Patient letters on RLS symptoms and remedies- Page 10

 

Kicking RLS/PLMD Patient


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Date: Tue, 24 Feb 1998 15:15:59 -0800
Subject: RLS symptoms

I was so glad to find any information on this condition. I did not even know it existed until 2 weeks ago. What a relief to find out that there are other people suffering from this condition!

I am sleeping only 2 to 3 hrs. a night the doctor has tried me on Trazadone, Amitriptyline, Ultram and none of these seem to help. It is getting to be a desperate situation, because I just can't sleep! Any suggestions?

Medical Reply

The trazadone and amitriptyline are both antidepressants that can actually worsen RLS. If you are not taking them for depression, then you may want to talk to your doctor about discontinuing them.

Ultram usually works well, but not for everyone. Vicodin or Tylenol with Codeine may work better. The Parkinson's disease medications (such as Permax) also are very helpful.

You would likely sleep better with a sedative (such as Xanax or Ambien) at bedtime, which is very common RLS therapy.

See our RLS Treatment Page for more details.


Date: Thu, 26 Feb 1998 23:50:07 EST
Subject: RLS

Well, it is the middle of the night and I am up reading about RLS again. I am sitting here shaking my legs and being jealous of my husband who is sound asleep.

I have been diagnosed now for about a year and the symptoms are getting worse and worse. The Dr just switched me to Permax and I am getting no relief at all from it. I am also worried about my blood pressure. It is always low and I am experiencing some weird effects. After I take the medication I notice that I am seeing spots in front of my eyes and I am very weak. I called the Dr today and he will review what is going on. I just want some sleep. I read about the opioids, but I am a recovering alcoholic, 13 years, and I am afraid of addiction. Although opioids were not my drug of choice, speed was, I am still not sure of taking any of these medications on a regular basis.

I was wondering if anyone has found any relation to food and RLS, it seems worse on the nights that my husband insists on eating steak. (tonight this happened) I would appreciate feed back, the Sinemet is not working and the Permax offers nothing.

Help,
M. H.

Medical Reply

There is always a concern about getting addicted to opioids, especially in people with other previous drug addictions (being addicted to one drug does predispose you to a higher potential to being addicted to other drugs). The trick with the opioids is to take only enough to relieve about 80-90% of the RLS symptoms. The addictive problem occurs when you overshoot the control of RLS and are taking too much of the drug (more than needed for relief of the RLS symptoms).

Taking drug holidays (2 days off the drug every 2 weeks) also helps deter the development of tolerance and addiction.

You do not say what dose of Permax you are taking. It could be that you need a higher dose. I would stay of low dose Sinemet only as this drug can cause problems at higher doses.

The addition of a bedtime sedative may also be helpful to enable you to sleep at night.

Food is very often a trigger of RLS, but it seems that different people react differently to foods. There seems to be no consistent reactions to foods, except for few listed on our Treatment Page.


Date: Sun, 01 Mar 1998 10:26:25 -0500
Subject: Doctor likes his/her drugs

I am an R.N. in Ontario and am a bit distressed to read all the medical advice advocating Halcion. This is a dangerous and highly addictive medication. I also note that none of the letters I read said that anyone trying the Xanax, Halcion route had any success.

I would strongly suggest a long talk with your pharmacist before trying these drugs. Some doctors just love sedatives. To the point of being dangerous. I have seen it too many times. Doctors know little bits about medications, simply because they can't know everything. The pharmacist is more informed about the finer points of each medication.

I actually started to read this RLS page to seek some information on Multiple Sclerosis and RLS. I haven't been on all the pages yet but if anyone has any helpful info I'd really appreciate it.

Thanks, Vici Mc
Ontario, Canada

Medical Reply

We do recommend sedatives for RLS, but Halcion is not at the top of our list. Halcion does have addictive potentials (as do all the sedative drugs) and that is why we very strongly recommend drug holidays and using the medications at the lowest dose possible.

The sedatives, including Halcion, can be used very effectively and safely, if the above guidelines are followed carefully. Many drugs have good and bad sides, but that should not eliminate them for use in specific disorders, when appropriate.

Doctors sometime do not know all the side effects of the medications that they prescribe, and many doctors do prescribe sedatives too readily, but again, that should not preclude the use of sedative medications by RLS specialists who are extremely familiar with these drugs.


Date: Sun, 1 Mar 1998 19:15:39 EST
Subject: Car seats

I have found that sitting down in a hole (i.e. low car seats) actually stimulates pain in knees and upper rear legs. I take Vicodin and Ultram for this. On my computer work, I find that sitting in a tall, drafting table chair with the monitor tilted, enables me to sit much longer.

Thinking of switching from my Toyota Cressida (very low cushy seats) to an SUV like a Toyota Four Runner with very tall seats. There is even enough headroom to put a pillow to get the sitting higher.

I don't know if it is the angle of the legs, or the ability to let my legs occasionally swing free, but I feel better in a tall seat. Ten minutes in my Cressida, and I'm looking for my pill bag.

Any comments?
John

Medical Reply

This is the first we have heard about car seats and RLS. We will post this information on our web site and see if we can find others with the same or similar problems.


Date: Mon, 02 Mar 1998 11:01:54 -0800
Subject: Restless Leg Syndrome remedy (for me).

I am a 38 year old female who has suffered from periodic RLS since I was a teenager. The first time I can really remember suffering from this disorder was when I was 15 and anorexic. I got over my anorexia and also my RLS to a certain degree. It would periodically bother me (maybe once or twice a month) for the next few years. Then when I was about 32 I had a very bad bout with it. For about 2 weeks I was up for 4-5 hours a night. The sensation alone was enough to drive me crazy. I then read somewhere that anemia could cause RLS.

I asked the doctor to test the iron levels in my blood. They were "low normal". I decided to start taking an extra iron tablet (I was already taking a multiple vitamin everyday). After about 1 and 1/2 weeks of taking the extra iron my symptoms almost disappeared. Since then I make sure to take an iron tablet. I would still get periodic episodes of RLS but it would usually only be 2 or 3 times a month and I would only be up for about 1/2 hour to 1 hour a night.

Recently I became pregnant for the second time. I had no problems with my first child with RLS, in fact I slept better than I had in years. So I was unpleasantly surprised when at about 5-6 weeks along I started suffering the worst RLS symptoms I'd ever had in my life. That along with morning sickness made me almost suicidal. I was lucky to get 2-3 hours of fitful sleep a night (I work full-time so was unable to sleep during the day). In desperation I asked my doctor to again do a blood test to see if I was anemic. My iron levels were fine. I then read in an Alternative Medicine book that Vitamin E has been very helpful for some patients suffering from RLS. I started taking Vitamin E (and eating lots of avocados..for some reason I was craving them). My symptoms almost disappeared in less than 1 week. Since I've been taking the vitamin E I've been symptom free. (I still continue to take my extra iron also).

However I should mention that at the same time I started taking Vitamin E I also started taking extra folic acid. I had read that pregnant women should take 400 mcg of folic acid which I had been taking all along. But I wondered if my body needed more so I started taking an extra 800 mcg of folic acid (my doctor assured me the extra folic acid was safe to take). Since folic acid can aid in the absorption of iron I'm not sure if it's the Vitamin E or the folic acid (or both) that has helped.

In summary I think many of the RLS symptoms may be related to nutrition and (maybe) no drugs are needed. The reason I first started looking into any nutritional deficiencies I may have was the fact that I first suffered my worst bout of RLS when I was anorexic and therefore extremely deficient in many vitamins and minerals. The fact that the symptoms went away as soon as I was eating healthy again underscored that fact.

By the way, both my father and sister also suffer from RLS. My mother and brother do not.

-- Alison

Medical Reply

Nutrition can be very important for RLS. As you have already noted, Iron therapy is often a key factor in RLS, and all RLS patients should be checked for iron levels and serum ferritin (which is the more sensitive test for iron deficiency).

We have not heard of any medical reports of Vitamin E helping RLS, but there are always anecdotal reports of people being helped by this treatment. It is likely that the folic acid that you took at the same time with Vitamin E. Folic acid has been known to help RLS, so that is the more likely agent which helped you.

Check out our web page for more discussion of nutrition and iron/folic acid therapy.


Date: Sun, 18 Jan 1998 01:28:48 EST
Subject: RLS

Female - age 61

I know this is going to really sound crazy...and it honestly is not a joke...but sometimes when I get RLS at night, I feel all these deep, intense nerve feelings that are so difficult to describe. At times, they seem to radiate to my clitoral area, as if I were on the verge of, or in great need of, an orgasm....and indeed, quite often, an orgasm calms me down enough to lie still and go to sleep. It's as if my nerves needed be pushed to the exploding limit, or a strong, convulsive spasm, in order to be able to relax.

Has anyone else ever had this feeling? Does this make any sense at at neurologically?

Hoping to hear from you.

Medical Reply

Your experiences are not uncommon. Several female patients have noticed a relationship between orgasm and RLS. Some RLS sufferers get worse with an orgasm and others like you seem to get relief.

The neurological explanation of this does not exist as we do not know the cause or physiology of RLS.


Date: Tue, 03 Mar 1998 13:07:21 -0800
Subject: Trazadone

I am writing again to find out a little more about Trazadone. Is this in the MAO inhibitor family?

And, also do you know anything about St. John's Wort? I have heard that there is a list of foods that should not be used when on these meds. Any info would be appreciated.

Thank-you,
Donna

Medical Reply

Trazadone (Desyrel) is in a class by itself. The MAO inhibitors are Nardil and Parnate. There are no foods that interact with trazadone.

St. John's Wort has antidepressant activity. We know less about how it works or what it may interact with.


Date: Tue, 03 Mar 1998 10:55:24 -0800
Subject: RLS symptoms

A few days ago, I found out about an herb called Valerian root. I t is supposed to be a natural sedative widely used in France. I just want to say that I actually got 5 hours of sleep last night! You have to be careful about mixing it with other sedatives{prescription and otherwise}, but I am cautiously optimistic. Has anyone else with RLS ever tried this, and if so what results have they had?

Hopefully yours,
Donna

Medical Reply

Valerian root is an over the counter product that has not been studied medically (in current medical journals, to the best of our knowledge). Any sedative may help RLS, so if it does promote sleep in you, it would not be surprising that it would be helpful for you RLS.

We will post your note on our web page and see if others have any experience with this product.


Date: Mon, 02 Mar 1998 12:35:36 -0800
Subject: Re: RLS

Are there any statistics out there showing long term health affects from taking the anti-Parkinson's drugs like Permax. For instance, some drugs are hard on the liver or kidneys, etc. This was something I was discussing with my doctor -- he hasn't seen any. I'm 38 and its become an issue with me.

Barbara L.

