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RLS (Restless Leg Syndrome) RLS (Restless Leg Syndrome)

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Unread 04-27-2003, 03:59 PM
RLS (Restless Leg Syndrome)

Hi all,

Well I had my appointment with my internest and she felt that I had the sypmtoms of RLS. I am hoping this will go away soon because some nights I can't sit still and ache badly.

She prescribed more meds.... <sigh> One that will help me sleep through the night without twitching so much.

As far as an update on my V V F repair done abdominally on Feb 4, 2003.....hmmmm still good days and not so good days. Today I'm swollen again a lot. Have been jogging/walking so maybe it's related to doing too much???

I've been reading a lot of posts today and I am so thankful to have found you all and this website. When I hear of others talking about things I'm feeling I know I'm not alone.

Thanks everyone and yall are in my thoughts.

Renee<in California near surferbabe - what a small world it is indeed>
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Unread 04-27-2003, 04:16 PM
RLS (Restless Leg Syndrome)


Restless Leg Syndrome is a sleep disorder and can be diagnosed in a sleep lab. If that's what you do have it is not likely to go away, but can be treated.

As for doing too much - well, I guess you can decide that for yourself! Maybe it's worth having the belly in order to get the walking in! If it's not doing you damage or causing a lot of pain, it's probably OK.

I agree, it's good to know you're not alone.
Unread 04-27-2003, 04:38 PM
RLS (Restless Leg Syndrome)

I have a very mild form of RLS. In my case, it started when I was first pregnant and it used to trouble me only during pregnancy. However, through the years, the symptoms have been increasing and they now occur whenever I get over tired. In my case, I'm able to control it by ensuring that I get enough sleep and, when I have a flare up, I will simply "will" my legs to stop twitching (it's strange but, for me, it works).

Please, do try and get the condition formally diagnosed since, as Joselle mentionns, it is unlikely that it will go away. It might improve as your health improves but it is very likely that it will return.

Where doing too much too soon, please remember that you've been through a lot in the past few months and those repeated surgeries do take their toll on our bodies. Swelling is one of your body's way to tell you to slow down, even this far into recovery.

Sending lots of healing s your way.
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Unread 04-27-2003, 05:16 PM
RLS (Restless Leg Syndrome)

hi Renee
I have severe RLS, i have to tell you it royally su*ks sometimes BUT.....if you ever need an excuse cause you want to kick your partner in the shins, RLS is the way to go!! *grins*
Something that will make RLS symptoms worse is both low calcium levels and (surprise surprise) anemia or low ferritin levels. Even though i take other meds for it, i got improvement with my iron pills too.
Most people have mild symptoms and it's not that bad, sometimes hot showers or baths, cold showers (YUCK) or just walking will help. Hang in there, you'll do just fine! There is a great website if you find it's truly what you have. it's got lots of info (but i warn you, its members are mostly hard case rls sufferers and sometimes crankier than us Ladies in waiting
OH, i notice that my rls acts up worse when i'm flowing ....i HOPE it lessens when i come home from the castle!
love, becki
Unread 04-27-2003, 06:50 PM
Hi Renee.......

's to you. I suffer terribly with RLS. I didn't even know what it was or that I had it........I just knew that some nights that I COULD NOT sleep because my legs would ache so badly and the only thing that would help was to move them and even that didn't help much. I happened to mention it to my sister and she had been diagnosed with RLS, luckily she is able to take a sleeping pill and get sleep. I on the other hand have tried EVERYTHING (that I know of) heating pads, ice packs, relaxation tapes, long walks (to make me tired) HOT baths, muscle relaxers, benadryl, even potassium pills because I was told this can be a major cause of leg aches and cramps, sleeping pills just make me very tired and I still move my legs, my doc started me on Amitryptline and it worked for a few nights but then it didn't work any more. I just found out that this is an anti-depressant My doc wants me to continue using it but my body has a way of adapting very quickly to medicine and becoming tolerant.Lucky me!

If you find something that works.......PLEASE..let me know what it is. Luckily I don't suffer with this every night but on average, probably 3 out of 7 nights per week and I would give anything on those nights for some relief. I wish you the best of luck. I don't want to burst your bubble but the ladies are right, from experience...if it's RLS.....it won't "go away".
Unread 04-27-2003, 08:24 PM
RLS (Restless Leg Syndrome)

My husband has RLS, diagnosed in a Sleep Lab, and the treatment of choice for him is low dose of Clonazepam. Stops the twitching and aching.
Unread 04-27-2003, 10:04 PM
Another RLS sufferer here!!

