Date: 96-12-30 20:53:27 EST
Hi,
My name is Virginia Grainer and I am contacting you from New Zealand.
I would be very interested in any information you have about restless legs. I have suffered from it for some years now and have found no-one in New Zealand who can offer me any assistance with the problem. The doctors here know about it and suggest perhaps I could take quinine. When I was in the States last year I went to a doctor who put me on clonazepam which seems to offer some reprieve at nights but makes me sleepy and "out to it" the next day. I now ache day and night, and in my arms as well as my legs. My partner tells me I kick him quite hard during the night too. My father suffered from it and so does my daughter even though she is only 21. I guess this is the kind of story you have heard over and over again so I won't bore you with any more details! I would be very grateful for any information you have on this frustrating condition.
Happy New Year!
Kind regards
Virginia G.
I am a 21 year old male and have been suffering from RLS since I was a kid. I believe
it is the worst thing ever. I write this to you at 1:45am, not able to sleep (even though
I have to be up for work at 6am).
I saw at the bottom of your page, a list of other names for RLS that some people use. I
have always just called it 'legs'.
What I need is SOMETHING I can do to get rid of this... anything. At times I think I would
rather not have my legs at all then suffer through this night after night.
What sometimes helps for me is the knee bends over and over until my leg muscles are very
sore. The problem is that when I lay back down into bed, I can fell that soreness go away,
and quickly be replaced by RLS.
That my be the best way to describe RLS. RLS is the OPPOSITE feeling from that of having
your muscles tired after a run or a working out. Most people just have a 'normal' feeling
in their legs, or a tired feeling from running or activity. People that suffer from RLS
have an additional sensation. That of needing to get their legs to that normal or tired
state.
This is horrible. At times I lay in bed too tired to get up to do knee bends. Sometimes I
hit my legs to make them sore. It feels so good to do this. The problem is that soreness
goes away quickly and is replaced with RLS.
I need some advice. This is getting to be to much. What can I do?
Cody
I am a white 50 year old male in Alabama.(hope you don't mind having me comment on your user group...my first time)..have had RLS all my life, severe enough to be responsible for the loss of my last job. I have taken Klonopin( does not help any), have taken Sinemet & Neurontin (no help). Was on Methadone, which stopped it cold ,but......the withdrawal from this stuff is horrible..I could tell you a horror story if you want. The only thing that takes almost 100% care of it is Propoxyphene. Yes, I know it is habit forming but nowhere as bad as Methadone. After losing my fifteen year job,yes, I will take it. Tell Lola Scavo of Whittter,CA. that methadone is a bone saturating synthetic Morphine and it does have a hell of a withdrawal..I know. I am very glad Y'all( yall??) are up and running..thanks.
John P.,
Gadsden, AL.
My God, its real. I am not going crazy. Just read an article on RLS and it described my
every night waking nightmare..........RLS. I have believed myself going insane with the
crawling terrible itching, moving sensations in my legs and around my knees and the
multiple involuntary "electric shocks" that jerk my body frequently every night.
it starts around 6:30 to 7:00 p.m. - I get no relief except if I get up and move around.
Lying down or "slouching" is worse. Sitting in a severe, upright chair is a
little better. traveling more than 20 minutes as a passenger - I go nuts. Driving is ok
because I am constantly moving and doing things...except on long straight-aways/freeways.
How many people think they are nuts with this horror - and don't realize it is a shared
problem with millions of others? I "shudder" to think (excuse the simile).
Even before reading about RLS yesterday and now, in hind sight - I did get two nights of
relief in the past three weeks - 3 ibuprophen (600 mg total) plus a 2 mg lorazipam and 2
vitamin B complex pills were taken on the two nights out of 14 I really got some decent
sleep. I must experiment further and report back.
Thank you RLS Foundation for releasing me from the fear I was cracking up. 53 years old. RLS for at least ten years. I am not Nuts!
Barry N.
Palm Springs
bsnoble@aol.com
1/6/97
Date: 1/8/97
I have written before to you. I would like to ask a general question to all of my fellow sufferers of RLS/PLMS. Looking at my blood test reports of last few years, I have observed that my blood Calcium level is above the normal range. The normal range is 8.4 to 10.4 mg/dl. My level is from 10.5 to 11.5 area for different tests. This is the only parameter that is out of range for me. I don't know if it has anything to do with RLS/PLMS. I will really appreciate if others write about their Calcium level-whether it is within normal range or not. If many of us have same problem as me, may be there is some connection.
JK, Richland WA
Subject: rls
Wow. After reading your stories I feel thankful. My leaping legs have never driven me to consider suicide.
I have had this all my life. My mother used to get angry because I always left dirty footprints on the wall next to my bed. I was too embarrassed to tell her my legs wanted to run at night and putting my feet high up on the wall stretched my legs and made them feel better.
Although I don't sleep I never connected that to my legs. I always thought my varicose veins were the cause of the crawlies. Anyone else out there have varicose veins? I have only recently begun to have the same sensations in my hands, arms and shoulders.
Tylenol or Advil gives me several hours relief. My symptoms seem to plague me for several months at a time and then get better for a few months, although frequency is increasing as I get older (I'm 42). I am so happy my husband found this page for me. I have been considering medical advice, and now after reading your stories I know I will not try the drugs. They seem to be too temporary and too many side effects. I'm going to try the ayruvedic herbs and calcium.
By the way, I take advantage of my 2 am wakings by praying. This helps my legs more than anything.
Lynn
I have now held the RLS and most of the shudders at bay for four nights, four nights of ture sleep and relief, after weeks of hell...... with 600 mg ibuprofin , 2 mg lorazepam and 2 mega b-complex vitamins 1 hour before sleep. The vitamin B complex was advised by a neurologist some years ago when my extremities used to go to sleep and then get electric shocks - to deaden the nerve endings...then diagnosed as extremities neuropathy. (B complex has proven excellent for this - and must be also reacting with the nerves causing the electric shock shudders in this instance too). Knowing what it was like in this latest severe onslaught of the problem...I hope this might help others in their seeking some relief.
Barry N.
Statistics:
Linda M.
Redondo Beach, CA.
49-year-old female.
Three grown daughters.
Bothered by RLS since childhood.