Medical Reply

There are no long term chemical effects on any organs in the body from the Parkinson's disease medications. The only exception is the brain. Long term use has caused a movement disorder called dyskinesia.

These problems seem to occur only in Parkinson's patients given these medications and not in RLS patients. We are not sure why, except for the fact that Parkinson's patients are deficient in dopamine (which is the action of these medications) whereas RLS patients have a normal amount of dopamine in their brain.


Subject: RLS
Date: Thu, 5 Mar 1998 14:48:44 -0000

Having just read the book 'Miracle Sleep Cure' I am really pleased to learn that I am not alone in the sleepless hours of the night!!

However, what I don't quite understand is what causes this condition.

From my own experience its something I can avoid very easily by smoking cannabis, I am not aware of having suffered from this complaint before being a heavy cannabis user however, I am now trying to quit smoking cannabis and this generally causes me insomnia and accompanying RLS - It leaves me feeling like I need to run a marathon.

Could somebody tell me what causes this and would it be that my withdrawal from the THC chemical in cannabis that causes this? Maybe its only temporary. I am intrigued to see that some people use opiate based drugs to alleviate symptoms - is this wise I ask?

I am a little hazy on the exact facts but I understand that cannabis does affect the quality of sleep.

Anyway I look forward to a response from somebody who surely knows a whole lot more than me!

Joanna

Medical Reply

Several RLS sufferers have noted that marijuana helps relieve their symptoms. It is also not unusual to have RLS symptoms become prominent when trying to get off a drug that you have used for some time (with or without an addiction to it).

We do not know the cause of RLS therefor it would be only pure speculation to say exactly what is the interaction with RLS and drugs such as marijuana.

The opiate based drugs are very helpful in RLS but must be used very carefully.


Date: Thu, 05 Mar 1998 22:45:10 -0700
Subject: Withdrawing from Sinemet

I am in the process of withdrawing from Sinemet, and would very much appreciate some advice. I was taking eight Sinemet CR 100/25 in a 24 hour period: 1 at 8:00 in the morning, 2 at noon, 2 at dinner time, 2 at bedtime and 1 at 4:00 in the morning. I have also been using St. John's Wort for depression and find it necessary to help me sleep. I had gradually been increasing my dose of the Sinemet, under advisement by my doctor, over 4 months . While helping the symptoms at first, the Sinemet seems to have caused more intense and earlier bouts of the problem, and problem with arms. So I decided that I should get the Sinemet out of my system. ( I get an unbearable feeling deep in my muscles- like a coiled spring , sitting or lying down, plane trips the worst.) I think my problem originated from long term use of antidepressants.

Anyway, I have been advised to take it slowly, cutting out two pills a week. I am down to five pills a day, cutting out the fifth starting today. I have been cutting out the early day doses first and have survived so far. However, by 11:00 in the morning, I am unable to sit for any length of time and can only anticipate it getting worse. I am taking various remedies that I have read about on the Web - really just out of desperation- Zincum Met. homeopathic preparation, Kava Kava- (just tried twice), magnesium and calcium daily, 1 banana daily, ASA with codeine, several times per day, (this gives the most obvious relief. )

Unfortunately, my doctor, although very well meaning , is not that familiar with RLS . I would really appreciate your suggestions on this problem.

Margaret M.

Medical Reply

Sinemet can be a very troublesome drug to use for RLS. Some RLS sufferers do well with Sinemet, but once the dose gets higher than 2-3 tablets of the 100/25's, then trouble such as you have experienced becomes quite common. The problems you are describing are termed augmentation and rebound (to find out more about these, please see our RLS Treatment Page).

The over the counter medications that you have tried generally have little effect on RLS. The ASA with codeine should work well as the narcotics are very helpful in relieving RLS symptoms.

The "trick" for getting off of Sinemet is to gradually decrease the dose while adding another Parkinson's disease medication (such as Permax or Mirapex) slowly in place of Sinemet (see RLS Letters Page 9 for more details on getting off of Sinemet). The other Parkinson's disease medications do not seem to cause augmentation and rebound.

Narcotic medication (Codeine, Vicodin, or Ultram) may be quite helpful to get you over the rough times while withdrawing from Sinemet. Sedatives (Ambien, Xanax) are helpful to take at bedtime to help you get sleep at night.

A Reply from Margaret M.

Date: Sat, 21 Mar 1998 22:20:52 -0700
Subject: Re: Withdrawing from Sinemet

Thank you so much for your advice on withdrawing from Sinemet. (Friday, March 6, 1998) I took the RLS treatment information , relevant letter from page 9, and your letter to my Doctor who was receptive to introducing the Permax, (1/2 a .05 mg tablet with each Sinemet) . It has only been two days, but the Permax already seems very promising.

The RLS symptoms, day and night have already settled down to almost nothing, which seems miraculous at this point. I am hoping that I will be able to stabilize the medications at a minimum dose.

I am experiencing some side effects of the Permax which will hopefully settle down with time - headache, runny nose, drowsiness, mild nausea, digestive upset (burping, constipation), and a sort of pins and needles or itchy feeling on the surface of my skin. The headache and drowsiness have already improved somewhat.

So far I feel that these side effects, while bothersome, are preferable to the RLS symptoms which were much worse, especially with the rebound and augmentation happening. If I can use the Permax to reduce or eliminate the Sinemet, perhaps I will be able to cope with the Permax.

I wanted to let you know how I am doing so far and will let you know how things work out.

Thanks again so much for your invaluable help.

Sincerely,
Margaret M.

Medical Reply

I am glad to hear that you are doing better with our advice. Many of the side effects of Permax may get better with time. Make sure that you increase the Permax very slowly (as you have already done by using increments of 1/2 of the 0.05 mg tablets).

Let us know how you do in the future.


Date: Sat, 7 Mar 1998 17:10:07 EST

Have had RLS for at least 70 years, and during the last 15 have had it so bad and since doctors could help, suicide seemed the only way to get rid of it. I went into depression. Finally found the Foundation on the Internet, and realized there might be help. Showed some info to my doctor and he prescribed Sinemet. It did no good, but in the meantime I read SLEEP THIEF. I asked him about Klonopin on my next visit. I had been taking Ambien 10 mg for over a year, trying to get some sleep, but one doesn't walk all night and sleep at the same time. My doc said take 0.5 mg of Clonazepam with the Ambien at bedtime.

I was also having back pain at the time and was taking Ultram. I took all 3 pills that night and slept like a baby. I continued to take the 3 every night and did beautifully. The back pain subsided so I stopped the Ultram. Within 24 hours the restlessness was back, (not the creepy-crawling feeling .) After 2 days, I went back on the Ultram, and immediately the restlessness stopped.

My doctor said the combination was all right (though he has to fight my HMO pharmacist every month to get more Ultram for the price I get the others. They want me to pay full price which I cannot do.) Doc also said I would probably always need the 3 for relief, but at these low doses, it was unlikely I'd get addicted to them. I got my relief last April (1997) and have not taken a "time off" from them. Do I have to?

I also learned a terrible lesson for a chocoholic like me--I cannot eat chocolate of any kind--starts the creepy- crawlies within half an hour. So I call it "rat poison" and refuse to touch it. As sweet as a candy bar is to eat, freedom from RLS is sweeter.

The So.Calif. RLS Support Group booklet was terrific, and thank you for your help.

Lynne G.

Medical Reply

The Ultram is an excellent drug for RLS, and in combination with a sedative usually works very well.

Drug holidays are important to prevent addiction and tolerance. Some people do not develop these problems despite continued usage of drugs without drug holidays. Therefor it is strongly recommended that you do take drug holidays.

You might consider using Vicodin for a few days while taking a drug holiday from Ultram. It will likely work well and allow you to stay off Ultram for a few days. As you seem to need high doses of sedatives, I do not have any suggestions for making the drug holidays from Ambien and Klonopin any easier. If you decide to take a drug holiday from the sedatives you will have to grin and bear it.

Although Sinemet did not help, Permax might still be helpful and make it easier for you to decrease your need for the sedatives.

A Reply from Lynne

Date: Tue, 10 Mar 1998 18:23:29 EST
Subject: the "holidays"

Thanks so much for your answer to my letter regarding the 3 medications I'm taking for my RLS - Ultram, Ambien and Klonopin. I appreciate it so much. But one more question please--how often should these "holidays" be taken? I've been on my medication for almost a year. Thanks for giving me a bit of your time.

Lynne G.

Medical Reply

The drugs holidays for Ultram and Ambien should be 2 days (recommend the weekend when you may not have to be as alert) every two weeks. Klonopin is somewhat harder as it has a longer half life and therefor needs a longer time to get "washed" out of your body. 5-7 days once a month would probably suffice for the Klonopin to assure no tolerance or addiction for most people.


Date: Sun, 8 Mar 1998 15:49:11 EST
Subject: Restless Legs Syndrome

I have been reading your letters on this Southern Cal.  RLS Support Group Web Page and note what you say about "drug holidays".

I've always had RLS but nothing I couldn't deal with using a tab of Advil for a very restless night. Even noted that skipping wine with dinner gave me a much more peaceful night's sleep.

I was put on Ultram for pain last October (97) for a severe case of shingles and its post herpetic neuralgia. At its worst I was taking ten 50 mg tablets a day. I went to a health clinic for diet/steam bath/mud pack therapy and managed to drop that back to two tablets a day. As the months wore on, although the post herpetic neuralgia did not wear out, I decided that I could live with the residual pain of the post herpetic neuralgia and attempted to drop the two tablets of Ultram. The RLS which had disappeared while I was on pain killers for the post herpetic neuralgia came on with a vengeance and I experienced the very worst of RLS symptoms walking the floor in agony till 6 AM, at which time in desperation I took two tabs of Ultram. Within 40 minutes the RLS disappeared and I was able to go to sleep. A week later I thought it might be better to do this gradually and cut my dose down to 1 and a half (75 mg of Ultram). More RLS, but an hour's floor walking and I was back to sleep. Then I cut to 1 tab. Less RLS relief but bearable. Then I decided once again that if I could do with 1 tab, I could do with none. Wrong. The RLS gripped me once more and I was in misery till 5 or 6 AM; gave in and took the Ultram to get to sleep.

In short, 4 times now I have attempted to drop Ultram without success even though the dosage was minimal. Walking the floor with the residual post herpetic neuralgia pain only exacerbated the post herpetic neuralgia as I need rest in the worst way to be able to bear that.

It appears that even as I am down to one single 50 mg Ultram, my body literally kicks up a storm when I try to eliminate that. I had my doctor give me a prescription of Ambien based on what I had been reading in your web page. Didn't work. The single, lowest dose of Ambien, not only did not put me to sleep in spite of the RLS, it augmented the RLS and I had it all during the next day, something I never otherwise have. I did this twice to prove it to myself that it was not an accident.

