Restless Leg Syndrome

November 7, 1998

Hi, ......

I can't tell you how good it makes me feel to know that there are physicians

out there who are actually going this far for important diagnostic

information. I have always believed that so much can be learned by just

listening carefully to the patient......and then asking the right questions.

About the sleep study........it is generally felt that this is not needed to

diagnose restless leg syndrome.......BUT.......my neurologist felt (and I

agreed) that it was important to know if I also had PLMD and to rule out sleep

apnea. It would seem prudent in today's medical environment, to take all the

necessary steps to rule out all other physical conditions that might in some

way cause this type of symptom. My physician said that he would feel more

comfortable experimenting with controlled medications if he checked me out

thoroughly first. He did the usual neurological exams, an overnight sleep

study, an MRI of the brain to rule out Meningioma, and quite a lot of blood

work......some of which I understand was unusual. Needless to say, I was very

fortunate to have insurance that would cover all of these costs.

It is my understanding as a layperson, that the symptoms described as

" Fibromyalgia " are somehow connected to not getting proper sleep, thereby

causing muscle fatigue, pain and depression. When I was diagnosed with this,

my Rheumatologist immediately began treating me for depression. I'm sure you

have already noticed that many in our group DO have Fibromyalgia. I knew long

before this, that I had Restless Leg Syndrome. In my mind, the symptoms are

not quite the same. Some do overlap......and it only makes sense to assume

that constant jumpiness of the legs, along with all the things we do to

relieve this problem, (walking, running, stretching, beating, pounding,

rubbing, etc, etc, etc,) would cause muscle fatigue and pain. Naturally, not

being able to sleep will cause fatigue and exhaustion. When the body does not

reach the proper levels in sleep, I have read that it is not able to repair

itself as well, thereby contributing to any number of other

conditions......such as a weakened immune system. This of course, can lead to

some very serious illness.

It is truly a vicious circle, and after 10 or 15 years of this, many of us

find our bodies assaulted from every possible angle, and will desperately try

just about anything that might give us some kind of relief.

Personally I know of no association between scleroderma and RLS, but it would

not surprise me at all if there WAS one because it HAS been associated with

Rheumatoid Arthritis......which I have witnessed in my very own family. You

have posed some very interesting questions and I hope you won't mind if I pass

them along to Dr. at s Hopkins, who is infinitely more

qualified than I am, to give you an answer.

I hope this is of some help to you and I thank you again for your interest in

this much maligned and neglected affliction. Each and every one of us in this

support group are truly thankful to those of you in the medical profession who

have deigned to take on this formidable beast! Bless you!

Connie Kekenes, 61

land

July 21, 2000

In a message dated 7/21/00 3:10:00 PM Pacific Daylight Time,

cmontana@... writes:

> My grandmother (questionable CMT), my mother (CMT II)

> and I (CMT II) have all had RLS all our lives. Mine usually comes on

> when I'm tired and if I take a couple Tylenol and a nap, it will go

> away.

*****************

Carolyn, I also suffer with restless leg syndrome... I think Kat was just

saying that CMT and Restless Leg usually don't go hand in hand.....

My Restless Leg gets worse if I take anything with Benadryl in it.... Makes

it mighty hard to take an over the counter sleep-aid... LOL

Jeanie

Moonglow21@...Moonglow21@... or Jeanie421@...Jeanie421@...

come and check out Charcot-Marie-Toothonlinechat at http://www.egroups.com/group/Charcot-Marie-Toothonlinechathttp://www.e

groups.com/group/Charcot-Marie-Toothonlinechat

July 21, 2000

I was just wondering what the definition of Restless leg syndrome is....is

that cramping of the leg?....I get terrible cramps in my feet and calves and

it usually takes place during the night and will usually last throughout the

night. I have CMT1X and have no noticeable signs of the disease at this

point...although I have a 3 yr old son who is already in need of leg braces,

he has not at this point shown any signs of leg cramping. I have had leg

cramping my entire life....just curious as to the correlation of it all.

Thank You,

Tana

July 21, 2000

I was just wondering what the definition of Restless leg syndrome is....is

that cramping of the leg?....I get terrible cramps in my feet and calves and

it usually takes place during the night and will usually last throughout the

night. I have CMT1X and have no noticeable signs of the disease at this

point...although I have a 3 yr old son who is already in need of leg braces,

he has not at this point shown any signs of leg cramping. I have had leg

cramping my entire life....just curious as to the correlation of it all.

Thank You,

Tana

July 21, 2000

I was just wondering what the definition of Restless leg syndrome is....is

that cramping of the leg?....I get terrible cramps in my feet and calves and

it usually takes place during the night and will usually last throughout the

night. I have CMT1X and have no noticeable signs of the disease at this

point...although I have a 3 yr old son who is already in need of leg braces,

he has not at this point shown any signs of leg cramping. I have had leg

cramping my entire life....just curious as to the correlation of it all.

