to take on a daily basis?
3. I am 51 years old . I am so afraid that with the RLS being so bad already will it be able to be controlled as I get older? 

I guess most people hope to have a long life, but with the struggle I've had with this , the shorter my life, the better.  

Medical Reply

Rebound with Sinemet occurs in the early morning after the previous bedtime dose.  It occurs less with the CR formulation (slow release)  than with the immediate release dose.  Once a daily dose of more than 2 of the 25/100 tablets or one of the 50/200 tablets is reached, then augmentation become extremely likely.  You have a reasonable chance of not having trouble with your present dose.  It is better to switch to a dopamine agonist (Mirapex or Requip) which rarely have rebound problems and augmentation is much less likely.
Most patients would not have trouble with 4 Ultram tablets per day, but there is a small risk of addiction (in which case tolerance occurs).  One way around that is to alternate Ultram with a narcotic like Vicodin (3-4 days/week on one then switch to the other).  I have used this in many of my patients with great control of their RLS and no problems with addiction/tolerance.
RLS usually does worsen with age but it can be very unpredictable.  The bottom line is that with correct medication almost all RLS sufferers can be helped to live normal lives without much (or often any) RLS symptoms and with no significant side effects from medication.

Sent: Friday, June 20, 2003 9:25 AM
Subject: Vitamins helped me
Recently, I had a pretty bad case of restless legs syndrome and so I know how awful it is. I got acquainted with your website when doing research on how to deal with  RLS. The RLS started early this year, and coincided with extra stress about my job.

I had mild RLS before, but it got much worse this year and it was driving me crazy. I lost a lot of sleep. I had it a couple of months and tried various things that didn't work very well before I finally went to the doctor, and he told me to try increasing my vitamin intake, especially magnesium and calcium, and also selenium. 

Below are the vitamin brands  that were recommended to me by the vitamin sales clerk, who, coincidentally, had a boyfriend with the same problem and she said they worked for him.  Since taking these three vitamin brands every day, the RLS has subsided. I really think these vitamins are what did it.

I recommend at least trying vitamins before taking medication even though I have noticed some people are skeptical about vitamins.  What helped me was increasing my intake of these vitamins, the lower dosages weren't enough.

I am extremely grateful to have found something that works, and I hope it helps others. I usually take these at night, and I have noticed if there is any indication that the RLS is going to start up at night, it usually goes away after I take the vitamins, or at least it becomes mild enough so that I can sleep. Also, they are expensive, but worth it!  

Here is what I take:

Medical Reply

Vitamins have been tried by many RLS sufferers with mixed and usually unimpressive results.  Why some patients seem to be helped (placebo effect??) is not understood.

Sent: Friday, June 20, 2003 5:24 PM
Subject: Mirapex and low blood pressure?
I'm a 32 year old male recently diagnosed with RLS.  My physician started me on Sinemet (25/100).  I saw immediate improvement but would need second dose during the night.  Last month I switched to the CR formula 2 of the 25/100 tablets every day.  While my symptoms are better, the quality of sleep is still not great and I have substantial symptoms during the day.
From my reading it appears Mirapex may be a better alternative.  However, my blood pressure runs on the low side 105-65 (sometimes even lower).  Would this prevent me from taking the Mirapex?
Thanks for your great site,
Chris T.

Medical Reply

It is likely that you are getting rebound and augmentation from the Sinemet (quite common).  Mirapex has been associated with low blood pressure but unless you experience that side effect yourself, it is generally not a big clinical problem.  I have very few patients (even with low starting blood pressures) who have not been able to take Mirapex due to further lowering of their pressure.

Sent: Friday, June 20, 2003 5:56 PM
Subject: Methadone for severe RLS?

I saw my neurologist this week and we discussed the possibility of in the future using methadone. I have severe RLS night and most of the day in my legs, arms, shoulders. I haven't had much luck with Mirapex, Neurontin, Sinemet. I take Ultram alternating with Vicodin and at night Mirapex knocks me out enough so I get maybe 4 hours of sleep. My doctor doesn't know to much about methadone.

1. I am 50 years old ,is that too young to think about using methadone considering I would probably need it for so many years.

