If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Date: Wednesday, June 24, 1998 10:38 PM
Subject: Worsening of symptoms in summer.
It was just within the past two days that it dawned on me that weather may have something to do with my worsening symptoms in the summertime. Last summer I had a terrible time with my RLS. It completely ruined our vacation in fact. Then, in November I started on Permax and my RLS disappeared completely for six months. I gave all the credit to the Permax, not realizing there might be a weather-related component.
In March I started on Mirapex. It worked well for two to three months. I live in Florida where the weather right now is extremely hot and humid. Right on schedule, my RLS is worse than its ever been. Nothing brings it under control.
Tonight I sat down to read some of your letters, and there it was. Others were experiencing this phenomena. I wasn't just imagining it. What an eye opener this is. But what do we do all summer? Suffer until next November? Doesn't sound very pleasant.
Thanks for your wonderful page. It's the best on the Web by far!!
This "Summer RLS" seems to be quite common. You might consider adding a narcotic medication (or Ultram) to your regimen. Have you tried Neurontin yet?
Date: Sunday, June 28, 1998 10:31 PM
Subject: Sleepless in Atlanta
I located your web page yesterday and pray that you can help me get some sleep. After 15 years of dealing with undiagnosed RLS, I had a sleep study ten years ago which showed I suffered from severe RLS and PLMD. I have taken Sinemet both 25/100 and CR versions with minimal effect. I was prescribed Klonopin, but this proved less successful. About a year ago, I went to my neurologist and started back with Sinemet CR, but it only provide about 4 hours of sleep and left me exhausted the next day.
I am now taking 2.5 of the 25/100 tablets and although not so tired in the morning, still get only 3 to 4 consecutive hours of sleep. If I try to take more, I am drowsy through the morning. Further complicating my problem is that I am an at-home dad and get up with my kids as early as 6 am. I also work nights in the bar business so, my "window of opportunity" is quite small. I know that if I could get 5 or 6 straight hours of sleep on a regular basis, I could be completely energized.
I have tried herbal teas, warm baths, aromatherapy and self-massage with limited success at best. Last night, I was out of town without my Sinemet and had one of my worst attacks of recent months--up till 6:30 am. When younger, I would describe this condition as "my hands and feet are nervous". These days my RLS is nerve Wracking. I stumble around at nights and often seem to fall asleep while walking--fortunately waking in time to stop the fall.
At this point, I am a desperate man. Please point me in the direction of sleep.
Sinemet may not be the best drug for you. Consider a change to Mirapex or Permax, two other Parkinson's disease medications which may work better with much less side effects. Check on our RLS Treatment Page to see how to taper off of Sinemet while starting another drug. Consider using a shorter acting nighttime sedative, such as Ambien or Xanax, which should not cause daytime sleepiness (especially the Ambien which is very short acting).
Another choice to add if necessary would be the narcotic class such as Tylenol with codeine or Vicodin.
Date: Thursday, July 02, 1998 4:39 AM
Subject: Connection between glucosamine sulfate and RLS symptoms
I have been taking glucosamine sulfate for the past 2 weeks. I have also noticed a marked increase in my RLS and have slept very poorly for these two weeks. Have you had any other reports of this? I am not sure if other factors may cause the worsening of my symptoms.
We have not heard or seen of any references of a connection between RLS and glucosamine sulfate yet. We will post it on our web site and see if others may have had similar complaints.
Date: Thursday, July 02, 1998 4:38 PM
Subject: Restless Legs Syndrome
I have recently been diagnosed with RLS and Fibromyalgia secondary to the RLS. It's really frustrating and tough to make my physician understand the extremeness of my symptoms. When I sit in his office he doesn't see what I feel mostly at night. I recently made a drastic job change to night shift thinking this would help. It didn't. I am a nurse and I still just don't understand why, what, and where to go for relief of the horrible symptoms I have.
I don't sleep well (that's an understatement). For the past few weeks my symptoms have drastically worsened. I now have so many of the same symptoms in my arms and hands. People just don't understand. Co-workers think RLS is just another of those "it's all in your head" disorders. I really don't know where to turn next.
I take Klonopin which helped the first two weeks, but now things are worse than ever. I find that I am beginning to get very frustrated and depressed and am looking for advice and suggestions on help. I would appreciate any assistance you could provide.
I look forward to hearing from you,
If you have read many of our letters, you probably are already familiar with the frustration of RLS patients in getting others to understand and acknowledge their disorder. Please seek out an RLS support group in your area by checking out the RLS Foundation's list of support groups in the United States. They can probably direct you to a physician in your area who is familiar with RLS.
You would probably do well with the Parkinson's disease medications, such as Mirapex. This combined with a short acting sedative such as Xanax or Ambien (not Klonopin which is too long acting) should help you get a good night's sleep.
Stay away from shift work which generally makes the problem worse. Check out our RLS Treatment Page to see other options for treating RLS.
Date: Friday, July 03, 1998 7:38 AM
Subject: Restless Leg and Pesticides - I'm positive this is the cause.
I have had this most of my life, and I am 50. When I realized that it was pesticides that caused the problem, I avoided them whenever possible. I am completely surprised that I don't find literature connecting to the two. Restless leg syndrome is a fairly new thing, I read, that seems to have shown up about the same time pesticides were used more frequently. I looked up various pesticide research with animals, and found that symptoms such as muscular spasms, erratic jerking, etc were common to most types of pesticides.
My own experience came by accident, years ago, when I noticed that when I ate vegetables from our organic garden, I didn't have the symptoms. And when I ate only grapes one day ( grapes that had been sprayed) I was kicking up a storm. Since then, I have bought only organic foods or by trial and error found stores that seemed to buy from farms that used less harmful pesticides.
Whenever I had the leg jerking, I would think back to what I had eaten. It always was something I could trace to pesticides. When I got it after eating bread - I called the bakery and found they use wheat that was sprayed. The worst are tomatoes, peppers, strawberries, apples, grapes, lemons and oranges, (frozen juice), lettuce, some flours (breads, cake, ). Spaghetti sauce is a killer unless it is organic. The symptoms come between one and three hours after eating these things. I think that's why you get it at bedtime, -- it's a few hours after the evening meal. I can lessen it with vitamin C, which is known to reduce toxicity of anything. And of course, by eating organic.
I find the symptoms get worse, as the years pass, as if the pesticides are cumulative in the body. Once, long ago, I called a certain pesticide company that I had identified as one that caused the worst symptoms. It was after closing time and I reached a maintenance person who said, "Oh. Lots of people here have that jumpy leg thing. I wondered what caused it." ! ! !
I am a lay person, and the little research I can do on the net or in the library is minimal compared to a well designed research program. I would like to see specifics about the chemical and physical relationship between our bodies and pesticides. I see that pesticides are "cholinesterase inhibitors." Perhaps there is something there. Some of the treatments people are finding helpful may be related to re-adding substances that were blocked or thrown off balance by the pesticides. In any event, I will continue to eat organic foods.
Your theory about pesticides is interesting and probably as good as anyone else's theory as the medical establishment really has no idea as to what is causing RLS. RLS/PLMD is not really a new disease. It has likely been around for thousands of years (or longer). It is only that it has just been recognized as a disease over the past 50 or 60 years. There are medical descriptions of RLS dating back 500+ years, without of course a name or diagnosis.
This is similar to sleep apnea which has millions of sufferers, but was not known as a disease entity until 30 years ago. It would not be correct to say that no one had this disease prior to 30 years ago, just that we doctors did not recognize it. We will post your observations and theory and see if others have the same experiences and can add some information.
Date: Saturday, July 04, 1998 8:25 PM
Subject: restless legs
I was told by someone recently to jump on a trampoline or minitramp...just bounce....it has helped me to get some relief. I do this before bedtime. My legs seem to bother me the most in the warmer months for some reason. I thought perhaps I was holding water or something. Normally I can take a couple of aspirin at bedtime or rub them with aspercreme, but over the last couple of weeks that has been useless to me. It has been very bad.
Running cold water over them seems to help at times. Not recently....but jumping (or bouncing on the trampoline for 5 - 10 minutes has helped a lot....My legs feel so good after I come in and get still when I do that.
I hope that this helps some others.
Your RLS getting worse in the warmer months is probably what we call "summer RLS". This is a worsening of RLS in the warmer months that seems to be quite common.
Various exercises such as stretching, walking, etc., seem to help RLS. Your trampoline work out is an interesting variation on the theme.
Date: Monday, July 06, 1998 9:43 PM
Subject: Insurance denied due to RLS
I wrote back in February concerning a disability insurance denial based on a former diagnosis of RLS. Despite several efforts, the company has continued to ignore further requests for dialogue on the matter. The medical director stated in his letter that they did not have enough experience with RLS to make a decision. This is very discouraging as I have been asymptomatic for two years and never had symptoms which affected my work ability.
Thought your group would be interested. The insurance company is Union Central.
Garry G., MD
Insurance companies generally do not even care which diagnosis you have. Once you have 3 black marks (almost any current or former diseases), you have struck out. I have seen this with patients who have a history of asthma (now inactive for 30 years) and other such ridiculous situations.
