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Date: Thu, 14 Aug 1997 03:13:04 -0400
Subject: RLS
Please help!!! I have had this problem for years, only getting worse the last few months. I don't sleep until 4, 5 or 6 AM every night (it's 2AM now). I just found the official name for this syndrome and was at least glad to know it was real and not just my mind. I would like to know what eases the symptoms.
Just saw my family physician who took blood tests to check if any other problems and he put me on Nortriptyline 25mg, an antidepressant. No relief yet. I'm never up much before 11am and am having trouble finding work ( I am a nurse working night shifts for an agency right now). I'm tired all the time and unable to accomplish much of anything, which makes me depressed. I am getting desperate for some answers...I hope you can help.
Please send me any info, which I will pass on to my doctor.
Thank you,
Marjie R.
Mandeville, LA.
Medical Advice
If you have logged onto our web page, then you have seen that we have a RLS Treatment section that you can click and then print out. Bring this to your doctor for the two of you to review and decide on a treatment plan. You should be able to get considerable relief and improvement for your RLS condition.
Date: Thu, 14 Aug 1997 10:37:04 -0400 (EDT)
Subject: Re: Drug Holidays
I am taking Klonopin 1.5 mg a night (RLS/PLMD) and want to do the drug holidays every two weeks for the two- three days so I do not develop tolerance. It is so far the only drug that helps me the most. I've tried the holiday once and it was kind of rough for those days. I have Chronic Fatigue Syndrome and the lack of good sleep made it worse and or the withdrawal symptoms, I 'm not sure which, probably both. I have had limited success with Ambien and since Ambien is not a benzodiazepine, I wonder if it would be okay to take the Ambien during the holidays?
The little success with the Ambien would be better than nothing if I could get away with it for those few days. What do you think?
Thanks for your help,
Rudy
Medical Advice
Ambien may be a good choice for a drug holiday from Klonopin (and other benzodiazepines). It does act on some (but not all) of the same receptors as benzodiazepines, so there could be some theoretical problems with cross reactivity (which would lessen it's usefulness for drug holidays from Klonopin). There has not been a lot of experience with this regimen, so only time will tell.
The best recommendation however, is to always try to use a different class of drug, rather than a different drug in the same class, for drug holidays.
Date: Thu, 14 Aug 1997 03:30:09 -0400 (EDT)
Subject: Is RLS related to the lower back?
I have RLS for 3 years now. It is not as bad as I had it 2 years ago. From my experience, think that the RLS is generated from the lower part of your back. The reason is because it is worse when you lie down or sitting not straight.
I think at the lower part of your back, there are lots of nerves in that area and when you put pressure on that area, the RLS starts. Also, when you lying flat on your stomach, you'll get the instant relief. Standing up also give you instant relief which may be due to the blood circulation but still, there is no pressure to the lower back.
Sometimes when I drive, without being able to stand up, I pinch some nerve in the side of my lower back, and I feel the signal send down to the RLS area and release it. You got pick the right nerve to pinch, so you got to pinch at different places until you feel the effect at the RLS area. If this is case, do you think we should try a Chiropractor? or a some kind of bone (disk) specialist?
Medical Advice
Your RLS trigger from your back is a little different than most RLS patients, but there is a great deal of variation in RLS symptoms. As far as we can tell, no research as of yet has been able to localize the cause or area that is responsible for RLS.
Chiropractic treatment has helped a few RLS patients, but the majority do not get sustained or significant enough improvement to warrant continuing this therapy.
Date: Sat, 16 Aug 1997 15:55:36 -0500
Subject: no citric acid
Since avoiding citric acid late at night, my RLS has decreased drastically! I am learning though, that citric acid is in soft drinks, sauces, some teas, some ice creams and added to many other products to increase tartness. Since becoming aware of the relation, I have been able to tie almost every RLS incident to something I ate or drank that contained citric acid.
From: AFD, Washington, D.C.
Date: Mon, 18 Aug 1997 01:02:41 -0400 (EDT)
Subject: Re: Message from Leon K. 8/17/97
Thanks for your reply. I shared your response with my doctor here and explained who you were. I'm going to keep going on the Ultram and Clonazepam for 6 weeks and then take a 4 day drug holiday using codeine and Ambien as substitutes.
I have been really impressed with the combination of Ultram and Clonazepam and will let you know how things work out.
Again, my thanks,
Leon K.
Subject: RLS
Date: Mon, 18 Aug 1997 21:59:17 -0400
Thank you for the very informative material on RLS. I have had RLS for most of my life and have noticed that my symptoms are worse around the time of full moon and become especially severe at times of unusual lunar occurrences. I am wondering if anyone else has experienced this.
Awake and moving in South Carolina
E T.
Medical Reply
We have not yet heard of RLS being associated with the phases of the moon, but there are always a lot of firsts when interacting on the Internet. I will post this note and see if we get any others who have any similar experiences.
Date: Tue, 19 Aug 1997 02:53:41 -0700
Subject: RLS Inquiry
After reading the letters written by so many RLS sufferers, I had many of my questions answered. I do however want to know if what I have settled on is the best and a safe treatment. First I should let you know that I have been taking Vicodin for about four years (not daily), for help in dealing with a ruptured lower back disc. For years I have suffered from RLS. My father also had this affliction, and suffered for many years without relief. I was lucky enough to have the opportunity to bring this subject up to my Neurologist, I could only describe the feeling in my father's terms, he called it the "heebee-jeebies".
The doctor put me on Clonazepam 1 g, to be taken at bedtime; 1 or 2 tablets as needed. This worked fine until this last May. During this time I was needed to care for my mother who is incapacitated by a stroke. I did a lot of lifting, and injured my back the first day I was caring for her. I suffered through three weeks of intense pain. I finally recovered, but was left with not only a greater intensity of discomfort by the RLS, but also for the first time I began to feel this horrible sensation in my arms and the top of my hands!
Since then no matter what time I get to bed, at approximately 4 A.M. my arms wake me up. I have little problems during the day, and can easily get rid of the feeling just by moving around a little. But at night it starts with my legs, and then early morning my arms take over.
One morning I took a Vicodin to see if it would bring relief, and it did! But when I take it at four o'clock in the morning, I want to sleep all day. At this point let me add that I cannot remember a time that I have had a good nights sleep, I always wake up tired, and feel like I'm walking through jello most of the time.
Everything seems to take such an effort to do, I keep thinking "if only I could get just one full nights sleep, I wonder what I'd feel like the next day, would I have more interest in life, would I not feel so sleepy?" Is there a different medication that I could take that would allow me to wake up alert and feeling alive? I'm not a coffee drinker, but will usually have 1 can of diet coke a day. I also take a diet pill, 4 to 5 times a week. This would have nothing to do with the increase of my symptoms, I have been taking diet medication for several years, well after the onset of my RLS. Any information that you can give me would be greatly appreciated.
Sincerely,
Lynda M.
Medical Reply
There are two possibilities that you and your doctor may want to consider.
1) Instead of Vicodin, you may want to try Ultram. This is a synthetic pain medication that is not chemically related to the narcotics and may or may not cause as much drowsiness as Vicodin.
2) Consider another class of medication. Sinemet is a good choice, although for early morning and daytime usage, Permax is a very good choice. Check with your physician and discuss the pros and cons of using these medications for you and you should get adequate relief.
Date: 97-09-01 01:22:16 EDT
Although illegal, after trying other herbs, I find that a few puffs of marijuana works best. It instantly relieves my discomfort and for many hours of restless sleep.
Debbie V.
Medical Reply
This is an interesting observation, but of course marijauna is illegal in most states and possibly even here in California despite the passing of a recent proposition (the patient needs a doctors note).
Date: Fri, 22 Aug 1997 00:08:12 -0400 (EDT)
Subject: Klonopin
I take 1 g of Klonopin and Sinemet CR 25/100, 2 g before bedtime. My problem is , my legs want to move and walk around the house until 2:00. Then I wake up very often at night (about 4 times) but return to sleep. My PLMD wakes me up around 9:00. Can't stay awake(very tired) sleep until 2:00, even thought my legs are kicking, I can't get up. Could the sleepiness come from Klonopin? Does anyone else have the same problem?
Ted Z.