2. If it was alternated with Ultram , how many days would you take each
3. I read in another letter that you use enough to barely cover your symptoms. Does that mean there would be times I would still pace the floor. 
4. Would it work for someone that has symptoms both night and day?

I appreciate any info I could take back to my doctor.

Medical Reply

There is no age limit for using Methadone.  If used properly addiction and tolerance can be avoided indefinitely.  RLS symptoms should be treated such that only a minimal trace (not enough to bother you) should be left.  This assures that you are not overusing the drug however using just a bit more to get rid of 100% of RLS symptoms may be quite safe if you can determine the amount of drug to just achieve that.
There is no absolute right way to alternate Methadone and Ultram but I have found that alternating every 3-4 days of each per week is a nice rotation that works well.
Methadone is usually reserved for RLS patients who have severe RLS with day and nighttime symptoms.

Sent: Saturday, June 21, 2003 10:24 AM
Subject: How to use Methadone for RLS?
I took my first methadone pill last night, having gotten a prescription from primary doctor.  He is not too "up" on RLS but is so willing to accommodate me when possible.  He prescribed 10 mg twice a-day.  I took only 10 mg last night and slept quite well for first time in months and do not seem to have any sleep hangover this a.m. 

I also take .75 mg Mirapex.  I have been on Mirapex nearly 6-years.  I want to stop this medication but can't seem to do that. I have  RLS twice as bad when I try cutting down. 

Could Methadone be my only drug for RLS in the event I can wean off Mirapex?  Will I need a drug holiday from Methadone and how do I go about this and with what drug?  I tried Ultram and did not like side effects as well as hydrocodone or Neurontin. 

I feel Methadone is my last resort, but I am afraid of it  and do not know exactly how to handle it.  Why are doctors so reluctant to prescribe this med for RLS?  I need help in understanding this drug. 

Thank you for your input,
Bon in Arizona 

Medical Reply

All narcotics are addictive in direct relation to their potency and methadone is one of the more potent narcotics.  That is why doctors are reluctant to use it.  In addition, this drug is most often used for Heroin addicts, so it has that stigma and most doctors do not have experience using it.
I have not had much of a problem with addiction to narcotics in general and methadone in particular when used in a supervised setting (meaning that I watch the dose that my patients are using very closely).  I find that using drug holidays or even better yet, alternating it with a non-narcotic drug on a regular basis.
I do have many patients using methadone as their only RLS drug.  In that case I try to have them take drug holidays of about 2-3 days every 2-4 weeks.  If their is another drug that they can take while on the drug holiday that may not work as well (such as Mirapex or Ultram) that may provide some relief then their drug holiday may be easier to survive.
The best situation is when there is another drug (like Ultram) which can be alternated on a regular basis (every 3-4 days) in which case there is virtually no chance of addiction or tolerance occurring.

Sent: Sunday, June 22, 2003 6:40 AM
Subject: Sweet Craving

I suffer from RLS and sleep very little  most nights.  I crave sweets and can't seem to control this eating  .  Could  it be the medication I take for RLS that is the cause of this craving for sweets?

I take  three of the .125 Mirapex tablets daily for RLS. I am also on hormone replacement and Zoloft. I have been taking Zoloft several years and don't think it is a factor in my insomnia.  It helped at one time for sleep .I think my RLS is getting worse because of age.  I am 63.

Thank you for your web site. It has answered a lot of questions,
TW  San Antonio

Medical Reply

Mirapex is not associated with a craving for sweets but anything is possible.  If your RLS is preventing you from sleeping then you need to either increase the dose or add other RLS medication to eliminate this problem. If your RLS is under good control and you just have insomnia then Ambien may be helpful.

Sent: Monday, June 23, 2003 9:24 PM
Subject: Can't stop moving!

I just started some research on RLS, have been suffering for approximately 2 years.  I have had RLS confirmed by a sleep study and  was found to be anemic at the time but blood work shows I'm fine now. 

I have been told there may be a link between the Coumadin I take everyday and my body' s ability to synthesize dopamine, causing the RLS.  Has anyone ever reported this kind of info or any type of treatment?  Any info would be greatly appreciated.