Date: Sunday, July 12, 1998 7:34 PM
Subject: RLS & PLMS &?
I wrote a few weeks ago about needing to take more than one Sinemet 25/100 a day and discovered that at only 2 of these I got serious rebound and augmentation problems. During the daytime I was getting sleepier and sleepier and my legs were bothering more than ever. My doctor prescribed Mirapex. Within three or four weeks I was up to .375 mg. in the evening, not falling asleep as well as I had on Sinemet and feeling headachey and nauseous.
One day last week my stomach was so upset (quite unusual for me) and the headache was annoying and I was so sleepy I had to leave work to just lay in bed, but not really sleep, all afternoon and until the next morning. My legs hurt SO much also, that I called my doctor and he put me on Klonopin .5 mg. at bedtime. The first day after, my legs ached worse than ever and I was sleepy all day. The second day after I was so limp all day I could barely remain standing. I felt that I had to lock my knees to keep from going limp and falling to the ground. The third day after taking only 1/2 of the .5 mg. Klonopin I was in a daze all day long, more severe even than usual and felt like if I relaxed control my head would literally fall off of my shoulders from being so limp. Needless to say, this is the weekend and I can't contact my doctor but I'm really afraid to take another Klonopin because I'm afraid by morning I may be so weak I can't even get out of bed. Help!!!
I'm wondering about the soon to be approve drug Modafinil and why it wouldn't be a good drug for those who don't receive enough help on getting a "good" night's sleep. I feel that I may be benefited more from something like that and maybe a short acting sleep aid than what I have already tried but the only places I can find out about these other treatments are in areas on the internet dealing with Narcolepsy. I guess I just don't understand why these two disorders are treated so differently when some of us RLS sufferers still don't seem to get enough energy from their sleep to make it through the day. Any ideas for where I should go from here?
May God Bless You,
Modafinil is a new alerting drug which will likely replace amphetamines and Ritalin in the treatment of Narcolepsy. It should not be prescribed for people who are known poor sleepers from RLS, PLMD, sleep apnea, medications, insomnia or other causes, except for Narcolepsy. When daytime sleepiness is from a known cause, the cause should be treated and not masked by treatment. This will only allow the real cause to continue and likely worsen and create other problems. Narcolepsy seems to be a disorder where the sleep center is turned on during the daytime, and there is no other option but to use alerting drugs to counteract the sleepy making effects of the sleep center during the day.
It sounds as if the Mirapex (which seems to work well on many RLS patients) is not doing so well on you. You may want to consider Requip, a similar drug which in your case might possibly work better with less side effects.
Klonopin sounds like the wrong drug for you. We do not use much Klonopin for treating RLS here, due to the very high rate of daytime sleepiness (as in your case). See if you doctor can change you to a shorter acting sedative such as Ambien or Xanax.
Date: Monday, July 13, 1998 8:59 AM
Subject: tyrosine and phenylalanine for RLS
I was wondering if anyone had had luck with the amino acids tyrosine and phenylalanine in treating RLS. They're what the body uses to form dopamine, from what I understand, and require folic acid, niacin, vitamin C and copper for absorption. I've tried tyrosine (in a protein muscle-building product) and the other required vitamins for just two days with no effect yet, but it seems like a fairly direct route to manufacturing more dopamine.
Those are interesting thoughts. Dopamine like medications do help RLS, but it does not follow that dopamine precursors (chemical that form dopamine) are what is needed. For example, the problem may not be the formation of dopamine, but rather the release of dopamine from the neurons.
Other dietary supplements have been tried, but usually help very few. Folic acid deficiency has been implicated in a subgroup of RLS sufferers in which case treatment with this would be helpful.
Another Letter from Solveig
Date: Monday, July 13, 1998 4:10 PM
Subject: Bupropion hydrochloride and RLS
I was wondering if Bupropion hydrochloride (Wellbutrin) has been used successfully to treat RLS. It's a dopamine reuptake inhibitor, which is right on the money, and has been used somewhat successfully to treat ADD, which is similar in that it is related to lower dopamine levels.
Wellbutrin (also prescribed as Zyban for smoking cessation) does inhibit the neuronal reuptake of dopamine (therefor making it more available) to some extent. It is not known how well it does this, but it has lots of other neuronal actions which account for its drug effects. The anti-depressants in general, seem to have either positive and negative effects in selected patients.
I have heard from RLS patients on Wellbutrin (or Zyban), some of whom have done better and others who have done worse. It is very difficult to figure out why these very different reactions occur with the same drug, but that is typical of RLS treatment in general.
Date: Monday, July 13, 1998 5:40 PM
Subject: The Computer Effect
I am an 84-year old male with probably what would be called a mild case of RLS. I sleep very well but sometimes have periodic daytime discomfort with muscle spasms in the calf of the leg sometimes very frequently.Is RLS a generic term that would cover this?
I note that reference was made in this web page to an easing of the discomfort when working on a computer. I had long noticed this but never found any support for this as a factor. I can work hours at my computer with seldom any problem but usually when I sit in a easy chair to read the leg acts up. Other sitting arrangements are inconclusive.
I tended to believe this was affected by sitting posture and is not a brain effect. I should add that I have a moderately severe case of spinal stenosis. Both this and the RLS have worsened in recent years. Any possible connection?
RLS is not a generic or non-specific term. It is distinct and very well described (even if the pain is difficult for RLS sufferers to describe) disease entity.
It does not sound as if you have RLS. It sounds as if you have common (but very annoying) calf muscle spasms. These also occur for no good reason, but are localized to the calf muscles. One can feel the spasm in the muscle and possibly even massage the spasm out.
RLS feels more like bugs crawling inside your legs (or arms) whenever you sit or rest. These sensations make you want to move your leg or walk in order to relieve these very unpleasant feelings.
Date: Tuesday, July 14, 1998 10:48 AM
Subject: RLS Update
It was almost a year ago when we last communicated regarding my RLS situation. At that time, after you reviewed my symptoms, you recommended taking one Sinemet CR 25/100 daily. I have not deviated from that dosage since then. For approximately 9 months I was almost symptom free, then in the last 3 months the leg aching gradually returned until I am about where I was prior to starting on the Sinemet.
I have my annual physical scheduled for August 3rd and would like to review my situation with the Internist. I had previously provided him with your correspondence and he was supportive and prescribed the Sinemet as you suggested. I wonder if you have any thoughts where I should go from here??
Is Permax an alternative at this point or have any other drugs been developed to help with this RLS problem. I certainly appreciated your help last year and look forward to any comments you might have.
You may be developing some tolerance to the Sinemet. At one tablet per day, it is doubtful that you are developing augmentation or rebound from Sinemet, as those problems generally do not occur with less than 3 or more tablets per day. Tolerance does not occur very often with the Parkinson's disease medications, but we have seen it in a small minority of RLS patients.
I suggest you consider changing the Sinemet to Mirapex (similar to Permax, but seems to work better with less side effects). Start with one 0.125 mg tablet and work up to more if necessary according to our RLS Treatment Page. You may want to consider a 2 day drug holiday (one weekend) every two weeks to ensure that no tolerance develops. For these drug holidays, you may want to consider using sedatives and/or narcotics for relief.
Date: Tuesday, July 14, 1998 1:46 PM
I found your site very helpful but wanted to share my simple remedy. Two aspirins when I retire to bed at night keeps me sound asleep until morning with no symptoms of RLS. My first bout with RLS was when I was pregnant with my first child, since then I have been bothered by it off and on until now when I'm experiencing it more often at night.
I believe the problem in my family is peripheral neuropathy because my mother has had benign tremor of the hand for decades and is now experiencing the long-term affects of neuropathy, can not stand straight, moves very slowly, and cannot sit for long periods of time. My identical twin, of course, has the neuropathy too as well as my son. My twin has found relief, she claims, with a hyperthyroid medication as her thyroid count was higher than normal but mine is normal and I still have frequent episodes.
It's a mystery to all of us as well as the doctors. Keep up the good work with your site and maybe in the near future we will have clear-cut solutions to this annoying problem.
Aspirin is one of the oldest fabricated medications around. It is used for a multitude of medical conditions from headaches to preventing strokes. It is still not completely figured out as to why it works in many different conditions, so why it may help a few with RLS will be hard to understand.
We will post this to see if others have had similar experiences and may benefit from your observations.
Date: Tuesday, July 14, 1998 7:19 PM
Subject: Probable New Cause of RLS In some people
I have written to you before as I have RLS/PLMD in association with Chronic Fatigue Syndrome (CFS). Researchers at Johns Hopkins Hospital may have unknowingly stumbled upon a link between RLS and a blood pressure disorder. I have made the connection after being tested for CFS at Johns Hopkins for a blood pressure disorder.
Dr. Peter Rowe of Johns Hopkins Hospital's School of Medicine is a pediatrician that concentrated in the area of Neurally Mediated Hypotension or more commonly the fainting reflex. He would test his patients with a machine called a Tilt Table that would monitor a persons blood pressure upon upright tilt. In people with NMH which includes astronauts who have been in space for extended periods, there is a disconnect between the brain and the heart.