Really, if I could take a drug holiday from Ultram, and live through it, I would never never again go back to it. I wonder how long it would take to get the Ultram out of my system. How many nights could I go without sleep or rest without having a nervous breakdown. Will I ever again be able to solve my RLS nights with an occasional Advil? I never thought there could be any pain to compare with shingles until the onset of this torment of the RLS going on indefinitely when I tried to dump the Ultram.

I am appalled at the number of drugs some RLS people are taking to keep the symptoms under control and I am firmly convinced that the very drugs they are taking are making the RLS worse than it was before. It sure seems that way to me since I was not taking Ultram for RLS but for the pain of the shingles. Has anyone on this line taken a drug holiday from Ultram and how long did they endure it? Must one taking a "drug holiday" have another drug handy to tide him over? Then how do they drop that drug handily?

Thanks for all the information provided by this web site. It has been invaluable to us RLS sufferers. Have the manufacturers of Ultram got any answers for how to dump their drug when you want to?

Pat K.,
Vienna, Virginia

Medical Reply

Your experience is unfortunately not uncommon. We have heard from many RLS sufferers who have had minimal RLS symptoms before starting narcotic medication for an unrelated painful medical condition. After being on the narcotic/pain medication for a while, the RLS then seems to become active when the narcotic/pain medication is tapered. It is not known whether this is coincidence or caused by the withdrawal of the medication. It seems more likely that it is the withdrawal of the narcotic/pain killer medication that is somehow triggering the RLS to become more active. Your problem is not specific to Ultram, but rather common with all the narcotic/pain medications.

Vicodin may be a good drug to use to alternate with Ultram so that you can take a drug holiday from the Ultram, but that will not help to get you off this class of medication which started your worsening of RLS.

The Parkinson's disease medications (Permax, Mirapex) may also be helpful to reduce your need of the narcotic/pain medications.  These drugs do not make RLS worse (except in a very rare patient).  Your reaction to Ambien making the RLS worse is extremely unusual.


Date: Sun, 08 Mar 1998 00:32:35 -0800
Subject: Calcium Supplements Helped me

My symptoms vanish when I take 3 grams of calcium and 800 units of vitamin D. The new MDR (minimum daily requirement) for calcium is 1500 mg and 400 units of Vitamin D.   Few people get that much calcium.

Bone resorption, common in females and not uncommon in males over 50 interferes with calcium absorption from the stomach.

Anyhow,it couldn't hurt to take the MDR of calcium for a few days and see what happens.

Joe

Medical Reply

We have had reports from patients stating that calcium seems to help. It is also quite important for prevention of osteoporosis, so there are lots of good reasons to take Calcium.


Subject: sleep disorder
Date: Tue, 10 Mar 1998 12:31:14 -0800

I am able to get some sleep only with a 30 mg tablet of temazepam and a drink or two.   If I try to do without to avoid habituation, I simply do not sleep more than 3 or 4 hours. Am I doing more to damage my health by taking the temazepam or by experiencing chronic and persistent sleep deprivation?

I have tried Tylenol PM , Melatonin, you name it -nothing helps. I am 77 years old and have regular back pain at night which is not relieved by analgesics but goes away when I get up and move around. Any help would be appreciated.

Medical Reply

Temazepam (Restoril) is a good sleeping pill that actually works better to sustain sleep, rather than put you to sleep quickly. It may take 45-60 minutes or longer to get you to sleep. That is likely why you need something (2 drinks) to help get you to sleep.

Alcohol does help people to get to sleep, but it significantly worsens the quality of the sleep later in the night. Therefor, although the two drinks at bedtime gets you to sleep, it is probably doing you more harm than good in the long run.

I would suggest that you change to Xanax (with the consent of your doctor), which has rapid onset to get you to sleep and should sustain your sleep until the morning quite well. You would then not have to take alcohol to get to sleep. It would also be wise to take regular drug holidays off the sleeping pill of 2 days every two weeks. Sleeping only 3 to 4 hours for one weekend every two weeks should not be too great a sacrifice to sustain the benefits of the medication. If you cannot do the drug holidays, then Ambien may help for your off days.


Date: Thu, 12 Mar 1998 21:36:12 -0500
Subject: RLS

I have just found this site. I am a 39 year old female. I have been called "the twitcher" from my husband. As far back as I can remember , I have always had to move my legs. I can't describe the feeling, but sometimes I would have to get out of bed and stretch my legs. Other times I can only fall asleep after I move my legs all the time. Kinda like rocking to sleep. It gets so bad my husband will put his legs over mine in an attempt to stop the twitches. He says some nights I twitch every 10-20 seconds.

I usually end up sleeping in the study because there is no way I can lay still at night. He thinks that I can make my body stop it, but I can't. Can someone tell me if these sound like symptoms of RLS? Its great to know that there is really a name for this feeling and that other people have this to!

I live in Portland, Mi.

Medical Reply

The feeling that you have at rest when you feel you must move your legs is called RLS (Restless Legs Syndrome). The leg twitching while you are asleep is called PLMD (Periodic Leg Movement Disorder).

There is good treatment which can resolve both of those problems, if you feel you would like therapy.


Date: Fri, 13 Mar 1998 20:29:04 -0500
Subject: RLS and Permax

I was diagnosed with RLS about 7 years ago, but have probably had it my entire life. My father says my mother did too. Initially Sinemet worked, but after 4 years it actually exacerbated my symptoms so much that I couldn't even go to a movie without taking the Sinemet. The next 3 years were hell.

My neurologist and I tried Elavil, Ultram, Tylenol with codeine, Darvocet and even Halcion. Nothing worked. At times I thought I was going crazy. This fall he prescribed Permax and I have been having the best sleep I've had in tens years. While I wake up a few times a night, I usually fall right back to sleep and don't notice the twitching.

Unfortunately, I seem to be having a relapse and have spent the last 2 nights in the bath tub. The week before my period is the worse. Is anyone who's using Permax experiencing any tolerance developing or lack of effectiveness? And what is the largest dosage you take? I currently take .25 mg before bedtime. Let me know if you're having any similar symptoms.

Lynne in Michigan

Medical Reply

Most of your experiences with RLS are quite common. It can be difficult to treat in some patients and Sinemet can cause trouble when prescribed in higher doses. Permax is a very good choice and usually does not lose effectiveness once you have found the right dose. It could be that your RLS has worsened recently, which is something that may happen as people get older.

Many women notice a hormonal effect with their menstrual periods and RLS. This is not understood.

The maximum daily dose of Permax is 1.5 mg. Most patients taking it for RLS do not usually go above 0.5 mg for any one dose.


Date: Fri, 13 Mar 1998 08:12:40 -0500
Subject: RLS-relief without prescribed medicine

I have not been officially diagnosed with RLS and I am wanting to find relief without going to the doctor. My symptoms include a sort of strange, uncomfortable feeling in my legs, feet and my forearms. It drives me crazy when I am trying to sleep. I find relief when I punch the spots in my legs and my arms that are bothering me. This really irritates my fiancÚ when he is trying to sleep.

I am on medication already for Crohn's disease and I would prefer not to take any more. I have tried stretching and massage for temporary relief, it works but wears off as soon as morning hits. I am looking for daytime relief. Do you have any information on herbal or homeopathic remedies. I'm glad to hear that other people suffer from this and that I am not crazy and fabricating all of this in my head. It has been going on since I was about 6 years old, I am now 21 and it is getting worse.

Ranee

Medical Reply

Your description of your symptoms qualifies you for an "official" diagnosis of RLS (whether or not your own physician notes this on your chart). We do have a list of homeopathic remedies on our Treatment Page and many others can be found in letters from RLS sufferers like yourself who have written in to us.

You may however, need prescription medication to get better if the homeopathic treatments are not effective.


Date: Fri, 13 Mar 1998 04:59:00 EST
Subject: RLS

Just a short note (because it is about 2 a.m. and I need to get up at 6 for work) BAD NIGHT TONIGHT! Anyhow, I noticed that my RLS is worse during PMS and my menstrual cycle. I remember having this mildly when I was pregnant. Now that I am in my forties it has been getting worse.

I always wake up 3-4 hours after going to sleep. And then it is a very light in and out sleep. On weekends I get up and take a half of a Sinemet and try to sleep more and I do. Usually not too bad after about 8 a.m. I crave a full nights sleep. I cannot remember the last time when I have had one.

During my bout with RLS I am very moody/grouchy. It usually starts at night around 8p.m., but not unusual to have it in the day. (I also get it in my arms which is twice as torturous) Which is what has been happening for the past month.

My doctor recently prescribed Naldecon and guaifenesin for sinus problems (which I never had before) and I am wondering if there is anything in these that could contribute to this. Need to go try to sleep now. Looking forward to more answers.

Medical Reply

Naldecon is an antihistamine/decongestant which has a small potential to worsen RLS. The only way to be sure is to stop the Naldecon and see if your RLS improves. Guaifenesin is very unlikely to worsen RLS.

If the worsening of your RLS persists off the Naldecon (quite likely), then you may want to consider medication for your condition. See our Treatment Page and talk to your family doctor or see a sleep specialist. Most RLS sufferers can do very well with the correct treatment.

There may be a relationship between hormones/menstrual cycles and RLS. The RLS tends to worsen with age in many patients and that seems to be the case with you.


Date: Sat, 14 Mar 1998 17:42:13 -0500
Subject: RLS

I have RLS and am under the care of a Neurologist, he is giving me Neurontin & Sinemet. When I first got it, I also started with pain in back of my knees and a sensation in my feet that feels like bee stings. The medications do get rid of the pain and stinging but everyone says there is no pain associated with RLS. I do believe there is, when the RLS is doing better the pain is better.

I will say I have had the knee pain all my life, they used to call it growing pains, its similar to it. I have an appointment for this week to check my knees out a little further. I do not have any Arthritis any where in my body, am very lucky.

Thanks for all the info and if you have any news concerning the pain I would appreciate hearing from you.

Thanks,
Jeanette

Medical Reply

The RLS itself is a very uncomfortable sensation in the limbs (usually legs, but can be arms also). Most do not use the term pain, but the results of the RLS is described by some as painful.

Localized pain behind the knees is less likely to be due to RLS, but anything is possible, especially as they seem to be linked in your case. Without a proper examination to rule out other musculoskeletal disorders it is hard to say what is causing your knee pain.


Date: Sat, 14 Mar 1998 14:36:11 -0800
Subject: RLS

My 86 year old aunt has had RLS for many years - it is getting much worse lately and she walks all night, then at the point of exhaustion at dawn, sleeps until the early afternoon - sometimes awakening with headaches, etc. She lives with my mother,(her sister) , who is 84 and it is getting to be a big problem for my mother to take care of her. They are both on the "youngish" side - and live delightfully independently.

