Restless legs

[Fubarcat]

Does anyone have what's known as "restless legs" at night.  I'm on Peg-Intron/Riba and every night I wake up with not so much pain in my lower legs, but just feeling like I need to constantly move them.  I flip and flop around like a fish out of water for hours and then finally get back to sleep.  I called my GI and he said to call my primary and get some medication specifically made for "restless legs", but I was just wondering if anyone has this problem?

[DonL]

I have that. I assume it is the ribavarin. I usually take an anti-histamine (Chlortrimaton) that I've used for years as a sleep aid. Since I usually wake up at 3 AM with this condition the anti-histamine will put me to sleep for 4 hours without making me drugged feeling when I wake up.

[mikesimon]

What Causes Restless Legs Syndrome?
The exact cause of restless legs syndrome is not known. The idiopathic or primary form of the disease seems to occur sporadically for unknown reasons. A family history of RLS is reported in many of these patients, suggesting a genetic component to the disease. Documented cases of parent-to-child transmission suggest that, in some familial cases, RLS may be inherited. In 2001, a French-Canadian group reported on a study of 25 family members, 14 of whom had RLS. The researchers suggest an autosomal recessive mode of inheritance in this family, with several candidate locations on chromosome 12 (Desautels A, Turecki G, Montplaisir J, et al. Identification of a major susceptibility locus for restless legs syndrome on chromosome 12q. Am J Hum Genet. 2001;69:1266-1270).

Secondary (or symptomatic) RLS occurs as a result of an underlying medical condition or in association with the use of certain drugs. For example, some conditions that may cause secondary RLS include kidney failure, low levels of iron, anemia, pregnancy, and peripheral neuropathy.

The symptoms of RLS may begin at any stage of life, including childhood, adolescence, or adulthood; however, the disease is more common with increasing age. Children with RLS are often misdiagnosed with "growing pains," anxiety disorders, or attention-deficit hyperactivity disorder (ADHD). Forty percent of those diagnosed with RLS during adulthood report having experienced symptoms before the age of 20 years. RLS affects both males and females; however, females often seem to be more severely affected and thus may be more likely to seek medical attention leading to a diagnosis of RLS. About 42% of patients initially experience symptoms on one side of the body, and approximately 25% report unusual sensations and motor restlessness in their arms. A large majority (about 94%) experience associated sleep disturbance.

Is it possible that another medical problem may cause RLS?
Before recommending or prescribing any treatments, physicians assess patients to exclude any underlying disorders, conditions, or other factors that may be responsible for causing or aggravating their RLS. Secondary causes may be suspected when RLS symptoms are brief or have recently become more severe.

Symptomatic restless legs syndrome may occur secondary to iron deficiency, anemia, folate deficiency, uremia, thyroid problems, diabetes, or peripheral neuropathy. In such cases, appropriate treatment of the underlying condition may eliminate or alleviate RLS symptoms. Such treatments may include the use of iron supplements for iron deficiency, medications that lower blood sugar levels for underlying diabetes mellitus, etc. Appropriate supplementation with B vitamins, vitamin C, vitamin E, folate, or magnesium may help ease symptoms even if a specific deficiency has not been determined.

Are there medications that may cause secondary RLS?
The use of certain prescription or over-the-counter medications may cause or aggravate restless legs syndrome. Therefore, before recommending or prescribing any specific treatments, physicians may ask for detailed information about the patient's current regimen of medications. If physicians suspect that specific over-the-counter medications are contributing to the occurrence of RLS, they may suggest the use of alternative medications. If they suspect that certain necessary prescription medications are causing or exacerbating RLS symptoms, physicians may work in coordination with a patient's other physicians to ensure appropriate, comprehensive treatment of any disorders or conditions that are present. The potentially offending medication may be replaced with another drug.

Medications that may cause or aggravate RLS symptoms include many antinausea drugs, such as Compazine® or Reglan®; certain medications that are administered to help prevent or control seizures, such as phenytoin; droperidol; particular antipsychotic drugs that produce tranquilizing effects, such as haloperidol and phenothiazine derivatives; and some cold and allergy medications. In addition, some rare instances have been reported where individuals who take certain drugs to treat depression (e.g., tricyclic antidepressants, selective serotonin reuptake inhibitors [SSRIs]) may experience some improvement in RLS symptoms; however, for the most part, such medications typically aggravate the symptoms of RLS.