Normally the brain would send a message to constrict the blood vessels in the leg and make the heart beat faster and more vigorously. In patients with NMH the opposite happens and the blood pressure drops even with people who normally have high blood pressure. In severe cases people faint, but it has been found out that with people that have chronic fatigue syndrome, people may have a lessor response to it and only get lightheaded and then fatigue and concurrent mental confusion. It has also been found that people have adapted subconsciously mechanisms to keep from fainting or allowing the blood to pool in the legs such as fidgeting or moving their legs.
RLS in some people may be a result of this blood pressure abnormality and the tingling feeling in the legs and the uncontrollable urge to move the legs may be a response to blood pooling in the legs or arms. Symptoms of people who have NMH occur: After prolonged periods of quiet upright posture (sitting up for long periods or standing in line), After being in a warm environment (hot summer weather, warm bath), immediately after exercise, after stressful events, after eating when blood flow has shifted to the intestines. They also note that people with certain food allergies i.e. (cows milk protein) can trigger NMH symptoms.
I have noticed in the patient pages a number of home remedies that include wrapping the legs with ace bandages or other constricting garments. Interestingly, one of the recommended treatments for NMH is waist-high support hose. I think there may be a link here and these home remedies may work because they are restricting the blood from pooling in the legs which causes the tingling and aching feelings and allows the heart to pump the needed blood back to the other organs. I think the symptoms, triggers, and people's unconscious responses are too close to be ignored as a possible cause of RLS in some people.
Thanks for your interesting observations and thoughts on the causes of RLS and CFS. These are still largely unknown as far as etiology (cause) and one day in the future will possibly know the answers.
Date: Wednesday, July 15, 1998 10:07 AM
I just found your site and it is great! I have Fibromyalgia, and have been suffering for years, now I have a name for it. My doctor who is new to me put me on Elavil. He said it would help my pain and help me sleep.I have had chronic insomnia off and on for years. I can't even relate to going to bed and closing your eyes and actually drifting off to sleep. I also have this thing with my legs. The doctor said it was Restless Leg Syndrome.
I don't feel crawling sensations but I feel an uncomfortable feeling that's hard to describe.I can't lay still when it happens and I want to kick and kick and can't relax. I have to get up and move or walk. He gave me Xanax, .25 mg to take before bed along with the Elavil which I take early. The first time I took the Xanax it was the worst night ever. It seemed to make my legs worse. My eyes felt so tired but my legs and brain would not fall asleep. I'm not going to take it again.
My doctor is open to medication. Can you think of what might help me? The Elavil helped my muscle pains and did help my sleep for the first 3 days (25mg). Now he raised it to 50 mg because it seemed the 25 mg wasn't effective anymore.Now the 50 mg doesn't seem to work too well. Maybe it interfered with the reaction I had to Xanax.
The crawling sensations are common in RLS, but most patients find it hard to describe their own "weird" unpleasant limb sensations. What is almost universal and almost defines RLS, is the urge to move the limb in an attempt to resolve the unpleasant sensations. You certainly fit the bill for RLS. Xanax is usually a good choice for treating RLS.
I cannot say why it did not help you. Elavil, can help or worsen RLS; the reactions are quite varied amongst individuals. There should be no interaction between Xanax and Elavil that should make your RLS worse or cause you to need a higher dose of Elavil.
You may want to have your doctor try Ambien to help you sleep. Since you had an usual reaction to Xanax, it is hard to say how you will react to Ambien. The best treatment for you may be Mirapex (a Parkinson's disease medication), one hour before bed. Check out our RLS Treatment Page to read more about this drug and others that can be used to treat RLS.
Date: Thursday, July 16, 1998 8:55 PM
Subject: RLS-My father
My father has RLS and has suffered with it for many years. I have just started researching information on the web. From what I'm reading, I don't know what drugs, if any, would be appropriate for him to even try. He's diabetic and seems to be super sensitive to sleep aids. He's had a bad reaction where he's stopped breathing after being given a sedative and in general really reacts to even a small amount of similar medication.
He's looking for anything that will give him some relief in the middle of the night. This has played havoc with his nights and seems to be at wits end.
If sedatives are contraindicated due to respiratory depression, then the next best class of medications would be the Parkinson's disease medications. I would suggest trying Mirapex 0.125 mg tablets, starting with half a tablet an hour before bedtime. If this is not sufficient (and he has not adverse reactions to the medication), then he could increase the dose by half a tablet every week.
Date: Friday, July 17, 1998 10:59 AM
Subject: Jumpy Legs
Almost everyone in my family have "IT". That feeling that makes you have to move around. Although none of us use medication (as far as I know), the one thing that I have come to understand is it gets worse if I work out and the only way I find relief (either during the day or at night when I'm trying to sleep), is to tense my leg and "rump" muscles for as long and as hard as I can and then release them. I find this helps relax me and it feels good!!!! It may not make it go away, but it does give immediate, although temporary, relief!
Thanks for having a great web page and resources!
Date: Saturday, July 18, 1998 8:39 AM
Dear Fellow Suffers:
Please count me in as one of your RLS sufferers. In February of this year, the doctor started me on hormones (Premarin and progesterone). After the first 3 pills, I had a rash on my arm. The second month of taking these medications, I had a rash on both of my legs from the knees down which itched insanely. I went to my GP and he did not know what caused my rash. He stated that the hormones as well as my blood pressure medicine (Isoptin 240, a calcium channel blocker) could be the cause. I stopped all hormones, the rash got worse and worse all over my body. I went to the dermatologist who looked at the rash thought it might be psoriasis, took a biopsy. It came back non-specific
I then called my doctor for a change in blood pressure medicine, and he changed me to Tenormin. My blood pressure went down to 60/40. I called him back and he put me back on Isoptin 240, and my rash and itching was so bad I was up all night. I then went back to the dermatologist in tears, and she took two more biopsies to tell me they came back non-specific. I then stopped the blood pressure medicine all together, and have been off it for 3 months, my blood pressure is now 120/80 or 116/78. I feel that there was a significant connection between the blood pressure medicine, and the hormones and RLS. I am currently not taking either.
I next went to see a naturopathic doctor. She looked at the rash all over my body which itched beyond belief and stated that she thought it was yeast based. The dermatologist had place me on two weeks of prednisone, and the rash almost went away. With stopping the prednisone, I got the rash and itching back twice as bad. I went on a course of vitamins, minerals and special yeast fighting natural herbs. After two months of the herbs, the rash is going away. I started taking Benadryl for the itching, and then I started the electrical charges down my body, with the body lifts from the shoulders down with the itching, and now the creepy, crawling sensation of something biting me all over. I laid in bed one night and ask the good Lord to tell me what I had. I immediately got the message "restless leg syndrome". I had never heard of it, and I rushed to the computer to find out the info and I stumbled onto your web sight. I was up all night itching, and electrical charges going down my body, but at least I knew what it was finally.
After getting the info off your sight, I stopped the Benadryl, because the body raises in bed did not start until I was taking large doses of Benadryl. I have been stopped the Benadryl a week, but still have the electrical shocks and biting, stinging sensation through my body. Now that the rash is going away, I still itch frantically on the skin that has healed. I now remember, that for years, I have asked my husband to scratch my back, arms, legs, stomach, and buttocks due to itching for years. I have a stressful job, and I thought it was all in my head. The chiropractor stated that he felt that I may also have Fibromyalgia.
I am 50 years old. I do not do well on drugs. The other night when I was up all night itching and "pinging" my husband gave me one of his Flexeril tablets (a muscle relaxant). I took it at 5 AM on Sunday morning, and slept all day, and had the hangover feeling and sleepy until 8 PM Monday night. Serious drugs are out for me because of my non-tolerant condition.
I have upped my intake of calcium magnesium, take B-complex, B-1, and potassium. I am going out today to get folic acid. Hopefully this will help as I detox off the Benadryl. I also notice that certain foods cause the itching to worsen like fried greasy foods, meats, caffeine and spicy foods. I noticed that all my symptoms were worse at night when laying down or if I rested quietly during the day cross stitching an sitting still. I now have this condition of itching, biting, etc during the day. I took my shoe off at work and yelled in pain as if some ants were biting me all over the foot. Then I laughed, it was this old condition attacking me during the day. Will keep you posted on the foods that aggravate the condition. I have started to eat more vegetarian which has been helpful.
Thank you for your web sight. I do not feel so alone. My husband is very supportive. It is very hard to work during the day. My e-mail address is firstname.lastname@example.org if any one would like to respond back to me. I especially would like to know if any of you have experienced a rash with the RLS. Perhaps this was an allergic reaction to medications, I do know that I itched so badly, I would scratch until I bled, it felt I was itching down to the bones of my body. I will pray for all of us with this terrible condition that we have the strength to carry on and that more and more research will be done to help us. I am interested in a support group, but there is none listed for Mississippi. I need one in the Gulfport, Biloxi, Ocean Springs, MS area.
Again, thank you for the web site.