Medical Reply
Klonopin is notorious for causing daytime sleepiness, so that is the first thing that I would change. Consider Xanax or Ambien which are much quicker acting (maybe your legs will not be jumping around until 2 am with these new drugs) and thus will not cause daytime sleepiness/drowsiness.
Date: Sat, 23 Aug 1997 13:43:43 +0100
Subject: amitriptyline - My mother's
My mother's doctor recently prescribed amitriptyline to aid in her restless leg problem. I have not been able to find any information in English regarding this medication. If you are familiar with this medication, I.e. its uses, dosages, indications, reactions, etc. I would greatly appreciate hearing from you. This is rather urgent.
Thank you,
Cathryn G.
Medical Reply
Amitriptyline goes under the trade name Elavil. It is a tricyclic antidepressant and may help or worsen RLS. It is definitely not a first line drug for RLS. The dose of this medication for RLS is difficult to determine (as we really do not use this for RLS), but 10 - 100 mg at bedtime starting with a low dose then working up to the higher dose only if necessary is what most doctors would advise.
Good luck, but you may want to have your mother's doctor consider the primary drugs on our treatment page list.
Date: Sat, 23 Aug 1997 20:27:16 -0400
Subject: RLS Symptoms???????
I just happened on your web site and hopefully this is the ONE. Ten years ago my husband was diagnosed with MS but they were never sure. He has no muscle weakness in fact jogs 3-4 times a week. However, he has a sleep problem in that he never gets sleepy but oh god he gets so exhausted.
Also complains about "sensations" in his legs which he has described as electrical jolts, creepiness, and firing neurons. He especially finds this very bad when he tries to lie down at night. He is overwhelming tired to the point he can't even speak but he cannot relax because of all of these sensations felt mainly in the legs but sometimes in the arms and shoulder region - has mentioned that sometimes he feels its in his heart.
For years he has been taking Imovane and triadepin to "knock him out". He's now at a point where he wants to die- in fact the thought of living much longer is very distressing. He feels as if something has taken over his whole body and if he could just sleep it would be so much better. Interestingly three years ago he had anesthetic (for knee probe) for about an hour. He felt so rejuvenated for the rest of the day and all the brain fog lifted. He kept saying over and over again "god I feel so good, so refreshed is this what normal people feel?
He is a very physical person but I have now noticed he goes at projects with a frenzy and is constantly in a frenzy - says as long as he is in this physical state he does not feel the "sensations" I visited his neurologist last week and he said he felt it was not MS so he is sending him to a neuro-psychiatrist.
I read every story on your site and so many of the symptoms sound so familiar - I will tell him tomorrow he just lies on the bed at night and "watches" TV because it is so mundane. He also tenses his body very much and it is terrible to see how his legs are tensed and fists clenched to ward off these feelings. He has cut himself off from everyone finds it very difficult to have people around, doesn't want to talk or listen to anyone - we feel is due to his mind being so tired.
He had two bouts of meningitis as a boy and fell out of a tree about 15 years ago- cut his shins which got infected and he had a raging fever. Shortly after that he had inflammation on the brain - the doctors thought was either meningitis or encephalitis, nobody ever knew for sure. 3 or 4 years or less later he developed all kinds of problems - of which not being able to ever relax or sleep and all the sensations are now the most prominent. He often mentions having very agitated dreams as if the brain is in turmoil and tells how many times when he awakens throughout the night he feels so awful he wishes he could die on the spot. Diagnosed with sleep apnea few years ago but could not become used to the CPAP.
Oftentimes when we discuss his condition he keeps telling me he's "just hanging on to his sanity for dear life".
Can you please take some time and shed any light on this. I will gladly keep you informed on any new, if any, changes. (my husband is 50 yrs old)
Sincerely,
Judy
Medical Reply
Your husbands symptoms sound very much like RLS. He should see a sleep specialist (especially one who is comfortable treating RLS) and then should very likely be able to get treatment that will relieve his complaints. With the care of a knowledgible physician, most patients with RLS can do very well. Let us know how he does.
Date: Tue, 26 Aug 1997 03:21:18 -0400 (EDT)
Subject: Vitamin E for rls
To those of you who is desperate and sick and tired of all the sedative drugs, may be
you can try one more thing, the Vitamin E 400. I was told by other patient and tried it
myself and it seemed to work. It took about a week before I saw the result.
I know you think this is just another myth, but if you have no other help, try it.
Medical Reply
Vitamin E may help some RLS patients, but unfortunately most RLS who have tried Vitamin E have not gotten relief from their RLS complaints. However, Vitamin E may have several other medical benefits, so taking this on a daily basis is a good idea anyway.
Date: Sat, 30 Aug 1997 06:24:24 -0400 (EDT)
Subject: RLS with healthy people
Hi all,
I would like to ask all the people who suffer RLS that if there is any one of you out
there who has normal health. What I mean by normal health is that you don't have any kind
of chronic illness and you are not under any other drug beside drugs for RLS. I am trying
to find out if RLS is a desease itself or a side effect of other desease or drugs.
Medical Reply
I have seen thousands of RLS patients and can easily answer your question. Most of the RLS patients have relatively mild disease and take no medication at all (even for RLS). I also have many patients who are only on RLS medication and take no other pills. RLS does not seem to be associated with any other medications or diseases as far as medical science can tell (at this time).
Date: Sat, 30 Aug 1997 11:19:47 -0400 (EDT)
Subject: RLS and Enzyme Therapy
In April of 1997 I submitted a letter outlining my experience with digestive enzymes and my mother's response to the enzymes. My mom had experienced RLS for nearly 48 years and after 3 to 4 weeks of supplementing her diet with the digestive enzymes experienced complete relief of her RLS symptoms.
I gave my email address and unfortunately did not return to that specific address until very recently. I have received dozens of inquiries regarding the specific enzymes my mom used, numerous requests for more information, etc. I want to apologize to those who wrote and did not receive a reply.
The company I purchase the enzymes from has developed a nice brochure listing their products and giving a brief explanation of how they work. However, unless one wants more information than is included in my initial letter of April 1997 I would suggest rereading my letter as I think it explains the concept well. For additional information there are numerous books on the subject. The best I have read is Enzyme Nutrition by Howell.
If anyone is interested in ordering the products, please contact me at Kelmore580@aol.com and please give me your real name(not your screen name), and your address with street, city, etc. I will have the company mail you a brochure immediately.
This is not a solicitation to sell these enzymes. In fact I have hesitated to respond to the inquires but feel it is appropriate now. One additional comment: these products work by allowing your body to "heal itself" by aiding your body with the digestive process. The help with digestion, while a nice benefit, is not the actual final purpose of enzyme supplementation. Our body uses from 40 to 80% of its available energy for the digestive process. By "helping" our bodies with digestion through enzyme supplements, we give our bodies the opportunity to utilize the energy in other areas more specific to wellness and healing. We have a limited supply of both digestive and metabolic enzymes. In the life process the metabolic enzymes are responsible for every action and thought we experience. Unfortunately, digestion takes precedence over metabolism with regard to which enzymes are produced and released more readily. By eating foods lacking their own digestive enzymes(basically all cooked foods), our bodies are constantly producing and releasing digestive enzymes at the expense of metabolic enzymes. We continue to release enough metabolic enzymes to "keep us alive", but health and wellness suffer.
These digestive enzymes allow our bodies "a rest" from the digestive process and induce the release of the necessary metabolic enzymes. Please read my letter of April 1997 for a further hypothesis. But if you would like a brochure please provide me with the above referenced information and I will have one sent you.
Best wishes,
Mike Elmore
Date: Mon, 01 Sep 1997 10:07:36 -0700
Subject: Restless Legs
I have suffered from restless legs since childhood. The symptoms have come and gone, worsened and lessened over the years. A few months ago I tried an herbal product to lose weight, and amost immediately had an increase in severity of RLS episodes. This product contained chromium picolinate and other herbs. I quit taking the product and the symptoms diminished greatly, but are still with me more than before.
I was also recently diagnosed with fibromyalgia, and have noticed that the RLS has increased to the point of nightly episodes, not only in my legs, but arms and back too. Is there any connection between fibromyalgia and RLS? I also have always felt that RLS was related to my varicose veins somehow.