Frequency increases as the years march on.
Both parents (although it didn't start until they were in their 40's)and one set of grand
parents were alcoholics.
I have one daughter who complains periodically of mild RLS symptoms.
My father describes infrequent RLS like episodes.
I have always referred to this condition as a "crawling" sensation under my skin. It could not be accurately described as a pain or soreness or cramp or leg jerk. Excuse the graphic picture but it always felt like hundreds of maggots crawling under my skin. It could not be massaged away - I even tried pin pricks thinking that if distracted enough it would disappear.
Over the years I have tried:
Hot baths/cold baths.
Exercise/no exercise.
Aspirin, ibuprofen, vitamins, mineral supplements and other over-the-counter remedies.
I have timed these episodes and when they are especially bad they can go on for five or more hours. It will usually start in my right leg and the sensation begins somewhere just above the knee and continues down through the calf. The sensation lasts 5 seconds and then stops for 15 seconds. This process repeats itself until it moves to the left leg and begins again. That may also go on for an hour or more. The real treat starts: BOTH LEGS AT THE SAME TIME! This can consume another hour.
About two years ago the RLS began to affect my arms as well -- mostly the right one. (DO we now have RAS as well?) When it started in my arms I was ready to jump on a sword because the frustration and sleep deprivation was so great. I spent many a night pacing the darkened house trying not to wake up my family. I have also been tortured on airplane trips and long car trips whether I am the driver or the passenger. Don't you all just want to scream!
I should note here that my RLS is always active when I am awake. It has never woken me up from sleep. I had to begin sleeping in a separate bed than my partner because a mere accidental brush against my leg could trigger the RLS.
I had two accidental episodes of remission. I call them accidental because it was the treatment of another condition which suspended the RLS for a short period of time. The first time I had a remission was after I had had a shot of cortisone to treat tendonitis in my right hip. Symptoms ceased for two months. The second remission was after I had had spinal surgery on a fragmented disc at C5/6. In order to calm the muscle spasms the neurosurgeon prescribed valium 10mg before sleep. No RLS while on that medication, however it did leave me less than alert for a good part of the next day. Please note that I had never mentioned RLS which was crawling legs to me at that time to either of these doctors.
In the spring or summer of 1994 my mother sent me an issue of "Modern Maturity" magazine with a note saying "Is this what you've been trying to tell me about the since you were a kid?" I must have read that article 10 times in a row finally feeling redeemed - I wasn't crazy after all! I have since met two other people who have the same RLS complaints. One is a woman about my same age who said that she and all of her sons suffer from it and the other is a 35-year-old male who has a son about 7 who also has it.
Now for the good part. I came onto a solution to RLS (for me) in the most convoluted set of circumstances due to an eye infection. I woke up on Valentine's Day 1995 with a serious problem in my left eye. I went to the local emergency clinic where a very perceptive doctor diagnosed it as dendritic keretitis -- the same herpes which causes chicken pox had set up on my cornea. I was referred to an ophthalmologist who treated me at least twice a week for 7 months. The infection was stubborn for many reasons - I was allergic to some of the most effective ones and others which could have proved useful were unavailable in this country or out of stock at every pharmacy in Southern California.
Finally one day the doctor said that he was quite troubled by the persistence of this infection and asked if I were getting enough sleep. I very gingerly began to tell him the whole RLS scenario fully expecting him to call in the men in the white coats. Instead, he listened carefully, when over to the phone, dialed a number, talked for a few minutes and then said "I want you to go down the hall to the neurologist, he's waiting for you." I was stunned. I flew down the hall and underwent the standard neurological exam and explained all symptoms. I did not get the same sense of compassion from the neurologist and said "I guess you think I'm crazy too?" He said that he had never had anyone describe this problem to him and that he hadn't read anything about it but that that didn't mean it didn't exist. He took out his pad and wrote me a prescription for Triavil 4-50. He said that there had been some success with this drug in the treatment of Parkinson's disease. I was to try it and call him in 3 days to let him know if it was effective. The first night I took it my legs crawled. The second night I took it my legs crawled. The third night I took it I slept like a baby and have not had a problem since (unless I forget to refill the prescription). It does seem to have a residual effect in that if you run out of it will be 2 or 3 days before the crawling returns. There is no grogginess in the morning. It does cause somewhat of a dry mouth and you can gain 5 pounds or so on it. (But I truly don't know if this is from the drug or because I gave up pacing the floor and doing deep knee bends half the night!)
The final side effect, judging by the length of this E-mail, is long-windedness! I hope to make the meeting on February 2nd.
Linda M.
c/o gilala@concentric.net (My daughter's account)
I have had RLS for about 17 years, since my son was born, and it has gotten steadily worse over time. I've tried all of the natural remedies like vitamin E, calcium, valerian, magnesium etc. and have had no success whatsoever. For a while wrapping my leg in a tensor bandage did the trick as did rubbing it with Absorbine Junior or Deep Cold but that only helped for a while too. I recently found the way to insure myself a good night's sleep, although I think many people would be resistant to the idea. Smoking Marijuana before bedtime helps like you wouldn't believe. Where before I was up half the night twitching and tossing and turning, now I sleep like a baby. It's much safer than drugs, nonaddictive and no unpleasant side effects like hangovers. I still suffer occasionally during the day, but at least I get a good sleep so I'm not so cranky anymore.
I'm female, 36 and from Toronto
Kim
My partner has told me many times that my legs 'jump' during the night. He said that sometimes it happens as much as 4 or 5 times a minute. I thought he was joking until one night at his house as I was drifting off to sleep it happened. I can only equate these with the same sensation one feels when having the falling-off-a-cliff dream, except it happens in my legs. To add to the adventure, I also have atopic dermatitis, and sometimes the itching is worse at nights.
Since my partner has told me about my leg movements, I've been noticing them also...sometimes they are accompanied with aches (much like stiffness). I would have to say that lately I'm bothered by this at least three nights a week. I don't know if I'm more aware, or if maybe the change in seasons has something to do with it. I'm going to try some of the over-the-counter remedies. I'm glad I found all of you!
To Whom It May Concern:
I am a 37 year old male who has been struggling with "restless legs" for about 18 months. The symptoms have become more acute over the past two months or so. I recently completed a sleep study but the results won't be ready for another three weeks.
