Research Study Update

[Guest guest]

Dear Group:

As quite a few of you know, I was asked to participate in the RLS Research

at NIH. I had expected to leave on Wed. for the study, but several things

came up, and at this time, I'm not going to be making the trip. As a part of

this research, I was required to stop taking my meds for 5 days before

making the trip, plus not being able to take them while I was there. So,

Thursday night was the last time that I took them. I never completely

realized how well under control my RLS has been with these meds, until I

stopped taking them. I have been in absolutely RLS hell over the weekend. On

top of not getting any sleep and having several very severe attacks, I just

got a promotion at work last Monday, something that I've been working very

hard for, for some time. So, being sleep deprived, I knew that I wasn't

going to be able to do my job in my full capacity. Plus, I'm involved in a

very large project right now and cannot really afford to miss any work. I

contacted Dr. Bara about my concerns last week and he told me to do the best

that I could, where the meds were concerned. I can honestly say that I gave

it my best shot. After 2 days of almost constant RLS and trying to work over

the weekend, I finally gave in at about 4am on Sunday morning and took my

meds. I contacted Dr. Bara about this and explained my situation and my

experience and told him that I didn't believe that this was a good time for

me to make this trip. Plus, having to take the meds, the test results

probably wouldn't have been as reliable as not taking them. So, in

conclusion, he thanked me for my willingness to participate in this

research, told me that there was no apology necessary and that he hoped that

I would soon be back to " normal " . He also apologized for putting me through

this. He is a wonderful, compassionate man and I felt really bad for having

to do this, but I do know deep in my heart that I gave it everything that I

could handle. At this time in my career, I can't jeopardize my new position.

I feel kind of bad about not being able to participate in this study, but

sometimes you have to put things into perspective.

I just thought that I would let you all know what was going on, as I have

received several " good luck " messages from group members. I hope that all of

you are resting well tonight, and regardless of the fact that I'm not going

up there for the study, great strides are being made in RLS research. That's

the one thing that keeps me going sometimes.

Restful Nights,

Jodi