Also, a cause for my concern is that Auntie slathers herself with BenGay all through the night, as she is walking and stomping and banging her legs to help ease the restlessness, and the apartment is filled with the noxious fumes. It is causing my mother to become sick, and we can't convince Auntie to stop using it - she doesn't get relief, but her husband (now deceased) had convinced her years ago to use it - she thinks she is honoring his memory! I was hoping for some back-up info to help convince her to stop using BenGay - maybe if she heard it from an official source she would understand.

Thanks for your help, and I am hoping to get her to see a doctor in the Philadelphia area - she is afraid to offend the family practice doctor she sees, who has been incredibly unhelpful about this product - told her to take Anitvert and relax. Thanks for your anticipated help!

Regards,
"Restless in Boston because of RLS in Philadelphia!"

Medical Reply

I will give you our "official" opinion that Ben Gay is useless in treating RLS. From what you have written, I doubt your aunt will take our word for it, however. Any sleep specialist will confirm that Ben Gay is not helpful, and hopefully by then she will be able to stop using the cream.

Let her know that there are lots of good treatments (other than Ben Gay) that will relieve her RLS symptoms.


Date: Sun, 15 Mar 1998 13:16:32 EST
Subject: Baltimore Area Restless Leg Support Group

What a wonderful resource you are!! Really enjoyed receiving the book, plan to share it at the next meeting.

I have PLMD and it was reassuring to hear that someone else slept 16 out of 24 hours before being treated. I lost two years of my life thinking I was sleeping due to depression. I had NO CLUE. I am a divorced mother of two. I had no bed partner. I had NO CLUE at all except lower back pain. Doctors definitely thought my complaints were nonspecific and changing (and they did change). I was definitely labeled as an emotional nut-case. Prozac would help at the beginning of the month, worsen by the end, increase the dose and repeat cycle. Finally I was diagnosed and read in the Sleep Rx by Norman Ford that Prozac can exacerbate PLMD. By that time I knew I was better off without a doctor. I gradually took myself off the top dosage of Prozac and started a vitamin regimen. I was definitely getting better. I had fired 5 neurologists. I had been misdiagnosed with narcolepsy three times. I had even joined their support group! Obviously they were diagnosing me on the sleep deprivation symptoms alone. Although one sleep test had diagnosed me with narcolepsy. It was an uncertified sleep lab (no choice due to managed care). The last neurologist I fired was after a correct diagnosis. He told me I was too young (44) for treatment with Sinemet and to stay on the Prozac.

I did fine on my own for almost one and one half month. It was a breathe of fresh air. Caffeine is a trigger for me. I also get severe migraines and had been trying the "diet" for about 8 months. It wasn't helping. My birthday rolled around and someone who "didn't know" gave me a box of Godiva chocolates! My girlfriends encouraged me to eat and enjoy them as the diet had not done me any good. I ate the whole box in two days (I guess I had felt pretty chocolate deprived too). I was on my way home from work after that and I had to pull over. My arms started moving involuntarily and I couldn't steer the car. Scared? You bet. I thought they all, in all their infinite wisdom, had missed something and perhaps I had Parkinson's or something similar. I got a recommendation of a neurologist who had studied under Drs. Henning and Walters at Robert Wood Johnson Medical Center, movement disorder specialists. He gave me my life back!! I have his home phone number as I still have a few unexplained illness symptoms. We are positive that my migraines are tied into the PLMD at least some of the time. Sometimes the pain triggers involuntary leg movements. It makes me want to scream!!! I am so out of control on the pain and the movements. During the migraine, the movements are worst lying down, but not non-existent sitting up.

If we all can work together as I am feeling this momentum, we can do it!!

Thank you for all of you care!!

Pat S.,
Baltimore Area Restless Legs Syndrome Support Group (Almost 200 on my mailing list)

P.S.

I now understand the "beat-up" feeling some mornings and the backache.

Several people in my group think sugar is a trigger. They are not diabetic and we separated it from chocolate as a sugar. You didn't mention the ADHD connection. Sugar could certainly fit in here. My son had ADHD and I think he will have PLMD. He has a daily backache and falls asleep at the drop of a hat. As a college sudden his schedule is so irregular that we have lost a good picture of his sleep for the time being. He went for a sleep test. I sent him to the wrong lab. It was a lab that specializes in apnea and unfortunately they are tunnel visioned. He has a ritual of rubbing his feet together before he goes to sleep. I just had a man who joined my group who has PLMD and told me the same thing!! My niece's husband complains of being kicked at night.

Addendum from Pat S.

Date: Sun, 15 Mar 1998 14:40:14 EST
Subject: Addendum from Pat S., Leader Baltimore Area RLS Support Group

Two important notes in general:

1.) I had a very bad time with increased PLMD after a sinus infection where I took Sudafed. I now have learned that decongestants can be a trigger. 2.) My boyfriend took Remeron for depression for two days. He woke up the second morning, first words out of his mouth, "I'm feeling violent". He remained in this heightened state all day. He was very agitated. He kept apologizing to me and reassuring me that it wasn't me. My job was to keep him safe. I called the doctor who could not comment on a drug reaction. The pharmacist agreed that it was the Remeron and to get him to go outside and walk or run it off. He will never take that again!! I understand that this drug is new in the U.S. but has been available in Europe for about 20 years. Maybe that's why it wasn't approved here? But people need to be advised that this according to my pharmacist is a common reaction!!

We had a massage therapist teach couples leg massage to be used before bed time. It had some good results, but as with everything else each patient is different. One thing we learned that is VERY IMPORTANT. PLEASE PASS THIS ON! One must as they massage anywhere be sure and massage TOWARD the heart. That means for legs from toes up the leg only! NOT back and forth!!

Particular to me as a patient with PLMD:

(I was so glad to read of others with PLMD only. I lead the RLS Group in Baltimore. and it is odd because I sleep excessively and help those who walk the floors instead) 1.) Recent knee surgery, I was given morphine - I got a free exfoliation from itching!! 2.) Percocet was given after surgery (I stopped regimen of Klonopin and nortriptiline for sleep). Percocet made me hyper and zombie-like awake state. Could not sleep a wink. There were no leg movements, I just lay there wide eyed and awake. 3.) Years before diagnosis I became psychotic on flaygyl. It has a warning to those who have a central nervous system disorder. 4.) Here's the "KICKER" if you will. I am wired wrong. No doctor I have ever talked to has ever seen this before. It makes people laugh at parties. I KNOW it is significant for me. When given the reflex exam and my knee is hit, not only does my knee jerk but so does my neck involuntarily...ever time. Any comment? Anyone else ever said that?

Thanks for your time.

Pat S. Baltimore. Area RLS Support Group

Medical Reply

Thanks for your very interesting letter.

The reaction of your neck jerking with the knee jerk reflex is not too uncommon. Often the other leg or an arm may jerk, but so can other muscles. The ADD (Attention Defecit Disoder) may have a link with RLS/PLMD


Subject: Restless Leg Syndrome (Help Please)
Date: Sun, 15 Mar 1998 12:52:53 -0500

I am sitting here crying reading all the letters on the net. I have had this since I was a small child. My father used to get me to drink a glass of wine thinking it was nerves. It only made it worse. As I grew up I just dealt with it. Then when I got pregnant at 28 it got so bad I thought of suicide (I though I was going crazy).

First they tried barbiturates they made it worse. Then they put me on codeine. I actually got sleep for the first time in 28 years. Then after the birth they took me off saying go to a neurologists. Like I had a lot of money. I continued suffering with it.

Then three years ago I was hurt on my job and they gave me hydrocodone for the pain in my wrist. Again actually sleep no jumping legs, no hurting in them, no pounding on them, no all night showers in hot water, where I would fall asleep because it felt so good. Now they are taking me off the meds and since I fell at work it has gotten worse.

What do I do??????? Do you know of any doctors in the counties of Citrus, Sumter, Dade in Florida that can help me?  Please, I feel like I am going to go insane if I don't. I am 42 years old and have a son that thinks I am going nuts. Thank-you for at least being here if you can not help me.

Shenda,
Florida

Medical Reply

You need to see a family physician, neurologist or sleep specialist who should be able to diagnose your RLS from your symptoms and treat you. It may be helpful to take a copy of our RLS Treatment Page if you are seeing a doctor that is not well versed in RLS. There are lots of medications including the narcotics which have already helped you, that will relieve your RLS symptoms and make you feel much better. You should not just go off the hydrocodone (Vicodin) without something to replace it or take care of your RLS.

Check out our link to the ASDA to find a sleep specialist in your area if no one else will help you.


Date: Mon, 16 Mar 1998 00:52:32 EST
Subject: MRI

I'm back again with another question that is very important to me.

Since I've last written to you, I have had a sleep lab study done...which has shown that I have no sleep apnea, but I do have severe RLS and PLMD...about 3 kicks every half hour. I only slept 160 minutes the whole night.

My neurologist has examined me thoroughly, ordered a lot of blood work...and has scheduled me to have an MRI on my brain this coming Thursday. This is something I really dread because I am extremely claustrophobic and he says that the images from the new open-air machines are not as clear.

No one in my support group has had this done or understands why I need to have it done. He did not give me a specific reason...just that once he got lucky in finding something this way. I don't know if this will involve contrast injection or not, this was left up to the technician. I do not look forward to this, do not know if it could be dangerous to me and don't particularly want my insurance company to have to pay for an expensive test that I might not really need..

He has put me on Gabapentin (Neurontin) three times a day,  Klonopin 1 mg and codeine 30 mg at bedtime...which seems to be working very well so far. I 've been reading up on Gabapentin and understand that it may also help in some kinds of pain and certain difficult to treat depressions. It seems to be a rather safe drug in respect to side-effects. It's only been 5 days, but I really feel good about this regimen. I think he intends to double the amount of Gabapentin in two weeks.

My only concern is the Brain MRI. I would like your honest opinion as to whether or not this could possibly be something I would need to have, especially after having brain wave tests at the sleep lab.

My neurologist admits that I know more about this disorder than he does at this point and I have printed out everything I possibly could from the web and given it to him to read, along with my "Sleep Thief" book. I know he's a busy man with a family also and I'm really not sure he's read all the stuff I've given him.

I like him a lot and he says he wants to work with me on this....and is willing finally to give me medication strong enough to do something. He wants to watch me closely to see how I react to these medications, and I welcome that....along with regular blood tests to watch my liver and kidneys. But he keeps coming up with something else to check instead of just getting on with my treatment.

I was happy to do the sleep study...I felt I definitely needed that. But, as I said, I'm not so sure about the brain MRI.  I have a friend at Hopkins who I would like to ask about this also...if there is enough time, since the test is this Thursday, the 19th, and I know they don't like you to change their schedules.