I was using the drug Sinemet with some success but the benefits have diminished recently. I am awake almost all night every night. Thank God there are others who understand this terrible condition. Thank you for being there for all of us who must contend with this problem.
Yours truly,
Richard B.
Hi everyone. I have narcolepsy which was discovered when I was tested at a sleep lab for my restless leg problem. I didn't know it was RLS at the time. My name for it is Tickle Legs because it feels like an uncomfortable tickle - sort of like when your legs go to sleep and as the feeling starts to return there is that awful tickle feeling. In the past, I had tried taking sleep medicine at night so it wouldn't keep me up, but that only made it worse. My doctor, God love him, game me Baclofen. I have been on Baclofen for four years now and it works! If I forget to get my medicine refilled in time, there is an awful rebound effect, but a refill soon helps that. If your current medicine isn't helping you, I urge you to ask your doctor about Baclofen. It has saved me from absolutely losing my mind over this tickle stuff in my legs and arms.
Good luck to you all.
Subj: I'm not crazy!!
Date: 97-01-21 20:21:59 EST
Even after my specialist diagnosed my sleeping problem, I thought that even he was a little goofy. What is this thing periodic limb movement. My mother just said I had lots of energy. I've been on Sinemet for about 3 mos now and both my wife and I are experiencing good sleep (for the most part).
Any and all information would be great. I'd love to visit CA and see a support group and avoid some of my country's rotten winter ( I guess it's all part of being Canadian).
As someone who has worked as staff in nonprofit health organizations, it seems rather odd reaching out to one.
Anywho, as my leg jiggles madly, I will sign off for now.
Stephen M.
North York, Ontario, Canada
I was surprised to see so many people who suffer from RLS. I am a 43 year old female. The first time I experienced what I call "The Crawlies" was when I was pregnant with my first child. I also experienced this with my second and third pregnancies. I was free of the symptoms for about eight years then all of a sudden two years ago they reappeared.Since that time, every night was unbearable when I tried to sit and watch television and when I would go to bed at night.I was sleep deprived for two years. Finally I saw a neurologist for other medical problems and she prescribed levodopa. It was a miracle! But I must add that along with the medication, a hot bath immediately before bed is a must. I finally can get some sleep. Most recently I have experienced the "crawlies" about four in the afternoon, the doctor has suggested taking half a tablet along with the tablet and a half at bedtime (in addition to). I have also noticed it being worse around the time of my period and if I eat a large amount of fat.
Margie
WOW! Finally a place to visit where others can relate to my discomfort. I'm really delighted I found this page. I've had this disorder for approx.15 years and I've just finished a test called an electromyogram. They discovered I have tarsel tunnel syndrome in both legs and no real remedies. I couldn't, wouldn't use anti-inflammatories and refused cortisone injections. So, I'm back to square one. Also a doctor about 6 years ago prescribed Sinemet which helps to calm my feet at night so I can sleep. I'll take half a tablet and still wake after two hours and need to walk around. My sleep is almost always irregular. Occasionally (2X's a month), I'm able to take a daytime nap (well deserved & much appreciated). Yes I too have this related sleep disorder or deprivation. A rose is a rose... However, for all it's worth and perhaps helpful to another RLS person, whenever the jeebies start disrupting my sleep, I slip on surgical support knee-hi's. The knee-hi's quiet the pain and offer some relief from the sensitivity (the pain in my ankle bones are activated when I sleep on either side). Yes I do toss & turn. In the morning my hair looks as if I underwent a form of electrocution! Well, if you have any further suggestions, I'd love to hear them. In the meantime, I'm bookmarking this page and perhaps those surgical support hose will be helpful to another RLS victim. Also, don't allow your feet to get too cold or too warm. I think extremes of temperature activate the restlessness. Thanks. Hope to hear from you.
Mary
Medical Reply
If plain short acting Sinemet helps you, then you may want to consider the longer acting form called Sinemet CR. This will last through the night and give you longer relief. There are several other medications (see our web page) that can be added to Sinemet for additional relief if necessary.
Thanks for your suggestion about the surgical stockings.
Reply to the above Medical Reply
Subject: Sinemet CR
Thanks for the suggestion for Sinemet CR. I'll definitely try it. However, I do have a concern. Sinemet can cause drooping of the eyes and that is why I'm very cautious when taking this medication and the reason I will take only half a tablet. I've tried lots of home remedies but to no avail. It's comforting to know that there's help and that others can sympathize. I'm surprised that this condition has not received more publicity. Once again thanks.
Mary
Subject: RLS and sleepy driving
Sometimes because of my lack of sleep, I become sleepy during driving. We all know that this is very dangerous. Here's a simple remedy-
KEEP A PACKAGE OF GUM OR BUBBLE GUM IN YOUR GLOVE COMPARTMENT AT ALL TIMES! WHEN YOU'RE
EXPERIENCING THAT WAVE OF SLEEPINESS, START CHEWING - POPPING YOUR GUM AND OR MAKING
BUBBLES - ALSO WILL AID IN KEEPING YOU ALERT. TRY IT. THIS METHOD IS SIMPLE, FREE FROM
MEDICATIONS AND EVEN A LITTLE FUN - GOOD LUCK
I think is also helps relieve the RLS.
MARY
Subject: Restless Leg Syndrome & Minerals
I heard part of a news story a few weeks ago about a research project which discovered that daily doses of iron and folate were beneficial in relieving RLS symptoms.
Can you provide any additional information about this. My brother and I both suffer from RLS, and although we don't live in southern CA, I used to, and my family still does.
Thanks,
Steve O.
Medical Reply
Both folate and iron deficiencies can cause RLS and in these patients with deficiencies, supplements of folate or iron will then be helpful. In RLS patients without documented folate or iron deficiencies, no help is generally noted by adding folate and iron.
There may be some new information on this topic, but I have not heard it yet.
Subject: Leg Pain
Has anyone ever heard of this in young children? I am asking for a friend and neighbor whose 5 year old daughter cries at night with leg pain (being so young it is hard for her to describe exactly what hurts). Doctors have come up with nothing, except perhaps "growing pains". Sometimes Tylenol relieves the pain.
