ANYONE NEW PLEASE ANSWER

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

anyone new please answer

Post by ctravel12 »

Hi Capsfan. So sorry that you have rls, but glad that you found us. We have some excellent forums that you can read and gives alot of good info. Look on the New to RLS "Managing RLS" Are you taking any kind of meds now? I hope that your dr is able to help with the rls. I have rls and have had it for 15+ years and after different meds I finally found one that has kept it under control. After having bad bouts with rls, I finally found a Neurologist that actually knows about rls and that was a big help. I know what you mean about needing sleep. Being deprived of sleep is a horrible thing to go through. I know other members on the board will post to you also. Let us know how it goes with your dr tomorrow. Welcome aboard.
Charlene
Taking one day at a time

Capsfan
Posts: 5
Joined: Mon Sep 25, 2006 7:55 pm
Location: Stephens City, VA

Post by Capsfan »

Thank you for replying ctravel. I have not stopped reading posts since I found this site. I am very thankful for it.
After reading different posts I have found some interesting information, that has lent alot of insight to my problem.
At the risk of people judging me as a drug addict, I would like to share a revelation. First of all: I am in my thirties, I have been married for 12 years (I still love my wife more than ever today), have three great children, have a proffessional carreer, and am an avid exerciser, however I have smoked pot for a long time. At night. I think I have RLS since I can remember, however, not that frequently. Recently I have stopped smoking pot(about a month), and my RLS has become unbearable. In looking back, I can pinpoint most of the times that I have really suffered from RLS for long periods of time. They just so happen to be at the same times that I was either out of Marijuana or had quit for some period of time. In all of those times it has gotten really bad, but I never thought the two were related. Now after reading some of these posts, I see that they may be. I am not proud of my "drug" use, but thought that my experiences might be helpful.

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

anyone new please answer

Post by ctravel12 »

Hi Capsfan. Do not consider yourself as being a drug addict. I am on clonazapem which is a control substance, but if this med helps me I will continue to use it. You are the one that knows whatever works best for you. I am glad that you are continuing to read the posts. I try and read the old and new posts almost everyday. I hope that whatever you use it will help you get your rls under control. What a wonderful thing that you said loving your wife more than ever today. That is great.
Charlene
Taking one day at a time

Capsfan
Posts: 5
Joined: Mon Sep 25, 2006 7:55 pm
Location: Stephens City, VA

Post by Capsfan »

ctravel,
Thanks for not judging me. Would you (or anyone else for that matter) have any tips for me as far as my "interview" with my doctor tomorrow?
After reading many posts it seems that there are alot of doctors that "don't get it". I definitely meet the four criteria items. Uncomfortable feeling, relief with movement, happens while at rest, and mostly in the evenings or at night (almost every night now). I constantly am moving my legs and feet without even being aware of it. I never understood why I hated to fly or sit in a movie theater or ride in a car (not drive). Should I just tell the doctor all of this, and hope he is aware of RLS and how to treat it, or is there anything specific I should say to get a positive (and more helpful) reaction. Do I request a referal to a neurologist? I guess I just fear that if I get a doctor that is not too familiar with, or has never treated RLS, that it is going to take a long time before I get any relief. Any help would be greatly appreciated. But, more importantly thanks for the sympathetic ear (or eye). It helps. I guess misery really does love company. :D

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

anyone new please answer

Post by ctravel12 »

Hi Capsfan. I myself found a neurologist who actually knows about rls. I remember seeing someone post about typing in the neurologist in your city/state and if they are on the list then they are knowledgeable with rls. My neurologist was on the list and that made me very confident.They only thing is that I cannot remember where I had seen it. I guess that I am not much help on that one lol. I am sure one of the members reading this will know and will post it to you. On the forum that I told you about New to RLS "Managing Rls" there is medical info from the Mayo Clinic Algorithum (not too sure if that is the right spelling) anyways if you could copy as much info and bring it to your dr then that would be a start in the right direction. Bring in as much info about the rls as that would definitely help. You had mention about sitting, driving etc. was misery. My husband and I had to cancel a trip this past August as I could not ride in a car for any lenght of time before the rls started raging. So I definitely understand where you are coming from. I hope that you can find some relief real soon. Let us know how it went with your dr. I hope that this helps you.
Charlene
Taking one day at a time

johnto6
Posts: 14
Joined: Tue Sep 05, 2006 1:32 am
Location: Krum, TX

Post by johnto6 »