Judi in Biloxi, MS
You may want to consider stopping all your vitamins for a while to see if any of them are causing your problems. There is no RLS support group in your area, but we will post your letter and if enough people answer your email, maybe you could get one started in Mississippi.
Date: Saturday, July 18, 1998 11:29 AM
Subject: Low Ferritin Levels
I'm a 57 year male in good health and have had RLS for about 10 years. I'm presently taking Mirapex, .25 mg in early eve and .25 before bedtime which usually offers significant but not complete relief.
I've read the articles about low ferritin as possibly implicated in RLS and recently had mine checked--it was 64 mcg/l which I understand is marginally low. I then was tested for iron and was 53 ug/dl (45 -160 normal), iron binding capacity (normal), unsaturated iron binding capacity (normal) and % saturation iron--17.5 % (normal being 20 % to 50 %). Also my folate and B12 levels tested above normal. I've recently started supplementing with both.
About a year ago in a routine physical I had the following measurements:
white blood cell count--4360
red blood cell count--4.66
hemoglobin--14.2 (14 - 18 normal)
hematocrit--41.4 (40 - 52 normal)
The only possible reason I know of for the low numbers is the fact that I exercise intensively, sometimes to the point of exhaustion.
Do you think a trial of iron supplementation is warranted and if so, what form? I'm aware of the dangers of iron overload but would be thrilled if it turned out that low iron was a contributor to my RLS. By the way, I take a fairly aggressive regimen of vitamins and anti oxidants.
Thank you so much for this wonderful opportunity to consult with you!
It has been known for several years that a low serum ferritin (generally lower than 45-50 mcg/l) may have an increased incidence of RLS. We still do not know the reason for this, although it has been speculated that iron is important in the production and release of dopamine. Many anemic patients with low serum iron and ferritin levels do not have RLS and many RLS sufferers do not have low levels. It is still quite perplexing as to why this relationship occurs in such a haphazard fashion.
A recent article in the journal Sleep reviewed the issue of serum ferritin and RLS and confirmed the higher incidence of RLS with low serum ferritin levels even when serum iron levels are normal. Whether treating these patients with iron therapy will benefit their RLS is not yet known. It seems that some may benefit, but many do not benefit. When the serum ferritin levels are greater than 50 mcg/l, then the chances of improving the RLS becomes significantly decreased.
If you wish to try iron therapy, you can get ferrous sulfate or ferrous gluconate (better tolerated as far as your stomach is concerned) at a dose of about 300 mg (5 grain using the old terminology) one to three times per day. The iron is better absorbed from the stomach if taken 1 hour before meals, but this increases the chances of stomach upset. Beware that iron will turn the stools dark and can cause constipation (we recommend Metamucil to combat this in a natural fashion).
Your exercise levels, whether mild or severe, should have no effect on your blood count numbers.
Date: Sunday, July 19, 1998 9:09 AM
Since Sinemet seems to be getting less effective, my doctor has put me on Temazepam. So far it has done NO GOOD at all. Why did she try this medication? Any ideas? I can't find it listed in your medication section.
Temazepam known by its trade name Restoril is listed in our sedative section. The only problem with Restoril is that it works much better to sustain sleep, rather than initiating sleep, as it has a slow onset of over 45 minutes. Your doctor may have added that drug to help you sleep through the night if the Sinemet is not sufficient. You do not want to get to high doses of Sinemet, as augmentation and rebound become very common (see our RLS Treatment Page).
If you are developing problems with proper control with Sinemet, an additional thought would be to change the Sinemet to Mirapex or Permax. These generally work better with less significant side effects. See our RLS Treatment Page to see how to change over.
Date: Sunday, July 19, 1998 8:17 PM
Subject: RLS and medications
What medications are known or suspected to cause or contribute to RLS?
The medications to avoid are the antidepressants, antinauseants, antipsychotics, and caffeine containing drugs or food. For much more detailed information and lists of individual medications to avoid go to our RLS Treatment Page, in the section discussing which drugs to avoid.
Date: Monday, July 20, 1998 9:15 PM
Subject: New Med? Ultrumin
I have RLS and take Klonopin, which doesn't help much....but I do get at least 5 or if lucky, 6 hours sleep before having to get up and do the "exercise routine".
Wonder if anyone has heard of Ultrumin, which was prescribed just last week for a friend with RLS. He hasn't had time to see if it works yet, but wondered about the drug. Anyone familiar with it?
Klonopin is generally helpful for RLS, but it does have a long half life often causing significant daytime sleepiness in many patients. We strongly suggest that you take regular drug holidays from any sedative drug. With Klonopin, the drug holiday should be at least 5-7 days every 2 weeks, instead of only 2 days of drug holiday every 2 weeks with a shorter acting drug such as Xanax.
Ultram (Tramodol) is a synthetic pain killer which is not chemically related to the narcotics. It often works quite well for RLS, but it does have an addictive potential, just like the narcotics. Generally, we like to try the Parkinson's disease drugs before going to the pain killers to treat RLS. Check out our RLS Treatment Page for more complete details about Ultram and RLS.
A Reply from B.J.
Date: Thursday, July 23, 1998 7:17 PM
Subject: Re: New Med? Ultram is Correct!
You are absolutely correct that my friend in Hawaii meant Ultram!! Just chatted with him tonight on icq. He has been on it for several days and I have one more correction to make! I had said that his RLS had been absent for 2 years and therefore there was hope for us!! Well, guess what? Tonight he asked me if I knew if Ultram could possibly cause RLS as he now has it again!! Is that a terrible coincidence or what?!
I told him I would check with you knowledgeable people and get back to him. BTW...he has painful Peripheral Neuropathy, for which Ultram was prescribed. Thank you for your correct clarification. Do you have any thoughts on his RLS returning? What a super site this is!
"Thanks" to everyone in it!
RLS can be a very "funny" disease with waxing and waning symptoms. It may get better for a short or long (years as in your friend's case) then come back with a vengeance for no apparent good reason or cause. Hopefully, one day we will find out why.
Date: Tuesday, July 21, 1998 12:20 PM
Subject: RLS, PLMD or ?
Well, I really appreciate your prompt responses and am feeling that maybe I should ask a doctor that is familiar with narcolepsy but being you are a sleep doc. and I know no where else to turn, I'm asking you.
I decided to take myself off my RLS medications since my problem was getting so much worse than ever before. Sinemet, and later Mirapex didn't seem to be helping. I've spent the past 3 days completely symptom free from painful legs. The only medicine I have continued to take is Zoloft 100 mg. Years ago when I went to have a sleep study done because of daytime sleepiness & exhaustion that is when I was diagnosed with PLMD. I shake my legs and do feel something in them that is not comfortable but have never had the pain I have recently experienced. When I learned about augmentation and rebound, that is when I decided no medications for a while may help. And it did. So far.
Anyway, my doctor tried me on sleeping pills, but you know, I've always slept a lot and daytime naps are my survival. No more of those. The theory was that PLMD is causing me not to sleep soundly enough to be refreshed in the morning. I have always been able to drink 4-5 cups of coffee and go back to sleep very soon. I consistently go to bed at 11:30 p.m. and wake up at 6:30 a.m. with no problems but within a couple of hours I'm fighting off sleeping again, and usually sleep 2-3 hours each afternoon as soon as I can find a bed.
My mother was prescribed Ritalin 12 years ago for excessive daytime sleepiness and to this day takes no more that 10-20 mg. daily and says at least now, even though she isn't any 'ball of fire' she can cope with fairly normal activities. I have given up many activities and can generally work 25 hours a week but it takes me four days of exhaustion and inactivity to catch up for the next week. My problem is more excessive sleepiness than it has ever been leg problems. I'm still too exhausted to live much of a life. My husband, my kids & me, of course are so frustrated. I tested neg. for narcolepsy but I relate to their sleepiness extremely well. Too bad that they do not have as great a support group to write into as this one.
P.S. My family thinks that I should be given a try with Ritalin at small doses since treating PLMD has not even come close to relieving the tiredness. Have you ever heard of this type of problem before with any of your PLMD patients? Could there be a possibility that I have both Restless Leg and Narcolepsy? I've already had one sleep study and have no insurance in order to have another one. I'm trying to discuss this with my neurologist but I think he hesitates to try me on Ritalin because the blood test came back negative. I just need some relief sometime soon. I'm getting so discouraged.
Thank You for your listening ear!
Tell your neurologist to forget about using the blood tests (I assume this was genetic typing for the DR2 type - although there are other subtypes which are more important now, but still not conclusive) as confirmation of you having or not having Narcolepsy. Most sleep specialists have known for quite a while (and confirmed in a study in last month's SLEEP journal), that 20% or more of narcoleptics may not have the "correct" genetic typing, especially when cataplexy is not present. There is also a similar related condition called Idiopathic CNS Hypersomnia which may have an even lower positive genetic typing, but still cause severe daytime sleepiness and need stimulant therapy.
