RLS questions

[Guest guest]

Hi everyone!

I've been lurking for a long time. I'm an internist with some interest in

RLS. I've found that subscribing to newsgroups and lists is one of the best

ways to obtain information that I can't find elsewhere. I had one patient

with clearcut RLS, and now that I've learned something about it, I see that I

actually have many patients with RLS that had gone undiagnosed.

I have several questions for the group, which is why I have unlurked

(delurked?).

To Tina, who has a neurologist who wants to do a sleep study: I believe RLS

is a clinical diagnosis, based on history and physical exam. A sleep study

could diagnose PLMD, an electromyographic diagnosis based on the sleep study.

My first question is, how much does a sleep study add and did most of you

require a sleep study for diagnosis or management?

My second question is, were any of you diagnosed and treated for fibromyalgia

before being diagnosed with RLS? I seem to see a lot of people who have been

struggling along with fibromyalgia, and when I take a history, they seem to

have clearcut symptoms of RLS.

And thirdly, does anyone know of an association between scleroderma and RLS?

Many thanks for your time,

090@...

I have a couple of questions for the group.

[Guest guest]

What a welcome addition to our group. I am glad you " unlurked. " To many of

us who have had such uncomfortable situations with our doctors, it is

refreshing to find someone who is doing more research on RLS to better help

her patients.

I have done three sleep studies because I have sleep apnea as well. None of

the studies proved RLS, but did show PLMD. I agree that RLS is a clinical

diagnosis.

Please continue to participate with us. I will look forward to your input.

Larry Gibbens, 60 Baldwinsville, NY

Lgibb@...

[Guest guest]

Interesting questions

>My first question is, how much does a sleep study add and did most of you

>require a sleep study for diagnosis or management?

================

It made the difference to me. There was finally a diagnosis, the beginning

of a relationship with a doctor who was prepared to treat the problem

medically, and a much better understanding of what was involved.

>My second question is, were any of you diagnosed and treated for

fibromyalgia

>before being diagnosed with RLS? I seem to see a lot of people who have

been

>struggling along with fibromyalgia, and when I take a history, they seem to

>have clearcut symptoms of RLS.

=================

This question REALLY surprised me because the answer is YES. I'd been

treated for fibromyalgia for a couple of years prior to that neurologist

finally deciding a sleep study was required. The new neurologist refuses to

answer my question as to whether fibromyalgia is still part of my problem.

His feeling is that it is irrelevant. He thinks that if he treats the RLS

adequately, any fibro symptoms will be minimized anyway, and hence not much

of an issue. He also feels that since it is so hard to treat fibro in a

coherent fashion, he's more comfortable attacking the RLS because he feels

he has better medical tools at his disposal. I argue with him about this a

couple times a year, but on balance, I'm finding he's right. The RLS is

under pretty good control now (I " m taking 900 mg. of Neurontin at bedtime,

along with .5 mg. Xanax - well, I'm taking a whole bunch more drugs than

this right now for my problems with clinical depression, but I think that's

a separate issue), and I haven't been this physically comfortable since the

spring when the Sinemet failed.

>And thirdly, does anyone know of an association between scleroderma and

RLS?

==========

Sorry, no idea what that is.

Hope this helps you.

Eve

[Guest guest]

I think that it is wonderful that you have gotten some useful information out of

this group. My PCP is an internist and when I first saw her for this condition

(a

little over 4 years ago), she was not at all familiar with RLS. After trying

various anti-depressants, she finally referred me to a sleep disorders

specialist.

> To Tina, who has a neurologist who wants to do a sleep study: I believe RLS

> is a clinical diagnosis, based on history and physical exam. A sleep study

> could diagnose PLMD, an electromyographic diagnosis based on the sleep study.

> My first question is, how much does a sleep study add and did most of you

> require a sleep study for diagnosis or management?

>

As for the sleep study, I did not have one done immediately, as my doctor

diagnosed my RLS from me telling him my symptoms. As it turned out, the best

combinations for treatment of my RLS was Vicodin and Klonopin. My sleep doctor

would not prescribe the Vicodin for me, so he referred me back to my internist.