I know you need sleep, as I have spent many frustrating nights in the same boat as you....all of us here have. I have found that sometimes, not always, but sometimes I can sit in my rocker/recliner and (i know this is going to sound silly) whichever side is bothering me that night, I put my other lleg, my good leg, up under me and rock using my foot of the leg that's bother ing me. I rock forward, pushing out with the bothersome foot and drag it back toward the chair on the carpet. Sometimes I rock like that for an hour, usually turning off the television, and then almost going to sleep. That seems to help until my Requip kicks in. I hope this hasn't sounded too ridiculous to you....just trying to help. If you try this, let me know if it works for you, and I will be happy. I hope you hae a peaceful night.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

I am always happy to read the replies in this thread.
We all find this place the same way, everyone just finding out about RLS and doing their own research. Cool.
Caps, No judgement from me and I doubt many here would judge you for anything that works. I wish it were legal for many medical reasons, but not one soul here would begrudge you comfort and relief. At least I've never found anyone that would.
I just saw that your going to the doc tomorrow and wanted to say good luck, hang strong and remember that this doc must be a willng partner and a good, trusted communicator. That will be key, as we tend to be long term patients.
Please lets us know how it goes.
Hugs and the moon
Lynne

Capsfan
Posts: 5
Joined: Mon Sep 25, 2006 7:55 pm
Location: Stephens City, VA

Post by Capsfan »

Well, I'm back from the doctor...and pharmasist. The doctor, or should I say nurse practioner(?) diagnosed it as RLS. I purposely didnot tell her what I thought it was, to see if she would accurately diagnos it...she did. She basically interviewed me, then checked out my legs (for numbness and circulation issues I think). Then she said that she believes that I have RLS. She didn't seem too concerned. I was hoping she would have been a little sympathetic to the fact that I'm only sleeping about 4 hours a night, but that didn't seem to "bother" her much. She perscribed Nerontin (generic form: Gabapentin). One 100mg pill an hour before bed. Then she said it's going to take a week or two to be effective. That's gonna be a LONG sleepless week or two. If anyone has taken Nerontin, I would be interested to hear about the side effects. Is it also a sedative? I hope so, because I need sleep. I was curious that she didn't want to check my blood for iron deficiencies, as I've read that can be a cause. Also I read that Nerontin is usually perscribed for painful RLS, and I specifically told her that I don't have pain, just really uncomfortable.
Thank you everyone for all your help, I appreciate you all very much.

tazzer
Posts: 626
Joined: Fri Mar 10, 2006 6:36 pm
Location: Northern Virginia
Contact:

Post by tazzer »

welcome to the site capsfan! first off, i don't hold it against you for the weed thing, because i am one of the ones who don't think it should be illegal, but thats another can of worms. i can honestly say that with this pain that drives you nearly insane, i am truly not above trying anything to get rid of it. it's so hard to find a dr who will listen to you and believe you to begin with, and that is what frustrates most rls patients to the brink of insanity. as i am writing this i have a sinus headache that could split a brick, so i hope what i am typing makes sense! i am glad you got some meds for your rls, but being that she is just a pa, i would still try to locate a dr in your area that knows something about rls. luckly the pa i saw when i was first diagnosed sent me to an orthopedic spec. to make sure i didn't have any nerve damage. the orthopedic dr, when no nerve damage was found referred me to a neurologist to see why my legs hurt so friggin bad, and he has taken care of me ever since. i was lucky, alot more than some of the people on this board that can't get the meds they need from uninformed drs. just to let you know what meds i take to give you some more reference... oxycodone generic for oxycontin, (pain)clonazepam generic for klonopin (sleep) caridopa/levo sinemet (rls) like i said before welcome to the board, sorry you have to be here, but glad you found us. i think we are a pretty lovable crowd! lol