Narcolepsy and RLS can coexist, and in fact I have several patients with both problems together. The problem is that without the presence of cataplexy (muscle weakness with stressful emotions that can cause drop attacks, it is difficult to make the diagnosis of narcolepsy. Without a definitive diagnosis of narcolepsy, it would be difficult for any physician to dispense Ritalin or any other stimulant (especially as these are Triplicate controlled drugs). You would need a sleep study followed the next day by and MSLT (5 nap studies at 2 hour intervals) in order to make the diagnosis of narcolepsy or Idiopathic CNS Hypersomnia.
Sorry, I see no way out for you to get help until you can do the proper testing.
Date: Tuesday, July 21, 1998 4:20 AM
Subject: A different drug
I have a severe case of RLS and PLMD, I have it in my legs, arms, shoulders, & hands and I don't have a creepy feeling at all. I have a very severe "pulling" it feels as if I am being pulled apart on a torture device or something, and also a bad aching. I have been on everything that you have mentioned and what seems to have been working the best is Neurontin, Ultram, Ambien and Tylox (Oxycodone 5/500).
I recently went to a pain center where they did a strange test. They gave me different medicine through a IV to see which would help me, and one of the medicines was Lidocaine which took all the pain away, it was the first time I have been without pain in so long I cried. So they put me on a pill form of Lidocaine which is called "Mexiletine", have you ever heard of this?? It hasn't helped at all which I don't understand because the IV form helped me so much. Do you have any idea about this medication and how it works? I also heard that it is dangerous medicine, something to do with the heart?
Any info would be appreciated.
Mexiletine is a heart medication that stabilizes abnormal heart rhythms (arrhythmia). It is chemically similar (but different than) Lidocaine. Both drugs are local anesthetics and can be used for heart rhythm stabilization. Lidocaine does not work orally, but is a very good local anesthetic.
I have never heard of using Mexiletine for any indication other treating cardiac arrhythmia. I am not aware (but then I do not know everything) of its use in treating pain syndromes. I would not have thought that it would be successful in your case, but one never know.
Most of the serious side effects occur in heart patients with serious arrhythmia. If the drug is not working, I would think very strongly about not continuing on it, but please discuss that with your own doctor.
Date: Tuesday, July 21, 1998 9:07 PM
Subject: restless leg syndrome
I suspect I have a mild case of RLS. I have always had episodes, sometimes after long strenuous exercise, of discomfort which I described as having "antsy" legs. The relationship to exercise has made me suspect it might have something to do with dehydration.
Several years ago I also had problems with ophthalmic migraines. These are like the first part of a normal migraine--visual aura, queasiness, mental fuzziness--without, thankfully, the severe headache. I began to have these almost daily and they were exhausting. They have cleared up for me with a combination of taking anti-depressants to improve my sleep pattern, quitting caffeine, and trying to hydrate better.
My restless legs seem to bother me more frequently now, but still not to the extent that others seem to suffer. I am mostly uncomfortable when I'm with my boyfriend, because that is almost the only time I really sit still. I don't feel like I have to get up and walk, I just feel like I have to move my legs continuously. If I don't move them for awhile, they will suddenly jump involuntarily. My boyfriend is also kept awake sometimes by my legs moving during the night. I am not aware of moving my legs.
After reading some of this web page, I wonder how all these things relate: dehydration, anti-depressants, sleep disorder, migraines, etc.
Diane Smith, San Diego
The symptoms that you have described are classic for RLS. Strenuous exercise will trigger RLS, whereas mild to moderate exercise may help prevent the RLS symptoms. Antidepressants can have a variable effect, worsening RLS in some and helping others (very difficult to understand). Your leg kicks during the night are typical of PLMD. As long as your symptoms are mild, you need no other therapy.
Date: Wednesday, July 22, 1998 7:28 PM
Subject: Drug holiday
I wondered when I should consider a drug holiday from Sinemet. Should I wait until it completely stops working, or do it before real trouble begins? (I have been on 2-CR 25/100 nightly, for 3 years-lots of daytime rebounding but good nighttime sleep with one "break").
Also, I thought I would prefer to use something like Tylenol #3 to get me through, rather than just toughing it out. Would that be a plausible request to my doctor? Is two days long enough to do the job?
Thank you for any information you can give me to share with my doctor.
Generally, no drug holiday is needed from Sinemet, unless tolerance occurs (this is when you need higher doses with time to get the same effect), which is less common with this drug. If you are indeed getting daytime rebound problems (which is very unusual at your dose of Sinemet), then you should consider a change to Mirapex or Permax.
If tolerance does develop to Sinemet, then a drug holiday of 2 to 3 days should suffice. Tylenol #3 would then be a good choice to get you through the drug holiday period.
Date: Thursday, July 23, 1998 5:26 PM
Subject: Is Xanax really safe?
I am 40 years old and have had RLS for several years now. I thought that I would just have to live with the many nights of not getting any rest until about one year ago my doctor finally prescribed Xanax (1 mg dose). I take one pill daily about 30 minutes before bedtime and 99% of the time, I am usually soon asleep with no RLS symptoms. It is so wonderful that this drug actually works.
I am concerned, however, that over time this drug may lose its effectiveness which I don't want to happen. Also, are there chances that I will become addicted to Xanax and require higher doses to achieve the same results as I am currently having? Your input or suggestions would be greatly appreciated.
Xanax is a good choice for treating your bedtime RLS. You are lucky not to have become tolerant of your regular dose after one year. Some people do not ever become tolerant to Xanax, but most will, sooner or later.
There are ways of ensuring the continuing success of your current Xanax dose. Take a regular drug holiday of at least 2 days (most use the weekends - Friday & Saturday - as weekends are when most or us can can get buy without the proper amount of sleep) every 2 weeks. You may be able to use a codeine preparation or Vicodin on those drug holiday nights to dampen the RLS symptoms. These regular drug holidays (which can be painful to take) will almost always insure that the drug will maintain it's potency and work well for you.
The other thought is to consider decreasing the dose of Xanax. At 1 mg, Xanax is getting on the high end of dosage for this drug. You may find that 0.5 mg (or even 0.25 mg) works just as well, and will also decrease the potential of dependence or tolerance developing.
Date: Friday, July 24, 1998 9:15 AM
Subject: Restless Legs Syndrome Meds
As an over 40 year sufferer of RLS, I am quite "tired" of living with this syndrome. Three years ago I started to take Sinemet 25/100, three times a day. It worked quite well until about a year ago. Not knowing what "augmentation" was, I didn't mention it to my doctor for 6 to 8 months. When I finally did ask if I could take a larger dosage of Sinemet, he said to take 1/2 extra pill at nighttime. What I found out was, no matter how much Sinemet you take, it only lasts 4 hours at the most.
My doctor has now prescribed Permax. I started out taking .05 mg, anyway, the lowest dosage, twice a day. Weeks later, I am taking .35 Permax twice a day. I still have restless legs, but the side effect of the Permax that I am experiencing is SEVERE, OVERWHELMING WEAKNESS AND FATIGUE!!!
I am also taking Xanax to sleep at night. The Xanax is a life saver. I was only sleeping about 4 hours, and now can get at least 7 hours of good sleep. I took one night "drug holiday" from the Xanax after being on it for 3 weeks. I didn't get much sleep at all. Finally dropped off around 3:30 AM!!!! Bummer!!
My doctor is overworked and so it is very difficult to get through to HIM. I thought maybe I could get some suggestions from you as to maybe getting off the Permax and onto something else; such as, Ultram, Klonopin, or Neurontin. Also would like to know if I could go back onto the Sinemet after a period of time. Would it work then or is augmentation forever?
Thanks for listening,
I would not start the Sinemet again, as you will likely get the augmentation back. This generally occurs at doses of more than 2-3 of the 25/100 tablets. You are on a high dose of Permax for an RLS patient (not high for a Parkinson's disease patient). Mirapex or Requip may or may not work better than Permax (they are similar in action to Permax).
Klonopin is similar to Xanax, and usually results in daytime sleepiness. Ultram may be a good addition instead of the Parkinson's disease medications if my other suggestions do not pan out. Neurontin is a reasonable possibility, but it works on less patients than the above medications.
A Reply from Carol J.
Date: Saturday, July 25, 1998 12:32 PM
Subject: Restless Legs Syndrome & Meds
I am now taking .40 Permax twice a day and the side effect is OVERWHELMING WEAKNESS & DROWSINESS. The restless legs symptoms are still there. I'm increasing the dosage by .05 every 3 or 4 days. Still no relief.
Drowsiness is a known side effect of Permax, but it only occurs in a few percent of patients taking the drug for RLS. You may not get the drowsiness with the other similar Parkinson's medications, Mirapex or Requip, so they may be worth a try. You may want to go more slowly on any of the above drugs (increase the dose only every 5-8 days), which will give your body a better chance to adapt to the pills and likely decrease the degree of unwanted side effects.
Date: Friday, July 24, 1998 1:41 PM
Subject: Message from Leon K.
Here is a short update and a request for some guidance:
I am currently on Ultram (50mg three times daily) and am doing very well and am sleeping better than I have for as long as I can remember. As you had suggested, I take a drug holiday every three weeks for 48 hours. I experience considerable difficulty during the drug holiday starting about 12 hours after my last dose of Ultram. I have quite severe pains in my legs and also experience the very unpleasant "withdrawal" symptoms, which I am sure you know.
