New here, thanks for the site!

[SquirmingSusan]

Wow, I was up all night last night (again, it's been a repeating pattern for a long, long time) and found this message board. I have learned so much and want to thank you all. You have explained so much.

I'm sure I've had RLS all my life. When I was a child, I often had what my parents referred to as "growing pains." These were severe aches and pains in my legs that moved around and hurt so bad that I often couldn't sleep.

Most of the squirming feelings have been in my left arm, and it used to be that a couple Tylenols would help me sleep.

I was on valium for chronic vertigo for 10 years (5mg at bedtime) and I just got tired of fighting the doctor for it about a year ago. I quit cold turkey; no withdrawal symptoms at all, and the vertigo didn't come back. I have been so thankful about that.

But it seems that the valium effectively suppressed my RLS for all those years, because it's back.

I haven't been able to sleep at night for a few months now. As soon as daylight hits, I can get to sleep. Last night I took 3 L-Tryptophans, a Unisom, a Lunesta, some Tylenol, and I can't remember what all. And all it did was make me squirm so much worse. It's like trying to sleep when someone is tickling my whole body.

And so in my sleep-deprived, squirming state, I found this site. I have learned so much already. I hate to even discuss this with my doctor because I've spent the last year getting my antidepressant dose adjusted (and now I might want to switch to Welbutrin ) and have needed repeated dose adjustments for my thyroid. And yes, I chronically run anemic due to heavy periods, and have been slacking off on taking my Iron pills. I guess I'll be better with that now.

Someone has in their signature, "I feel like a science experiment."

ME TOO

Ah, and it's bedtime for the "normal" people of the world. Maybe I won't even try to sleep until the early morning hours.

Is there a resource in here somewhere for finding a doctor who isn't squeamish about prescribing meds that work? Mine is totally allergic to prescribing controlled substances. But the valium seems to have helped for all those years. Those Parkinsons drugs sound scary to me.

Thanks again for being here.

Susan

[ctravel12]

Hi Susan. Welcome to this board. So sorry that you have rls but have found a good place to talk and get support. There is a good forum called "New to Rls" Managing rls. It has alot of good information which is very informative. I know other members will post and give you some good advise too. Keep us posted on how you are doing. I hope that you have a restful evening.

[ViewsAskew]

Sounds like you got up to speed quite quickly! I love it when I hear that all these posts and this info actually helps someone.

Per the doctor? It's truly trial and error. SOme of us get one the first time. Other times? We just keep trying. It took me several tries, but my doc now truly is an angel of mercy. Calling and talking to the nurses can be effective - they often know how well versed the doc is in RLS (I told them that I was a difficult case - I wanted someone who really knew their stuff!) and the nurses actually would refer me to other people! They also often know if the docs will prescribe more than one type of medication.

Oh, per the DAs? They really aren't scary - no more so than many other meds we take for various things. We have to remember that the most of the people who post here are the small percentage that have troubles with meds. 80% (so they say) of those taking the DAs have few or no problems. Even though I had problems, I'd still say it's the most logical place to start. They do not cause the dependence that some of the other drugs do. BUT, since you know that you have no problem stopping the benzos, you are probably in a safer place to take them for long term.

[SquirmingSusan]

Thanks Charlene and Ann.

I tried to call my primary care doc today, but got the assistant's answering machine. Left a message asking if my doc will treat RLS, or if I should see a specialist. Haven't heard back yet (I like my doctor, but getting in touch with her can take days).

Meanwhile I called a sleep medicine doctor in my area and GOT AN APPOINTMENT THIS WEDNESDAY.

Most of the available appointment were in the morning (go figure), but I actually got one for the afternoon. I hope this guy is good.

I feel like such a hypochondriac.

Susan

[jan3213]

Susan

First of all, you are not a hypochrondiac, although some doctors may make you feel like one. A lot of us have felt like that, but--as you know--RLS is real and horrible.

You got some great advice from Ann and Charlene. I am also glad you found us, but so sorry you need us. We are like a family here and always try to help each other as much as we can.

Per the DA's, as Ann said many of us take them with success. I am one of those people and I don't experience bad side effects. Hopefully, the doctor you will be seeing will be able to help you.

Please keep us posted and again, welcome!

Jan

[ctravel12]

Hi Susan
That is true what Jan said. You are not being a hypochondriac. I am glad that you got an appt. with the dr on Wed. Let us know what he says. Have a nice evening and keep posting to us.

[tazzer]

Hey Susan! Welcome!