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

walkindafloors
Posts: 110
Joined: Tue Jul 18, 2006 4:54 pm
Location: Virginia

Post by walkindafloors »

I'd second that motion - back in the day when I could smoke weed I remember it being the only time I ever really just sat still and relaxed (not only do I deal with the rls 24/7 but also ADHD) so this was a real miracle for me. I live under a microscope now that my husband has been called into the ministry so my connections these days wouldn't understand, I'm afraid. Don't feel bad for doing/using whatever works for you! So many nights I'm up 3 and 4 am wishing I had a joint cause the meds work sometimes and other times...not. Like you, this board has saved me many a nights, helping me to stay sane and feel not only "normal" but never alone anymore!

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Amen God Bless the 80's! LOL
We may all have to move to Denver LOL> :shock:

b_rwhite5
Posts: 86
Joined: Fri Sep 29, 2006 2:02 am

Recently Diagnosed with RLS

Post by b_rwhite5 »

I found this site a few days ago after I was diagnosed with RLS. I was searching for more info on RLS. I have had leg pain since I was 13. The doctors all dimissed it as growing pains. I am 26 now and I have been suffering with severe pain for 6 years now. The pain got worse after a car accident. I started having back pain and pain mostly in my left leg. I started seeing a chiropractor and took pain meds for a while. The meds only worked some and most doctors never took me serious. One doctor thought I had a ruptured disc or a pinched nerve. The past 3 years the pain just got worse. My husband said that I would kick in my sleep and my whole body would jump. I couldn't sleep but an hour or two at a time. Finally, I found a wonderful doctor who took my complaints seriously and ran some tests. She told me just 3 days ago that I have RLS and perscribed a new drug called Lyrica. I only take one 25mg pill at night, but I can already tell a big difference. I haven't hurt near as bad and I finally got a decent nights sleep. Most of my pain is in my left leg. Occasionally, I have pain in my right leg. The pain generally starts after a long car ride or sitting or standing in one place for too long. If I get up and move around, the pain usually gets better. Does anyone have similar symptoms? Does anyone else take Lyrica? If so, has it helped you?
Thanks in advance for any replies or advice.
Rebecca

tazzer
Posts: 626
Joined: Fri Mar 10, 2006 6:36 pm
Location: Northern Virginia
Contact:

Post by tazzer »

welcome R, if you go back and read on the posts on this site, you will find alot of people with your same symptoms. my symptoms also get worse after a long car ride or sitting a long time at work. i think beanie lee has been taking lyrica. check out those post


dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

b_rwhite5
Posts: 86
Joined: Fri Sep 29, 2006 2:02 am

Post by b_rwhite5 »

Thanks dee, for your fast reply. I took your advice and read some of the other posts. beanie lee did mention she was/is taking lyrica. hopefully we will get a chance to talk. Thanks again!
Rebecca

GRNMOUNTGRL
Posts: 28
Joined: Thu Sep 28, 2006 3:25 am
Location: Illinois
Contact:

Post by GRNMOUNTGRL »

Hey R and all...
This is my first post here but I wanted to get connected with everyone so here I am. I am taking Lyrica and Requip. I find that I can go for days with very few symptons and then all of a sudden I go for a week with the tightening and spasming going about 85% of my day. Such as this week. I drive alot for my job and there are times I just drive and cry as my leg is jumping off the acelorator. I wonder if there is any medication that will control this 100% of the time. There are times I just don't think this is all worth it. But, I hang in there. My mother had RLS and since I get everything she ever had, I was sure to get this too. Back when my mom had it, no one knew what it was but I will never forget her constantly saying that she could not sit still and her getting up and walking. I don't know how she did at night. I actually have no trouble sleeping at night, the Requip puts me to sleep within 20 minutes of taking it. I take lessor doses during the day so that I don't fall asleep, but I often do find myself doing just that. Which is bad when I have to drive alot. Oh well, a girls gotta do what a girls gotta do.

Post Reply