Thank you for any help you can give me in this matter and for all the help you've given me in the past. I am truly indebted to you.

Sincerely,
Connie

Medical Reply

If your results from your sleep study show 3 leg jerks per half hour, then at 6 jerks per hour, your PLMD is actually very mild. It sounds as if your RLS is really the more significant problem, and that does not need any special testing. We generally do not even do sleep studies on patients with what we suspect is primarily RLS.

I do not know why your neurologist is recommending an MRI as this does not have any role in RLS. He may however, have other reasons, so do not cancel the test without further consultation with him.

It appears that your medications are on the right track. Neurontin works well for many patients and is generally well tolerated. The only class of RLS medication that you are not on at this point is the Parkinson's disease drugs.


Subject: Night Owl..
Date: Sun, 15 Mar 1998 03:50:16 -0500

Found the page by accident. I'm in Canada. the medications mentioned I have not heard of.  I have always been a poor sleeper, but the older I got the worse it was.My husband said it was like sleeping with a windmill, I used to punch my legs, do Yoga exercises to stretch out the feeling.

When after a long time of not getting to sleep till 5-6am (not much use when my kids were younger and I had to get up for work), I was sent to a Sleep clinic in Toronto. Prior to that, my doctors would try all sorts of junk on me, none of which worked. The worst was Halcion, that was scary.  I set myself on fire (slightly), just did the weirdest things in a zombie state, so I threw those away,

I changed doctors and went to the sleep clinic, being made to stay in bed when this pulsating under the skin is at work, sent me batty.  It was torture! The sleep clinic was hell, but I was desperate.  When I returned for my review, I was instructed that from all of the evenings spent there, I had managed only 1 and 3/4 hours of sleep. My left leg twitched over 800 times and my right over 700. I was told there was no known cure and given a Mogadon sleeping pills to take (being from Britain, I knew of this medication).

It helped, but I had to keep upping the dosage. The best this did for me was that when I couldn't sleep, I could sit still and read. That was OK for 15 years, then things got really tough. After starting 8 years ago with migraines, and taking all different kinds of stuff for that, I believe it aggravated my RLS. I was sent to a neurologist who took me off my Mogadon, which made me suicidal.  Whatever else she tried to get me to take, I can't recall, but I told her that after that length of time I'd rather have migraines.   She put me back on Mogadon, and I went again to a different sleep clinic.

This was worse than the first time round. After that visit I went for the review and was told I didn't sleep for more than 40 minutes, and it wasn't enough time for them to analyze. They requested I do the test again. I was not about to go through that again. So I am here now its, 3.45 am, and I've been up and down all night.  I'm getting very frustrated!

I want to try acupuncture, and other stuff  I cant spell.  I will now try anything that doesn't involve taking pills.  I have osteoporosis and that is new for me, so I am taking calcium. Hopefully that may help. I'm 54 and have had this for as long as I can remember.  My Mum also had it to a milder degree.

This site is wonderful!  It's like getting proof for your family and friends that your not crazy.  I am printing a lot of this stuff to take back to my doctor.

Medical Reply

It sounds as if you have had an incredibly tough time with your RLS. I am not sure about Mogadon, as it is not available in the USA, but it sounds like a sleeping pill in the benzodiazepine family.

RLS/PLMD usually will respond to the Parkinson's disease medications and the narcotics, which can be added to the sleeping pills. Check our RLS/PLMD Treatment Page, and you should be able to start treatment with the help of your doctor.


Date: Tue, 17 Mar 1998 11:48:52 -0500
Subject: Sinemet dosages

Can you give me any advice on the dosages of Sinemet and Sinemet CR? My doctor started me on CR at 25/100 and upped it to 50/200. I have heard that it is okay to go up higher than that. I am still waking up tired (I only take this at night to sleep) and recently switched to Lilly but I hate the side effects, so I wanted to give Sinemet CR another try at a higher dosage if possible.

Thanks,
Suzanne

Medical Reply

The starting dose for most RLS patients is 25/100. Lower doses can be used in elderly patients or in patients who are very sensitive to the medication. The CR dose is the slow release form of the drug, it gives the same amount of medication, just spread over a longer period of time.

The total dosage of Sinemet should be no more than 2 or 3 of the 25/100 tablets per day (the 50/200 equals two of the 25/100's). If higher doses are needed, we suggest you change to other Parkinson's disease medications such as Permax.

For further information, please see our RLS/PLMD Treatment Page.


Date: Tue, 17 Mar 1998 09:08:26 -0500 (EST)
Subject: RLS

I have had RLS for years, but not the jerking or flailing about of the legs. Mine is "nerve" twitches deep inside the tissue and quite visible when they are happening, strong enough to awaken me from a deep sleep and keep me awake and then the muscle cramping starts!!!!! I am up 4 or 5 times almost every night for 5 minutes at a minimum every night.  The cramps can be behind my knee and cause a great deal of pain.

I have taken to drinking alcohol to minimize the effects of all of this and often I am able to sleep through the twitches, but not the cramping.....and do not want to continue this form of "medication".  I also have been having numbness and yet exquisite pain in my feet.  I had nerve conduction studies done which showed peripheral nerve neuropathy.....apparently not too bad. It was the neurologist, after questioning me, that suggested my other symptoms sounded like RLS.  He prescribed clonazepam 0.5 mg at bedtime and it's only been a week and the cramping is less often but much more severe.

I also work 3 evenings a week and am on my feet most of those hours, and that is when I suffer the most.   I am just wondering if there is anything else I can do or should be looking for or??????

Thanks for your time reading this and hopefully you may have some hints,
Jackie A.

Medical Reply

The "nerve" twitches sound like RLS/PLMD and Klonopin (clonazepam) should work well for that. The muscle cramping does not sound typical of RLS or PLMD and may be just simple (but very painful) muscle cramping. You also have peripheral neuropathy which can cause the numbness and pain in your legs/feet, and are not related to RLS/PLMD.

The muscle cramping may come after increased leg activity (such as your evening working on your feet) and may be relieved by quinine sulfate. Check with your doctor about prescribing this, if you have not already tried it.


Date: Thu, 19 Mar 1998 13:04:37 -0800
Subject: RLS

I am sure I have had it for years, but how do you get it diagnosed?  I was a distance competitive runner (marathon level). Is there any data on us?

Hal E.

Medical Reply

You get diagnosed by the classical symptoms of RLS. There is no special test, and in fact, most of the tests are normal and the physical exam is completely normal.

There is no data on athletes (runners or others) and RLS.


Subject: Letter from Virginia M.
Date: Fri, 20 Mar 1998 18:00:22 -0700

Re: RLS of Irby B.

At a RLS meeting in Scottsdale yesterday, I was given your name in hopes you could help my mother (Irby) who is 85 years of age and is not getting much relief by her medications now.

Two years ago she was put on Klonopin 0.5 mg, one daily and if needed at night. When this did not work, Sinemet 25/100 one to two daily as needed was given for RLS.  Then they added one oxycodone w/apap 5/325 mg with one mg Ativan at night…. Suddenly within the last month she has progressed to 4 and 5 Sinemet a day and still not getting complete relief.

With her high blood pressure and racing heart and now losing sleep, I’m getting desperate for a new med because I’m afraid she isn’t strong enough to take any holiday from the Sinemet. Her leg symptoms are drawing and uncontrolled jerks. Daytime hours are not pleasant for her, but nights are taking the toll on any decent rest.

Any help or suggestions would be greatly appreciated. Her physician is now thinking of recommending that she see a neurologist. If some med isn’t given to relax her soon, she will not  make it to 86. Each day now is miserable for her.

Medical Reply

Sinemet can be a good medication for mild to moderate RLS. It sounds as if your mother has severe RLS, in which case Sinemet can become a problem (as in your mother's case). Once the dose of Sinemet 25/100 exceeds two to three per day, augmentation and rebound (see our RLS/PLMD Treatment Page for more details) become very likely.

Permax (another Parkinson's disease medication) should be started while tapering the Sinemet (see our RLS/PLMD Treatment Page for more details). This will allow her to come off the Sinemet without much hardship (if done properly).

Ultram may be used instead of or alternating with the oxycodone (Percodan) at nighttime.


Date: Fri, 20 Mar 1998 13:47:46 EST
Subject: RLS

I'm not sure what my exact diagnosis would be, but I know I have RLS or something related. Mine started when I was pregnant with my first child. In my last trimester I would lay awake with the uncontrollable urge to try to stretch out my *itchy, twitchy* calves. Not the pain of a leg cramp, but enough to keep me from hours and hours of much needed sleep. Of course my OB had nothing to offer me but sympathy. They symptoms reappeared when I was pregnant again, but this time they never went into remission for nearly as long.

I have tried Calcium and Magnesium with limited success. Quinine tablets have been the most effective for me, but lately even my one tablet before bed hasn't been enough to stop the twitches. Chamomile essential oil in some lotion has helped both myself and my mother (about 2 drops in a 2 oz bottle of lotion). I know my case is mild by comparison, but I also know it will continue to get worse (probably, since it has with my mother) and I feel I have lost enough sleep to last me a lifetime! One final comment, I noticed the problem became much worse once I started a three times a week aerobic workout to my schedule. After months of aerobics, I even started to notice symptoms during the day!

Were Quinine tablets removed from over-the-counter status, as I heard might happen? I have not been able to find them lately in the drug stores.

Julie B, MI

Medical Reply

Your description of you symptoms are classical of RLS (runs in the family, worse with pregnancy, etc.). Quinine is sometimes helpful in RLS, but most find limited benefit from this drug (as it appears to have become in your case). In most states, quinine has become a prescription medication. Our suggestion is to consider some of the prescription RLS medication noted on our RLS Treatment Page. You may be surprised at how much better you feel.


Subject: Prevent RLS. Don't treat it.
Date: Sat, 21 Mar 1998 10:00:29 -0800

I had suffered the miseries of RLS for 40 years until moving into a motorhome where cause and effect could be strictly controlled. The first major improvement came from eliminating any food product containing Mono or Di Glycerides, a super concentrated fat product used as an emulsifier in foods. After trying every bath soap product available, using hot water alone, without soaps for showers, made another huge improvement. The next improvement came from sleeping only on 100% cotton sheets with wool or cotton blankets and no artificial materials on the bed at all. The last major improvement came from rubbing Curel hand lotion on my feet after showering.

I don't know why these things work but at 58 years old, RLS is FINALLY under control and an occasional event rather than 3 to 5 days a week. If I go back and reverse any of the changes listed above, I'll have RLS every night!

Medical Reply

Thanks for your letter. Preventing RLS would be much easier than treating it, but unfortunately, for the vast majority of RLS sufferers, there is little or no means of prevention.