Medical Reply
Fibromyalgia is not well understood, but some experts think that it may be caused by poor sleep (decreased deep sleep) which is certainly the case in most RLS patients. Many of the RLS patients have fibromyalgia type complaints. No other real link is known medically to exist between RLS and fibromyalgia.
If you check our treatment page, you will see that there is one study that shows that treatment of varicose veins seemed to help RLS. This has not been reproduced by other groups as yet.
Date: Tue, 02 Sep 1997 15:00:50 -0700
Subject: RLS...WHO ME?
I just finished reading the many letters written to your group on RLS. I feel as though I have been reading a diary of my own life! I have just recently discovered your web site and others like it and am very pleased to find that there is help out there.
I have been very frustrated with my condition, not only because of the common symptoms, but also because I have had a hard time believing that I could even have this condition. I am a 35 year old male who is very athletic. I have done martial arts for most of my life, I have watched my diet for most of my life, and stayed away from harmful substances. I consider myself to be very healthy. which is why, when I began to experience symptoms of RLS a year ago, I thought it must be some serious, rare disease, because I was too young, active and healthy for it to be anything else.
Well, a year has passed and I have severe symptoms of RLS and every blood test, urine test, MRI, EMG, etc. has come up negative....so I am still asking the question.."What the hell is wrong with me???" I have experienced every symptom, feeling, discomfort, thoughts, etc. that I have read in the 100+ e-mails that I have read and I see that there are many others in the same boat. It just doesn't make since that anyone, at a young age, that has always taken particularly good care of themselves would have to experience something so terrible. It would almost be easier to accept if I was told I had "such and such" disease, but to have something that is only speculation and that nobody really knows anything about is sometimes difficult to handle.
I have began seeing a neurologist and he is experimenting with different medications, however, nothing has worked yet. I do not like taking medicine mainly because I have always been so cautious about what I put into my body that I don't like the idea of putting chemicals in that may have adverse effects on my homeostasis.
I know that I am rambling now and I haven't said anything new. I am just totally at a loss as to what to do. I have always worked out and watched my diet because I wanted to improve the quality of my life, and now it all seems to be for nothing. I hate to even think about what I would feel like if I was a fat, couch potato that never did anything and had this.
Thanks for letting me vent. I will continue to read up on any new findings on your site. Thanks.
Mike J. (Mesa, Arizona)
Medical Reply
You do not have a speculative disease, but a very real one called Restless Legs Syndrome. The only speculative part is what causes this disease. For your information, we do not know what causes high blood pressure, Multiple Sclerosis, most cancers, diabetes, ( and at least a few hundred other diseases that are very real), yet no one calls these a "speculative disease".
It is true that most doctors do not know much about this disease, but there are lots of sleep specialists who know lots about RLS and can surely help you.
Date: Tue, 2 Sep 1997 22:01:50 -0400
Subject: RLS
Thank God for your Web page. I didn't realize there were so many people going through the same thing as I have been. I also didn't realize that it had a name.
I am a 42 yr old white female in Jacksonville, Fl.
When I was little (around 10), I used to jiggle my legs or bounce them against the side of the footboard or mattress to "rock" myself to sleep. As a teenager and young adult, I would easily have cramps in the calves and feet (toes and arches) when I went to bed at night or when relaxing sitting watching TV. The cramps have lessened, but still occur when I wear high heels or do strenous leg exercises.
As an adult, I have always taken a long time to fall asleep, typically 1-2 hours. However, there have been sporadic instances of the "creepy feeling" or a tenseness in the leg muscles. Sometimes it feels like my nerves are jumping. Occasionally my feet just seem to jump. I also have occasionally burning in the bottom of my feet. I usually just hang them outside the covers to try to cool them off. I have tried getting up, walking, tightening the muscles and then relaxing them, herbal teas, soft music, hot baths with limited relief.
Recently I started taking Zoloft (150mg 2 times a day) for depression and Ativan (2 mg at bedtime). The Ativan didn't seem to make me go to sleep any quicker, and I had a tough time getting up in the morning (which isn't great when you work).
The doctor then swithched me to Halcion (.25mg a bedtime) along with the Zoloft. I thought I would come off the bed! The jerking was so severe that my legs actually did jump off the mattress. Needless to say, after about a week of this, no more Halcion.
I just saw the Dr today and asked for Ambien. Instead, he suggested I try Klonopin (2 mg at bedtime). I don't know why he wouldn't just prescribe the Ambien. Is there some reason to prefer Klonopin?
As a side note, I think my mother and sister have suffered from this for years, but never knew what it was.
Thank you for all your support!
Mary F.
Medical Reply
Klonopin is often the "preferred" medication in the sedative class for RLS. This is because it was the first one tried (see our treatment page for further explaination) and is still in most of the text books as the treatment of choice.
Most sleep specialists however, do not use much Klonopin. That is because it has a very long half life and thus will produce significant daytime sleepiness. If you had trouble with Ativan (moderately long half life), you should have much more daytime sleepiness with Klonopin.
Ambien may or not work better, often trial and error is needed while trying most all of the sedatives until you find the one that works for you. Physicians may not be eager to try Ambien as it is the newest sedative drug and they are not as familar with its usage, and it is an expensive medication.
Date: Wed, 3 Sep 1997 02:26:12 -0400 (EDT)
Subject: RLS..... Thanks! YOU ARE APPRECIATED!
Hi,
Just wanted to thank you for your support on-line for RLS. I have suffered with it for many years intermittently. I have had Systemic Lupus for 17 years and also suffer with RA (rheumatoid arthritis).
It's just nice to know that I am not alone with this frustrating restless leg thing!
(Although I certainly wouldn't wish this on anyone!)
Thanks again for your caring concern!
Patti
I refer to it as "Worm legs"!
Date: Wed, 03 Sep 1997 19:08:06 -0700
Subject: warning
Another RLS site warns that RLS can be serious and that a physician should be consulted
ASAP.
I have RLS but I sleep through it. Is there any other reason besides seeking sleep, to
consult a physician? Are there other effects to watch out for?
Thanks,
Marina
Here is the warning from http://www.rls.org/
WARNING AND DISCLAIMER: RESTLESS LEGS SYNDROME CAN BE A SERIOUS DISORDER. PERSONS
SUSPECTING THAT THEY MAY BE AFFLICTED WITH RLS SHOULD CONSULT A PHYSICIAN AS SOON AS
POSSIBLE.
THE RESTLESS LEGS SYNDROME FOUNDATION, INC.
Medical Reply
This is a real warning for people who have more severe RLS than you have. RLS sufferers who cannot sleep due to their RLS and are bothered with this problem during most of the day, can have problems with severe depression (as with any chronic pain disorder) and have even been known to consider suicide.
It may not be causing you much trouble as you have mild symptoms. You do not have to see a physician now, but your RLS might get worse in the future (there is no prevention of the progression of RLS, so there would be no advantage to seek help now), at which point you should get help.
Imagine how you would feel if you has severe complaints, could not sleep or sit still during the daytime and all you doctors told you that you did not really have a disease? This could cause severe depression and thus the RLS Foundation is trying to assure that RLS should not hesitate to seek help.
Date: Thu, 04 Sep 1997 11:37:56 +0100
Subject: RLS symptoms from England
Hi: I know I'm not in South Cal, but your Web site has been of great value, and I'm offering my observations - some of which I haven't seen anywhere else - in the hope that I can contribute to the overall fund of knowledge.
I have had this condition on and off (very much on at the moment) for around 20 years. My mother says she developed it when pregnant with me, then it went when I left the premises (so to speak), but it has returned for her in later life (she's 81). My condition is just of the 'urge to move' variety. Although most noticeable at night, it can turn up anytime. It can drive me to distraction on long-haul flights or car journeys.
My own approach to it involves stretching muscles, mostly down the back of the leg or legs, to obtain temporary (sometimes just a few minutes) relief. But here's the observations I haven't seen anyone else mention so far:
1) When on long flights or car journeys, if I pack up the seat so that my thighs are inclined down, I can go for hours before onset of the sensation. This is vital in buying me a few hours on those long flights.
2) Similarly, sitting in a deep settee can bring it on very quickly.
3) I've noticed this last item particularly after a good meal!