I have taken codeine to help me through the drug holiday but I have used it very sparingly (only two tablets during the entire drug holiday) as I am concerned that the codeine may act on the same receptors as Ultram, and I do not want to reduce the efficacy of the drug holiday.
I saw a number of references to Mirapex in the latest issue of the "Nightwalkers" and wondered whether this may be effective as a substitute for the Ultram during the drug holiday. What do you think of Mirapex as a substitute or can you recommend anything else that may be effective.
Again, my thanks for your assistance,
Mirapex has gotten some recent good reviews. This is based on a recent (June) article in the Mayo Clinic Proceedings in which Mirapex was shown to work very well with fewer side effects than Permax. You have tried Permax, which worked but caused significant side effects (?). Mirapex (and possibly the even newer Requip) is similar to Permax, but may work even better with less side effects. It is worth a try, but check out our RLS Treatment Page to see how to use it.
If the Mirapex is not helpful or cannot be tolerated, then you may want to consider using a narcotic for the drug holidays from Ultram. It is clearly not theoretically as ideal as a "pure" drug holiday, but I have many patients who are doing this and have done well without tolerance problems.
Date: Sunday, July 26, 1998 4:03 PM
Subject: symptoms and treatment
Hello, just thought I'd drop a line to tell my story. I first read about RLS a couple years ago, and what a relief to know I'm not crazy. I get the feeling that my symptoms are not as severe as many others, but I have found my symptoms have been creeping (so to speak) up a lot more often recently.
I used to connect the twitchy legs with being really tired, so on the few occasions it would happen, I'd just go to bed and eventually I'd be able to get to sleep. Now, it's a nightly occurrence. My friends are getting used to my pacing. I've had this as long as I can remember. In fact, I remember once in elementary school I asked my friends, "Hey, you know that twitching feeling you get in your legs when you get tired?" assuming they'd all know what I was talking about. But they thought I was nuts.
So now I'm 22 years old, and I'm hoping the symptoms don't continue to get worse. I haven't talked to a doctor about it, but I'm on a shoestring budget and it feels like finding doctors who know about it is kind of hit-or-miss anyway.
The unfortunate news is that RLS generally (but not always) gets worse as you get older. It starts to become more prominent after age 40-50 and can become quite severe after age 60-70. There are of course many exceptions to this, and the course can be quite variable. Sometimes the RLS may even go away for years and come back for no apparent good reason.
It sounds as if your RLS is still relatively mild. You can read our letters from RLS patients to get hints of what to do on your own without costing you any money. If your RLS does become worse, you should see a sleep/RLS specialist.
Date: Wednesday, July 29, 1998 3:21 PM
I experience what I think is restless leg syndrome, mostly when I am taking a long car ride or especially when I am on an airplane. Since I travel 13 and 14 hours flights quite often, my legs have "no where to go" and the flight attendants must wonder who that lady is with her legs straight in the air.
There is really nothing to relieve this, but I don't experience it very often when I go to bed because I take Xanax. I would be grateful for any tips for relief during the daytime hours.
There may be a few easy ways to resolve your problem with travel. You could take a Xanax and sleep a good part of your trip away (that is if you do not have to do work while on the trip). Working on a computer (especially games) seems to quiet those restless legs in many.
You might also try a Tylenol with codeine or a Vicodin tablet, which may give you 4-6 hours of relief. Parkinson's disease medication such as Permax or Mirapex might also be of benefit without drowsiness (in most).
Date: Wednesday, July 29, 1998 3:28 PM
Subject: Message from Leon K.
After thinking about our recent exchange of e-mails I am not sure that I accurately described the help that I am looking for during the drug holiday which I take every three weeks from Ultram. The main difficulty that I experience is the anxiety and nausea which I associate with the withdrawal from Ultram. The pain I experience is not bad and certainly tolerable.
You had indicated that I could take Mirapex in place of the Ultram but I wonder if there is anything else that could help with the withdrawal symptoms I experience.
Thank you again,
The anxiety and nausea maybe due to withdrawal of the Ultram, although with the regular drug holidays, one would think that you would not get withdrawal problems. The Mirapex would only help the return of any RLS symptoms while off of the Ultram.
Codeine (or others such as Vicodin) are used by some of my patients who cannot tolerate the drug holiday from Ultram. So far I have not seen any problems with tolerance or addiction. I even have patients alternating 3-4 days each week on Ultram then on another narcotic continuously. This may be another option for you which would eliminate your withdrawal complaints. You could still try a drug holiday from both every few weeks.
We do not really know the receptors that Ultram binds to, or if they are the same or quite different than the narcotics, so the concern about cross addiction is very theoretical.
A Reply from Leon K.
Date: Friday, July 31, 1998 9:44 PM
Subject: Reply from Leon K. 7/31/98
Thanks again for the prompt response. I was very interested in your comments about cross addiction. I have been doing so well on the Ultram that I am somewhat reluctant to change the current cycle by introducing another narcotic. Intuitively I have been reluctant to take anything which might in some way influence the opiate (?) receptors as I understand that Ultram works on the same receptors as codeine.
In the last analysis I think I am prepared to go through a couple of rough days and nights every three weeks in exchange for the joy of the intervening sleep-filled nights. Perhaps one of life's trade offs. Worth a try anyway!!
Again my thanks,
I can understand your desire to leave well enough alone. I have seen medication experiments that have gone awry. Ultram is not a narcotic (it is a synthetic chemical not even similar to the narcotics) and we really do not know if it works on the narcotic receptors at all.
One other idea to try to decrease the withdrawal symptoms from Ultram, might be to take the 2 day drug holidays more often, such as every 10-14 days. You may then have a trade off between increased episodes RLS symptoms (while on the drug holidays) with decreased withdrawal symptoms. Mirapex might then be helpful to control the increased RLS symptoms.
There is no absolute right or wrong way to treat RLS. Sometimes educated trial and error is needed to find the best individual therapy for your RLS.
Another Reply from Leon K.
Date: Saturday, August 01, 1998 3:41 PM
Subject: Re: Reply from Leon K. 8/1/98
Thanks again for the e-mail, which I had not expected. I like your suggested approach very much. I'll discuss it with my doctor and let you know how it goes. Before my final "over and out", do you have a preference for Requip vs. Mirapex?
I have quite a bit of experience with Mirapex (as it has been available longer than Requip) and have found it to work quite well (possibly even better than Permax, as it seems to have somewhat less side effects). Mirapex has also been just reported in the journal SLEEP to work well in RLS at fairly low doses.
Requip may be just as good, but it has been used much less, and is just in the process of being studied for its efficacy in RLS. I have had fairly good success with this medication (mostly in patients who are intolerant of both Permax and Mirapex). It is quite likely that with all these RLS medications, the response will be very individual with some patients doing better with one drug or another and no drug will be proven to be the best for everyone.
Date: Thursday, July 30, 1998 8:33 AM
How much a relief to find your web site and information on this thing that I thought I was alone with. I have had the symptoms for years. And now that I am on Prozac for depression it is even worse.
I don't want anything addictive. My doctor recommended Symmetrel but I can't find any info on this drug...any help would be great.
Symmetrel (amantadine hydrochloride) is a drug used for prophylaxis (prevention) of Influenza A viral infections and for treating Parkinson's disease. Its mechanism in treating Parkinson's disease is not well understood, but it does increase dopamine levels in the brain. It is theoretically in the class of medications that should help RLS, but I have never heard of it being used for RLS.
There are many other good Parkinson's disease medications that help RLS. Your doctor may have meant to tell you Sinemet, which is used a lot for RLS. We prefer not to use Sinemet, but rather Mirapex or Permax (other Parkinson's disease medications), which tends to work better.
Date: Friday, July 31, 1998 10:34 AM
Subject: restless legs
I wrote to you about four months ago about RLS and a treatment that I was just beginning to try. I am 52 years old and have had this almost all my life, the whole bit---at first it was only my legs, then my arms became involved, and the movement during sleep. There is the sensation of crawling things under the skin and also the NEED to move even though my eyes or head is so sleepy, but having the arms become involved is worse!
The only thing I could do was sling them back and forth. At first, aspirin helped. Then Flexeril, then narcotics, but everything eventually either stopped working or made it worse. Then four months ago I began taking Melatonin; at first I took one 300 mg, now I only take one-half of a pill 150 mg. IT WORKS, at least for me !!
Now I only rarely have the problem instead of every night. I don't see it mentioned much by people in your letters and hope you will pass it on, maybe it will help a few sufferers, and I don't have any side effects from this amount. Thanks for the web site, I know I not crazy or alone now!
We have had a few RLS sufferers tell us that Melatonin helps. Anything that puts you to sleep (which includes Melatonin) will take care of the nighttime RLS. Melatonin is only a mild sleep aid in most, but in your case (and some others) it may work well enough to do the job for RLS.
Date: Saturday, August 01, 1998 3:43 AM
Subject: I Need Help!