Symptoms of Restless Legs Syndrome
Is there a theory as to what is happening in the body to produce the symptoms of RLS?

The results of functional magnetic resonance imaging (fMRI) and electrophysiologic studies suggest that RLS and associated PLMS may occur as the result of a central nervous system (CNS) abnormality originating deep in the brain (subcortical structures). There is also some evidence of dopaminergic dysfunction. More specifically, it has been proposed that RLS may be due to decreased dopaminergic activity in the central nervous system (CNS) at the subcortical level or perhaps at the level of the spinal cord. Recent research studies showed a disinhibition of the flexor reflex during sleep in people with RLS. Additionally, the beneficial effects of treatment with opioids suggest possible involvement of the endogenous opiate system, although this may be an indirect effect of the opiate system on the dopaminergic system.

Overview Results of the first-ever autopsy study of brains from people with restless legs syndrome (RLS) suggest that the disorder may result from inefficient processing of iron in certain brain cells. The findings provide a possible explanation for this disorder and may lead to new ways of treating the disease.


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Results of the first-ever autopsy study of brains from people with restless legs syndrome (RLS) suggest that the disorder may result from inefficient processing of iron in certain brain cells. The findings provide a possible explanation for this disorder and may lead to new ways of treating the disease.

The researchers found no evidence of lost or damaged cells in the RLS brains. Instead, they found that receptors which help cells absorb iron are abnormally regulated in cells that produce the nerve-signaling chemical dopamine. The study, led by James R. Connor, Ph.D., of Penn State University College of Medicine in Hershey, Pennsylvania, was funded in part by the National Institute of Neurological Disorders and Stroke (NINDS) and appears in the August 12, 2003, issue of Neurology.*

RLS affects more than 12 million people in the United States. It causes unpleasant sensations often described by people as burning, creeping, tugging, or like insects crawling inside the legs. Lying down and trying to relax makes the symptoms worse. As a result, most people with RLS have difficulty falling asleep and staying asleep, which leads to exhaustion and daytime fatigue.

A number of studies have linked RLS to deficiencies of dopamine and iron. Medications that affect dopamine levels, such as the drug levodopa, relieve symptoms of the disease in some people. Injections of large doses of iron also sometimes relieve symptoms, even in people who don't have an iron deficiency. However, it has never been clear exactly what causes the symptoms of this disease.

In the new study, the researchers obtained autopsied tissue from 7 RLS patients who had donated their brains to the RLS Foundation Collection at the Harvard Brain Tissue Resource Center in Belmont, Massachusetts. The researchers compared the RLS brains to autopsied brains from 5 people with no history of neurological disease. They found no evidence of brain damage in any of the brains they studied. However, the amount of iron in brain cells from a region called the substantia nigra was extremely low, and there were very few receptors for transferrin, a protein that binds to iron and transports it into cells. Levels of several other proteins linked to iron storage and transport were also low.

The lack of iron in the cells may cause them to malfunction, leading to the symptoms of RLS, Dr. Connor says. "This may explain why treatment strategies tend to work," he adds. "In RLS, we just need to tweak the system to improve cell function, rather than replacing lost cells."

The results do not mean that people with RLS have an iron deficiency, Dr. Connor says. Instead, the iron in their bodies is not being delivered to specific brain cells in an effective way. The findings help to confirm that RLS is a neurological problem and not a psychological disorder, as many people have suspected, he adds.

People shouldn't start taking iron supplements without a physician's advice, Dr. Connor cautions. Most studies that have found a benefit from iron supplementation have used very large doses of iron, administered intravenously. Taking too much iron can lead to problems such as dizziness, headaches, low blood pressure, coma, and even death. Studies have suggested that high levels of iron also can increase the risk of Alzheimer's and Parkinson's disease, he adds.

The researchers are now focusing on studies to determine precisely how iron transport is altered in people with RLS, why the transferrin receptors are decreased, and how the iron deficit affects cells. One of these studies has suggested that alterations in a specific protein interfere with connections between neurons. Other work suggests that the abnormally low level of transferrin receptors in RLS results from disruption of a regulatory protein, possibly due to a gene defect. However, more work is needed to confirm these findings.