It does not seem to have anything to do with activities she has done during the day.
Any thoughts appreciated.
Medical Reply
This can indeed occur in young children. Many patients with RLS as adults can very clearly remember suffering from RLS symptoms as a child. Most of these patients were told that they were having "growing pains" just as in the case of your neighbor's child. If you read our letters (in the RLS Symptoms and Remedies Section) you will see a few letters from patients discussing this topic.
Date: Wed, 29 Jan 1997 02:42:22 -0500 (EST)
Subject: rls
i have simply 'wiggled' my feet until i fall asleep since childhood. i am now 40 yrs
old. (male, no history of diabetes that i know of, although it has been in the family
Medical Reply
You may want to consider trying some mild medication (in the sedative class) in order to sleep better at night. Check with your local doctor or sleep specialist.
Subject: Glad to find you on the net!
Date: Sun, 29 Jan 2045 09:18:46 -0800
Dear fellow RLS sufferers,
Great to find such a comprehensive analysis of RLS and info about the support group on the net.
I have a 40 year old spinal fusion and have thought that the recent onset of involuntary leg movements at night was related to scar tissue or nerve damage related to that old surgery. I say recent, actually the last 6 or 7 years. I met with an orthopedist at Kerlan-Jobe Clinic a couple of weeks ago and he suggested that my problem was not with the fusion but could be RLS. He prescribed a non-steroid anti-inflammatory drug (Feldene) along with Elavil as a sleep aid. The Elavil left me groggy through the entire next day after taking it one night. Won't do that again! Having read your material, I wonder about the Feldene and will share your research with the doc on my next visit. Seems in reading through your email that many people have success with Klonopin.
My legs move only when I'm in bed at night and I've never had a problem with involuntary arm movement. When it is most severe I feel like there is an electrical charge building in one leg. If the "charge" is allowed to build to the maximum, my leg really jumps! I can diffuse it by touching it with my other leg and then I just get a temporary tingling numbness. Other than getting up and walking around for a while, I haven't found any way to relieve the symptoms. It is better when I lie flat on my back than on my side.
Thanks again for the info. Wish I could make your meeting this Sunday but won't be able to .
Jerry K.
Bakersfield
Medical Reply
Thanks for your letter. Klonopin is a reasonable choice for better nighttime sleep, but I recommend a shorter acting medication such as Xanax, Halcion, or Ambien. This way you will get a good night's sleep and not be drowsy during the daytime.
Feldene, an anti-inflammatory medication, usually has no effect on RLS (as you have found). Elavil, a sedating anti-depressant, may help on occasion, but more often than not, worsens the RLS.
Sorry you cannot attend the next meeting, but do try to catch us at a future meeting.
Date: Wed, 29 Jan 1997 23:10:01 -0600
Subject: RLS
Thank you for this wonderful site! I have had restless legs since my teens (I'm now 42). I try to explain to people what it feels like, "edgy legs," but if they've never experienced it, it's really hard to talk about. I get it in the evening hours around bed time. My thighs get that creepy-crawly, dull tooth-achey, fidgety feeling and I have to keep getting up to stretch them. It was really awful during my two pregnancies. I've found that acetaminophen helps a little so I can sleep better. Sometimes I place a pillow between my legs, but it's not a great solution either.
Cynthia S.
Mankato, Minnesota
Medical Reply
RLS is known to be much worse during pregnancies (in fact this may be the first time that some women may experience the problem). Check out our web page for the various treatments and discuss them with your doctor. You may be surprised how well you may feel with proper therapy. Good luck.
Subject: Back again with an update
Date: Sun, 2 Feb 1997 16:32:24 -0500
Well I gave the Ultram a shot. Took it for a month and found it ineffective at least for me. It was quite expensive too. Since then I've been taking a Percocet at bedtime and anywhere between 5 and 7PM I dose with 5mg of timed-release Melatonin with B6. I'm one of those strange people who also suffer with delayed sleep-phase syndrome. Like some other RLS sufferers I can't get to sleep before 5AM. My dog and cat start mumbling loudly around 7AM so I stumble out of bed, let the dog out, feed them and stumble back to bed sleeping sometimes till 10:30AM. God help me I'm glad I'm retired!
The melatonin does help in that I usually manage now to get to sleep around 1AM (unless my legs are dancing a jig or my arms are flaying the air) and I manage to sleep sometimes a good 4 hours before waking up. I then make up the cambric tea I spoke about in an earlier letter. After drinking the tea and sharing a graham cracker with Fiona (my corgi) in the dark (I don't want to get too awake) I can settle down to another hour or two of sleep. The dancing legs and arms seem to calm down toward morning. I've tried to do without the Percocet but the restless legs don't seem to calm down enough to let me go to sleep without it.
It's so good to know I'm not alone in my misery!
Jeanne R.
Medical Reply
Have you tried adding a sedative medication such as Xanax, Halcion, or Ambien at bedtime for further help with your RLS? It may help you to get to sleep earlier and sustain it until the morning.
Date: Sun, 02 Feb 1997 16:49:08 -0500
Subject: Another sleep test...
I live in New Jersey and wrote to you back in January regarding my struggle with RLS. I mentioned at the time that I was waiting for my sleep test results. A few weeks had passed when they called and said I would need to return because I had only slept for 15 minutes the whole night. The neurologist wants to determine if I also have problems with "periodic limb movement disorder" while sleeping.
This Tuesday I'm returning to the sleep disorder specialist to see about trying a different medication other than Sinemet. While it had some early effectiveness, I've read about its potential for causing a "rebound" problem and worsening the condition in some patients.
I have picked up the book "Sleep Thief", by Virginia Wilson. It's an excellent resource of information and treatment options for RLS sufferers. If you don't already have a copy, I recommend it very highly. Hope you have a good night's sleep!
Sincerely,
Rick B.
Medical Reply
RLS is really a clinical diagnosis and does not really need a sleep study. You can diagnose the severity of the of the associated PLMD (when present), but it is not helpful for RLS.
Rebound can be a problem with Sinemet, but is generally less of a problem with the long acting form (Sinemet CR).
Date: Mon, 03 Feb 1997 11:21:01 -0500.
