Diagnosis City

[Guest guest]

I don't have RLS and, after subscribing to the list for some time now, I

thank my lucky stars. :-) My PLMS (or, for those who prefer it, PLMD) has

kept me quite occupied, thank you.

I was first diagnosed in, I think, 1991. I started with Klonopin then and

it was somewhat effective, at least for a bit. Then I needed increasing

doses to address the symptoms...so much so that I had difficulty

functioning. A repeat sleep study demonstrated what I'd noticed: it pretty

much wasn't working effectively. AND the second sleep study showed that I

also had sleep apnea. Then, for comic relief, a few weeks after I started

on a c-pap machine for the sleep apnea (and an adjusted dose of Klonopin),

I was diagnosed with breast cancer. So I faced a veritable embarrassment of

riches. :-) Underwent surgery and then radiation in 1995. Radiation on top

of sleep apnea and PLMS was not a picnic. I retired on disability from my

job in 1996.

For some time now I've felt absolutely dead tired. I'm taking Neurontin,

Sinemet CR and Roxicet and using my c-pap machine, but it seemed to me that

the fatigue not only wasn't improving but was becoming more difficult.

Well.

Last Friday I got another diagnosis to add to my scrapbook: diabetes! This

one threw me for a loop; I've been tested repeatedly over the years, but

nothing showed up...until now. I've begun medication, am being pretty

darned careful about food, and have actually detected, a few times in the

past week, signs of energy in my body! This means that I can walk a few

blocks without needing to nap along the way.

Why am I writing all this? Two reasons.

First, I could use a few folks rooting for me as I try to deal with this.

I'm not proud (hey, how many of us with sleep disorders are proud?).

Second, I thought I'd point out something that might be helpful to others

here in sleep disorder land: even those of us who have been diagnosed with

sleep disorders that don't respond well to treatment *might* be

experiencing extreme fatigue that has a cause quite unrelated to our

already-diagnosed sleep disorders.

One of the signs of diabetes is extreme fatigue. How many of us haven't

experienced extreme fatigue? And how many folks associate their fatigue

with their sleep disorders? I know I did. Thank goodness I have a good

primary care physician and good health insurance coverage, because without

them I'd probably still be diabetic...but undiagnosed.

The world's full of things that can make us feel crappy; sleep disorders

are only part of the picture. The world's also full of things

that can help us feel terrific, like being part of this list. Let's be

careful out there!

Cheers,

Janet, 50, in DC

accompanied by Deanna Ivy the Wonderkitty

[Guest guest]

Hi Janet,

Your letter really " got " to me on several levels. First of all I'm in

awe of your sense of humor in the face of so many really serious things

happening to you.I'm so glad you don't have rls on top of everything

else, and that you still feel you have " lucky stars " ! I guess we all

have them - just a matter of recognizing them. It's interesting what you

say about the fatigue not always being a result of a sleep disorder - I

haven't really had much sleep for years now, and yet I'm not usually all

that tired during the day.(can't function much past nine at night, but

that's ok) Hope you keep on writing - your attitude and courage sure is

an inspiration to me. Also, being a cat person, I love that your letter

was co-authored by your kitty! No doubt she can take the credit for at

least some of your wonderful perspective!

ne, 59, Lawrenceville, NJ

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[Guest guest]

Welcome Janet,

boy, it sounds like you have had more than your fair share. Keep hanging in

there. How do you tolerate your C-pap? The sleep specialist recommended that

I try it, but I'm claustraphobic, especially my face, so I declined. I was

diagnosed with hyponea/apnea, which is really mild apnea. Weight loss will

probably help. The other thing I found as was that certain medications

commonly given for RLS (Klonopin, Elavil) aggravate the hyponea. (Also

drinking of alcohol.) So the sleep study gave my Doctor and I useful

information, even if I elected to not try the C-pap. (I know three persons who

have C-pap machines and only one of them can successfully leave it on all

night, even after a year of trying.)

One of the first things my doctor checked for was diabetes, but everything was

negative. My brother was diagnosed with it at age 55, and the good news is

that if you are careful to follow a good diabetic regieme, it can be controlled

pretty well.

Jo from Mo, 56, winter Texan