In the future, Dr. Connor hopes to study how iron supplementation works in people with RLS. He also hopes to find drugs or medical techniques that can specifically target the problem with iron uptake in the brain. This type of therapy should be more effective and less dangerous than injecting high doses of iron into the blood. "I feel this is an area that's ripe for new therapeutic approaches," he says.

The NINDS is a component of the National Institutes of Health within the Department of Health and Human Services and is the nation's primary supporter of biomedical research on the brain and nervous system.

*Connor JR, Boyer PJ, Menzies SL, Dellinger B, Allen RP, Ondo WG, Earley CJ. "Neuropathological Examination Suggests Impaired Brain Iron Acquisition in Restless Legs Syndrome." Neurology, August 12, 2003, Vol. 61, No. 3, pp. 304-309.

-by Natalie Frazin


Reviewed August 11, 2003



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Fact Sheet

[meandhepc]

I thought I was the only one that woke up at 3am every morning!

I usually take a hot soak in the tub before bed, it helps most of the time and taking ambien too. Its a 4 hour sleep-aid for me as well.

FUBARCAT..... don't laugh, but if you put vicks vapor rub on your feet at nite with socks....it will help as well.... I was told about this for my ingrown toenails from my primary Doctor and laughed but finally went for it and it stopped the pain and I noticed it soothed my legs as well.....can't hurt to try!

[Fubarcat]

Thanks for your help.  I really didn't want to start taking any other "drugs" other than the Peg/Riba as I know THAT can't be good for the ol' liver, but I caved and called my GI.  He called "something" into my pharmacy for me, but didn't tell me what it was.  I'll pick it up tonight and see what goodies he has for me now.  


Mike:  Thanks for the research - you are great!  I don't take any other prescribed meds other than Peg/Riba, but I do take vitamins, milk thistle and lecithin.  My blood work has come back slightly low, but nothing to be concerned about, so maybe it's just a case of slightly low RBC and WBC counts.  

Whatever - all I know is I need sleep and my poor little legs must walk a million miles every night without me!  I'll let ya'll know what the GI prescribed and how it worked tomorrow.

Thanks again so much for the helpful input from everyone!

[mikesimon]

I used to get restless legs occasionally. I recall my father suffering with this problem so it may indeed have a genetic component. I haven't had this problem for years but I remember well the misery of the disorder. I too suspect that the meds we take may be a factor. It's hard to know what these drugs really do. Good luck. Mike

[Ambush]

I also have the restless leg thing ~ and when I'm having a bad night of it, I also have it in my arms.  My legs and arms jump and just can't be still.  I have found a heating pad helps settle them down and have at times taken one extra strength tylenol in desperation and it seems to help.  Lotion and a good massage may bring some relief, too.
Mike, interesting the tie in with the iron levels as mine were low at start of tx.        
ambush

[mumsie]

also try taking your calcium magnesium d at night it helps to relax and calm nerves.

[mikesimon]

The one study suggests that it's not the iron load per se but the amount of iron in the brain. I think it's still up in the air but I don't think iron supplementation is appropriate for most of us here. Mike

[DonL]

From your research, it sounds like "restless legs" are different from what I've got. The only other times I have had it have been from amphetamines in my youth so I assume it is totally a drug reaction.

[Fubarcat]

GI ordered Clonazepam (Klonopin) for me.  In doing a Google search, it says it is contraindicated in patients with "severe liver disease".  Now what does this tell me?  Either I DO NOT have severe liver disease and my doc put me on Peg/Riba as a cruel joke (Kidding, I know that's not true); or I can get a good night's sleep if I take it, however, I can kill my liver with it in the meantime.  Is there just no end to the string of problems this damn dragon is going to cause????  AAAGGGHHHH.  I think I'll try the heating pad, calcium at night, hot bath before actually taking the Klonopin.  If I absolutely have to take the Klonopin, then I guess I'll try it.

[Ambush]

I agree ~ I had one GIPA at my office suggest I take a multi with iron and I disregarded the advice because my GI had previously told me NO iron and that it was a big plus to have the low iron storage in regards to tx success.  As a 1a, I need every "plus" I can get my hands on.
ambush

[audreywald]

I get this on shot nite. I have been taking 2 liquid Nyquils on shot nite and it helps me sleep through the nite - my liver doc said this the liquid Nyqil caps are ok to take while on tx. If I have restless legs, I am asleep and don't know it!!!

