Restless Legs Blog

We all know how mind consuming RLS can be. In fact it is hard to think about anything else when it is in its worse stages, but can that be changed? Some people think so, you decide.

I ran across this on the internet and thought it was worth noting.

Behavioral Therapy: Distraction Techniques
Individuals with RLS often find that it is helpful to distract the mind when an RLS attack occurs. The idea is to occupy the mind on some other activity, and in the process reduce the attack or even make it go away completely. There are numerous techniques: music, dance, stretching, computers, games, food, hand work like knitting etc., candy to suck on, massage, herbal teas etc.. And there are visualization and relaxation techniques: breathing exercises, guided imagery etc..

One name for this distraction approach is “BOTA”, which stands for “Bag of Tricks”. BOTA involves a combination of behavior modification approaches and was developed by RLSer Jill Gunzel. The idea is to develop a set of techniques that work to stop an RLS attack as quickly as possible. These techniques, or “tricks”, are applied systematically and repeated over and over again until eventually behavior modification is accomplished. Not only do the tricks work to quiet or prevent the RLS attacks at the moment, but they eventually have a positive effect on future tendencies and experiences with RLS.

Without hope we would never find answers. So don’t stop looking for help.

Kris 

 I ran across this letter on one of the forums I visit  and decided to share it with my readers. I love real life stories and successes, that information is the most valuable, because it is real people and situations. One persons success can help hundreds of others. It is important that we continue to share what we have learned with each other. 

“After having r.l.s. for over 26 years and only for the last 5 years having known what was wrong with me , I’ve been on sinemet. along with ultram, 1 pill each at night , usually works o.k. but many nights I just twitch my self to sleep, recently my wife found some info on r.l.s. that showed that even with a normal iron level, r.l.s. patients could still be low on iron and that may cause a worstening condition. Well about a week ago I started taking a once a day iron supplement, within the 2nd day I am sleeping great , no daytime r.l.s. symptoms, at night I fall asleep witout any twitching at all and sleep thru the night without any problems . Also for the last 3 nights I’ve only been taking a half dose of the sinamet and still am going all night , and day with no problems. All I can hope is that this info will help others as much as it has helped me,It’s almost like I don’t have r.l.s. anymore, Im energized from sleeping well, and I feel that a big piece of my life has been returned to me . How simple of a fix this turned out to be, ( my doctor treats many patients with r.l.s. and always said I was the worst case of it he ever saw, 2 stanford sleep studies, they agreed that I was a 8 to 9 on a 10 scale. There is hope if we all just communicate to each other, we are the testers, thru knowledge is power over this terrible condition. Im getting my life back I hope this will help others get theirs back also. Best of luck to all that read this in their quest for a life returned.”

More things to think about.

Kris  

I read a book on Restless Leg Syndrome by a Robert H. Yoakum who relates a German study involving over 4000 people. It found that RLS is more prevalent in women with 3 or more children by 3 times the risk as compared to men and women with no children. He also states that that is corroborated by another study in which significantly more women reported early-onset  RLS compared to men.

He’s conclusions were that it may be that iron and hormones pay a critical role, particularly since so many women not only experience RLS for the first time during pregnancy, but also find that their symptoms often disappear after delivery, especially if they haven’t had any previous signs of RLS.

I believe this to be true, because of my own experience not only with taking iron but the dramatic decrease in my RLS when I started taking Bio-Identical Hormones.

Just some more things to think about.

Kris

I visit different forums on restless legs quite often, because I think people that have RLS, and have found things that work for them are some of the best resources for help. I have included just a few of those comments today. Use whatever information you think might help your restless legs.

“Wrapping ace bandages around my legs just above & below my knees helps to alleviate their inner urge to move.”“One woman said she massaged her legs with some kind of cream (wish I could remember what it was) then slipped stretchy leg/ankle? Wraps over them, & this gave her a fairly good nights sleep.”

“A tidbit of info I read that resonates with me is that our bedrooms should be cool. If my feet and legs are not too warm, I am less likely to have problems with rls in bed.” “I had some miserable nights last summer that I think were brought on by my legs and feet being too warm due to the heat and humidity. This year I wanted to do my best to keep my bedroom as comfortable as possible. We just had a 4 day bout of high heat and humidity and I kept my bedroom comfortable {lower temp on the A/C and brought more cool air to the bedroom vent}. The temperature of my legs and feet was good and I had no problems with rls.”