I too suffer from RLS. It started out with my first pregnancy and has gotten progressively worse over the years. I finally went to my doctor about it around 6 months ago when I was having a particularly bad flare up. He prescribed quinine capsules. I was very skeptical at first as I have done lots of research on RLS and even mistakingly went in there with a print out of s/s and typical meds for it. He was very offended and accused my symptoms of being a result of reading up on it. Needless to say I no longer claim any medical knowledge and won't make that mistake again. Anyway I did find that the quinine did help some if I took it around 4 or 5 pm before my symptoms started. I have also noticed that since I have been back on the pain pills that I don't have that problem nearly as much. Since I take the vicodin before bed most days I guess it keeps it at bay. I have read that pain medication is one of the treatments for it. I know how frustrating this disorder can be and hope you find relief. One thing I can tell you is stay away from antihistamines like benadryl, phenergan, etc. They tend to aggravate the symptoms. A lesson I have learned the hard way when trying benadryl to help me sleep. Unisom tablets (not the liquicaps because they have benadryl in them!!) work really well to get you to sleep and are not habit forming. Just do not get the liquicaps that have the diphenhydramine in them (generic for benadryl) Also read any over the counter medicines that you might take like tylenol PM etc. because the active ingredient in them to help you sleep is diphenhydramine!! Sad that you can buy generic benadryl for less than $2 and they sell the same thing mixed with tylenol under the name tylenol pm for almost 3 times as much!! It always pays to read the labels.
Anyway sorry I have gone off on a long tangent here. I hope you get some relief soon.


Unread 04-28-2003, 05:55 AM
RLS (Restless Leg Syndrome)

I suffer from RLS as well..I take Clonazepam at bedtime which helps some..here are a few links w/ some info on it for you:

Restless Legs Syndrome Fact Sheet:

Restless Legs Syndrome Information Page




Restless legs syndrome (RLS) is a sleep disorder in which a person experiences unpleasant sensations in the legs described as creeping, crawling, tingling, pulling, or painful. These sensations usually occur in the calf area but may be felt anywhere from the thigh to the ankle. One or both legs may be affected; for some people, the sensations are also felt in the arms. These sensations occur when the person with RLS lies down or sits for prolonged periods of time, such as at a desk, riding in a car, or watching a movie. People with RLS describe an irresistible urge to move the legs when the sensations occur. Usually, moving the legs, walking, rubbing or massaging the legs, or doing knee bends can bring relief, at least briefly. RLS symptoms worsen during periods of relaxation and decreased activity.

RLS symptoms also tend to follow a set daily cycle, with the evening and night hours being more troublesome for RLS sufferers than the morning hours. People with RLS may find it difficult to relax and fall asleep because of their strong urge to walk or do other activities to relieve the sensations in their legs. Persons with RLS often sleep best toward the end of the night or during the morning hours. Because of less sleep at night, people with RLS may feel sleepy during the day on an occasional or regular basis. The severity of symptoms varies from night to night and over the years as well. For some individuals, there may be periods when RLS does not cause problems, but the symptoms usually return. Other people may experience severe symptoms daily.

Many people with RLS also have a related sleep disorder called periodic limb movements in sleep (PLMS). PLMS is characterized by involuntary jerking or bending leg movements during sleep that typically occur every 10 to 60 seconds. Some people may experience hundreds of such movements per night, which can wake them, disturb their sleep, and awaken bed partners. People who have RLS and PLMS have trouble both falling asleep and staying asleep and may experience extreme sleepiness during the day. As a result of problems both in sleeping and while awake, people with RLS may have difficulties with their job, social life, and recreational activities.

Common Characteristics of Restless Legs Syndrome

Some Common Symptoms of RLS Include:

Unpleasant sensations in the legs (sometimes the arms as well), often described as creeping, crawling, tingling, pulling, or painful;
Leg sensations are relieved by walking, stretching, knee bends, massage, or hot or cold baths;
Leg discomfort occurs when lying down or sitting for prolonged periods of time;
The symptoms are worse in the evening and during the night.
Other Possible Characteristics Include:

Involuntary leg (and occasionally arm) movements while asleep;
Difficulty falling asleep or staying asleep;
Sleepiness or fatigue during the daytime;
Cause of the leg discomfort not detected by medical tests;
Family members with similar symptoms.
What Causes It?

Although the cause is unknown in most cases, certain factors may be associated with RLS:

Family history. RLS is known to run in some families -- parents may pass the condition on to their children.
Pregnancy. Some women experience RLS during pregnancy, especially in the last months. The symptoms usually disappear after delivery.
Low iron levels or anemia. Persons with these conditions may be prone to developing RLS. The symptoms may improve once the iron level or anemia is corrected.
Chronic diseases. Kidney failure quite often leads to RLS. Other chronic diseases such as diabetes, rheumatoid arthritis, and peripheral neuropathy may also be associated with RLS.
Caffeine intake. Decreasing caffeine consumption may improve symptoms.
Who Gets RLS?

RLS occurs in both sexes. Symptoms can begin any time, but are usually more common and more severe among older people. Young people who experience symptoms of RLS are sometimes thought to have "growing pains" or may be considered "hyperactive" because they cannot easily sit still in school.