Medical Reply

RLS can only be diagnosed based on your clinical symptoms.  Sleep studies are only useful to assess whether or not PLMD is also occurring with the RLS and if the PLM's are causing arousals.
I know of no interaction between Coumadin and dopamine or RLS.  Iron deficiency anemia can worsen RLS and should be treated.

Sent: Tuesday, June 24, 2003 4:19 PM
Subject: long term pain med.
I take Ultram  (150mg per day) alternating with Vicodin after having no success with Parkinson's disease drugs. I am only 50 years old.  Is there any information about long term use of pain meds affecting kidneys or other organs? 

Is it unrealistic to expect to take pain meds for the rest of my life? 

Medical Reply

There is no known link with chronic narcotic/Ultram and organ damage.  It may be quite realistic that you will be on these drugs indefinitely until more progress is made in treating and understanding RLS.

Sent: Friday, June 27, 2003 1:19 PM
Subject: RLS/Requip/Ambien/ and Paxil CR

I was diagnosed RLS 9/02, did a month of Mirapex 0.25mg, nauseated constantly. Then I discontinued the Mirapex  and lived with it until July 1.   I had some self induced anxiety  July first went back to my neurologist and started Requip 0.25. mid July.  I hadn't mentioned the anxiety because I didn't at that time realize what it was.

My RLS symptoms are cool lower legs and needle feeling in both legs.  I take Requip 0.25mg at 7 pm and Ambien 10mg. at bedtime and sleep well but have the symptoms from 11am until I retire.  Just went to my internist with the anxiety symptoms and he prescribed Paxil CR 12.5 mg for 9 to 12 months.  I haven't started the Paxil CR because my RLS educational guide said a great percentage of people get worse RLS symptoms when taking the Paxil or Paxil CR. 

My neurologist also said I can take the Requip 0.25mg  at noon to see if it relieves my daytime symptoms.  I have yet to do this.  I did fax my internist to say I wanted to try to distress myself before going on the Paxil hopefully I won't need it . 

Any suggestions??  Since I have started the Requip at  7pm the last 2 nights I have noticed my tongue feels warm and prickly but that may also be due to the anxiety, or could be RLS symptom. Do you think I am on the right course? 

Sincerely, Betty

Medical Reply

I have many patients that take Mirapex or Requip a few times per day starting about one hour before symptoms usually onset.  Although SSRI's (Paxil) usually worsen RLS, they may be neutral or actually help.  Only trial and error will define this in any patient.
Your tongue problems could be either due to your medication or anxiety and stopping and starting the Requip should give you the answer.

Sent: Monday, June 30, 2003 8:21 PM
Subject: methadone side effects

I have just stopped Methadone after a three week trial, for both the RLS and fibromyalgia. I started with 10 mg twice a day.  With the very first pill both the RLS symptoms and the fibromyalgia pain were totally gone.  And I slept all night for the first time in many, many years.

But after the second dose I experienced vertigo and severe nausea.  Both got worse as time went on, and I started having wrenching abdominal cramps as well, plus indescribable headaches.  I tried adjusting the dosage down as far as I could, yet still controlling the symptoms, but that didn't work either.

Now I am entirely off the Methadone, and my health provider wants me to try Effexor, so I will.  What results have you seen with it?  And do you often see such bad side effects as those I experienced with the Methadone?????

Maryam in AZ

Medical Reply

Your side effects with methadone are very unusual but anything is possible.  I usually start with lower doses (5 mg or less per dose) and work up if I have to.  Effexor worsens RLS more often than helping.

Sent: Wednesday, July 02, 2003 8:30 PM
Subject: Restless Body as Opposed to Restless Leg
I experience the inch thick body suit filled with little worms on my head, face, back, legs and arms.  I don't experience it on the front of my body.  It doesn't bother me to go to sleep but will wake me up after about 4 hours and I have to get up and do something.  I can sleep fall asleep again. 

When I am stressed, the body sensations are there though usually it feels more like waves as opposed to the worms.  I did participate in a sleep study and have PLMD with a mild arousal rate.  My waking after 4 hours was also noted during the study.  I also did not have any REM sleep but I was told that that is not unusual during a sleep study.