Subject: restless leg syndrome
Hi, I am looking for several people who will do a trial test with me. I had suffered from restless leg syndrome for a while when I happened on a simple cure using over the counter medications. If you are tired of spending nights up and willing to help me with my study, please e-mail me at richs@infobahnos.com
Richard St-P
Date: Mon, 03 Feb 1997 15:03:15 -0600
Subject: RLS
My wife is currently taking Neurontin 300 mg, 4 at bed time and is also taking Paxil 30mg once a day, but it doesn't seem to be helping much. What else may we try?
Floyd L.D.
Medical Reply
There are lots of other medications that your wife has not tried. Sedatives such as Xanax, Ambien, etc. may be very helpful. Sinemet and other Parkinson's treatments work in a majority of patients. Check out our web page for many more medications which may work.
The Paxil, which is a good anti-depressant, but may actually worsen RLS rather than make it better.
Date: Tue, 04 Feb 1997 09:55:38 -0500
Subject: Non-medicine relief of Restless leg syndrome
Hi, my name is Marilyn and I live in Montreal, Canada. I started having restless leg syndrome during my pregnancies and post-partum. I consider myself to be very lucky. Within days from starting the restless legs I was told that I had to take a vitamin for the pregnancy. I took Allbee with Vitamin C made by Whitehall Robins (the A.H. Robins). I would take it at night as I had trouble digesting the pill as I suffered with 24hr-9month morning sickness. It wasn't until after the prenancy was over and I stopped taking the vitamins that the restless legs came back. I remembered having it during the pregnancy and that it seemed to go away when I had started taking the vitamins. I tried taking it at night when I had the restless legs. Much to my surprise the legs would calm down within 15-30 minutes...guaranteed. As I took the vitamins only at night I soon noticed that it was worse just pre-menstrual. As I am now menopausal I had a total abdominal hysterectomy I take injections and I still have a cycle and have still identified the pre-menstrual state as needing the vitamins...Hope that this information will help someone...I remain...Marilyn...no more restless legs.
P.S. The Allbee with Vitamin C from Whitehall Robins seems to work better than others as I have had to on occasion while in the United States buy other brands and they didn't work as well.
Date: Thu, 06 Feb 1997 14:15:26 -0800
After YEARS of all sort of symptoms, feeling like I was crazy, etc., I am finally zeroing in on the problem...RLS! I have had lots of incorrect treatments, e.g., neck surgery, lithium, etc., and finally today have found a neurologist who thinks this is my problem. I have to have some more tests to rule out everything known to mankind, but I have hope. The problem is treatment which we haven't discussed. I have found help for the "bugs in the bones" at night with a little Klonopin but things have escalated big time into my shoulders and arms and I have pain, numbness, tingling, weakness, etc. Do others have symptoms like this? Interesting comment from the doctor...some think it can be caused by prolonged Valium use and then discontinuance...something that happened to me in the '70's as a treatment for lower back trouble!!
I am so happy to have found this place on the Internet. My daughter said, "Have you checked the Internet?" Duh, Jane!
Jane
Medical Reply
The theory of RLS being somehow related to previous long term Valium use is interesting
but has no medical support. There are many pet theories about RLS but the actual cause is
so far completely unknown.
Your symptoms are very similar to other RLS patients. If you come to the support group
meeting you will hear many very comparable complaints.
Date: Fri, 07 Feb 1997 19:39:58 -0800
Subject: BURNING
I don't often walk a lot but I have been suffering from burning in the sides of my legs
by my knee caps. This started about 4 years ago then disappeared. Now it's back and it
seems like it's traveling to my other leg. I could probably hold a lit match to my left
leg and not feel a thing.
Any Suggestions would be appreciated,
Bill
Medical Reply
From your description, I am not really sure what from what disease you are suffering. It does not sound like you have RLS. It sounds somewhat like Reflex Sympathetic Dystrophy (RSD), but I would recommend a consultation with a neurologist for more definitive diagnosis of your problems.
Date: Fri, 07 Feb 1997 15:09:43 -0500
Subject: Re: Non-medicine relief of Restless leg syndrome
I BEING AS YOU ARE IN THE MEDICAL FIELD CAN YOU TELL ME HOW TO GET THOSE DOCTORS TO LISTEN!!! I HAVE BEEN TRYING FOR 13 YEARS TO GET THIS INFORMATION OUT TO THE MEDICAL FIELD BUT IT GOES JUST TO THE DOCTOR I WRITE TO AND DISAPPEARS.
I WOULD LIKE TO FIND A DOCTOR WHO IS INTERESTED AND MAYBE INTERESTED IN DOING A BLIND STUDY AND IF IT TRULY WORKS AS OFTEN AS IT SEEMS TO WORK WITH OTHER PEOPLE I KNOW...GET IT WRITTEN UP IN A MEDICAL JOURNAL OR SOMETHING. I AM PRESENTLY AWAITING NEWS FROM THE MANUFACTURER OF MY VITAMINS AS THEY SEEM INTERESTED IN LETTING ME ARRANGE FOR A STUDY...THANKS
Medical Reply
Despite the very high prevalence of RLS (5% of the population), it is treated as an orphan disease as it is not well known even in the medical community. There are only a very few studies on RLS drugs so far but this is changing, especially with the efforts of the RLS Foundation. If lots of people benefit from your therapy, maybe we can get some action for a double blind study.
Date: Fri, 07 Feb 1997 09:04:51 -0800
From: Jane B.
Subject: Symptoms
Thank you so much for your promp reply to my question. I admit that I was so happy to find the website that I sent off a couple of emails before I had time to think about what I really wanted to say. I do have a couple of questions that I don't want to wait until May to ask because I am finally getting to the bottom of this 10-15 year search down so many blind alleys.
The "bugs in the bones" thing at night, first in my legs and then in my arms and shoulders, has pretty much been put to rest with a little Klonopin. I never have had the moving legs part. I just squirmed around in bed trying to get away from it and sometimes got up to get a glass of milk which sometimes helped. It occurred to me today that maybe the Tryptophan which was banned a few years ago would help since that is in milk.