I have a severe case of RLS along with mild sleep apnea, post traumatic stress syndrome, chronic pain due to severe back and foot injuries, moderate to severe claustrophobia and severe panic attacks. I am a 51 year old male and have been under treatment and evaluation at the Providence Sleep Disorder Center since 1991 with very little help being given. The only relief I get from my continuous nights of terror is by taking Vicodin. However, my doctor is paranoid about prescribing more than 5 to 10mg. per night. The only doses that really work for me are in the 20 to 40mg range. I have been given trial doses of many other medications and the side effects have been extremely undesirable.
The pharmaceutical company pharmacists and the School of Pharmacy at the U of W agree that the up to 40mg dose of Vicodin given the severity of my condition would be within reason...but my doctors will not listen.
I am happily married and the father of 4 great kids. Up to now I have been very successful in my professional career but I am reaching the end of my rope. I am only getting 1 - 2 hours of sleep in a two to three day period, I am beginning to hallucinate while awake and I am rapidly becoming disabled (unable to function).
I am willing to travel to any Regional (recognized) Medical Centers' Sleep Disorder Unit for evaluation and treatment, as long as the doctors are willing to be aggressive and not skittish in their evaluation and treatment. I am covered by an excellent medical insurance plan. At this point I am feeling very desperate and need help before I lose everything I love in this life. I am to the point of depurate measures including illicit means if necessary in order to survive but if I don't get help soon I am not sure how long I can continue.
I am sorry to be rambling in this e-mail to whomever you are but I need someone to give me some advice. Thanks for taking the time to read this. I will look forward to your reply.
Dependant on the nature of your reply, I will give you identifying information. I am sure you understand that extreme confidentiality is warranted. I need help, not interdiction. I am willing, however, to be a case study if requested to do so. I will contact you if you provide information that allows me to do so.
You do not need a sleep center for a sleep study if your problem is RLS. If RLS is your main problem, the diagnosis is made by your clinical history, and a sleep study is not helpful (except to diagnose PLMD arousals, if that is a concern).
If RLS is the main problem that keeps you up at night (as opposed to your other conditions), then treatment with even high doses of narcotics can be reasonable. That is done only after attempts at getting control of your RLS symptoms has failed with the other known treatments for RLS (sedatives, Parkinson's disease medications, Neurontin, etc.). I do have patients on high doses of very potent narcotics (methadone, morphine, Percodan, etc.), but these are only a few very tough cases that have not responded to the more conventional therapies.
What you need to find is a doctor well versed and comfortable treating RLS, who can prescribe any medications (at whatever appropriate dose) you need with confidence. Also, make sure that you take regular drug holidays (2 days off every 2 weeks) or you may become tolerant and addicted to the drugs.
To find the accredited sleep centers, check with the
American Sleep Disorders Association (ASDA)
This is the professional society of sleep specialists and sleep centers. You can check out their web site homepage or if you wish to find a sleep professional/center in your area, go directly to their state by state listing of accredited sleep centers.
A Reply from Bill
Date: Saturday, August 01, 1998 11:31 AM Subject:
Re: I Need Help!
Thanks for the quick response! It is my true belief that the RLS is the cause of most of my other conditions. The difficulty is finding the physician you speak of.
Thanks again for the information.
Date: Saturday, August 01, 1998 8:35 PM
I am a 56 year old female who has suffered from "twitchy legs" for years without realizing that it was a recognized medical condition that could be treated. My mother tells me that my father also suffered from this condition. I experience RLS only when I am relaxed in the evening or trying to sleep. It feels as if there are worms crawling under the skin. It also alternates legs, one night one leg will be affected and the next night the other. I don't have any pain or cramping, just the twitching sensations that make it impossible to relax or keep the leg still for any length of time.
Now that I know about this website, I can consult with my family doctor to see what medications she might suggest. I prefer to try less potent treatments first, such as vitamin/mineral supplements as listed on the web page. I already take a multivitamin with folic acid as well as a calcium supplement as a preventive measure to osteoporosis. The letters on the site really registered with me, since so many of the symptoms described so clearly reflect my own experience with RLS. The best thing is to know that there are treatments available. I will keep you informed as to my doctor's response and recommendations.
I am glad that we could help you with our web site. Let us know how you do. Even if you have to resort to medication, if you follow the conservative guidelines on our RLS Treatment Page, you should not have much if any trouble.
Date: Wednesday, August 12, 1998 7:38 PM Subject:
Re: Pregnancy and RLS
I never had RLS until my first pregnancy 4 years ago. My sleep problems began a few months into the pregnancy and lasted until about the 8th month. It was quite severe but by taking about 2 warm/hot bath a night I was able to get some sleep, keep working, etc. Between pregnancies I was pretty much RLS free but I had some trouble getting to sleep almost like I'd forgotten how to fall asleep.
As soon as I got pregnant again (last summer) I started having sleep difficulties. It wasn't "true" RLS at first but the typical RLS symptoms increased as time went on. Half way into the pregnancy in about October it was very severe and I was desperate. I was unable to sleep hardly at all until about 5am. I got 2-4 hrs per night. Amazingly I functioned very well during the day!!
Finally I got an appt with Dr. Richard Allen at Johns Hopkins in Dec and as a result I began taking Darvocet. The medicine helped but my sleep was still very disturbed until my son was born in March. My symptoms went away immediately after his birth. A few months later I started having some mild RLS symptoms off and on but it's nothing compared to what I had during the pregnancy.
My questions are these. We really want one more baby but I am afraid of the possibility of the RLS not going away after the pregnancy. I know it will be bad during another pregnancy (even worse??) but I am more concerned about it continuing after giving birth. What do you think? I am also concerned that the 9 months of severe sleep deprivation could lead to other health problems (Fibromyalgia or something else).
I have just developed Rheumatoid Arthritis and have a chronic cough of unknown cause (for 9 months!) so I know not to take my health for granted any more. My other question is do you think (even if I don't get pregnant again) that I will have more RLS problems later in life (like after menopause)?
If you have time and have any thoughts on my situation, I'd really appreciate your
At least half the women who have RLS will get worse with pregnancy. This is a very common phenomenon. There is treatment for it during pregnancy. Sedative drugs (such as Xanax) are very helpful, if your obstetrician approves. Magnesium may also be helpful (see our web site RLS Treatment Page for more info).
You should not worry that getting pregnant and thus increasing your RLS symptoms will cause it to continue after the birth of your child. That is possible, but generally does not happen. The 9 months of possible sleep deprivation should not lead to other diseases.
Menopause does not worsen RLS (there may be a few exceptions to this rule), but RLS will usually worsen with age (especially over 50-60 years old).
Date: Wednesday, August 26, 1998 7:47 PM
Subject: Narcotics to control RLS
I currently take 5 mg of Lorcet each night for RLS. I am extremely concerned about building up a tolerance or becoming physically dependant. How often should I take a drug holiday when using a daily dose of Lorcet 5 mg. I do not take anything during the day except Tylenol or aspirin. I do take Lorcet for migraine headache. This is one of the reasons I have such concern of tolerance.
Thanks for any information you may have on drug holidays from narcotics.
As far as drug holidays go, you should take 2 days (Friday and Saturday night are best) off every 2 weeks. The other issue is that you may not need the Lorcet if other medications such as Permax or Mirapex can help you.
If you cannot tolerate the Lorcet drug holidays, then Ultram may be a good choice for your drug holidays. It is similar in effect but somewhat different than the narcotic medication. We are not sure whether cross addiction and tolerance with the narcotics may still occur with Ultram.
Date: Thursday, August 27, 1998 11:45 AM
Subject: blood pressure and RLS
I have just found your excellent web site, and want to thank you for providing a forum for people with this poorly understood condition. Are you aware of any connection between low blood pressure and RLS? I have had mild to severe RLS symptoms since I was a teenager, and my blood pressure has always been on the low end of normal (usually around 90/60).
My symptoms are generally worse when my blood pressure is lower (i.e. when I exercise regularly or when I was pregnant). This correlation seems to hold for my mother as well, who also has RLS and low blood pressure. Many of the home remedies mentioned on your site (wearing supportive stockings, elevating the legs, walking etc.) are at least superficially consistent with poor circulation being a contributing factor to this condition. However, the observation that hypertension medication can relieve RLS would argue against this connection. Any thoughts on this possibility?
I have tried many of the 'alternative' treatments recommended here in an attempt to avoid chronic drug treatment. One that seems to work for me, at least some of the time, has not been mentioned. Potassium supplements or foods with high potassium content (kiwi fruit, bananas, Gatorade) right before bedtime usually give me some relief. This effect seems to be augmented by combination of potassium with calcium/magnesium supplements and/or non-prescription pain medication (e.g. ibuprofen).
Given basic physiology, one could come up with any number of speculations as to why potassium might work to relieve RLS. Then again, this may be hooey (or placebo...). I am a research scientist, and well aware of the requirements for double-blind, replicated studies to prove the effectiveness of any treatment. Moreover, (as you have pointed out) RLS is quite likely to be a complex condition with numerous potential causes--suggesting that no ONE treatment will help everyone. However, this has been a fairly innocuous way of controlling my symptoms, and it may be worth a try for some of your readers.