After some time, and the fact that I had developed chronic insomnia, my

internist

referred me to another sleep doctor, of who I chose, this time, for a sleep

study. My new doctor didn't feel the necessity of the sleep study immediately,

and we chose another route to try and stop the insomnia. After several months of

it, plus the possibility of apnea and PLMD, they finally did the study. The main

results from the sleep study were, of course, RLS, mild hypopnea and mild PLMD.

> My second question is, were any of you diagnosed and treated for fibromyalgia

> before being diagnosed with RLS? I seem to see a lot of people who have been

> struggling along with fibromyalgia, and when I take a history, they seem to

> have clearcut symptoms of RLS.

>

Unfortunately, I was just diagnosed with fibomyalgia two weeks ago. I have been

having terrible problems with pain, fatigue and headaches for about 6 months or

so. My internist told me, after the diagnosis, that she has seen alot of

patients

with other sleep disorders that also develop fibromyalgia over time. I guess

there is some correlation between the two. I'm now taking Flexoril at bedtime,

along with my current RLS meds (Percocet and Xanax) and starting to feel a

little

better. I also have an appt. with a physical therapist on Wed. so that they can

show me some exercises that I need to do on a daily basis to help with the FMS.

In my case, the RLS reared it's head long before the FMS did. I have noticed

that

several of the group members have mentioned FMS in their posts in the past,

though. I just joined a FMS support group, similar to this one, a little over a

week ago, and I'm finding out that many of the FMS group members also have the

symptoms of RLS, but have not been diagnosed.

>

> And thirdly, does anyone know of an association between scleroderma and RLS?

>

Actually, you lost me on this one, I'm not sure what scleroderma is, but would

like to know.

Hope this helps, and welcome to the group.

Jodi Judson

Cyberspace RLS Support Group

List Owner

http://surf.to/rlsinfo

[Guest guest]

I was also diagnosed with Fibromyalgia, but now I'm wondering if a lot of my

symptoms, weren't pigeonholed in that diagnosis, to help define and clarify

the baffling cause of my discomfort. After all, I was at least 80% sleep

deprived when I was diagnosed. I don't know which disgusting illness came

first, but it doesn't surprise me to hear that so many of us have been

diagnosed a lot of things. I have to be mindful to really take care of

myself. To rest when I'm tired, to eat gently, and to give myself a break

when I don't feel well. Were all fortunate to have some answers to this

malady, and to have support is such a bonus. Sweet Dreams, Elaine, Malibu

[Guest guest]

Hi

Welcome to the group. Glad you delurked. :-)

If I may attempt to answer your questions about RLS.

1. The American Sleep Disorders Association, Standarda of Practice

Committee, Indications for Polysomnography Task Force makes the

following statement in " Sleep, Vol.20, No.6, 1997 "

4.5.3.2 " Polysomnography is not routinely indicated to diagnose or treat

restless legs syndrome. " RLS is a syndrome whose diagnosis is based on

clinical history. Typically, there are no abnormal physical findings or

laboratory values. The argument that PSG is necessary so that PLMD can

be diagnosed is weak. Approx. 80% of RLS patients show PLMs on sleep

studies. After age 60, PLMs are seen in 40% of the general population

with no sleep problems. In my opinion, PSG is indicated only in some

cases of pure PLMD with no RLS and with significant sleep problems. Most

cases of pure PLMD are clinically evident, either to the patient or to

his/her bed partner. In many cases, treatment of the RLS will also treat

the PLMD.

2. Fibromyalgia is also a syndrome, the diagnosis of which is frequently

used to explain pain of no known cause. The American College of

Rheumatology has established criteria for the diagnosis of FS

(fibromyalgia syndrome). These criteria have been criticized by some

physicians as being too stringent. If followed, these criteria would

reduce the number of cases diagnosed as FS. Physicians working with FS

patients feel that stress and sleep deprivation are two major factors in

exacerbating FS. Thus it is not surprising that RLS patients, who are

almost all sleep-deprived and stressed, would show FS more frequently

than the general population. Both entities have a high prevalence. There

are between 3-6 million cases of FS in the US according to FS

organizations. There are between 13-27 million cases of RLS in the US

based on an incidence of 5-10%. Coincidental occurrence on the basis of

high prevalence would be expected.

3. I know of no relationship between scleroderma and RLS.

L. Levin, M.D.