We will post your RLS prevention techniques in the hope that others will benefit. Generally, treatments such as your seem to work for only a very few RLS patients and cannot be applied to the majority.


Date: Mon, 23 Mar 1998 19:15:54 EST

I first want to say thanks to all of you for all that you are doing.  The reason I am writing is to ask for any input any of you might have as for as to help me with my situation.  My meds have stopped working ( actually making things worse now ). I have to go and see my sleep doc next week and we have discussed just about everything. We even discussed putting a pain box on my hip as a permanent implant. He says that's a lot of cleaning and infections etc... I'm 36 and running out of strength.

While sitting at a restaurant the other day, having lunch, I started having funny feelings in my head. When I checked my pulse it was racing at a level of 130 times a minute sitting down. I am absolutely miserable and desperately need some help. I am disabled from this since 1989. I currently take nortriptylene, Xanax, propacet, hydrocodone, and carbidopa as a means to cope , but this is no longer working. I wish I could sleep for a week, and dream. This is a dream of mine.

Are there meds out there that can induce a dream state? Can someone really help me. I have to buy my own meds so that limits me to only $100.00 a month at best, unless my meds cost over about $600.00 a month at which point than the state will pay. I hate to lay this on all of you , but I am desperate. I am not depressed, but I am really desperate for help, as are others.

Please respond quickly. Thanks again. You are doing a terrific job. God bless and keep you strong . May you sleep well at least once and awhile.

James F. H.

Medical Reply

Your case sound quite severe and difficult to treat. It is hard to make recommendations without a face to face consultation in complicated cases of RLS on numerous medications.

The problem that you are having may be due to your Sinemet (carbidopa/levodopa). The worsening of your RLS with medication may be simply augmentation and rebound which are common at higher doses (greater than 2 or 3 of the 25/100 tablets).

My main suggestion (which you can discuss with your doctor) would be to taper off of the Sinemet while adding another Parkinson's disease medication such as Permax.

Hope this helps, and let us know how you do.

A Reply from James F. H.

Date: Tue, 24 Mar 1998 20:03:16 EST

Thank you so much for the advice. Yes my case is at best difficult. I am scheduled to visit my sleep doctor on the 1st of April. At this point all we can do is our best. I have tried Permax in the past, and it gave me stomach rot so I had to stop , but I will speak to him about it once again. Perhaps I will have to keep swapping back and forth.

Thanks again

Medical Reply

Permax can bother your stomach. Consider increasing the dose very slowly until each dose is tolerated. Start with 1/2 of a 0.05 tablet.

If this does not work, then consider Mirapex or Requip which are similar in effect to Permax but have different side effects.


Date: Wed, 25 Mar 1998 19:38:54 -0800
Subject: restless legs

My husband has restless legs. He gets maybe 3 to 4 hours of sleep a night, I get the same. We found some herbs that worked for a while but then he still needed something else. The doctor put him on Tylenol with codeine. This still wasn't enough. We just went to a homeopathic doctor and she did a testing on his body and found that he is full of metal. The silver fillings in his teeth have mercury in them and that is going through is body along with other chemicals and toxins from the fumes at the body shop where he works. His body is full of metal, he need to have porcelain filling put in his teeth. We have to remove all the silver ones. She put him on a detoxified, flax and other herbs that help grab the metal and will let him eliminate it from his body. She said he will begin to taste the metal and feel like he's had nickels to eat. She said that the metal in the body causes, Parkinson's disease, Alzeihmers, ringing in the ears, etc.

She also gave him Lavender oil to put 2 drops in his bath water to help him sleep and he is also to soak in Epson salts. I hope this helps. She helped her friend that had MS for 20 years. She is now working a full time job and if she didn't tell me this I wouldn't have believed her. This person works for her and seems normal. Her body was also full of metal.

I know I haven't given you any names of products or remedies, but I'm really just suggesting to go naturally and see a homeopathic doctor. What I'm trying to tell everyone here is that you should go to a homeopathic naturalist. They do things the way the Europeans do. We are many years behind Europe. I would go naturally before getting my body filled with drugs that have one reaction after another.

Medical Reply

Let us know if this natural therapy and leaching out of his excess metal works. There are many reasons why conventional medicine frowns upon this type of treatment.

Practitioners of these natural healing techniques always point out their successful cases, but rarely do we hear about their many failures (doctors do, as we then get them in our offices after the natural therapy has not helped). There are no medical studies comparing homeopathic therapy to placebo therapy (in a study where the doctors and patients do not know which therapy is being used). 5-20% of patients given placebo therapy (sugar pills) get better (with all sorts of diseases), so we never know if the natural therapy successes are due to this common placebo effect.

Most of the natural therapies are harmless, so taking them is usually, but not always safe. You may remember Laetrile used for cancer therapy (in the 70's) which was strongly recommended as a natural treatment (made from avocado pits). In medical studies it was finally found to be completely useless in cancer and actually did cause medical problems. Despite this, lots of natural therapists espoused taking Laetrile as a good thing to do for cancer without any evidence except the anecdotal reports of those people selling the drug and making money from it.

Physicians will only advise treatments that have been medically tested and proven to work better than placebos. Drugs may not work in everyone, but they will work in many quite successfully. We have no problem recommending any treatment that has been proven to be safe and effective (we are even back to using leaches to treat wounds as they have been proven to work well and be safe).

Extra metal in the body can be a problem when found by certified medical laboratories, but your husband's so called "metal problem" sounds very strange and I would be careful before taking more metal therapy.


Subject: A few questions
Date: Tue, 24 Mar 1998 16:45:00 -0500

I have RLS and am currently under a physicians care and all is going well. My grandfather had RLS and he mentioned to me the possibility of heart related illness striking RLS individuals. Have you ever heard of any of the following?

1) A relationship between "pericarditis" where the lining of the heart gets attacked by a virus, and RLS.

2) A relationship between "cardiomyopathy " and RLS and or pericarditis and cardiomyopathy .

Any comments would be appreciated. Thanks for your help and for such a wonderful and informative web site. It has truly been a GOD send.

Sincerely,
Robert G.

Medical Reply

There is no known relationship between RLS and any heart disease including pericarditis or cardiomyopathy. Viruses can cause those heart problems, but viruses have no known link with RLS.


Date: Tue, 24 Mar 1998 08:45:24 EST
Subject: RLS relieved

From: Kathy, 52 years old

I have had worst symptoms for the past 2 years, sporadically for 30 years old. After 6 terrible months of getting to sleep between 5 or 6 am, I finally went to the sleep clinic.

Permax definitely relieves my symptoms. The dosage I take is .05 mg tablet 3 hours before retiring, and 1/2 tablet 1 hour before retiring. The hardest part is trying to figure out when I'm going to go to bed - I'm not on a real tight schedule, and remembering to take it at the right time if I go out. If taken as prescribed, it works!

If I forget, I take 1/2 tab of Ambien which does put me to sleep quickly, does not appear to be habit forming. Also, concentrating on calming my legs helps. I can see how someone into yoga may get relief. The mind works in mysterious ways.

Medical Reply

Thanks for your letter. We will post it so others can see your good results.


Date: Tue, 24 Mar 1998 20:20:28 -0800
Subject: RLS and Permax

Dear RLS group: I have had RLS for four years and have finally found that Permax plus Darvocet N-100-100 works for me. My question is: what exactly is Permax doing to me? If I have to take this stuff the rest of my life, how is it going to affect the rest of me? Plus I get tired of taking all these medications all the time....with no hope of ever getting OFF. I am a person who until four years ago probably took an aspirin twice a year only if needed.

Is there an answer?

Sincerely,
Anita

Medical Reply

There is an answer. We have good news and bad news for you. The bad news is that you will likely need some medication for a good part of the rest of your life. RLS can come and go, but in general, most RLS sufferers get worse as they get older. That of course, may mean more treatment may be necessary in the future.

The good news is that the medications should not cause any significant problems for you. The Parkinson's disease medications (Permax) can cause problems in the long term in patients with Parkinson's disease, but that does not seem to be the case in RLS patients.

Darvocet N-100 should not cause any problems as long as no tolerance or addiction occurs. This can be avoided by taking drug holidays (one weekend off the drug) every 2 weeks.

Hope this answers your questions.


Date: Wed, 25 Mar 1998 21:41:08 -0500
Subject: RLS

I have found that Zincum Met., a Homeopathic remedy, helps me instantly. I take only as needed. Standard Homeopathic Labs of Los Angeles is a good source. My source is Washington Homeopathic Products, Inc., Bethesda, MD. This is purely natural, non-medicinal. No drugs!!!!!!!!!

C. A. L.

Medical Reply

Glad to hear that you are doing well with your homeopathic remedy. We will post it on our web page and see if others can benefit from your information.


Date: Sat, 28 Mar 1998 22:31:17 EST
Subject: RLS

I've had this for about 30 years (I'm 50) and I too thought I was the only one. Antihistamines, diuretics, anti-inflammatory medications including naproxen and Motrin, vitamin B6, lots of coffee, cough syrup and Nyquil - any of these can make it worse for me. My worst time is within two hours of falling asleep. I got it once while under anesthesia at the dentist. I have never had it during daytime naps.

My first symptoms as an adult started when I was taking a diuretic for a kidney condition. My doctor attributed the RLS to an electrolyte imbalance from the diuretic and prescribed a potassium supplement, K-lyte. This took care of the problem for several years, until the kidney problem was over and I no longer took the diuretic and potassium.

Since then, I have tried to eat foods high in potassium. I found that if I drank a glass of tomato juice or V-8 before bed, there would be no RLS. Or I would drink it if the RLS woke me up in the night. Bananas had no effect. I always carried V-8 juice when traveling.

In the last few months the juice no longer helps. I had the opportunity to ask my doctor about RLS. He suggested calcium, vitamin E and a ginseng supplement at bedtime. This didn't work for me, but I've continued the calcium and E for other benefits.

I have a vague memory of being taking to the doctor for my leg aches as a child. This was during the polio epidemic, and my family thought I might have polio. I have been taking Prozac for about five years and didn't know until reading this that it can make RLS worse. I have also tried meditation, exercise, massage, hot baths and prayer. My pets will not sleep with me.

This week I am going to a neurologist about RLS, and I am so grateful to have found this website. I'll share any insights.

Blessings,
Sharon

Medical Reply

We are happy to have been of help to you. Let us know how you do with treatment.


Date: Sun, 29 Mar 1998 13:26:33 EST
Subject: Restless legs in Houston

I'm looking for a support group in the Houston area.  I have had RLS for years but only recently discovered that it is a real disorder and not just something that happens to me!  I also found out my dad and brother have similar symptoms, though not as frequently as mine. I used to only get it every few months or so (that's about as often as my brother gets it now), but now it happens nearly nightly. It does not happen too often in the daytime except after I work (work 12 hour nights as a nurse, so on my feet a lot at work).

