RLS CHAT GROUP:FIRST TIME WRITING

[Guest guest]

Hi Group, this is my first time writing. I have been on the Digest Version of

the group for about a week now, I think. I have been reading, with great

interest, all of the text that has come to me. I don't know where to start

with this message. I have had RLS for at 30 years, I am now 52 years old. I

was diagnosed with this about 2 years ago. I found out what it was from the

RLS Foundation Internet page. As many of you know it was so exciting to find

out there was a name to this " creepy, crawly thing I had. From there I went

to a few doctors who really didn't know much about this disorder although they

claimed to know about it, but at the first sign of my not responding to what

they usually treat their " insomniacs " with they kind of gave up on me. When I

described other symptoms that weren't familiar to them they claimed it had

nothing to do with RLS. Of course I researched this Syndrome for almost a

year before even finding my first treater, who was a neuropsychiatrist and

when I didn't respond to Klonopin alone he decided my problem was

" depression, " that's after telling me he is familiar w/RLS. He also told me

that " as we get older we don't require as much sleep. " It was at that point I

left him but not before giving him a lot of material to read and giving his

name to the RLS Foundation to send him their materials regularly. I don't

know if he receives them, I hope so. I live in Boston, a city full of

specialists of all kinds and can't/couldn't find a doc who knew about this

disorder. I finally have found a doctor who, by the way, is on the Medical

Advisory Board of the RLS Foundation. I'm having my little " glitches " with

him because of my extreme sensitivity to meds and the fact that while on a

very small dose of Mirapex for 4 months I began experiencing a lot of other

problems. More joint pain and swelling than usual. I do have medical

problems, i.e., 3 back operations, 6 knee operations with the last one ending

in a total knee replacement as well as lots of arthritis. In spite of this

though until the Mirapex my pain symptoms seemed to be under control. I do

take 1 Tyl #3 with 1 mg Klonopin also and I think that may help somewhat with

my pain. In any case I am now, as of 3 nights ago on Neurontin. I'm on a

very small dose, 100 mg at HS. I seem to be sleeping better, longer than I

was w/the Mirapex but I seem to still be experiencing the joint pain and

swelling just as much as ever. I have also had an increase in foot and calve

pain lately. The doc did explain that the PLMS could make that worse and that

persons with surgeries such as I've had do seem to experience more joint pain

than some. In spite of sleeping better I'm in gads of pain and don't know

what to do about it. I ice my knees and hands as often as I can. I am

overweight but because of the physical problems I've been having I can't do

any exercise that might be effective in helping me lose weight. That's also

another problem I seem to be experiencing. I have lost my appetite a lot

lately until evening when I could eat a horse. I don't even know why I'm

eating but I do. I guess I'm really carrying on quite a bit, but I'm so

impressed by what I'm reading here that I thought others might be able to

relate to some of the things I'm saying. I'm also curious to know if anyone

else has experienced some of the side effect I mentioned from the Mirapex and

now the Neurontin? I also take some herbs at bedtime as well as doing some

stretching when going to bed and upon rising. Well, lucky for you all my

medication is kicking in and I've got to go to bed and sleep when I can.

Thank you all for listening. Oh, and Dr. Levin, if you see this, I just want

to add that your input is greatly appreciated by me and it's true that

sainthood requires at least 50 years of death and we all, I'm sure, would much

rather have you here where you seem so willing and able to work with us.

Thank you. Kathy KMTW4825@...