Anyway, the thing that has had me bouncing around from doctor to doctor the last 10 months is this: precipitated mostly from fine motor activity like playing the piano and using the computer, I get progressively nerve sensations, almost like muscle spasm but more like the exaggerated "bugs" deal starting in my shoulders...down my arms. My ulner nerves in my elbows are like boils so I can't set my arms down on anything. I get tingling and numbness in my hands, aching in my arms and wrists like carpal tunnel but that has been ruled out. Actually everything mechanical has been ruled out. I am tender everywhere you can poke and weakness in my legs. They are calling it polyneuropathy or restless legs syndrome. The neurologist told me that this is not confined to the legs as the title implies but have you heard of anyone having this much stuff in upper body? It really has stolen my normal life at this point. Do you think I am on the right track?
Thanks!
Jane
Medical Reply
RLS should stand for Restless Limbs Syndrome as many of the patients have arm and leg problems. I am not sure of what you are describing as not being relieved by Klonopin. The other symptoms which are worse with typing do not sound like RLS as RLS usually gets better with things like computer activity and your complaints occur with these actions. With most RLS patients, rubbing or contact with the affected limb usually helps, not worsens the problem. I would have to get more information to try to discern the nature and correct diagnosis of your condition.
One of the benefits of the support group meetings for RLS is that you can describe your symptoms and see if others have similar ones which may all of help better understand what you have.
Date: Sat, 08 Feb 1997 23:48:55 -0500
Subject: Re: Non-medicine relief of Restless leg syndrome
I must admit that I am not up on any of the treatments used for RLS. I found what works extremely well for me and like I say the only time I have ANY trouble is when I forget them at home when I go out of town. They work so well that I have left some at all my regular out of town haunts. Do you have any papers on any studies done with respect to either hormones and vitamins? I am 200% sure that these are where the cure lies and am presently reading everything that I can get my hands on.
I recently had a hysterectomy and am presently on injections to replace the hormones as they took out the ovaries. My experience is giving my an opportunity not afforded to many as I can map out when I receive the injections and when I start to have the RLS and have to go back on the vitamins.
Marilyn
Medical Reply
There is little or no medical literature on vitamins or hormones and their relation to RLS. Your experience with your hormone shots is interesting, and I have not heard any similar experiences in other RLS patients.
Date: Sat, 08 Feb 1997 20:11:02 -0800
Subject: Holiday from Sinemet??
I am writing on the behalf of my aunt who suffers from RLS (and lives in Saint John, NB, Canada). She is presently taking Sinemet CR and regular Sinemet. At first it seemed to control her legs quite well, but at the present time, it definitely isn't. My sister and I think that her body has become used to the drugs so they aren't as effective anymore. We think she might need to take a break from the medication, so hopefully she could start taking them again and get relief again. Has anyone experienced this loss of relief? Has anyone taken a break from the medication? If so how did you go off it? We are really desperate and really need to get some information from other people.
Cathy R.
email: rwr@nb.sympatico.ca
Medical Reply
Unfortunately, it is not uncommon for RLS symptoms to be controlled at first with Sinemet, then not as well even as the dose is increased. Problems with rebound and augmentation occur (see our new upcoming RLS Drug Treatment Page for further discussion of this topic) making the drug less effective. Taking a drug holiday does not seem to help with Sinemet, but rather discontinuing Sinemet is recommended (no problem except for rebound of symptoms) and using other medications.
Other choices include Permax or Parlodel (in the Parkinson's class) or using other classes of medications.
Date: Sun, 09 Feb 1997 21:36:34 -0800
Subject: Re: Holiday from Sinemet??
How do people usually go off Sinemet? Do they just stop it cold turkey, or do they slowly decrease the dose? My aunt seems to get some relief from it but not as much as when she first started it. We are really concerned about her because lately she only gets to bed at 7:30 am and then only for a couple of hours. We are afraid if she does just stop it that she should be medically supervised because of the the agony she is going through.
I really appreciate you responding to me. My aunt's doctor does not know very much about RLS, and nobody around here seems to really realize the severity of her problem. Thanks again.
Cathy R.
Medical Reply
The only problem with going off Sinemet cold turkey is that worsening of symptoms (rebound and augmentation that I keep talking about) may last up to 4 days. One way around this would be to add Permax (this is easy to use but requires knowledge of how to prescribe it - I will be detailing how to do this on my upcoming Comprehensive RLS Treatment Page) as the dose of Sinemet is being reduced.
Again, a medication such as Xanax taken at bedtime should afford your aunt several hours of good quality sleep.
Date: Mon, 10 Feb 1997 20:36:21 -0500
Subject: RLS?
I have been diagnosed with RLS. I don't agree with it. I have had many symptoms; balance problems, burning nerves in back & legs, numbness and tingling on mainly left side, left arm very weak, headaches,f ullness feeling in back of head & neck. My older sibling has MS. I've been on Sinemet CR for months. It's helped the balance & tingling problems mainly. The burning nerves & shaking nerves is what drives me nuts. Narcotics help. I have had an IV iron transfusion of 4ML. The Dr. wants me to have more. I'm hesitant. Any input is welcome.
Patty H.
Medical Reply
Some of your symptoms do sound like RLS, but I am not sure anyone would make a definitive diagnosis of RLS based on just what you have written so far. The Sinemet CR and narcotics (in the correct doses) can be useful for RLS, but the Iron infusion does not make any sense at all.
Iron deficiency has been documented to cause RLS and in these patients with proven iron deficiency, iron supplementation has been of benefit. Unless you also have documented (by lab tests) iron deficiency, iron therapy is of absolutely no benefit. IV iron therapy is quite unusual, as for most patients oral iron therapy is more than adequate.
Date: 97-02-12 13:53:52 EST The following is one of my more unpleasant experiences with RLS:
For fourteen years, after having a single coronary bypass, I began having angina whenever I exerted myself. My cardiologist put me through several tests and suggested that I have an angiogram performed to determine if the bypass was still working and whether or not I had any other coronary blockage.
In November, 1996, an angiogram was performed on me. During the procedure which involved inserting a catheter in my artery through an incision in my thigh, I was advised to keep my right leg still so that there would not be any excess bleeding. It did not occur to me that I would experience the movements in my leg caused by my RLS condition and as a result, the doctors and the technician had a great deal of difficulty stopping the bleed ing. At one point, I nearly passed out.