I have not come across any information talking sensations in more than legs.  And the sensations are not so bothersome going to sleep but rather, they will wake me up after a certain length of time.  If I try to sleep during the day, the sensations are likely to be present and signal the end of a rest/nap.  Is there something else going on here?  Please advise.
Lucy in Ontario

Medical Reply

RLS can occur all over the body, especially when severe.  Mirapex or Requip are the drugs of choice to start with for this type of problem.  Often narcotics are also needed.

Sent: Monday, July 07, 2003 12:45 PM
Subject: Confused about strategy

I fortunate to have a GP who is willing to work with me.  With ferritin levels at 5, I tried iron supplementation but could not tolerate.  She has since started offering Metagenics products, and I am now trying these supplements, with good tolerance of their “Hemagenics Iron and B Vitamins” supplement.  I’m hoping this will help.

In the meantime, the doctor preferred to start with benzodiazepines rather than anti-Parkinson’s meds, and until recently I had had pretty good results with Xanax, beginning with .25 mg before bed (for about six months) then increasing to .5 mg before bed. 

When RLS “broke through” in the middle of the night, I got up, took 10 mg. Sonata, stood around doing crosswords for 20 minutes (quick onset) and went back to sleep.  Sonata is useful only if four hours of sleep time remain before arising – consequently I have had many too many days when I feel depressed and unable to function well (unacceptable in an educator).

Since reading your guidelines, I thought perhaps I had to increase Xanax because of neglecting to take drug holidays every two weeks.  I started doing this, first with Ambien which I found pretty useless for RLS.

Then I tried Mirapex .125.  Not a twitch in sight – nor a bit of sleep.  I have now tried Mirapex once last night and once a fortnight ago, with terrible insomnia both times.  (I had the same problem with Ultram which I had tried even before Xanax, but did discover that .5 mg Ultram is perfect to insure a calm night at the theater or a long drive.)

1.        Will this insomnia possibly go away if I continue with Mirapex?

2.        Should I try to stay with Xanax as long as possible or try something else;

3.        If something else, what?

Thank you for the clarity you are able to bring to a sleepless world!

LS, in California

Medical Reply

The insomnia will likely stay while on Mirapex.  It might be helpful to try Requip (it might not have the same side effects).  Be careful with Xanax as if you need to increase the dose then tolerance is likely about to occur.  If your RLS is taken care of, then you should need little or no sleeping pills.

Sent: Tuesday, July 08, 2003 7:21 PM
Subject: RLS better with Mirapex
I fought with the pain of RLS for about 20 years before I finally got relieve. I spent a lot of money and time, seeing different doctors and taking lots of different drugs. I had several sleepless nights, staying up nights walking the floor, crying. I had been told several times that the pain was all in my head and there wasn't anything wrong with me.

After finding the "right" doctor, I started taking Mirapex 0.5 mg and within a week or less I had no symptoms. The doctor was even amazed at the difference in my legs. I was able to sit still and not fidget around, for the first in years. I am still in shock at the fact that I can sleep through the night and not get woke up with leg pain. If there is anyone out there with indescribable leg pain, don't give up, keep looking and do not let anyone tell you that it is all in your head. Hope that you can find relief like I did.