I am the one that feels like a science project! I made the same mistake you did, taking the over the counter sleeping stuff. What I didn't know at the time, the antihistime in most of them, makes your RLS worse! I used to eat tylenol pm like candy and couldn't figure out whyyyyyyyyy my legs hurt worse and i couldn't go to sleep, until I found this board! Thank God! If there is one good thing about RLS this board is it! The only thing that I can take for a cold is nyquil, now some people can't handle the medicine in it, it makes their legs worse, for some reason it doesn't bother me. Go figure! I have never met a soul on this board and I have only talked to Lynne on the phone, but I swear the regulars on this board, i feel like I know them, it's hard to explain. anyway welcome to the board good luck at your doc appt. Like Ann said about the DA's and other meds, its trial and error.

dee

[SquirmingSusan]

Hey all, I saw the sleep doctor today. He's a real gem. Kind, caring, attentive, and most of all - he believes me when I tell him my symptoms. He said it's up to me - if the Requip works, then we'll stick with it. If not, we try Mirapex, and then if I'm still having troubles, on to the neurontin, opiods, benzos, or whatever works.

He even gave me 2 week starter pack of the Requip so I don't need to try to split those darned weird shaped pills. So far with the Requip I get a tiny bit of nausea, and a feeling like someone hit me on the head with a board. But I did sleep for 2 hours last night. Really restful sleep.

He also handed me a couple months worth of samples of Ambien CR and Rozerem.

And the science project continues...

[Hos]

He'll do "whatever works." And "...months of samples?" Oh man, I just drooled on my keyboard. Congrats!

[tazzer]

hey he sounds like my neuro! congrats on the great doc!

wipe the drool up hos you might electrocute yourself!

shut up lynne!!!

dee

[GRNMOUNTGRL]

Hey all, Good to be here again. I learned today from this site that I may get help by taking my Cymbalta in the evening, so I will try. I learned that there is a new med, Mirapex that has been approved for RLS. I learned today, by having some minor surgery for a lump in my breast that was removed that I probably don't need a sleep study now because my surgeon watched my legs go off "every 30 seconds." I was in surgery for 1 hour and 10 minutes. I also learned that my doctor is more amazing then I thought she was because she has given me my Requip and Lyrica samples, along with my Cymbalta for free for the past year. My RLS affects me everyday probably 60% of each day. I sleep wonderful at night though because the Requip puts me to sleep like a baby, and I stay asleep. Which is great now that I know my legs go off every 30 seconds.

I too, hate this disorder and wish I could have a normal life. Oh to go to a movie or fly home to see my daughters without the agony I know I will be facing.

For those of you who are new here, this is a great place to learn and get support from people who really understand.

Rory

[ctravel12]

Hi Rory it is good to have you back and sooooooo glad that you are sleeping good. That is so true about this place being a great place and the wonderful support that we all get. I do not think I would of gotten through some nights without this site. Thanks to everyone.

Rory, I understand about going places as I was like that. I used to take Requip but did not agree with me. LIke we say what works for one may not work for someone else. I am so glad that it is working good for you. I am sleeping much better too and do not have any episodes during the daytime anymore and hope that it continues. I am on .5mg of clonazapem and so far it is working good.

Keep on posting and let us know how you are doing. We all care how everyone is doing and learn so much from each other.

[jan3213]

I'm so happy that all of you feel the way you do about this forum. That's the way I feel. It has saved me so many times. Some people may not understand the bond we all have, but I know that it's there.

Some members come for awhile and leave and that's fine. We are always glad to see them back if they decide to come back. Others stay for a long time. Either way, it's a great place for support, comfort, information and friendship.

All I can say is I'm so thankful for this forum, not only for me, but for all of you and those who will follow. I'll never forget when I actually found a place where there were so man people just like me--where I wasn't the "crazy" person--where I didn't feel like a hypochrondiac.

I hope you all get some rest tonight!

Jan

[ctravel12]

Jan I am also thankful for this forum. Like you, it has also saved my life or should I say my sanity It is such a good place to talk, vent or whatever.

I love to hear everyone share their stories. I have learned so much and will continue to do so. Like I said my legs are doing good and hope that it stays that way, but want to be here to welcome all the newbies and just be a good support to anyone who needs it. Maybe I will just say just the one thing that will help them.

It is such a wonderful feeling if you can help someone. I know I feel so lucky to be a part of this family and the friendship that we have here gives me a wonderful feeling and know that you belong and they welcome you with open arms. I love you all.

I ask God everynight to keep my family and friends of rls safe everynight and please give them the relief that they dearly need.

[GRNMOUNTGRL]

Charlene,

One question, why does the Requip keep me asleep at night when it has been proven that my legs are spasming every thirty seconds? During the day the Requip does nothing for me.....Wierd Huhhh.

Rory