4) Heat, and in particular on the face, seemed to able to have an effect. I noticed this when I used to go for supper with friends who have open fires in both their dining and sitting area. I used to end up lying flat on the floor behind the settee (in a convenient draft) to avoid the combination of the deep settee and the heat. I suppose it's just possible that the open fire coincided with the deep settee, but I found that with my back to an open fire while eating, the sensation would come on even while sitting upright.
5) Vibration can help (!!). I noticed that if I rested my leg on the transmission tunnel of a clunky old car I had, the jiggling effect on my leg at least masked the RLS sensation. Trouble was, I could only reach with one leg... (Wanted -vehicle with trashed transmission but otherwise reliable...)
6) Many favorite exercises in bed for stretching the muscles involve raising the legs over the body - which runs counter to what I've been saying about keeping the legs down. Sitting on the floor, one leg in front, one to the side, then stretching forward over the leg in front, can give the leg a god pull, but it's still not quite like having your ankle up by your neck.....
7) I feel that the state of mind can have some influence. Listening to 'right-brain' music can help in getting to sleep, although I am unsure what direct link there is to the RLS sensation. It's as if the music helps me relax overall in the face of the RLS senstation, rather than getting into the 'Oh no not again' loop. It's not guaranteed to work, and you often wake up again.
8) Similarly, I can sometimes overcome my instinctive reaction to the onset of the sensation, which is to tighten every muscle I can in my legs. It's as if a really successful 'relaxation' can ease the sensation for a few minutes - but it's only a few minutes before it comes on again, and it ramps up to the usual level of 'drive-you-nuts-ness'.
The only benefit to RLS is that all this stretching must help joint suppleness, which is great if you like riding horses like I do.
CB
Date: Thu, 4 Sep 1997 15:11:11 -0400 (EDT)
Subject: Re: RLS with healthy people
I was told my RLS is from Neuropathy since I am a kidney patient. What do you think?
Does it mean my RLS is caused by the toxin in my blood?
Thanks again.
Medical Reply
Unfortunately, we do not know what causes RLS in any conditions. In kidney failure there is an accumulation of toxins and certainly it is likely that they play a role in the causation of RLS, but that is of course speculation. There are many types of neuropathies (nerve disorders) in kidney failure, but no one can say if RLS is really a neuropathy or some other disorder.
Subject: Oops! Should have read more carefully
Date: Fri, 5 Sep 1997 16:18:09 -0700
I wrote once before after an orthopedist diagnosed my problem as RLS. I noted at the time that he didn't seem to know much about it and just grabbed his Rx pad and began prescibing several medications. None of them helped and, in fact, one of them, elavil, left me so groggy for a day that I never took it again.
But...I ordered and received "The Sleep Thief" and I'm glad I did because I discovered almost immediately that while most people with RLS also have PLMD, I appear to be one of those who is plagued only with PLMD (It's called PLMS or Periodic Leg Movement in Sleep in Virginia Wilson's book). That is bad enough but I think the two conditions combined would indeed drive me over the brink.
During this past summer the PLMD grew steadily worse and I finally became a "night walkers" like so many others I've read about. I changed beds, tried sleeping in my recliner, put a pillow between my knees, took sleep medication, etc., etc. But nothing really helped. Leg jerks about every 20-30 seconds, first in the left leg and then in the right. I was just thankful that I did not have to get up and go to a job (I'm retired after 30 years as a teacher and principal) because I would not have been able to function.
And then, wonder of wonders, I changed my workout routine and began to go to the gym in the late evening. If I don't go to the gym I walk anywhere from a half mile to a mile in the neighborhood. If I had a stationary bike at home it would serve as well, I'm sure. Whatever. With that night time workout I now sleep almost all night every night! I do sometimes take a Valium if I begin to feel that little uncomfortable twitch in my legs after going to bed and that seems to do the trick. Simple? You bet. So simple that I'm sure everyone has tried it but maybe not. Worth a shot if you haven't. Bottom line, however...if it hadn't been for your web page I would have remained as much in the dark about RLS and PLMD as the doctors with whom I've consulted and I'd still be "Sleepless in Bakersfield". Thanks for being there.
Jerry K.
Date: Sun, 7 Sep 1997 12:27:28 -0400 (EDT)
Subject: RLS & Blood Tests
I've e-mailed you before and you've been enormously helpful --- thanks for your help!!!!.
My question now is:
What attributes should a Blood Test focus on to detect "Blood Abnormalities"
that could cause RLS Symptoms (eg: low Iron, etc.).
I'm scheduled for a Blood Test soon to assess my cholesterol and thyroid conditions and would like to take this advantage to test for other "RLS-related" blood characteristics.
Thanks!!!
G1B4 in Syracuse, New York
Medical Reply
The tests that we recommend for most all RLS patients include serum iron, serum ferritin, and possibly serum B12 and folate levels. The serum ferritin level is probably the most important as it can pick up minor iron deficiencies that may even be missed on the serum iron test. When the serum ferritin level is decreased, treating the patient with iron therapy may result in improvement of the RLS.
Date: Mon, 08 Sep 1997 10:35:47 -0400
Subject: 90% relief
My father has suffered from RLS for 70 years. He recently discovered that he has great relief by having discontinued drinking Rye Whiskey. Unfortunately in the past he often had an evening drink "to help him sleep". This turned out to have the opposite effect.
Information posted on your web site caused him to question the effect of Rye when a friend of his stated they could not drink Rye since it set off their Parkinson's Disease Symptoms.
Many Thanks from Dad
Medical Reply
Date: Mon, 08 Sep 1997 21:25:20 +0000
Subject: RLS related????
Dear Folks out there, About 8 -10 years ago I developed a mild annoying problem that I've only recently realized is RLS. Well, 5 years ago a different problem developed, that I'm only recently suspecting might be related to the former one. And I'm searching for anyone who might be able to inform me.
The RLS had, when awake, been never more than a maddening, NIGHTLY restlessness in the legs, mostly in the late evening when sitting still, tho my husband had "accused" me of kicking him during the night. (I'm too nice to do a thing like that to one I love so much!!) IT FELT LIKE THEY WERE COLD, my instinct was to throw a blanket over them, which realy helped little.
Well, about 5 years ago I started my "Mystery Malady" which features a gross, unwanted loss of weight with no change of diet, fatigue, diarrhea, and SEVERE COLD INTOLERANCE, etc. But the strange thing is, that I realized about 6 months ago that the RLS had been almost absent for a very long time, surely for a year or 2, tho it still happens from time to time.
The cold in my whole body really feels very similar to that cold feeling in my legs. Your input would be appreciated.
Norma S.
Medical Reply
I have no idea what your "Mystery Malady" could be. It sounds very strange in that it seems to have helped your RLS. Thyroid problems could cause weight loss, but that should be associated with heat intolerance, not cold intolerance.
Date: Mon, 08 Sep 1997 15:44:24 +0000 Subject: Permax & Neurontin My wife has had RLS for as long as she can remember. She has been on Klonopin (lost its effectiveness), Sinemet (bad reaction) and is currently taking Permax (.05 mg 4 times a day). The Permax started at two times a day about a year ago and has been increased to 3 and then 4 times a day. Now the Permax seems to be ineffective.
Would Neurontin be a possible replacement for Pemax or should the Permax dosage be higher? Also she is taking Tamoxifen and we wonder if there is any correlation between it and RLS. It seems as if the RLS condition became more aggravated when she started on Tamoxifen about a year and half ago.
Medical Reply
The dose of Permax is somewhat low. The way to increase an ineffective dose of Permax is to increase the dose by 0.05 mg tablets every 3 to 5 days, rather than increase the times the drug is taken during the day. The increase in frequency of taking this drug should be based on the times of the day that the RLS symptoms are active (for example, if RLS is active at 9 am, the dose should be taken at 8:30 am.).
Neurontin may be a good choice to use in general for RLS, but again it does not work on everyone.
There is no literature on any interaction between RLS and Tamoxifen.