[new-sojourn]

Its funny how conditions we've always had are now formost in our minds.  I, too, never knew of RLS altho I've always had it.  When I 1st read of  RLS, my partner and my mother thought I was making it up.

Caffine makes it worse, the RLS and sleeplessness.  All the suggestions work.  Personally, I just have a ritual at bedtime.  My partner likes to get good and asleep before me and my RLS come to bed.  So, while he's settlein' in, I pour a hot footbath.  I like to boil the water, a tea kettle at a time.  I also add some plain, white vinagar (not needed, just preventative medicine).  I then sip herbal tea, have a piece of dark chocolate and replenish my dopimines by smoking a joint.  I then slowly dry and applied plain, old petrolium jelly-vik's w/o the vapor to my feet and lower legs.  Pop I benedryl and a tylonal and MELATONIN-a natural sleep aid -otc.

Then, the late news is over and I've seen Jay's or Dave's monologue and I go to sleep.

Heavy blankets in the winter help also.

[Fubarcat]

I love it.  Does the chocolate or the joint come first?  If it were me, it would be one joint and 100 pieces of chocolate!  Thanks for the help, I don't do caffiene anymore, I do drink herbal tea, and I haven't smoked anything for years, so I'm pretty well covered on that one.  Anyway, I'll try the natural remedies first, then resort to drugs last.

[AK - Hepper]

i've had that restless leg syndrome since I was a young kid, always when I get tired and right before I get to sleep. I googled it a while back and there's not a whole lot you can do for it, they say some kind of exercise  with your legs or stretching is supposed to help but I never noticed much relief. I just have to keep flexing my calf muscles till I can get to sleep, sure can be aggravating, though.

[cindee]

I am 3 months post tx. and have been on klonapine for about 3 yrs. Remember everything passes thru the liver, so there aren't really any "good" drugs as far as that goes. I take 4 klonapine a day. I have been SVR all the way. Find out 6 month blood test in MAY. Go ahead and take the klonapine, it will help you sleep as well.

And everyone needs to stay away from  caffine  . It will deplete the water you are taking in. So go to de-caff...I know uuughhhh, and for the chocolate.....you can find artifical choc., well it's natural @ the health food store...it's called carob. I liked it better when I refrigorated it first.

And for the sore muscles...I used a heated wrap...best thing I ever invested in and my father-in-law gave me a  homemedics chair thingy...it's heated and it vibrates. I would get in the chair w/ the homemedic vibrating and heating my back side and then put the heated throw over that!!!! It was GREAT!!! hope you feel better and take a klonapin!!!!!! They may take a couple of wks to get in your system...they made me very sleepy @ first. Before they put me on lortab for pain, I did smoke a little weed, here and there. Hadn't done that in years!!!!!!! But it does help w/ the nausea and eases the pain as well. Take care, we all love ya! Cindee

[Eyedeas]

Hey there, can't remember how far into tx you are but I'm amazed at antone doing this without ad's.  If you do decide to go the drug route, my doctor switched my ad and put me on trazadone when I told him the old one wasn't working and that i had the terrible twitching legs.  That was the first I heard of RLS and man did it work.  

I hate taking extra meds and never thought that "I" would need anything like an AD, but... these meds are tough.  Starting agin next Friday so it's

Second verse, same as the first!

Kim

[cindee]

I wish YOU the Best on your second go-round. If you are married, I am, I hope no one (your wife) takes this wrong, but Kim you have been such an inspiration to me and what I want to say is... I truely LOVE you! You are the best!!!! And thru all this your sense of humor has been so wonderful and the friday nite songs are GREAT!!!!!! You keep your head up and I know, you are going to beat all the disease you are going thru. God is smiling down on you!!!!! Many Prayers and Much Love, Cindee

[mikesimon]

I want to join in and wish you good luck and easy sides this time around. Mike

[new-sojourn]

Maybe you've read the recent studies on the health benefits of dark cocoa?  I, myself, prefer 80% cocoa bars (Lindt's.)  As to the pot, one man's poison is another man's potion.  And 25% of us, worldwide, legal or not, find recreational and medicinal use.

B/the footbath and leg and foot massage (reflexology) w/oil or lotion or herbal balm will relax the muscles and nerves that do cause that , well you know that feelin'.