Newcomer....I am so confused and frustrated!!!

[Anonymous]

Hello,

My name is Jayme and i have RLS? I feel like I am standing at a podium in front of a big group announcing that I am crazy.

In August of 2003 I fell and bent my coccyx (tailbone). I was on pain killers and injections until i finally found a doctor who could go in and remove my tailbone. Unfortuneatly, the surgery is very painful afterwards for months. So to make a long story longer, , I was on pain medicine forever and when i finally got off the medicine is when I started having problems sleeping. I assumed it was a "withdrawal" from the narcotics. After several months off narcotics and continuing sleep problems, I started to really examine why I couldn't sleep. I visited with my doctor and she prescribed Ambien. Didn't work!!! Actually made it worse, if that's possible. I was having a hard time conveying to my doctor what I felt like when I tried to sleep. I finally got on the internet and started poking around with sleep disorders. When I found a decription of RLS, I almost started crying from excitement that now I could finally find the words to help me decribe what I was feeling. I went back to my doctor and told her that I thought I had RLS and why I thought this. She prescribed me 10mg tablets of Amitriptyline. She told me to take as needed. This medicine has worked for me. I have been taking it now for a little over 2 months. For the first 6 weeks I needed to take it, but there was a 2 week period where I didn't have the "jumpies" when I went to bed, so I didn't take it. But for the last couple of weeks I have needed it again.

I am pretty clueless about RLS in general. The only information I have been exposed to is through this website. I just don't understand a lot about it. Is this a permanent condition? Is it normal for it to come and go like this? Is a general practioner (my doctor) able to "treat" me? It seems from a lot of the postings I have read that a lot of people have specialists. Is it to my advantage to see a specialist or stay with my general doctor? I also have noticed a lot of people have actually done sleep testing. Is this something I should have done also?

From what I understand, there is no cure or specific medicine for RLS. So is the medicine I am taking safe for long term use (or any medicine for that matter).

I am so sorry that this is so lenghty, but thought maybe someone would be able to help.

Sincerely,
Jayme

[becat]

Hi Jayme,
Well Welcome to the board. I know you'll be able to find a great education about RLS on this board.
So many of us at different levels and reasons why we have it.
Yes, RLS can be brought on by medications, but I will ask you......
Did you have growing pains as a child? That and the fact that any others in your family may indicate a genetic form of RLS. If not, than your may be secondary brought on by something else. Either way it's here now and you need to get to know it. I think what your talking about it coming and going is important, you might be able to see a pattern with yours. Stress can often bring it on hard and strong. Maybe something else that triggers it.
No there is no cure and it seems to be a progressive disorder for most of us. Many of us use medications or even a combination of medication to control or manage RLS. If your medication works for you, then stick with it. My advice on medications is research them. Everyone is different and response to different things. You'll also find that knowing about the treatments and medications allow you to make the best choices about treatments.
I'm listing a thread our dear Ann started, it has some awesome links to different things that can help you get a good start.

http://rls.org/phpBB2/viewtopic.php?t=549

The first is something you GP can use as well. It is the RLS Algorithm, a gudie to diagnosis and treatment. Any doctor is fine to help you, as long as they know about RLS. As you become more educated you be able to see if your regular doc is right for you.
Yes, many people go to specialist, mine is a sleep doc.. You might get some good advice and insight about your problem with a sleep study. Many have found it helpful. There is a listing of doctors that may be close to you that should be able to help. They are at the link below.
http://rls.org/provider_directory/index.html
I'm so glad you found us. Never be sorry for chatting it up around here. Heck what are we going to read those nights we aren't sleeping......?LOL Just kidding, it's what we all do around here. We learn from one another. Hope tonight was a good one, welcome to the board.