Date: Tue, 09 Sep 1997 00:40:48 +0000
Subject: RLS
Hi, I have RLS and didn't realize it was a medical problem until I saw it on ABC News. The way I control it is by using a back vibrator which I lay down on the bed under my lower calfs and vibrate my legs while I sleep. I also take a Benadryl tablet before bed time and if I wake with the problem (which I do three or four times a week) I take a water pill. I also put on socks while i sleep. The combination of all above has enabled me to get a good night's sleep without heavy drugs.
Hope this helps someone.
Geo.
Subject: Thank you...
Date: Tue, 09 Sep 1997 07:04:56 GMT
Thank you for creating a web site for RLS. I live in a small town in Texas and when I try to explain to people my condition, they just look at me like I'm crazy. Magic Lags (quoting Forrest Gump and what I call this syndrome that has its own magical way of making you exercise your legs) has been disrupting my sleep since I was 20. I am 23 now and still suffering. These "magic lags" of mine create an anxious environment when it's time for bed. I know that every night when I get in bed, I will have to contend with this. The more I stress out about it, the harder it is to fall asleep. It's also very disheartening watching my husband next to me sleeping while I'm laying there suffering. I have even tried to "wiggle" my way to sleep. By that I mean I try wiggling my foot the slightest bit in order to keep my "magic lags" from messing with me. It's like an urge to wiggle your legs (which I know you know) and the more you try to fight it in your head, the more unbearable and sometimes painful it gets. I have noticed that the sensation is spreading to my arms a little and sometimes I feel extremely claustrophobic whenever this is happening to me.
I have always had trouble sleeping. Even when I was younger. Not all that has been attributed to RLS, but rather some form of insomnia. I started trying to take Tylenol PM's in order to make myself sleep and RLS seemed to bear it's ugly face more when I took these. I guess it was because my body was so relaxed due to the Tylenol. Well, I assumed the Tylenol was making me feel this way. After that, I ceased taking them and tried to regulate my sleep by going to bed at the same time every night and getting up extremely early. Well, while in this sleep experiment, I was still getting those "magic lags". I had a bout with Clinical Depression about 2 years ago. I had just miscarried a baby and things kept building up inside me. For those of you who have suffered from depression, you know it's really hard to go to sleep when you have so much to worry about. :) The RLS on TOP of the depression led to many sleepless nights. I went for 4 days without a wink of sleep. My husband finds it very hard to understand why I have this.
Before, RLS only affected me while I was trying to go to sleep. It has now spread to when I am sitting. I spend time on the internet and I noticed about 6 months ago that whenever I am sitting here on this chair, I am constantly wiggling my foot. My husband and I took a trip this summer which required us to endure a 4.5 hour plane ride. Of course, I had the window seat and it was nearly impossible for me to keep getting up out of my chair. So, I sat there for the whole ride and "wiggled". One of my favorite things to do on a plane is sleep, and that luxury was taken from me because of RLS. When taking a 7 hour road trip, the same thing happened. I didn't know what this affliction was called until my step-mom saw how frustrated I was trying to sleep in the car. I started explaining what the hell was the matter with me and she said, "Oh, that's call Restless Legs Syndrome" I stared at her with my mouth wide open in disbelief. I said, "You mean they have a NAME for it? Other people have it too?" It was a very eye-opening experience.
Since then, I have attempted to learn as much as I can about this. That is why I have written the longest e-mail in my "internet life". Next week, I finally have an appointment with a neurologist who ACTUALLY has heard of this. I am very excited because I know I am on my way to beating this. Once again, thank you for supplying so much information on this subject. You guys are doing great work.
Sincerely,
Megan P.
Lubbock, TX
Date: Wed, 10 Sep 1997 00:30:39 -0500
Subject: I have to LIVE with it?
After seeing the news broadcast on ABC this week, I decided to "surf the net" for information on RLS. That must be what I have. I've been to nine doctors (GPs, chiropractor, a pain clinic, orthopedists, neurologist, etc.) and still haven't found a remedy. This has been going on for probably 15 years. I do take a small dosage of amitripyline for sleep. It helps sleep, but if I take it during the day, I'd be drowsy. Sometimes my legs feel like little worms are crawling around in them, other times they feel "icy hot", sometimes they sting. It's usually both legs uniformly, and my legs do not jerk. Because the jerking is lacking, most doctors have told me that I do not have RLS.
On the TV broadcast where the lady was shown standing with a leg propped in a chair -- that's me! When I must stand in one place, I try to prop a leg on a chair, etc. This sometimes embarrasses me as it doesn't seem very professional. Exercising, walking, etc. do not aggravate the problem, but when I sit or lay down, I feel like I want to get a hammer and beat the worms out of my calves! Sometimes, my legs hurt so bad that I could cry, but I've been through many stressful situations in the last several years (illness and loss of husband) that I try to keep my emotions in tact.
Thanks for letting me sound off.
Joanne C.
West Monroe, Louisiana
Medical Reply
You do not have to live with your RLS symptoms (you have almost a textbook description of RLS, most but not all RLS patients have the leg jerking (PLMD) problem). Please see your physician or sleep specialist (if no one else can help you) and see if you can be treated with some of the medication on our RLS drug list. Most RLS sufferers can get excellent improvement with proper medical help.
Good luck and let us know how you do.
Reply message from Joanne C.
Date: Wed, 10 Sep 1997 12:39:43 -0500
Subject: Re: I have to LIVE with it?
What type of physician is most capable of treating RLS? My GP sent me to an orthopedic specialist who sent me to a neurologist, than back to the GP, then to a rheumatoidologist (who said I have fibromyalgia). I have just relocated to another state, so I'll be starting all over by locating "new" physicans. Can you direct me to the type I should see for the RLS problem?
Thanks for your response.
Joanne C.
Medical Reply
Many neurologists (there are lots of them everywhere) can treat RLS. You should probably ask the neurologist before seeing them if they are comfortable treating RLS.
Board certified sleep specialists should have the most experience treating RLS. Again, not all sleep specialists may have an interest and expertise treating RLS, so you should inquire before your visit. Check our link page for the ASDA (American Sleep Disorder Association) to find a listing of board certified sleep specialists.
Date: Wed, 10 Sep 1997 05:59:07 -0400 (EDT)
Subject: Help,new sufferer
I have been sick for a couple of years with an autoimmune disorder(either mixed connective tissue or scleroderma) Since Jan had been on long acting narcotics like Duragesic patch and MS Contin. Got the bright idea 9/5 that I didn't like MS Contin and wanted to try as necessary dosing with Lortab alternating with Tylox. That's when the nightmare began. Fri. night at 2am, I was running in bed, thought it was leg seizures. Scared the bejez out of me. I'm a nurse to boot. My dad suffered from this horribly until he stopped dialysis and died.
Had already been on Xanax 1mg at bedtime and Parafon Forte. Have been begging the internist for 2 days to try Klonopin at 1mg. Well, 2am and MY legs are screaming. Because of my lung problems, this running in bed makes me short of breath. My cats have been literally thrown out of the bed. This is the nightmare of all nightmares. Also found out I have a rampant skin cancer. Heck, I'm only 40 y/o. Have severe osteoporosis from long term Prednisone treatment.
I do understand why dad opted out. I'm exhausted because I'm only sleeping 4-5 hours a night. Get up and redose myself and hit the hot tub. Tried to figure out if I could sleep in the hot tub with out drowning. Not a good idea.
I'm at a loss of what to do at this stage. Because I'm on Lanoxin for heart disease, I have to be careful with some of the antidepressant meds. Doesn't sound like they are a good idea anyway. Can't see doing this much longer without relief. Thinking of going back to the long acting MS Contin, because these symptoms didn't start until I came off. Was only on 30mg bid, because it wired me. Couldn't sleep well on it, but my legs were quite. Any suggestions much appreciated. My body is in turmoil. Electrolytes ok. Nutrition ok. No caffeine x 2 years. Help....before I go out of my mind.
Thanks.
Janet
Medical Reply
You probably did not have any RLS symptoms while on the MS Contin, as it is one of the strongest of the narcotic agents. Other options would include the anti-Parkinsonian medications (Permax, for example).
Good luck.
A Response from Janet to above
Date: Thu, 11 Sep 1997 22:01:54 -0400 (EDT)
Subject: Re: Help,new sufferer
I'm glad I found your site. Was able to talk to my doctor about all the options listed. He was familiar with RLS and we decided to try Neorontin and Xanax 1mg at bedtime. First night I've slept through since last Friday. A little hangover, but who cares. I didn't run in my sleep.