Thank You,

Tana

July 21, 2000

In a message dated 7/21/00 5:30:40 PM Pacific Daylight Time, ann9055@...

writes:

> I was just wondering what the definition of Restless leg syndrome is....is

> that cramping of the leg?...

Tana, when I have restless leg this is what happens.... If I try to lay down

in bed and lay still - I can't - I will have to move my legs. They start to

ache and the only thing that seems to help is if you move your legs

constantly. Thus the name RESTLESS.

The cramping is different.

Jeanie

July 21, 2000

In a message dated 7/21/00 5:30:40 PM Pacific Daylight Time, ann9055@...

writes:

> I was just wondering what the definition of Restless leg syndrome is....is

> that cramping of the leg?...

Tana, when I have restless leg this is what happens.... If I try to lay down

in bed and lay still - I can't - I will have to move my legs. They start to

ache and the only thing that seems to help is if you move your legs

constantly. Thus the name RESTLESS.

The cramping is different.

Jeanie

July 21, 2000

In a message dated 7/21/00 5:30:40 PM Pacific Daylight Time, ann9055@...

writes:

> I was just wondering what the definition of Restless leg syndrome is....is

> that cramping of the leg?...

Tana, when I have restless leg this is what happens.... If I try to lay down

in bed and lay still - I can't - I will have to move my legs. They start to

ache and the only thing that seems to help is if you move your legs

constantly. Thus the name RESTLESS.

The cramping is different.

Jeanie

July 21, 2000

<< I was just wondering what the definition of Restless leg syndrome is. >>

Information for Patients

If you, a member of your family, or someone you care about is affected by

Restless Legs Syndrome (RLS), please read this section. You will find

information about the primary features of RLS, its potential causes, and

today's most effective treatment options. This site also includes a glossary

of RLS terms and FAQ area. Click here for the transcript of the RLS Web chat,

which was in conjunction with WE MOVE and the Restless Legs Syndrome

Foundation at the BetterHealth site on America Online.

This information is provided for educational purposes and is not meant to

take the place of consultation with your physician. Please contact your

medical professional if you have any questions about RLS or its treatment.

What is restless legs syndrome?

Restless legs syndrome (RLS) is a neurologic movement disorder characterized

by sensory and motor abnormalities that are distinctive but frequently

misdiagnosed. Some reports indicate that an accurate diagnosis takes a mean

of two years after patients initially seek medical advice regarding their

symptoms. RLS may affect up to 12 million people in the United States.

What are the symptoms of restless legs syndrome?

In 1995, the International Restless Legs Syndrome Study Group, then

comprising 28 investigators from seven countries, defined the four primary

features of RLS.

1. The desire to move the legs in association with unusual or uncomfortable

sensations (paresthesias/dysesthesias) deep within the legs, usually in the

calves; in some cases, the arms may also be affected. These sensations are

described as creeping, burning, tingling, cramping, aching, itching, pulling,

crawling, or " water flowing " deep within the affected extremities. Patients

with mild or moderate RLS characterize these sensations as uncomfortable; for

the most part, they are not perceived as painful. In rare cases, unusual

sensations occur in the feet. In even rarer cases, these sensations may also

be present in the trunk or genital area. These feelings may move from one

part of the body to another or may affect only one side of the body

(asymmetric). For example, one leg may have unusual sensations whereas the

other does not.

2. Motor restlessness in response to or in an effort to relieve unusual

sensations or discomfort. To the extent that a patient feels a compelling

urge to move, these movements may be termed involuntary; however, in so far

as a patient chooses which type of movement to perform, these movements are

voluntary. Such movements are often repetitive and may include pacing,

rocking, shaking, tossing and turning in bed, stretching, bending, marching

in place, or engaging in certain repetitive exercises, such as riding an

exercise bike or walking on a treadmill. Many individuals develop their own

routine of stereotypical movements and tend to repeat these same movements in

response to uncomfortable sensations.

3. Symptoms become obvious or worse while at rest (during periods of

inactivity or relaxation) and may be temporarily diminished by voluntary

movements of the affected limb(s). This restlessness is sometimes mistaken as

" fidgetiness " or " nervousness. " The unusual sensations and motor restlessness

associated with RLS may also be provoked by prolonged periods of inactivity

such as occurs during travel in a plane, train, or car.

4. Symptoms occur most frequently during the evening or the early part of

the night (e.g., between 6 p.m. and 4 a.m.). Individuals with even the most

severe RLS symptoms typically obtain some measure of relief during the early

morning hours. Worsening of symptoms while at rest and at nighttime may be a

very distinctive pattern that is unique to restless legs syndrome.

Additional Findings Associated with Restless Legs Syndrome

* What Causes Restless Legs Syndrome?

* What is Happening to Produce RLS Symptoms?

* How is Restless Legs Syndrome Diagnosed?

* Restless Legs Syndrome Treatments

* Restless Legs Syndrome FAQ

http://www.wemove.org/rls_pat.html

http://www.wemove.org/rls_mtr.html

July 21, 2000