Re: Digest Number 134

[Guest guest]

Hi group - I have been back on line for about a month now and have been

reading all of your email with great interest. There have been a number of

things that I would have liked to respond to but just haven't had the time so

I'm printing all this material and hoping that I'll remember from it what I

want to respond to the most. One thing I have to say is that I firmly believe

that " trauma " does have some relation to RLS. I''m not sure that I had this

as a child. I think I did and that it went into remission for many years. It

was after a back operation, herniated disc, about 30 years ago that it came

back. Not terribly, just enough to annoy me and then luckily it seemed to go

away again. Then it came back about 15 years ago but it was after I had a

total knee replacement 8 years ago that I got full blown RLS and then about 1

year later PLMS. I then had another herniated disc 4 years ago and found

again that my RLS/PLMS seemed even worse if that was possible. Of course all

this time I did not know what this malady was, just that if something didn't

happen I was about ready to shoot myself. Finally, like many of you, I found

sleep disorders on the Internet a couple of years ago and the rest is history.

I did a lot of research and went to 3 neurologists who supposedly knew about

RLS but I'm here to tell you they didn't and they weren't interested in

learning although I have given their names to the foundation to have material

sent to them. Their loss! Then last August I was able to get an appointment

with Dr. Bruce Ehrenberg who is here in Boston and who is on the MAB of the

Foundation and am now being treated in a better way for my RLS. I'm sleeping

better most of the time. As for my pain, forget it. It just isn't a whole

lot better. Some days better than others. But I can tell you that I have a

lot of hip, thigh, knee, calf, ankle and foot pain. I can also tell you that

occasionally my back will bother me a lot. I do have arthritis throughout my

body so it's hard to tell how much of this pain is arthritis vs. RLS but I do

know that some of the pain is RLS related. I also want to take this

opportunity to thank you all especially for the " Chumper " info. I just got

one yesterday and oh my Lord what a morning. Jill it's great and I got it at

Walgreen's for $60.00. Also want to thank everyone for their input and

information regarding what helps them and what doesn't. I have been learning

so much from you guys and am so grateful. Have even learned to be more

aggressive with my doctor about my treatment. I really am more interested at

this point in trying to treat my RLS with alternative treatments. I'm

extremely sensitive to meds and even on just 300 mgs. HS of Neurontin I'm

having awful side effects and am so uncomfortable with this medication. I

also take 1 Tyl #3 and 1 Klonopin 1 mg. These last 2 I have been taking for

over a year and haven't had to increase them but with the Mirapex then the

Neurontin I have had to increase them rapidly and am not comfortable with that

as well as the awful side effects. I am going to check out the Rutin and

increase my Vit. B's and see what that does. I also take Valerian Root, Vit.

E. and Cal/Mag/Zinc at bedtime as well as Multiple vitamin during the day and

extra E if I feel it's necessary. If anyone out there has any other

suggestions would love to hear from you. Well, I'm sorry for being so long-

winded, hadn't intended to be. Thanks again everyone for being here. Sleep

well all. Kathy/ 52 Cambridge.

[Guest guest]

Hello Cat here: Lori this is in regards to your needing foot surgery I

have not had that done but I did go through two neck surgeries and I

would honestly get 2 more opinions if I were you. Everyone is different

but I can tell you

that these had somewhat of an adverse effect on me . The pain I have

became more chronic andthe numbness and tingling got worse. Again

everyone is different but I.m a firm believer in 2nd and 3rd. opinions

keep me posted and good luck.

Cat

CSCluv**