“I had the experience of wrapping myself up in ace bandages. Looked like a mummy one day. Thats when it hit me to wear compression stockings. It really works. Yes, sometimes in the ankle, sometimes, the calf, or thigh or even up into the groin. If my legs are driving me nuts when just watching TV on the couch, I know that sleeping will be bad. The support stockings, are like ace bandages all the way up your legs. Compression on the legs, satisfies the need to move. If you haven’t tried it yet, try the medical grade compression stocking thing. just my two cents.”

Kris

In the New England Journal of Medicine it is reported that they have discovered a gene that could cause RLS or periodic limb movements in sleep. It goes on to say that in the search for sequence variants contributing to RLS they;

“… performed a genomewide association study and two replication studies. To minimize phenotypic heterogeneity, we focused on patients with RLS who had objectively documented periodic limb movements in sleep. We measured serum ferritin levels, since iron depletion has been associated with pathogenesis of RLS.”

It goes on to say that the conclusions they found were;

” We have discovered a variant associated with susceptibilty to periodic limb movements in sleep. The inverse correlation to the variant with iron stores is consistent with suspected involvement of iron depletion in the pathogenesis of the disease.”

They feel that with this discovery it may lead to new approaches for preventing or alleviating the symptoms asssociated with RLS.

I think this is a major breakthrough and wanted to share the good news. If you want to read the whole article look under the title of “A Genetic Risk Factor for Periodic Limb Movements in Sleep”

Kris

The National Heart Lung and Blood Institute had this piece on their website on some of the available drugs that are out there for RLS. Please note that they say these are for use when lifestyle and nondrug treatments are not working. I appreciate that comment, because drug companies would have you think that their drug is the only cure, for me this is responsible reporting by an institute.

Medicines

Medicines can help relieve some symptoms of RLS. Doctors prescribe medicines to treat RLS in people:

• With clearly defined symptoms
• Whose symptoms cannot be controlled by lifestyle and nondrug treatments

No single medicine is helpful in all persons with RLS. It may take several changes in medicines and dosages to find the best approach. Sometimes, a medicine will work for a while and then stop working.

Some medicines may not be safe for pregnant women.

Always talk with your doctor before taking any medicines, even over-the-counter medicines.

Specific medicines

Medicines used to treat Parkinson’s disease also are used to treat RLS. Even though these medicines help reduce RLS symptoms, RLS is not a form of Parkinson’s disease. The medicines help reduce the amount of motion in the legs. They include:

• Levodopa (le-vo-DO-pa)
  • Is best used to treat mild cases of RLS
  • Is short-acting
  • Works for a while but does not work long term in most people
• Dopamine agonists (pergolide (PER-go-lid), pramipexole (prah-mih-PEX-ohl), and ropinirole (roh-PIN-ih-roll))
  • Are used to treat moderate and severe cases of RLS
  • Are used to treat mild cases of RLS if levodopa stops working
  • Are long-acting

The U.S. Food and Drug Administration recently approved ropinirole to treat moderate to severe RLS.

Other medicines may be used to treat RLS, including:

• Strong pain-relieving medicines (narcotics).
  • Used most often when symptoms are severe
  • May be used in people who don’t respond to dopamine agonists
• Sedatives (benzodiazepines (BEN-so-di-AZ-e-pens)).
  • Help with falling asleep
  • May cause daytime sleepiness
  • Are not recommended for people with sleep apnea and for older persons
• Medicines used to treat epilepsy (anticonvulsants: gabapentin (gab-ah-PEN-tin), carbamazepine (kar-bam-AZ-e-pen), and valproate (val-PROH-ate)). These types of medicines are:
  • Considered when dopamine agonists fail
  • Most effective in persons with daytime and evening symptoms, as well as sleep-onset symptoms, and in those who describe the unpleasant feelings in the legs as painful.
• Iron supplements, if iron deficiency appears to be contributing to RLS. Iron supplements should only be used if recommended by a doctor.

Kris

My summer schedule is always different than winter, especially my sleep habits. I go to bed later, usually not at the same time, and wake up later and at different times. My restless legs seem to act up more. So is there a correlation between keeping the same sleep schedule and RLS? We hear all the time how important it is to maintain a regular sleep schedule for good health but can it also make RLS worse? I was reading on the website for the National Heart Lung and Blood Institute and ran across these points on sleep and wanted to share them.