Good luck, Kimber

Sent: Wednesday, July 09, 2003 12:26 PM
Subject: RLS treatment
I started experiencing sleep problems during college.  Over the years it progressed to a point where I felt needed help, so I went to see my primary care physician.  Looking back, I did an extremely poor job of describing my symptoms.  I told him I had a fairly difficult time falling asleep, mostly because I couldn't get comfortable, lots of tossing and turning, that I would have trouble staying asleep and would awaken 5-6 times per night, often entering just a light sleep, while tossing and turning all night.  I would wake in the morning feeling like I had run a marathon with my legs extremely fatigued and sore. 
I never described the tightness or discomfort in my legs, as I didn't make the connection.  I've been a runner all my life and stretching throughout the day to relieve this tightness has always been a part of my life, which I related to running.  I never made a connection between the discomfort in my legs and my sleep problems. 
First he tried Restoril with absolutely no success.  Then, thinking I might be depressed, he added Zoloft, then Ambien, then quinine.  Finally after two years he started me on Sinemet.  For the first time in years I slept well and woke up feeling rested.  However, after just a few months, I noticed the Sinemet was less and less effective.  I also noticed that when I was awake during the night I was constantly flexing both feet (moving my whole foot up and down) to relieve the discomfort (which is behind my kneecap and at the top of my calf).  I've done this for years and never really even noticed.   I started doing research and found your site. 
Based upon the info here, I talked my doctor into starting Mirapex.  I'm now three weeks into the drug and have had no success.  I started out with one .125 per day and have increased to the point where I'm taking one .125 at dinner and then .250 at bedtime.  Since the last increase, my nights have gotten worse,  the RLS doesn't seem any worse (it's still there) but I can't sleep, even with Ambien.  I have symptoms all day, but my primary concern right now is getting some sleep.
My doctor has no experience prescribing Mirapex
(although he's been very receptive to information downloaded from your site and and is really trying to help). He also thought Klonopin might help, but it only took a couple of nights to know it wasn't for me, so I turn to you for help.
I'm inclined to continue the Mirapex, continuing the increases,  until my next appointment in 3 weeks. 
Could this dosage of Mirapex (.325 daily) cause insomnia?  At what point should I stop increasing the Mirapex?  If there's no improvement before the next visit should I discuss Requip?  Or should I just go ahead and ask for a referral to a neurologist with experience treating RLS?
Thanks for taking the time to read this and all the help you provide,

Medical Reply

Mirapex can cause insomnia and you may need a higher dose to help your RLS (which may worsen your insomnia).  You may be able to take Mirapex during the daytime, but you will probably need another medication for your bedtime dose.
Requip is a good alternative choice but it may cause the same insomnia (this is hard to predict and is a very individual response).
A narcotic or Ultram taken at bedtime might help eliminate your RLS and not result in insomnia.

Sent: Friday, July 11, 2003 5:46 AM
Subject: RLS & PLMD

I am 33 years old and have had "the aches and fidgets" and insomnia for as long as I can remember.  My doctor finally convinced me to go to a Sleep Lab last winter. In December 2002 I was diagnosed with mild Sleep Apnea, as well as RLS and severe PLMD.

I've seen an Ear, Nose, and Throat doctor about the apnea, and he's not too worried about it, my numbers are barely outside the normal range. I'm not using a CPAP right now. My feeling is that I can't separate out symptoms of Apnea from the symptoms of the legs until I'm getting a full nights sleep. So the apnea isn't a big deal at the moment.

The RLS and PLMD are a different story. I'm on Mirapex and am currently taking .5mg at 9am, .5mg at 4pm and .75mg at bedtime. For the most part, this controls the RLS during the day pretty well. Some days are better than others. I'm still having a hard time remembering to take all these pills. I have a job that is quite active (forester, in the woods all day) so when I'm hiking around I don't really notice any symptoms.

When I get back to the office or if I'm in the office though, I know right away when I've forgotten a dose or it's past the time I try to take it, the legs start fidgeting. Are there any long acting drugs that are effective? I am still not sleeping through the night though. Some nights are better than others, and the Mirapex is helping. I think I've gone from about 2 hours of sleep a night to maybe 4.

I generally go to bed about 9 every night and fall asleep OK, but always wake up by 1 or 2 am and generally don't fall back asleep before I have to get up at 5am.  I have read other letters where people who wake up during the night will take another dose. Is this as good as it gets? Should I be expecting to sleep through the whole night, or is this unrealistic?

Everything I read makes it sound like both RLS and PLMD are very treatable. I also read that most people get relief from Mirapex at much lower doses. I still feel relatively new to this and am still learning foods and things that make it worse. I just found an RLS specialist in the area with the help of the RLS foundation website. I'm going to make an appointment to see him.

Anyway, I'm wondering if this is fairly typical or what? Thanks for this great website and Thanks in advance for your advice.


Medical Reply

Your RLS is typical of patients with severe RLS.  This is why you need more Mirapex than most (mild and moderate) RLS sufferers and why you also have trouble with the dose lasting very long and waking up in the night with trouble.
For severe RLS sufferers not responding completely to Mirapex, I like to add a narcotic medication.  Methadone is one of the best as it lasts up to 8 hours or longer.  Speak to your RLS specialist about using this type of drug.

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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