As a result, it was necessary for me to spend one night in the hospital so that the doctors could observe the incision.
Had I anticipated the problem, I probably would have taken some medication or informed the doctors ahead of time.
Katy
Date: Wed, 12 Feb 1997 22:47:51 -0500 (EST)
Subject: rls and enzyme therapy
As a dentist with about 20 years in practice, and a good general medical background and interest in nutrition, I have studied(a bit) the issue of RLS as my mother and father both suffer greatly. In the process of enzymes therapy to enhance general health and nutritional processes, we have had complete remission of RLS symptoms. I would be interested to find out if others have had similar results, and if so where can I find them.
My results have been nothing short of miraculous, but my study group is admittedly small.
Thank you,
Michael L. E. D.D.S.
Date: Fri, 14 Feb 1997 12:22:40 -0800
Subject: RLS
Hello - I cannot tell you what a relief it is to find that there is actually a name for my "restless legs and arms". I am a nurse, but have never spoken to a doctor or other nurse about this. I drove my late husband crazy having to get up several times in the night, or else just lay there and wiggled my feet, because I HAD TO!! I'm retired now, but have had this since the birth of my last child in 1958. That's a long time to have something, but I have always thought of it as a problem in my head, rather than an actual physical disease. Well, kind of a disease. I have never found anything that helped that I can recall, short of getting out of bed, and reading, or playing around on my computer, something I have messed with since 1988.
I did try Halcion at one time, used 1/2 a 0.25 mg tablet, but it has a terrible rebound effect, and I am reluctant to use something every night. Anything below 1/2 tablet didn't help at all. However, I will now ask my doctor about some of the other suggestions I have seen on your home page, and in the letters. Melatonin doesn't help, nor Valerian, nor B6, and I take calcium 3x per day with no help.
My jittery limbs are intermittent, and seem to occur without warning. Of course, I have never kept a diary on this, so may try that too. I live in the desert near Joshua Tree National Park, but am originally from Canada where all my children were born. I see quite a few Canadians have the same symptoms that I have. But then, so do many Americans, so I doubt that climate has any effect.
In any case, thank you for showing that there are many others with my same symptoms and that there are methods for dealing with this strange problem.
D. Joan M.
Medical Reply
Rebound is a common side effect of Halcion. Xanax works much better and a new product, Ambien may be the best product (for your problem) so far. Check with our soon to published (on our web site) Comprehensive RLS drug review page for more details.
Good luck.
Date: Sat, 15 Feb 1997 12:32:51 -0500 (EST)
Subject: rls
Well I saw a sleep disorder specialist and Permax is helping some, but after 8 days, it is losing its effects. I want vicodin, the only thing that works hands, or legs, down. Due to societal pressures, the doctor would not perscribe that.
The society of RLS sufferers do not seem to look down on the use of vicodin. Ya'll know why I want a for sure cure. RLS is the most horrible feeling. Not real painful but horrible in other ways. It is tricky. Just when your mind starts to fall asleep, you arms and legs wake up and want to party. I am pissing my boyfriend off every night with what he calls my Jimmy legs.
Good luck to all.
Medical Reply
Sorry the Permax is not working well enough. You may need a higher dose (but do this with your doctor). Vicodin and other narcotics are used with extreme discretion and often too reluctantly by physicians not that well versed on RLS. Sedative medications such as Xanax, Ambien etc. may be very helpful at bedtime for your "Jimmy legs".
Hope this helps.
Date: Sun, 16 Feb 1997 03:39:03 -0600
Subject: restless leg solutions
Has anyone tried deep breathing to settle restless legs? I've been experimenting with it during the past few weeks and seem to have success. However, this can hardly be called scientific testing. Also, I can't believe the solution could be so easy.
However, when my leg begins twitching, I sit upright in my chair, rest my hands on top of my thighs, close my eyes and focus on a spot straight ahead, and take regular deep breaths for up to ten minutes. And the leg calms down. But it makes sense since I understand the cause may be related to not enough oxygen reaching the leg.
If anyone else has tried this, let me know whether you are getting the same sort of results. And, if not, what does happen?
Thanks,
Janet J.
Medical Reply
What you are doing is very similar to Yoga, meditation, etc. I am sure it works for a good percentage of RLS patients if they can become proficient at it. I am fairly sure that the increase in oxygenation from the deep breathing is only marginal, and likely has no clinical effect.
Date: Sun, 16 Feb 1997 10:13:28 -0500 (EST)
Subject: Thank heavens
I am a 25 yr. old woman, and I am in tears. I am crying because I believe I have finally been able to figure out what's wrong with me. Every single person I have ever slept next to has commented on how often I move and twitch at night. EVERY ONE!! Not to mention the fact that I used to drive my great aunt crazy, always swinging my legs, constantly shifting in my seat; hence, they dubbed me "wiggle worm." Every morning I wake up to find all of the sheets and blankets torn off of the bed. As I grow older, the twitches per minute are growing worse. In my early teens, I was given Elavil because they said I was chemically imbalanced.
Although I was less easily distracted, and certainly less irritable, I thought the drugs were turning me into an unfeeling zombie and stopped the medication.
I have to wonder if the irritability is due to lack of sleep. I have suspected for some time now that like people with sleep apnea, I am constantly waking myself up at night. When I lie down to sleep, my poor boyfriend says I jerk off to sleep. Not to mention the fact it takes 2 alarm clocks going off simultaneously to wake me in the morning, and occasionally I will sleep through both of them!!! I am always sluggish in the mornings and all my boss suggests going to bed earlier.
I have tried and tried to explain this to people, they just don't understand. Thank you for backing me up on this. Perhaps now they will understand.
Jennifer B.
Sacramento, CA
PS Are there any support groups in Sacramento?
Medical Reply
I hope you see a sleep specialist for your problem as most RLS patients can get relief. I will have our group co-ordinator, Mrs. Tunison send you more info.