Thanks again.
Janet
Another Reply from Janet
Date: Sat, 13 Sep 1997 04:52:20 -0400 (EDT)
Subject: Re: Help,new sufferer
Having great difficulty. Tried Klonopin 1mg first. Up at 2 am. Then tried Neurontin 300 at bedtime with Xanax 1 mg. Worked the first night, second night prowling at 2 am. Tried increasing to 2 Neurontin at bedtime plus Xanax, up at 3 am writing you. I keep my meds at bedside, but it take too long to kick in.
Cats won't sleep with me anymore, I've been kicking them out of the bed. Kicking starts before I'm awake and then I get short of breath because of my lung condition, Understand why people talk about assisted suicide. Pain and sleep depravation are not a good combo.
After being chronically ill for 2 years and now having an aggressive cancer near my nose and eye, my little body is having a tough time with this. I'm 28 lbs under weight and have arthritis in most joints. The RLS moves so fast my hips and knees are fired up. Makes the walking painful.
Any other suggestions before I lose my mind?
Janet
Medical Reply
Your case is obviously more severe than the average one and more difficult to treat. You also have other medical problems which may interact with your RLS problems and treatment.
Permax may be a good choice, but this has to be adjusted carefully with the help of a knowledgable physician. At this point you really should be under the care of a doctor who understands RLS and can give you proper treatment. It is quite difficult (and not proper) to try to treat complex cases such as yours without direct contact.
However, I hope that our suggestions have been helpful and that you improve under the guidance of your local doctor.
Another Reply from Janet
Date: Tue, 16 Sep 1997 07:47:00 -0400 (EDT)
Subject: Re: Help,new sufferer
I appreciate your interest and contact. Have slept better last 2 nights after adjusting Neurontin to 1 at 4 pm and 1 at 9 pm. Also added 10 mg Valium at the time my eyes are about to close. So far so good. Daytime symptoms are tolerable with pain meds and Xanax .5 bid and my hot tub. Thank goodness for hot water.
You are right about my complicated case and my med list is numerous. Cross checked and made sure none of them worsen symptoms. Your site has been valuable and my doc happy I printed off everything. He has worked with RLS before, just not Permax.
Thanks again.
Janet
Date: Wed, 10 Sep 1997 06:15:51 -0400 (EDT)
Subject: Xanax for RLS
Recently, I switched over to Xanax .25mg, on pill before bedtime because of work. I noticed the way Xanax works is very strange. I does not seem to be very effective when I don't sleep enough. From Sunday night to Thursday night, I can not fall to sleep with or without the RLS. But starting Friday night, it works better and I sleep until noon on Saturday morning. Saturday, boy, I can sleep anytime and still able to fall to sleep on Saturday night and sleep all night, no RLS. But, starting Sunday night, it is so hard to fall to sleep with or without the RLS.
And then, the RLS and insomnia stay all the way through Friday. It seems like the drug work only when you sleep a lot. Can you explain this? By the way, can I increase my dose to at least .5mg? (I hope this info will help: If I have a day off on Monday, I can sleep well on Sunday night. The RLS and insomnia will start on Monday night.
I know I am not under stress from work or any kind of pressure) Than you so much for your time and effort.
Medical Reply
Your insomnia with RLS and Xanax are exactly the same as most "normal" people without those problems. The average person often complains of trouble falling asleep on Sunday night. This is caused by a few different reasons.
The first likely cause is that on Friday and Saturday night, most people go to bed a little later. This makes it easier to fall asleep on those nights. By Sunday night, it then becomes more difficult to fall asleep at a time which has become earlier than you are used to. With longer sleep times on the weekend, it is even harder to fall asleep on Sunday night due to being more rested while trying to go to bed earlier. This problem can be alleviated by keeping rigid bed and wake times every day.
Even though there is no apparent increase in stress on Sunday nights, knowing one has to get up earlier does put more stress on our "sleep inducing system" and thus makes it more difficult to fall asleep.
In addition to regular wake and bedtimes, you should use drug holidays (one weekend off, every 2 weeks) to maintain the potency of the drug. Do not increase the dose, as you will surely become tolerant to the higher dose sooner or later.
Date: Thu, 11 Sep 1997 21:16:08 -0400
Help!!!!!!!!!!!!!
For as long as I can remember I have suffered from what is now known to me As RLS. I am only 20 years old, and just last year found out what this annoying thing is while reading through my "Book of home remedies". I went to see a doctor with my new found "name" and I was told it's from smoking. He gave me Ativan to sleep and told me to cut down on smoking. As you can imagine, that didn't help.
I get it in both my arms and my legs quite frequently (daily) and I'm getting a little
fed up to be honest. I don't know if you can but if it's possible could you please Help me
find a physician in the Montreal (Quebec) area? Thank you,
Shaking myself to sleep!
Medical Reply
RLS is not linked in any way (that I know of) to smoking. Ativan may be helpful, but it may not help everyone.
Montreal has several very good sleep specialists. Follow our link from our link page to American Sleep Disorders Association (ASDA) - This is the official association of sleep professionals. This may help you find a sleep professional in your area.
Date: Fri, 12 Sep 1997 22:41:33 -0400
Subject: RLS
I'm so glad to find a web site dedicated to RLS. I am 36 year old female from Canada, and I have suffered from this condition periodically for at least 15 years. Thankfully, I am spared a few months of the wretched problem and then, without warning it returns.
Just as I am about to drift off to sleep, my ankle jerks thus pulling me so violently from sleep that I actually feel nauseous from time to time. This will go on for hours. I finally DO fall asleep due to exhaustion.
For the last three weeks it's been bothering me terribly. If I am not being prevented from sleeping, I am waking up only after 3 hours.
I work out regularly, and I don't eat sugary things as a rule, I also don't eat before bedtime. I'm reluctant to take anything since my horrendous experiences with drugs prescribed for my migraines - while I got a good night's sleep, my side effects were dreadful.
I'm told that my insomnia is caused by stress. Well NO KIDDING - not being ABLE to get enough rest is also causing me stress. I want these feelings of burn out to go away and be able to function normally. It's really a bitter, never ending circle. And since my legs jerk enough to yank me awake, it's NOT all in my head!
I'm not sure what course of action to take - but I am sick of being robbed of a good night's sleep, I feel that I owe myself at least a little peace.
Moira
Medical Reply
It is always better to try to treat any condition without medication, but when someone is suffering as much as you indicate you are suffering in your letter, it is definitely time to think seriously about taking medication for your RLS.
Discuss the Primary class of medications with your physician. Most of these can be very well tolerated by most patients with RLS/PLMD. You may want to consider using two or three medications at low dose, in order to minimize the risk of side effects. With proper treatment you should be able to get even more than "a little peace".
Good luck, and let us know how you do in the future.
Date: Sat, 13 Sep 1997 07:24:06 -0500
Subject: RLS
FINALLY! Now I know I am not going crazy! I am 38 years of age, I run 5 miles a day and have done so for the last 20 years. I started menopause at the age of 30 (a freak of nature!) and attributed the "leg thing" to this change of life although I am symptom-free otherwise. I am UNABLE to watch television EVER, and haven't had a good night's sleep in ages. I always attributed the "leg thing" to running or menopause.
I would like to know what age group is affected by RLS and if it is more common in women than men. As far as I know, no one in my family has any symptoms relating to RLS.
I have started doing yoga and have experienced some relief. In addition, I have started drinking a commercial protein shake (whey) at night before I go to bed and this has helped quite a bit.
If I can be of any help with research, I would be happy to participate. Thank you so much--I may just have a better night's sleep knowing that I am not "imagining it" (which my gynecologist and GP have both said...!).
Sincerely,
Joanne
Medical Reply
RLS occurs equally in men and women. Women seem to get the RLS symptoms with pregnancy, so may experience the problem earlier. Other stresses may provoke RLS, so perhaps your early menopause may have been partially responsible (although that is pure speculation).
RLS can occur in any age group, however it tends to occur more in the older age groups, especially after age 45 - 50. It will also generally get worse as you get older (some patients may have it go away or get better with age, but that is really the exception, not the rule).