It is relieved by Xanax 1-2 mg at bedtime as necessary, but my physician doesn't want to keep me on it.  I have been taking it since I had surgery in Dec./96 for infertility. I am still trying to get pregnant (I'm 39) but have heard that pregnancy could make the RLS worse! This is very disturbing news as we really want to have a baby but I can't imagine having worse symptoms and no way to relieve them. 

I will be seeing a new doctor, who is a Neurologist, on Friday.  Hopefully he can help!  I have tried exercise and herbal remedies (kava-kava, chamomile, valerian, melatonin, and combinations of them all). I have also have tried Benadryl and Dramamine (bad news-made it worse) and ace wrapping my legs so tight my toes were purple! Hot baths help.  I installed a whirlpool, but the sensation of the water on my legs on the outside reminds me of the sensation RLS produces on the inside, so can't keep my legs in the whirlpool out of fear of a recurrence brought on by the reminder of the sensation!

I would like to join a support group in my area if there is one.  Thanks for all the information so far!

Diana in Houston

Medical Reply

Pregnancy can mark RLS much worse. This does happen commonly, but some are spared.

You can take Xanax or other benzodiazepines during pregnancy (please get the agreement of your obstetrician and neurologist first). Remember to take drug holidays, or you may become tolerant to the medication.

The nearest RLS support group to you is in the Dallas area at:

Dallas Texas RLS Support Group Laura Schmidt phone: 972-272-1313

Check the link to the RLS Foundation RLS support groups on our web site in the future to see if any new support groups start closer to you.

A Reply from Diana

Date: Mon, 30 Mar 1998 13:42:46 EST
Subject: Re: Restless legs in Houston

Thank you for your prompt response...it was a relief to hear that if the RLS did become worse with pregnancy, some measures could be taken! I will take heed of your advice to take drug holidays from the Xanax, but so far I do not require it every day (maybe 4-5 times a week, especially after working all night and needing to rest for the next 12 hour shift the following night.  I otherwise just tough it out and sleep when it's possible without medication.

So far, it really does the trick! I hope the neurologist I will be seeing will continue it, as I am afraid of trying the dopamine affecting drugs after reading all about the side effects (augmentation etc.), and it seems to be all I need for now.

My search for a support group in my area has not panned out but I did read that there is a chat line for RLS patients on AOL...would like details if available! I'm up a lot at night obviously and computer work helps a lot! Sometimes just want to talk to someone who can relate to pass the time!

THANKS AGAIN!!!
Diana in Houston

Medical Reply

The augmentation problems (and rebound) with the dopamine (Parkinson's disease) drugs are almost exclusively with Sinemet. The other ones (such as Mirapex, Permax) do not seem to cause this. We would not however, like you to take these during pregnancy.

We will see if we can get you some more information on Internet chat groups on RLS.

Addendum:

There is a Greater Houston Support Group led by Marvin Fletcher, (281) 855-3921.   There are two groups online: one is operated by Jodi at http://surf.to/rlsinfo , and the other is AOL://2719:2-2-RLS.  I do hope that you will be able to find help with at least one of these contacts.

Another Reply from Diana

Date: Mon, 30 Mar 1998 23:14:53 EST
Subject: Re: Restless legs in Houston

Thanks again for your prompt response...always informative and helpful! At the risk of being a pest, I'd like to pose one more question. As I mentioned, we have had some infertility problems, mainly mine(related to age?).

Researching some of the drugs on your list I was surprised to see that Parlodel has also been used to treat female infertility. Use in pregnancy has not been rated as of 1998 according to my drug handbook. Could this drug possibly have a dual benefit for me? The side effects don't seem as severe as some of the others I have read about with Sinemet and Permax. Maybe I could even cut back on the Xanax, which as I mentioned helps significantly, but is a controlled substance and doctors are reluctant to prescribe it-as you know.

I am very interested on how this medication may increase the potential for conception as well as relieve the symptoms of RLS!!! It sounds like just the thing for me...any information on this topic is greatly appreciated!

Thanks again,
Diana in Houston

Medical Reply

Parlodel (bromocriptine) is a good Parkinson's disease drug that acts like dopamine. Some centers that have studied this drug think that it works better than the other Parkinson's disease medications for RLS. Other centers have found Permax and others to be better. The side effects of all these medications are similar, and tend to be more or less depending on the individual.

Check with your fertility doctor, but the combination of treating RLS and infertility would kill two birds with one stone.


Subject: Restless Legs
Date: Sun, 29 Mar 1998 22:05:24 -0800

I am 39 and have had restless legs since I was 24. My great aunts had restless legs. I usually get them 5 or 10 minutes after lying in bed at night. For some reason, lying in bed during the day and taking a nap does not cause my legs to get restless...go figure. I have successfully rid myself of restless legs through 3 different types of "remedies".

First, for 10 years, I was able to sleep on the floor. I put a pillow between my legs and was able to sleep fairly well in a sleeping bag next to my bed. I sleep on my side and found a pillow or some other object putting a slight amount of pressure on my back seemed to work well. However, after 10 years, this did not work as well, so for the next 5 years, I only slept half of the time.

I learned of 2 over the counter dietary supplements which have worked very well for me over the past year. They are:

Silent Night, by Natures Way. Apparently the Valerian Root is the "active" ingredient. For some reason the Natures Way brand name is the only one which works for me. I can take it for about 2 weeks before it no longer works, then I go to step B (below). This must be taken 20 minutes before bedtime. If you wait until your legs are restless, it does not seem to work.

PYCNOGENOL by Sundown Vitamins. This is a Maritime Pine Tree Extract with other things. I have not tried other brand names. This works 2 minutes after I take it, so if I get in bed and get restless legs, I can get up and take the pills and by the time I get back to bed, my legs are fine. After I take this for a couple of weeks, I go back to the Natures Way product, only because I am hesitant to take too much of anything.

I hope this helps.
James Z.

Medical Reply

Thanks for the letter. We will post it and see if others benefit or have had similar experiences.


Date: Mon, 30 Mar 1998 02:49:43 EST
Subject: RLS

I was told that you might be interested in my story due to the extreme case of RLS I have.

My RLS can only be explained by saying it is the most extreme pain I have ever had. It feels like someone tied my ankles and wrist's to the bumpers of to semi trucks, and they are slowly driving in the opposite direction, and my muscles are being pulled apart. It is in my legs and my arms, and has been getting worse everyday for the past 2 years.

I have Fibromyalgia also, and have experienced 3 Grand Mal seizures in the past year, and also have really bad head aches, and I vomit from them, but they don't sound the same as migraines. I have had a MRI, and they seen some calcium deposits, but nothing really wrong?

I have seen several doctors but none really help or understand. I have taken Ultram which has helped me a great deal until the past year, and off and on I have taken Ambien, and this also helps somewhat. I feel I need a much stronger pain killer, cause I have the RLS all day, and night, but I am concerned about getting addicted, but at this point I don't care.

I feel as if I am at the end of my rope, I can't live with this extreme pain another day, and if I can't get some help soon, I have decided to end my life. A person can't go on with such pain, knowing the rest of your life it will be like this. Not like having a terminal illness where you know what the outcome will be.

Can you please help me!!!

Geri H.,
Hotchkiss, CO

Medical Reply

Most doctors, including those of us who treat RLS, are very careful when prescribing narcotics. Even with the best of intentions and care some patients will get tolerant and addicted to the medication.

That is however, not a reason to withhold these medications when necessary in treating RLS or other disorders. We always try to use the lowest potency narcotic available to do the job, but when stronger ones are necessary, the experience RLS doctor will know that they should be employed and use them.

Ultram is a very good pain medication (and the only non-narcotic pain killer that works) for RLS, but it does not help everyone. The next drugs to be tried in increasing order of strength are; Vicodin, Percodan, Methadone and then even Morphine. We have used them all, when necessary in severe, refractory cases.

Before starting stronger pain killers, it might be of benefit to try a course of the Parkinson's disease drugs, such as Permax. These are often effective, and can be combined with your usual drugs to give you complete relief.


Subject: UPDATE ON UNIQUE RLS EXPERIENCE
Date: Tue, 31 Mar 1998 16:12:19 -0800

By my e-mail of February 17 (now posted on page 9 of your web site) I described by experience with blood pressure medication exacerbating my RLS. My RLS began after a partial nephrectomy for a renal cell carcinoma on my left kidney in August 1996 and continued to worsen until recently. There are two significant items to report:

(1) My RLS was partly controlled by Permax, codeine, and Darvocet. Shortly after my last e-mail, a friend sent me a health tonic remedy called Dr. Christopher's B&B Extract. It consists of an alcohol extract of Blue and Black Cohosh roots and Verysin, Skullcap, and Lobelia herbs. Surprisingly it helped! It did not always work nor did it help completely, but it definitely helped! The address on the bottle is Dr. Christopher's Original Formulas, PO Box 777, Springville, UT 84663, (800)453-1406.

(2) On a more definitive note, I had surgery on March 17 for a periaortic tumor (in a lymph node) and removal of the rest of the left kidney (which turned out to have a small starting low grade renal carcinoma at the center of the remaining kidney). Since the day of the surgery, my RLS has completely disappeared! This makes one wonder whether these slow growing tumors were manufacturing some chemical that caused the RLS. If the RLS remains in remission for another month or so, some connection will be indicated. Have any others had similar experiences?

Edward J. L., Ph.D.

Medical Reply

We hear a lot a varied things that cure RLS in individuals. Very few of these seem to have much in common, including herbal remedies, surgeries, etc. This is what makes finding a common thread leading to a universal treatment for RLS so frustrating.

We will post your letter on our page and see if any others have had similar experiences.


Date: Tue, 31 Mar 1998 17:55:05 EST
Subject: Restless Legs Syndrome

Janell - 56 year old female

I have had what we have affectionately called "dancing legs" since I was a young girl. For many years, as others have mentioned, I was approached by physicians with the attitude of "your crazy" and they always told me that they never heard of such a thing.  I am so thankful for your sight as I came upon it today and at least I know that I a not alone and although there are some distinct differences in peoples symptoms, the similarities are just staggering.

My symptoms started when I was very young (about 8 - 10 years of age). I first noticed it in my feet and felt like they had gone to sleep. At about age 18 I noticed the tingling, twitching, feeling like worms crawling in the calf of my legs. I could not then nor now sit in one place after 6 PM for any length of time. I have noticed that if I lie down that I can be comfortable for 15 to 20 minutes stretches at a time before repositioning. I have tried numerous medications to no avail: Neurontin, Prozac, and aspirin. There have been other medications but I cannot not remember them all. I too have had all the MRI's, blood tests, neurological tests, etc. and no one has been able to tell me anything.