How Is It Diagnosed?

There is no laboratory test that can make a diagnosis of RLS and, when someone with RLS goes to see a doctor, there is usually nothing abnormal the doctor can see or detect on examination. Diagnosis therefore depends on what a person describes to the doctor. The history usually includes a description of the typical leg sensations that lead to an urge to move the legs or walk. These sensations are noted to worsen when the legs are at rest, for example, when sitting or lying down and during the evening and night. The person with RLS may complain about trouble sleeping or daytime sleepiness. In some cases, the bed partner will complain about the person's leg movements and jerking during the night.

To help make a diagnosis, the doctor may ask about all current and past medical problems, family history, and current medications. A complete physical and neurological exam may help identify other conditions that may be associated with RLS, such as nerve damage (neuropathy or a pinched nerve) or abnormalities in the blood vessels. Basic laboratory tests may be done to assess general health and to rule out anemia. Further studies depend on initial findings. In some cases, a doctor may suggest an overnight sleep study to determine whether PLMS or other sleep problems are present. In most people with RLS, no new medical problem will be discovered during the physical exam or on any tests, except the sleep study, which will detect PLMS if present.

How Is It Treated?

In mild cases of RLS, some people find that activities such as taking a hot bath, massaging the legs, using a heating pad or ice pack, exercising, and eliminating caffeine help alleviate symptoms. In more severe cases, medications are prescribed to control symptoms. Unfortunately, no one drug is effective for everyone with RLS. Individuals respond differently to medications based on the severity of symptoms, other medical conditions, and other medications being taken. A medication that is initially found to be effective may lose its effectiveness with nightly use; thus, it may be necessary to alternate between different categories of medication in order to keep symptoms under control.

Although many different drugs may help RLS, those most commonly used are found in the following three categories:

Benzodiazepines are central nervous system depressants that do not fully suppress RLS sensations or leg movements, but allow patients to obtain more sleep despite these problems. Some drugs in this group may result in daytime drowsiness. Benzodiazepines should not be used by people with sleep apnea.
Dopaminergic agents are drugs used to treat Parkinson's disease and are also effective for many people with RLS and PLMS. These medications have been shown to reduce RLS symptoms and nighttime leg movements.
Opioids are pain-killing and relaxing drugs that can suppress RLS and PLMS in some people. These medications can sometimes help people with severe, unrelenting symptoms.
Although there is some potential for benzodiazepines and opioids to become habit forming, this usually does not occur with the dosages given to most RLS patients.

A nondrug approach called transcutaneous electric nerve stimulation may improve symptoms in some RLS sufferers who also have PLMS. The electrical stimulation is applied to an area of the legs or feet, usually before bedtime, for 15 to 30 minutes. This approach has been shown to be helpful in reducing nighttime leg jerking.

Due to recent advances, doctors today have a variety of means for treating RLS. However, no perfect treatment exists and there is much more to be learned about the treatments that currently seem to be successful.

Big ((((hugs)))) Renee Thanks for the update..hope you are able to feel better soon
Unread 05-03-2003, 11:19 AM
RLS (Restless Leg Syndrome)

I had a complete hysterectomy 6 years ago and at 4months after surgery I developed what was thought to be restless leg syndrome but eneded up being fasciculations which is nerve jumping or twitching. I get it bad in my legs and sometimes it even effects my rear. I have yet to have a doctor explain why I developed this after a Hysterectomy but I am sure its is caused from something either hormonal, chemical(from anesthetic, medications used during surgery,etc.) I was totally normal and free from this before surgery. It worsens when I am tired and seems to also worsen when my pelvic bladder pain is severe. Did your problem come on after surgery? I find it kind of odd also that allot of women that have went through Hysterectomies end up having allot of these kind of problems. This site offers allot of imformation on web sites and such that are well worth the look. I have found in the last 6 years all the answers I have come up with was from my own research and the help of others on web sites such as this one, and there is comfort in knowing you aren't alone or crazy. Hope you find answers and soon! healing thoughts.
Unread 05-03-2003, 11:30 AM
RLS (Restless Leg Syndrome)

Well the doctor gave me the medicine "Clonazepam" for sleep and so far it does seem to be helping. I think because I'm more active that is helping as well.

You guys are so right about researching on your own. I found out that you are not supposed to take Prozac with Clonazepam so when I called the pharmacist I was told to change and take my Prozac in the morning and the Clonazepam at night. I swear they are trying to kill me. <grin>

You have to watch your back. I'm on so many different meds because of this "complication" I know to check a new med out and let the doctor(s) know what I'm taking. They didn't even know I was up to 40mgs of Prozac. My gyn first Rx'd me 20mgs but she gave me the go ahead to raise it twice during this nightmare to the max of 40mgs....but I guess it never got noted in my chart....so I informed my GP and the pharmacist the dosage I was taking....as I say watch your back.

Thanks everyone for your responses.

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