 Adopt good sleep habits:

• Keep your bedroom or sleep area cool, quiet, comfortable, and free of unnecessary light.
• Use your bedroom for sleeping, not for watching TV or using computers or cell phones.
• Go to bed every night at the same time and wake up at the same time every morning. Some people with RLS find it helpful to go to bed later in the evening and get up later in the morning. The important thing is to get enough sleep so that you feel rested when you wake up.
• Follow a program of moderate exercise

Other activities before bed that also may help relieve symptoms include:

• Walking or stretching
• Taking a hot or cold bath
• Massaging the leg or arm
• Using heat or ice packs

Good advice!

Kris

This was posted by someone on one of the forums I visit and I felt it was worth repeating on my blog.

Restless limbs linked to genes
LEG TWITCHING: Two studies back the reality of the poorly understood syndrome.
By Mike Stobbe
The Associated PressATLANTA – Scientists have linked certain genes to restless legs syndrome, suggesting the twitching condition described as “jimmy lets” in a “Seinfeld” episode is biologically based and not an imaginary disorder.New studies published this week are being called the first to identify specific genes responsible for restless legs syndrome symptoms.

Read another article in the weekly parade magazine about Restless legs. Amazing the media play it is finally getting. It is about time. anyway, this article was by a Dr. Isadore Rosenfeld. He mentioned that there are 12 million men and women in the country with RLS, I think there are more than that, but it is still an astounding number. He said a lot of things I have felt strongly about for long time and it is nice to have them repeated again. Here is what he said.

“Experts don’t really know what causes RLS, and there is not a specific test to diagnose it. Researchers suspect that it may be due to an abnormal transmission of dopamine, a chemical messenger that helps to relay signals within the brain. Still, for those with the primary form, there are several ways to obtain relief, the first step is to modify your lifestyle: Avoid caffeine, alcohol and tobacco – they make matters worse. Exercise moderately and regularly. Take a hot bath before you retire – it can improve your chances for a good night’s sleep. Try using a heating pad on the affected limbs (although an ice pack works better for some people). A word of caution: Some anti-depressants, antipsychotic drugs, antinausea medications, antihistamines and cough remedies can aggravate the symptoms of RLS.”

He does go on to mention some drugs that can work, but I was grateful to hear him nix anti -depressants and antipsychotic drugs. Those drugs are becoming the scrouge of modern drugs. I believe they are causing more harm than good. More childhood suicides, more mental problems for people and more psycohotic behavior in those that take them. How can that be a good thing? Isn’t it so much better to try natural helps, such as herbal remedies and lifestyles changes than trying to take the quick fix with drugs?

Kris

Sleep, that hard fought battle that we often lose. There are many ideas out there on how to increase sleep. I have mentioned several my self, such as no caffiene at night, light exercise or walking in the evening, taking calcium and magnesium before bedtime, and avoiding too much sitting before bed in tight restraining clothes. Many RLS sufferers recommend the popular drugs on the market, which I don’t, but they do say it gives them temporary relief.  Anyway, I have noticed another interesting fact about sleep, at least for me. That is; when I don’t get enough sleep or I wait too long to go to bed after I notice an increase in the restlessness of my legs, I have a much harder time getting to sleep. I have heard from other RLS sufferers, that they sleep better going to bed early in the wee hours of the morning, but that hasn’t been my experience. Could it be that we as a society are basically sleep deprived most of the time because of our hectic lifestyles? Could it be that we take such a long time to wind down from the day that sleep completely alludes us, until our body just shuts down in those early morning hours and that is why they can finally sleep? Doesn’t that just start a vicious circle of less sleep and worse RLS symptoms? Might I suggest that if we really want to cure our restless legs that we need to make a liftestyle change and make sleep a priority. I know that sounds like a contradiction in terms, but think about it, if we continue the vicious cycle, nothing changes and we never get rid of RLS, except become reliant on heavy medication the rest of our lifes; or we could gradually change our sleep habits, not letting our selves get too tired before we head to bed and make the other changes of good exercise and diet, we could find ourselves RLS free in a few years.

Just something to think about. 

Kris