50% of RLS cases are familial (run in families), so your case may be of the sporadic variety.
The attitude of your physicians is very prevalent, and if they do not give you more help and persist on saying that you are imagining it, then please seek other medical help (possibly a sleep specialist knowledgable in RLS) who can help you.
Date: Sat, 13 Sep 1997 04:25:54 -0700
Subject: Advice on RLS
I wish to know if the following medications I take by prescription every day could be worsen my RLS:
I take 400 mg of Carbamezapine (Tegretol)
I take 900 mg of Lithium
I take 2 mg of clonazepam (Rivotril)
I take 1000 mg of glutamic acid (Memorcaps)
I take 1 mg of Melatonin
I take 2 g of ascorbic acid (vitamin C)
Thank you
Note: My doctor seems not to care about RLS and I think he believes it is in my head only.
Medical Reply
Your medications should not be causing your RLS symptoms to increase (although this can be a very individual reaction, so that I am speaking in generalities only).
The Tegretol and the clonazepam are two drugs that are usually quite beneficial for helping RLS symptoms, especially the clonazepam.
Please show your doctor all the information from the Internet, and if he still thinks the RLS is in your head and won't treat you appropriately, get another doctor who will take care of your RLS. You do not have to suffer from this condition without proper help.
Date: Sat, 13 Sep 1997 03:58:11 -0700
Subject: I live in the Cayman Islands and need help with RLS
Its 3:45 A.M. and after being walking alone since 10 P.M. to get some relief for my legs, I am sitting in the Internet looking for help. I have 5 days in a row without sleeping at all and this is really similar to hell. I thought I was the only one in the world suffering from this beauty called RLS for almost 5 years since no doctor or family understands what in the world I am talking about. I am glad I found you in the Internet but also sad since I live so far away from you.
Please help me and tell me what to do. I think I am going crazy since tonight I was alone watching the high ocean waves in the dark dock at midnight and getting weird thoughts about jumping in the ocean to find some relief to this horror story.
I am married with two small children and can not work now since I do not sleep at all
and every day is getting worse. Thank You,
Juan De Gre
Medical Reply
Please make a copy of our web pages (the homepage and the RLS Drug page) and share them with your family doctor. He should be able to help you with the benefit of that information. I am not sure if the Cayman Islands have a real sleep specialist, but there should be at least one neurologist familiar with the disease and willing to treat it.
Date: Mon, 15 Sep 1997 14:41:45 -0400 (EDT)
Subject: Father with RLS
My father suffers a great deal with RLS. He does not own a computer, but needs help in finding some relief.
Medical Reply
No one with RLS should suffer without getting medical help. Please have your father see a local physician who has expertise with treating RLS (usually a sleep specialist or neurologist).
If there is no local doctor with competent or comfortable to treat RLS, then make a copy of our treatment page which should help the inexperienced doctor be able to treat RLS. This information should also be very helpful for your father (including the RLS letters).
Good luck
Date: Sept. 16, 1997
Subject: RLS and Homeopathy
My father has RLS. He asked his young MD about it and he said he had never heard of it. I suggested he reference it as Myoclonus. When he did this his MD said, oh yes he's heard of this but it is not serious and the prescription drugs cause more problems than they are worth. My father is also taking some blood thinning medication for an irregular heart beat so I'm not sure if he is taking this into account.
I asked a friend about RLS after reading a bit about it and he said his mother had it for years. She was taking Sinemet but was getting little relief as she was rebounding. She finally went to a homeopathic doctor (this is in a different state) that worked her MD. She stopped taking the Sinemet and the homeopathic doctor gave her some pills and this seemed to turn the trick after 8 days. Furthermore, when I mentioned this to someone else on the Internet they also mentioned they went to a homeopathic doctor with very good results although he sent them back to a neurologist as he was concerned that this individual might also have Parkinson's disease.
While homeopathic medicine seems foreign to many of us,and many seem outright hostile ,e.g. my dad's MD said it is all hogwash, I have found through Medline multiple cases of double blind studies that indicate it is effective. My question is; can you recommend a homeopathic doctor or better yet an MD who is educated in homeopathic remedies for RLS?
Also, what is your opinion of homeopathic approaches? Is this too general of a question?
Todd C. E.
Medical Reply
The attitude of your father's doctor is quite common, unfortunately. With proper education however, most physicians should realize that RLS can be a very serious and troublesome condition that bears serious medical consideration and treatment.
Homeopathic medicine is an interesting topic. We have heard many RLS sufferers state that they have gotten various degrees of relief from homeopathic treatments. It is always difficult to tease out the placebo (sugar pill) effect from the real tangible effect from this treatment.
I have never seen a true double blinded study that compares placebo treatment with homeopathic treatment and shows positive results for treating RLS (or any other condition for that matter). If you have such a study please send me the reference so that I can check it out. Until then, it is difficult to recommend any homeopathic therapy.
There are lots of other good treatments for RLS other than Sinemet, so do not give up yet on traditional medicine. Most of the RLS medications have no interaction with blood thinners.
Date: Thu, 18 Sep 1997 03:46:58 -0400 (EDT)
Subject: Red meat and RLS
I noticed that whenever I have steak for dinner, the RLS seems to be reduced. What do you think? I am a kidney patient. Is it the protein or iron that helps?
One more thing, any kind of drug that supposed to help me sleep will change my RLS to PLMD. Why is that?
Medical Reply
Many RLS sufferers have noted foods that make their RLS worse, but few (if any) have noted foods that improve RLS. I therefor have no idea why eating steak for dinner would improve your RLS. The iron would take weeks to have an effect and the protein should not work that fast also.
Most drugs that improve RLS do not seem to help PLMD very much (except for Sinemet and certain others), but the the sedative drugs (generally sleeping pills) help the RLS by putting you to sleep so that you are not bothered by the RLS symptoms. These drugs improve sleep by preventing arousals from PLMD, but in fact do not decrease the amount of leg movements.
Date: Fri, 19 Sep 1997 04:08:00 -0400 (EDT)
Subject: Re: Red meat and RLS
Hi , it is me again. I have to write you because I did it again. After almost 4 nights of RLS, I decided to stop it by eating extra red meat. So I had a big steak for dinner and guess what, just as I expected, no RLS.
If this means the protein helps (can't be the iron, because I am taking 2 iron pills a day), I may have to take more protein. Is there any kind of a protein pill?
Medical Reply
Well, you certainly have an interesting with steak dinners and decreasing your RLS dinners. You can get protein in foods such as milk (and if you use non-fat milk, you will save yourself a lot of cholesterol), fish, and other animal products. Vegetable based products do have protein, but significantly less per volume.
Protein pills would not help much as a source of protein, as the volume of pills would have to be very high.
We also cannot be sure that protein is even the solution to your problem, as there are many other substances that could be helping you when you eat a steak dinner.
Date: Sun, 21 Sep 1997 21:06:18 -0400 (EDT)
Subject: Restless leg syndrome help.....
I'm 44 years old and peri-menopausal. I'm currently on hormone replacement therapy (for 3 years) and my RLS is getting worse. I started having symptoms when I was 19 and would have occasional bouts of restlessness. Now it's a nightly event.
I am currently taking Klonopin (0.5 mg per night) and still have the urge to jitter bug across the room at 3 am. Oh, I almost forgot... if it's of any importance, I've never been pregnant and do have varicose veins. I am interested in speaking to anyone with a similar medical history.
Please e-mail me at khym10@aol.com.
Thanks,
Kim
Medical Reply
Your medical history is very common in the RLS crowd. Although Klonopin can help RLS symptoms considerably, it may not be sufficient for full control in most patients. The addition of other medications such as Permax or one of the narcotic agents would likely help you get through the night. Discuss this with your doctor and decide on a plan to help your RLS.
If your local doctor is not that experienced in treating RLS, then make a copy of our treatment page to help guide him. Varicose veins may (really not proven yet) have some relation to RLS, but we would not yet recommend surgery for this to treat RLS.
Date: Mon, 22 Sep 1997 03:44:17 -0400 (EDT)
Subject: Non addicting drug
I have been reading too many letters from patients that I have now forgoten most of the RLS drugs and their side effects. Is there any medication that is not addicting for RLS?