Approximately 10 years ago this progressed to my thigh area and occasionally I experience problems with my hands and arms but not often. During the last couple of years I have increasingly noticed, at the end of my tail bone, a feeling like a buzzing. I feel like someone let a bee loose in my pants. I also have noticed as the years progress that this is not strictly happening at night time. Anytime I sit or lie down for any length of time, 20 to 30 minutes , I run the risk of feeling this horrid set of symptoms.

I understand the inclination of others to feel desperate enough to kill oneself but I have never contemplated it as I value life to much for that. The condition has however made me feel completely hopeless on occasions as it is difficult to have a normal (whatever that is) life. I get uncomfortable as a guest in someone's home as I can hardly sit still at times. If we are overnight guests somewhere, I feel like lying down early just to be relieved for a few minutes.

I have had best relief from plain old aspirin or ibuprofen. If a take three ibuprofen before bedtime, I at least can go to sleep. I have also experienced the exaggeration of this condition if I take an antihistamine. I virtually get no sleep if I take an antihistamine and did not realize until finding this web page the reason for this.

I also add that I am an adult attention deficit patient and am taking Wellbutrin. I have not noticed any difference in my condition with this medication and have been on it for approximately 2 years.

Thank you all so much for sharing. I intend to try some of the others remedies and I so appreciate the availability of information. Wish I were nearer the support group. Praise God for others like myself and I will include all sufferers in my prayers.

Blessings,
Janell, Iowa

Medical Reply

If you have not already tried them, you may want to try Permax (check our Treatment Page for details). You can add a narcotic, such as Vicodin when needed and a sleeping pill, such as Xanax at bedtime. This combination (or similar variations) seems to work very well in many RLS sufferers.

Let us know how you do.


Subject: RLS
Date: Tue, 31 Mar 1998 08:58:16 -0900

Thank you for having this forum.  Over a year ago I was diagnosed with Fibromyalgia.  It hit me hard after I quit taking Fen-Phen (I was on it for 8 months).  Symptoms were mostly very tight, sometimes painful muscles, random little muscle twitches, sleep disorder , some fatigue and irritable bladder, feeling like I rip muscles when doing very little, especially around my period. I was positive for the tender point test too. All of my labs were within or very close to normal -so this was the diagnoses.

But I do not have the pain you hear about with others with Fibromyalgia. They put me on Paxil in the a.m. and Elavil p.m. I changed p.m. medication several times due to side effects. I tried trazadone...tried desipramine ( I mostly took this). I tried Serzone, Effexor instead of Paxil. I quit these due to side effects...So I went back to Paxil/desipramine.   Anyway some where along the way I have developed this strange "buzzing" sensation in my feet and lower legs. Mostly my left leg. I have it almost all of the time. It is not painful and it does not keep me awake ( just sometimes hard to get to sleep)

I got scared about this, so I quit all of my medications. About 2 weeks off medications, I went to a neurologist, he said it was nothing , maybe drug clearing, don't worry about it. ( I can walk. jump, run, everything ok) So then I went to the doctor who prescribed the medications she said , humm, I don't know what that is ( prescribed Klonopin .05 as needed basis). That's when I checked online and someone referred me to you!!! Thank God!!

Anyway , I did the blood studies you suggested, they came back yesterday . I'm low normal in most areas but my ferritin was significantly low (the doctor said. 5.4).   Why would I have only low ferritin, is this typical for a woman? I do have periodic heavy menstruation??  He put me on Slow Fe- 2 tabs times a day (its only 50mg elemental iron). He is not familiar with RLS and is treating it like anemia, wants to check me in 6mos. 

Meanwhile I'm living with this buzzing leg thing, I don't want to take anymore drugs if I don't have to (as in antidepressants, I do have a tendency to get depressed over this though).  I don't mind the vitamins but it doesn't sound like I am taking enough iron, what would you recommend??  I took 1/2 of the Klonopin last night, had night mares but it helped only a little. The buzzing today is a little less, maybe. It does go away when I'm walking or driving and spontaneously at other times. Does this sound like RLS?? ( I get nervous when I read about peripheral neuropathies and stuff like that.   I don't think I have it though because I can run around just fine, sometimes I wonder if I had ADHA as a kid?)

If it sounds like RLS, I would like to try the iron and vitamins first to see if it goes away. What doses and what exactly would you recommend?? Obviously, this worries me quite a bit. I have three children,& work full time. Thank you so much for your time and for answering all of these questions.

Terry V.S.

P.S. I live in AK on an Island so my resources are limited.

Medical Reply

It does sound as if you have RLS. Iron therapy is a good idea if you have low ferritin. Low ferritin is common in women, as you lose iron in your menstrual flow, which is not often replaced adequately with diet. The ferritin is good indication of your iron stores, so it may be low when your other tests are still normal or borderline.

You are being very reasonable and logical by first trying iron therapy, which may resolve your RLS problems. Two to three Slow Fe tablets per day is a good dose and should replace your decreased iron stores within 6 months.

If after 6 months, your RLS is not better, then you might want to consider medication to relieve your symptoms. Xanax might be a better bedtime choice than Klonopin. Permax is often very helpful to help RLS. Read our RLS Treatment Page for more details.

A Reply from Terry

Subject: RE: RLS
Date: Tue, 31 Mar 1998 21:12:04 -0900

Thank you very much for writing me back. The other thing that I have that I didn't mention is that if I am around something that is buzzing, then my feet start buzzing , its as if they pick up the vibration and take it on. Or if I use a blow dryer or electric toothbrush , my hand will continue to buzz for a few minutes after. Do others talk about this??

How long after taking Iron do you think I'll notice a difference?? Thank you again!!!

Sincerely,
Terry V. S.

Medical Reply

If iron therapy is going to help, it should kick in slowly over the next 1-6 months. There is a lot of individual variability (as with most things in RLS), so it is difficult to count of a given time period.

Most RLS patients have a significant amount of trouble describing their symptoms. We have heard all sorts of explanations of the RLS discomfort, but yours are fairly common. Buzzing in the limbs seem to be quite a frequent complaint.

Another Reply from Terry

Subject: RE: RLS
Date: Wed, 1 Apr 1998 07:58:53 -0900

Thank You very much for your help!!! My doctor was just passing this off as Fibromyalgia and didn't test me for the iron problems, he sort of made me feel like it was all in my head. I got my chiropractor to do the iron studies, and Eureka something was there!!! Yesterday my doctor was so nice to me and DIDN'T treat me like I was a nut case, finally!! He is a nice man though, just too busy for this small town.

I can't tell you how much I appreciate you validating these problem legs!!! I am now wondering if I have Fibromyalgia at all, I sure don't have the constant pain that they have. The most annoying thing right now is the leg thing and random muscle twitches and this funny microspasm feeling thing I get everywhere. I have read on your forum people talk about this kind of thing associated with RLS ?

Thank you again!!
Terry V.S.

Medical Reply

Glad to hear that we have helped you. Fibromyalgia tends to be more generalized (including non-RLS areas such as the back). There is a lot of overlap between the two disorders, but they are actually very distinct from each other.

The muscle twitching with RLS is called PLMD (Periodic Leg Movement Disorder) and is very common in RLS (more than 90% of RLS sufferers have it).

Another Reply from Terry

Subject: RE: RLS
Date: Wed, 1 Apr 1998 19:16:23 -0900

The twitching I have is random, little sometimes not visible type. Isn't PLMD more like when your legs kind of jerk?? My twitching happens everywhere, legs to sides... Does that sound more like Fibromyalgia than RLS? Thank you again!!!

Terry V.S.

Medical Reply

The twitches of PLMD occur randomly (as you have noted), but often occur in "bunches" of a few to many muscle movements. They can be full leg jerks which can even kick your spouse out of bed, or non-visible muscle twitching only noticeable to the patient.

The PLMD's can occur in any set of muscles in the body, but the legs and arms are the most common. Your twitches do sound more like RLS rather than Fibromyalgia, which is not known to have this type of muscle problem.

Another Reply from Terry

Subject: RE: RLS
Date: Thu, 2 Apr 1998 07:59:13 -0900

I have been taking the Klonopin (only 1/2 of a .5) for the last couple of nights. The day time ( buzzy leg stuff) seems very noticeable in the a.m. and somewhat throughout the day now. Is that possible?? Or is it most likely just me and maybe I need to ! take more to get a therapeutic result?? I am taking the Iron and other vits suggested by folks on your board. I thank you so much for your help!!! Tv

Medical Reply

You do not want to take more of the Klonopin, as this may cause you to be very sleepy during the daytime. Klonopin is only for the nighttime RLS. For the daytime, Parkinson's disease medications (Permax) or Narcotics (Vicodin) are better.

Another Reply from Terry

Subject: RE: RLS
Date: Mon, 6 Apr 1998 17:13:12 -0800

Its me again.

One more question, or two... I seem to have this buzzy leg thing a lot in my (especially left) feet too!! Is it common in the feet too?? Its always in my left foot sometimes in my calves. Is Ibuprofen supposed to help or is aspirin or Tylenol better. I know you recommend Vicodin but I'm taking .5 of the Klonopin right now and I don't think the doctor would go for more meds. I am taking the Iron. I also experience this buzzy feet/leg thing in the day , a lot. It does not keep me awake, sometimes its hard to go to sleep though.

Thank you so much for answering me, I really appreciate it.

Thank You!!!
Terry V. S.

Medical Reply

The Klonopin may not help the "buzzy" problem in your feet (RLS is common in feet). If you are satisfied with ibuprofen, Tylenol or aspirin (they are all equally good, it is an individual thing) then you do not need any more treatment. Otherwise, you should get more help (likely medication) from your doctor.

Doctors knowledgeable in RLS will not withhold medication when necessary (it should not depend on whether or not your doctor will "go for more medication" or not).

Another Reply from Terry

Date: Monday, April 06, 1998 8:22 PM
Subject: RE: RLS

Are you saying that Klonopin only helps "get to sleep" and not relieving the "buzzy" sensation in the feet or legs during the day?? Or should it help that go away or keep it "at bay" if I take it 2 times a day (1/2 a 0.5 mg, say 9am and 9pm) My doctor says see what works...for dosing. So far the two times I took a 1/2 a Klonopin 2 times a day I was not sleepy. I normally have some anxiety at times- so I've felt alright and not groggy! I know this is a small dose, right??

Thank you once again!!
Terry V.S.

Medical Reply

Generally that is correct about the Klonopin. You are on a low dose of Klonopin, and you are right, if you are a very hyper (anxious) person, the Klonopin will only calm you down to near normal, and not make you sleepy.



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