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.
Hello, Silly me! I thought it was just me and no one would ever display the thrashing of the legs like me. And, after all it was during the night so no one would see me. But, soon I was to discover that it is a full blown disease of its own......Wow. I am still coming to grips with the fact that I need to know more about it.
Kind of a relief to find out you're not nuts, isn't it! Someone here posted recently about just having their 6 yr old son diagnosed. Nice that he won't have to go thru his whole life before finding some relief.
Welcome, take a look around, read & educate yourself, and ask any questions that come to mind. There's a wealth of information and good will here. Best,
I was just perusing through the memberlist and saw your name. I noticed you have never posted so I did not send you an e-mail.
If you want to see our new questionnaire that is the basis of a possible presentation in November at the National Meeting, I will be happy to e-mail you it as an attachment,
We need more people joining us who are just starting on this tortuous path!
though I would say thank you for the welcome and for the news that a younger person has had the doctors looking into RLS as a potential problem. I know now that I have had this problem for years. As a child I would wake up crying at night with the "leg aches" and my dad would rub my legs with linament. The doctor told my mother it was "just growing pains". Now at 60 I wonder if I am still growing. I am only 4'11" so I need to grow!!!!
Pat,
I'm sure your not growing, nor am I, but it's shrinking pains for us now.
You can see my bio at the end of this post. I'm a lifer too. 40 yrs now.
Growing pains are my first vivid memory, I could fill a hot water bottle by myself by the time I was four.
But I'm starting to fell cheated or I'm a dipwad.
I read of parents and spouses rubbing and massaging legs and I've gotten none of that. I never thought to ask someone to do that.
Hmmmmmmm think hubby is getting a new chore on the honey do list.
I am so glad that I am not the only KID who has the history of the RLS that was undiagnosed. I am sorry you did not get the parental careing. My mom was ugly to me but my dad was a sweetie. Later he would get "the chills" and we would run and wrap him in blankets to warm him up. He died at the age of 96 can you imagine? My mother is still alive and she is now 96. So, if that's an indicator I have a lot of time left to kick! You know, I was just looking at my baby water bottle. I wonder if they even still make them! Do they?
OH MY, BY NO MEANS DID I MEAN TO INDICATE THAT I HAD NO LOVE AND CARE. My Mom is one of my heros.
I'm not offended that you thought that, so don't even think that. Don't think you said anything wrong, you didn't. It's so hard to get a good read without the voice or eye contact on the internet. If we were in front of each other I would have said it all with a smile. I was just joking around about get people to rub my legs, never thought to ask.
I just happen to be one of those people that do it for myself. I was like that as a kid too. Never occured to me to wake my parents up, I just handled it myself.
I wish it had a name 40 years ago too....Can you even think how differently we would have been living all this time.
I think I would have been a lot more comfortable. But honestly, I never knew there was anything wrong. One night a nurse woke me up as she was making bed check in the hospital. She said "Pat, are you alright"?I resonded with "yes, do I not look alright"? She told me that I was thrashing. I had no idea. Then I began to notice that at night I kicked and stretched my legs to get comfortable. I never really had trouble until the FP (family Practice) doctor took me off Mirapex and started me on Sinemet. He said I had Early Parkinson's Disease. I did not agee with him so got a refferral to Dr. Kabil Sethi one of the best Movement disorder specilista in the country. He diagnosed me as "Classic" RLS and said the Sinemet was rebounding. He is taking me off of it and gave me Requip and started me on it slowly. I am feeling much better but the legs give me fits at times during the day. I am determined to stop the Sinemet so I am toughing it out.
Good idea to get off Sinemet. The guy who made you change from Mirapex to Sinemet was not very educated in RLS. They are all in the same group but Mirapex and Requip are straight dopamine agonists while Sinemet is a precursor with bunch of side effects in addition to augmentation. Requip will help you eventually. It is possible that you need an aid from one of the other groups. Those include either a sedative, or an opioid or other anelgesic, or one of the anticonvulsives (if you have burning pain).
Thank you for volunteering to complete the questionnaire. I am telling you mates (a little Australian lingo here) that this is one of the most exciting, mentally challenging projects I have been on, I handled a few in the past 60 years (yes, I started early ).
If you have any questions, you know whom to query?! US!
Last edited by jumpyowl on Sun Aug 29, 2004 11:09 pm, edited 1 time in total.
You are most welcome for the questionaire completion. I was able to sleep last night without the sinemet during the night. But this morning I am having some difficulty. Maybe need to take 1/2 a sinemet to calm down the jerky legs.
I hope tonight I can sleep all night without the sinemet and just take the requip......
I'm sorry I have taken so long to welcome you, Pat! I usually do it sooner than this! I'm glad you've found us, but sorry you have RLS! I know how you feel, finally knowing that what you have has a name--and knowing that you aren't "crazy"! I've had this lovely little "thing" for 20 years, and isn't it fun? Ha! Seriously, I AM glad you've found us, because here, you'll find so many good people (you have already) who are ready, willing and able to help you in so many ways. You've already found Jumpy, Becat and Heronak (three of our best!) and there are many more, each with their own unique gifts. We are truly a family--we all help each other. As Becat once said, we "make a big fist" to fight this thing called RLS. When one of us is down, the rest of us run to his/her rescue to listen and and "row the boat" for awhile (again, to borrow one of Becat's famous lines). That's what we'll do for you. You'll get good advice on pharmaceuticals and we have excellent researchers. Some of us are just cheerleaders! But we're a team--a great team and we're glad you've joined!! Welcome to our family! By the way, if you so wish, we are asking people if they would fill out a biography under New to RLS/New Members and Current Members Please Help. You can see where mine is listed under my signature. Thanks!
thank you for the welcome note (letter) Jan,
i would love to fill out your survey so will go look for it. I am glad to be here too. I am a friendly creature and stay by the keyboard a lot because that is the only way my husband and I can communicate when he is out to sea. So, I am able to respond to any email messages quickly. Keep in touch.......
Hey--I check in often, so I'll be sure to catch you. I'm a friendly person, too. Feel free to email me anytime you feel lonely. And, I'm glad you're going to keep in touch with us! Again, we're glad you're here!!!
It is possible that you need an aid from one of the other groups. Those include either a sedative, or an opioid or other anelgesic, and one of the anticonvulsives (if you have burning pain).
We (you and I) have to figure what additional medication you should take to improve the performance of Requip. (Then talk your doctor into it)
Do you think a benzodiazepine would be effective as a sleep aide or possibly an anticonvulsant such as neurontine. I would try the former first or even an analgesic. (But definitely not one of those sleep aides such as Tylenol PM because of the antihistamine).
I am so glad to be on something other than the Sinemet, that I will be content for a bit. I was on neurotin years ago for Migrane Headaches, among other things, but was taken off of it.....don't know why. I am satisfied with the requip right now at least to see how long it works.....
But, soon I was to discover that it is a full blown disease of its own......Wow. I am still coming to grips with the fact that I need to know more about it.