I just went through a hell of a week dropping Xanax and hoping to take something else that is not a sedative. The reason why I dropped Xanax is because it loses its effect too quickly. It only last for a few weeks. I need something that when I take a drug holiday I don't have to put up with the withdrawal symptoms.
Medical Reply
You can read about all the drugs on our RLS Treatment Page and it will state whether the drugs are addictive or not. In general, the sedatives and the narcotics are addictive and require drug holidays.
The Parkinsonian medication are the only ones in the primary group of treatment drugs that are not addictive. Of those, Sinemet, although not addictive, can cause problems with augmentation and rebound, which are very similar to the problems of tolerance with the addictive drugs. Permax (Pergolide), is thus a very good choice in this group as it does not have those undesirable properties.
The secondary medications for RLS generally are not addictive, but they are not for the most part as successful as the drugs in the three primary classes of RLS medication. Some of them (Neurontin, for example) however, have proven helpful for many RLS sufferers.
Date: Mon, 22 Sep 1997 23:13:22 -0500
Subject: Help!
I am so glad I found your page! Is there a support group anywhere in Longview, Texas vicinity?
I have been married for a year now and have suffered from RLS for too many years to count. My husband is very supportive but some nights I find myself or my husband on the couch. I don't rest well at night and am sleepy and tired in the mornings - sometimes to the extent of not even wanting to get out of bed and go to work. I asked several physical therapists if they had ever heard of RLS - of course they hadn't. But one did find your page on the internet and sent me to you.
I think everyone thinks I am crazy. I think I am too at times. This is driving me nuts!!
Please help!
Pam B.
Medical Reply
You are certainly not crazy! At least 5% of the population has RLS, so you are also not alone. Going to a support group would likely be very helpful. Follow the links below to the list of support groups on the RLS Foundation Inc. web page.
The Restless Legs Syndrome Foundation, Inc. is an excellent source of information on RLS. You can also look up other support groups around the county on their web site or go directly to their list of support groups in the United States. You should also see a sleep specialist who should be able to help you and your husband to spend the night in bed together regularly and help you get a restful night of sleep so you always wake up refreshed in the morning.
Date: Tue, 23 Sep 1997 02:38:40 -0700
Subject: RLS
To the person who wrote the letter on Sept. 13, concerning a list of medications, and whether any of them would make RLS worse. I have found that Vitamin C makes mine worse. But I can take Vit. C in the form of ESTER C, and it does just fine...but I take it in the morning...just in case. NT, Atlanta, GA
Date: Tue, 23 Sep 1997 15:46:48 -0400
Subject: RLS and PLMS
I an new to this subject and have some comments and questions... I am a 27 year old male and about 4 days ago I received feedback from my Dr. about a recent sleep study I had taken. He sent me there because I complained of headaches and daytime tiredness during a routine physical. He thought the condition might be related to sleep apnea due to these symptoms and also the fact that I woke up constantly throughout the night. The results of my sleep study were negative for sleep apnea, but were positive for periodic limb movements throughout the night. The study showed that I woke up 19 times in one hour along with other numerous awakenings.
I did some research in sleep disorders and came across this site along with others. I now understand why I shake my legs all day at work while sitting or watching TV etc...I do not have "pain" associated with this but, I do have a "weird" sensation in my legs which causes me to shake my legs. I never really knew why I did this but people always told me I was hyperactive. I now think I understand why. I now know why I stay tired all the time which is a relief because I thought I was just "lazy."
I try to get around 7.5 hours of sleep a night and avoid naps if at all possible to get better sleep. I really do not have to much trouble falling asleep at night like others seem to with this condition but I have plenty of trouble staying asleep. When I do wake up , it only takes a few minutes to fall back asleep but inevitably I wake up again and again. (some nights are worse than others) Then throughout the day if I sit still I will shake my leg up and down or shake my foot rapidly.
The Dr. started me on Sinemet 4 days ago and I took it for 3 days and noticed that I had vivid dreams all night and actually woke up more. By the 4th day I woke up after 8 hours of sleep exhausted. I never had been so tired in my whole life. I had to leave work early that day and went home and slept for 3.5 hours. After speaking with the Dr. he took me off the Sinemet and is researching other meds for me and is going to call me back with recommendations.
Do you have any recommendations? My fear is finding a medicine that will keep me asleep at night, which would be great, but will keep me tired all day. (which I hate) Also, there is a Dr. that works with my mother that suggested that I started taking Magnesium every day to correct the problem. I jog 25 - 30 miles per week and the Dr. suggested that you lose Mg during this exercise. She says this is a natural alternative to taking prescription drugs to correct the problem. Is this a good remedy to try?? I would say I have PLMS more than RLS. Is there different treatment methods for each one or are they both the same?
Thanks for your help!!!
Mike C.
Medical Reply
Many of the treatments that are good for RLS do not necessarily help PLMS. Sinemet is a good choice, but you experienced side effects. Permax may be another Parkinsonian medication that may help, and hopefully have less side effects.
Sedative medication (Xanax, Ambien, Halcion, etc.) is often used for PLMS. It does not decrease the frequency of the PLMS, but it does prevent the arousals which fragment your sleep. You may want to discus using these medication with your doctor. With the right short acting sedative at bedtime, you should wake up well rested and refreshed in the morning.
Date: Tue, 23 Sep 1997 16:02:45 -0400 (EDT)
Subject: Med. for RLS in kidney patients
In the medication for RLS section, you mentioned that Klonopin and Xanax are used for RLS in kidney patients. Can you explain why they chose these for Kidney patients? Were there some advantages or restrictions for these medications for kidney patients? Also, I heard some medications that helps RLS can also lower your blood pressure like Clonidine. This would work well on Kidney patients. I think but it was mentioned as a medication for kidney patients.
One more question, would RLS go away after a kidney transplant or it is a permanent disease?
Medical Reply
Klonopin and Xanax have been studied for use in kidney patients. The other sedative drugs should probably work as well, but as Klonopin and Xanax are the two most commonly used RLS sedative medications, these were the ones studied. There is nothing otherwise special to those two drugs that gives them an advantage in kidney patients with RLS.
Clonidine would be a good choice for kidney patients with RLS, but improvement has been somewhat sporadic and generally not as successful as the primary medications for RLS.
A kidney transplant should help resolve RLS as it seems that the RLS is associated with blood urea (BUN) levels of greater than 40-50, and that should be back to normal levels after kidney transplantation.
Date: Tue, 23 Sep 1997 18:07:13 -0500
Subject: Father's RLS
Hello all, I come to you with a different view of RLS. I personally have not shown symptoms of this disorder, but my father does. My father has had it for about 18 years. There are many problems with my father. He had been diagnosed with manic depression, as well as with high blood pressure. My father has suffered with 7 lower back operations and other items too numerous to list. My father is disabled.
I can remember a time when my father initially began having these problems. I was about 5 years old. My father would be up to all hours of the night, sometimes screaming and cursing, in pain. His pain was located in both his arms and legs. He would go for literally days without sleep. The longest period I remember is 11 days. It was not until a few days ago that I was given some information on RLS. I was very surprised. I have always just thought it was a side-effect of the medication he was taking or the pain was psychological.
I am interested to know about the situations behind your symptoms! I know that my father has taken most of the medications that were listed throughout the e-mail as ways of controlling the RLS. They have not helped. Are you (the RLS suffers) taking other medications at this time? Are you also diagnosed with other disorders, or is this the only problem you have? I ask this to see if possibly there is a connection with other disorders.
If there are any Doctors who are reading this material, are there other disorders or problems that have the same symptoms? From my perspective, it is very difficult to see someone you love going through these symptoms (no matter what they are caused by). Any advice I could pass on would be great!
Please e-mail me at michaels@dbu.edu if you have any suggestions.
Thank you!
Mike C. S.
Medical Reply
Some RLS cases are very difficult to manage and control. Thankfully, the majority of people with RLS have either mild symptoms, or symptoms that can be controlled with medications.
Our web page dealing with all the RLS drugs contains one of the best collections of drugs (and other non-drug treatments) known to medicine. There should be some drug or combination of drugs that should help your father
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Click to go to the RLS Homepage, RLS Treatment Page.