Date: Mon, 17 Feb 1997 00:58:36 -0500
Subject: RLS
It's a comfort to see that I'm not the only one who has RLS. Mine is nowhere near as severe as many of the letters I read here, but it has seriously affected my life anyway. I've always been known as a sleepy person, whether in school, at work, or at church. No matter what I tried, I would still feel incredibly sleepy during the day, regardless of how much sleep I got. I could sleep three hours or ten, and still have about the same level of awareness. What is worse, is that I now have sixteen years in the Navy, and I have already been awarded non-judicial punishment for sleeping on watch - there was just no way for me to sit near a humming piece of machinery and reliably stay awake. I remember jogging for 45 minutes at a time to stay awake on watch, because if I stood still, I would fall asleep! Yet, other than my constant sleepiness, there was no apparent symptom of any disorder.
Fortunately, I was finally able to get the Navy to get me a sleep survey - and it took two studies to show what was happening. I have small, almost unnoticable leg twitches while I sleep, about 30 per hour, (and a slight case of sleep apnea) and I would never have a deep sleep. I remember how, when the doctor told me this diagnosis last month, I broke into tears like a little kid. Not because I could be treated, but because all these years, I really had been trying my best. Sure, it means the end of my career and for the stability it provides my family, but now I know that I was doing my duty to the best of my ability. I wasn't wrong, I wasn't lazy or crazy or any of the labels put on me for my sleepiness. Sinemet is making a real difference in my life. Thanks be to God.
Date: Wed, 19 Feb 1997 00:20:25 -0800
Subject: Restless Leg
I am a 58 year old female, and I have had RLS for as long as I can remember. When I was younger, it wasn't as bad as it is now. When I was 50, going through menopause, RLS and my sleeping became much worse.
I eventually went to a doctor who had never heard of RLS, and I had a hard time getting any understanding or relief. But I found a doctor who knew about RLS, and she was willing to work with me. I did the sleep clinic, and all the neurological tests available....no answers. Then I started on trial medication. Most did not help at all. Klonopin has worked the best for me, but the dosage has to be upped every so often, and I don't like to be on heavy medication. After several years, and trying many combinations, I prefer to go off all medicine for a few weeks, and then go back on Klonopin. It isn't a great solution, but...
Some things I've learned over the years: Certain vitamins make it worse...Vit. C bothers me, but I find Ester C works fine -- The B vitamins seem to make it worse -- (I start one thing at a time so I will know what sets it off). Antihistamines are a no no. Also antibiotics adversely affect RLS. Excessive walking bothers my legs, but stretching helps.
After midnight I sometimes have to end up on the sofa, because I can put one leg under a sofa pillow, and the other leg pressed in between the back of the sofa and the same pillow. The presssure relieves my legs enough to get to sleep. I don't go right into a deep sleep, and that exacerbates my RLS. I am generally a light sleeper...my best sleeping comes around 6 or 7 am. A "noise maker" helps light sleepers. One can be purchased in J.C.Penney catalog for around $50. A hot pad helps... especially upon first lying down, before legs get bad, but wrap it in enough towels, etc. so as not to get burned. The last one I bought turns off automatically after so long. Take in no caffeine at all, and take your vitamins with your first meal of the day. I have a small TV beside my bed, and when I am awakened with RLS, sometimes watching TV helps divert the brain/thinking long enough to fall back to sleep after awhile. Allowing the legs to get cold makes it worse. Riding/sitting for long periods makes it worse. Sorry for being so lengthy...hope my input will help someone.
Elizabeth
Medical Reply
Thank you very much for your very informative letter which I am sure will be of aid to many RLS patients.
Have you tried the other classes of medications yet (opiods and Parkinsonian medications)? You have found what is very common with the sedative medications in that tolerance develops in many patients. May I suggest that you take drug holidays for 2 days every one or two weeks which usually prevents tolerance and cuts down on the weeks of off time in the way you take your drug holidays. Also Ambien, a new sedative may work for you with less chance of tolerance problems. Please check with your own doctor before instituting any of the above suggestions.
Date: Wed, 19 Feb 1997 15:28:31 -0800
Subject: rls and sublingual B12
Do you have any info on use of sublingual b12 for RLS? I have a herniated disc and am under PT, I suffer from RLS and take Klonopin. If B12 works, I would like to change?
Medical Reply
I have seen nothing special about B12 and RLS. B12 deficiency can cause anemia, but only folic acid and iron deficiency anemia have been associated with RLS. Replacing folic acid or iron only in these deficiency states will help RLS. Taking folic acid or iron without documented anemia due to deficiencies of the folic acid or iron will not help RLS. Patients with B12 deficiency do not seem to get RLS.
There have been sporadic clinical reports of B12 and other vitamins such as C and E that have been helpful in RLS. These work in an extreme minority of RLS patients but are always worth trying in reasonable doses.
Date: Wed, 19 Feb 1997 02:00:30 -0500
Subject: So this is real???!!!
I can't even begin to tell you what a relief it is to know that I am not alone. I'm female, 33. I've always had jumpy legs of a very minor nature, but about 6 months ago, my legs went crazy!
It started one night when I awoke in my waterbed and thought that I was being electrocuted by the bed! I leaped out of bed and tried to get my husband to do the same because I thought he was in danger. He convinced me it was just a dream.
The next night it happened again--out of a deep sleep, the bed must be electrocuting me! But there was my husband and the cat sleeping peacefully.
The third night, again, but this time I knew it was just me. At this point, I was getting really REALLY tired of this. And I had a huge bruise where I kept hitting my leg in the same place everytime I "leaped". That's what it became known as: (husband) "You leaped again last night." (me) "Yeah, I know."
I went to the doctor and she said that unfortunately there wasn't anything she could do for me. So I just kept enduring these things every night for about a month. Then gradually they began to taper off. Now I only leap or feel the need to leap about once every week to ten days. I STILL have to convince my groggy self that I am NOT really getting shocks from the bed.
The first thing I'm going to do now is find another doctor!! I am so glad I found this web page, thank you all for your information. It helps just to know that I'm not crazy nor alone. Thank you.
Sincerely,
Vickie H.
Medical Reply
Got your email. We have our web page out there especially for people like you. You might want to take a copy of the treatment section of our web page to help your local doctor in case he does not have adequate expertise in PLMD (Periodic Limb Movement Disorder).
Click to go to the RLS Homepage, RLS Treatment Page
Source: Southern California Restless Legs Support Group, Patient Letters and Medical
Answers Section, Page 2
http://www.rlshelp.org/rlscomp2.htm
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