Thank you for your very supportive web-site.
There is no known link between low blood pressure and RLS. As you have already pointed out, blood pressure lowering medications may even help RLS (who knows why???). The link with pregnancy and RLS is very well known and extremely common (check out the RLS Treatment Page for more on this). Mild exercise will often help RLS, but hard exercise usually makes it worse and exercise generally makes the blood pressure go up (that is during and immediately after the exercise).
Several RLS sufferers have thought that potassium supplementation may be helpful in treating RLS, but that does not seem to have panned out. You are very right that before we accept any treatment for RLS, proper medical studies need to be performed.
Do not be afraid of medication treatment (that is if all else fails), as in the proper hands, it generally relieves virtually all the RLS symptoms with almost no side effects.
Date: Monday, September 07, 1998 10:31 AM
Subject: Mono and Diglycerides as a Factor
I am 29 years old. I have RLS and my mother and brothers do too. I have just noticed it in my four year old after watching her all night. RLS became more pronounced in my life after pregnancy and breast feeding. I am currently uninsured so you can see that I have no alternative than to treat or prevent my symptoms with diet and vitamin supplements. Everyday for the last 3 years I have woken up to RLS, eaten it for breakfast, lunch and dinner. One month ago it started in my arms. Fortunately, I am so darn exhausted by the time 9:00 P.M. comes along, I just deal with the movements and fall asleep.
But......today for the first time in 3 years I have experienced calming in my muscles and my symptoms are controllable. Over the last few weeks I have read a lot about this condition. I came across a bulletin board (Excite!) where others just like me have posted notes. One note pointed out the consumption of mono and diglycerides as a trigger. Well, I was not happy to learn that these molecules are present in ice cream, frozen foods, cake mixes, Shedd's Spread (margarine alike), and many other food stuffs. It is added as an emulsifier.
I am (was) an ice cream fanatic. I mean, who doesn't like ice cream. I am now reading labels to find those "suckers" in all that I eat. I feel better than I have in the past 3 years. My tremors, twitches, ripples, jerks, etc have nearly come to a halt. I figure I have a build up of these substances so I am sure it will only take a little more time. But, 1 week without them and it has made all the difference in the world.
I also follow an exercise regimen along with proper sleep hygiene. Vitamin supplements (B12, Calcium with Vitamin D, Potassium, Vitamin C, and folic acid) also help. Vitamin C showing the most impact.) As a side note I have also cut out caffeine, aluminum (deodorants), and lettuce out of my life.
Do you know the metabolic process involved with mono and diglycerides. Can my body not metabolize these or do they block certain absorption cycles? Your site have proven so helpful. Thank you. I have learned so much and feel so much better to know that I am not a freak or have some terminal illness. A million thanks!!!
Ice cream is well known to cause worsening of RLS in many patients. It is not known why, and your theory of the glycerides being the culprit is as plausible as any other (but not proven yet). RLS gets worse during most patient's pregnancies, just as you have noticed. I have not heard about breast feeding yet causing worsening, but we will see if others have experienced this.
There is no metabolic or other process that should cause trouble with mono or diglycerides and RLS that is known. Metabolism of the chemicals that we eat everyday is very complex, and only a small fraction of what really happens is understood. I am sure that you metabolize these fats as well as anyone else. How and if they play a role in RLS remains to be determined. We will see if your advice benefits other RLS sufferers who may then write in to inform us.
Date: Tuesday, September 08, 1998 12:53 PM
Subject: Great Website!
I too, like everyone else I've just read about, have thought I am crazy. No one else I've talked to seems to have this problem. I've had it ever since I can remember. My parents thought I just had a high energy level. That is true, but this is different than just having a lot of energy. I have always constantly swung my legs or tapped them. I can't stand going to a movie in a theater anymore because knowing I can't get up and walk the floor drives me nuts!
Luckily, I don't get the restless feeling a lot, but I have often felt like getting out and walking in traffic vs. moving around in my seat fidgeting. It is quite a nuisance. I have no pain and very rarely have a problem sleeping, but when I feel the restlessness coming on, I HAVE to go to sleep. Sleep is the only thing that relieves the feeling for me.
So my story is a little different than some of the others. I'm just hoping what they experience is not what I have to look forward to later. Although I am 46 now and others have had worse already. Maybe I'll be lucky.
Thanks for sharing all this useful information. I wasn't even aware that there was such a condition
Your story is actually very similar to many RLS patients. Even though it is likely that your RLS will worsen somewhat as you get older, there is now very good treatment available that can take care of those very annoying symptoms.
Date: Friday, September 11, 1998 1:37 PM
I'm not sure whether I may have RLS as bad as some of the letters I have been reading. Beginning at the end of May I began having a tingling sensation in my legs, arms and mouth. I went to a doctor who said that I must be hyperventilating and I should try breathing into a paper bag. Needless to say, that didn't work. I then went to a neurologist who examined me and all my neurological tests were normal. We then did extensive blood/urine tests to see if I had been exposed to some kind of toxin. Again, all tests were normal. I also had an EMG, guess what? Normal.
My body feels like my extremities are sleeping. I don't have pain associated with it, although when I am extremely tired my body aches and the tingling sensation increases to where it feels like pins and needles. I notice it more in the morning when I get out of bed, my knees feel as though they are asleep and I have some difficulty walking, mainly unsteadiness. As the day goes on the tingles minimize, but if I am sitting in a chair or driving for extended periods the sensation again increases.
My neurologist wants to play the "it's not life threatening, let's just wait and see if you get any other symptoms" and that I am only "perceiving these sensations." Do you know of anyone who has the same symptoms as I? Please help me. I am beginning to think I am crazy or something. I look forward to hearing from someone who has similar sensations.
A Reply from Kim C.
Your symptoms are similar to RLS, but it is still difficult to tell if that is what you really have. With RLS, the tingling sensations should get better fairly quickly with walking and you should feel a very strong urge to otherwise move the affected limbs. If that is the case, then it would be more likely that RLS is what is causing your tingling.
Date: Saturday, September 12, 1998 10:43 AM
Subject: Re: RLS
Thank you for responding so quickly. Unfortunately the tingling does not go away and I don't have the strong urge as you describe. This sensation has lasted for over three months and never goes away, it only gets worse if I am tired or in stressful situations. Most of the time though, it is when I rise in the morning or when I have been sitting for an extended period of time.
If you could pass this one to some of your colleagues, I would appreciate it. I do work very strange hours at my job so my body's timeclock might be messed up a bit. At this point, I don't know where to go next. Could this be a circulatory problem since my limbs feel as though they are sleeping? Thank you for any assistance you can provide.
It does not sound like you have RLS. A circulation problem is also not likely as this usually worsens when the circulation demands are increased, as with exertion. It may be due to pressure on some of your nerves in your legs from sitting (such as occurs with sciatica). These symptoms can be difficult to figure out, but generally a neurologist should be able to help you.
Date: Sunday, September 13, 1998 1:02 PM
Subject: please help...
I am a 31 year-old Registered Nurse in Joplin, Missouri. I had NO idea there were so many people out there suffering along with me. How very comforting.
I started having 'a funny feeling' in both calves and the right side of my face about ten years ago. It always started when I was resting, and seemed to go away when I would get up and move around. In the last few years, though, things have been getting out of control. I rub, mash, pound, stretch, twist, and flex my calves and feet, but the hope that this will bring relief is just an illusion. Nothing seems to work.
I have taken Neurontin, and nortriptyline for chronic neck pain and my inability to sleep well, but do not recall if there was any relief in my irritable legs. I work in surgery, and could not do my job effectively while taking either of these meds; especially during a trauma situation, when lives depend on me having a clear head. I never heard of RLS in nursing school, and honestly thought I was all alone in this. It never occurred to me to ask a doctor about it. I didn't think he/she would have a clue what I was describing.
I came across the term "restless legs syndrome" while attending a seminar for Fibromyalgia, and just the name sparked recognition in me....which led me here. The discomfort in my legs has gotten my full attention lately, and I think of little else. I rarely sleep more than an hour at a time, and would love to have some (any) advice on how to get my life back.
Thank you........Great site, by the way,
First thing you should do is check out our RLS Treatment Page which has all the medications used (and how to use them) for RLS. You should consider seeing a sleep specialist, that is if your family doctor does not feel comfortable treating you (or more likely does not understand or want to understand RLS). Most RLS sufferers will do well with medical treatment that should not make them drowsy an let them function much better during the day and night.
Date: Monday, September 14, 1998 6:42 AM
Subject: Question from Cindy R.
Do you have suggestions for treatment for an 8 mo. pregnant woman who has RLS? My OB doctor sent me to a neurologist who feels that RLS is likely the problem but is reluctant to treat me at this time. After reading about this, I do understand. Any words of wisdom for my health care providers or myself?
Medications in the sedative class are generally effective and safe for the nighttime RLS symptoms. Check with your OB, but Xanax, Valium, etc., should likely do the job. We do have a pregnancy section on our RLS Treatment Page . Also, have your doctors check you for anemia, as low ferritin and iron levels have been associated with RLS during pregnancy.
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