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.
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Post by tbonimaroni »

I'm new to this and I'm seeking information on what to say to my doctor about my symptoms. I told her that I had insomnia before and she changed my allergy medicine prescription but it didn't work. I didn't realize I had rls until I red about it on an insomnia info site and then did a search on rls and got this site. I have all the symptoms and it's keeping me up until about seven am every night. :(
Any advice would be of great help. I'm thinking of just telling her I have creepy, crawly sensations in my legs that keep me up. I have some pain too.
Thanks :)

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Post by soph »

I'm new to this site too but have known Ive had RLS for years. There are lots of doctors that dont know about it so I think you should just say to her that you think you may have something called restless leg syndrome- and then desribe the symptoms.

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Post by ViewsAskew »

tbonimaroni, doctors can be tricky! They don't always like assertive people who may know more about something than they do. Whatever you do, try to find a way to approach your doc so that you come off as asking for help, even if you are telling him or her what you need. I think. . .

At any rate, many people take articles and info with them as backup. You can just tell her that you found some info and did some research and by golly, you're sure you know what the problem is. Then say that you've got some info with you that you read and helped you determine what it was.

Here is a thread with lots and lots of good links to articles, a treatment algorithm, and much more.


Read them, print them, get an idea of what you want to happen next, and hope for the best. If she doesn't listen, then try again or find a new doc; many people here have had multiple doctors because we want someone to believe us and give us the most appropriate treatment.

Good luck!


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Post by ksxroads »

The information on this website and from these ladies is your best line of defense. BEFORE going into the Dr PLEASE print out the DRUGS TO AVOID and check it against any drug your dr might recommend.

Foolish woman I r - I went in gave the Mayo paper and I truly believe the Dr only heard I wasn't sleeping, disregarded rest prescribed Elavil and my problems escalated from there.

Continue to gather information - If at all possible take someone with you. Lack of sleep does not help our brains to function normally! At least in my case.

Ten days later I am back to where I was before the Elavil. That is a blessing in itself. At least hot rice bags, meditation, good music, working in the garden, weeding flower beds is somethings that does not make it worse, but helps. My mind is more at peace as I know I am going in the right direction.

I have an appt to interview a new doctor on Monday. An appt to see a neurologist on the 31st. And am on call to interview another dr. With the insights I have gleaned from these wonderful people here I hope to be able to find a Quality of Life I am willing to accept.

Pain is not an option!

Blessings to you and your search. Keeping you and all the others in my thoughts and prayers. Hazel

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Post by alisha0103 »

Hey guys. I'm Ali. After about 15 years suffering from this, I finally heard about RLS a few weeks ago. I went to my doctor and she said the treatment for RLS is a drug that is used to treat Hodgkins disease which is to strong for me so she prescribed Elavil 10mg once a day. After reading some comments on this board and reviewing the advised links on this board, I am more frustrated than I was before I was educated on RLS. I wouldn't even know how to approach my doctor and tell her..."Oh, by the way...did you know Elavil sucks? I need something different." Any ideas on how to address this issue w/ my doctor? Or do I continue to take it till a follow up and then address it? Or maybe I should just retract to my self-prescribed meds. 10 pound leg weights at night and a couple of Tylenol PM's. :?:
If you don't believe you can find a way out, you become the problem. If you believe you can find a way out, you've solved the problem.

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Hi and welcome

Post by becat »

Hi Alisha,
Nope, your doing the right thing. If you know you have RLS for sure and you've got the info about Elvail in hand.....fight for what you know is right.
The twist here will probably not make you much happier. Sorry :?
None of us react to the same medications or cocktail of medications the same way. It's been most people's experience that that medication causes RLS problems. Maybe that won't be the case for you. But you know what the chances are and your opinion counts.

For example: Tylenol PM is also on the RLS medications to Avoid list.


I'll give you a link to look at what's been posted. Also if you get a RLS medical alert card from the Southern California Website:


or the Great San Antonio Website you'll find a list of medications that we should not use. The Group Leader there, Barbara Acosta thought up this medical alert card. All that is asked, is a minor charge (2.00) and a stamp for shipping. You'll get 10 wallet size cards. All the proceeds go back into her Group fund.
I've given cards to each of my doctors and asked that they be attached to my file.
About talking with your doctor.....It's easy to be brave here, in print and another when your in that appt.. I understand that more than you'll know. But it came to me last year that We, as in you and I, everyone else, are the ones taking these medications and living with the results.
I had to teach myself to stand up and say no I think the research shows that is not the best choice. Sometimes, just not the best choice for me.
So you call back and fax the info to your doctor. Get another appt. and take it to the doctor. One way or another that doctor needs to know that medication is not one of the listed or more common things to try.
You might also want to give the doc a copy of the RLS Algorithm, from the Mayo Clinic. This is a guide to diagnosis and treatment.
http://www.mayoclinicproceedings.com/in ... D=744&UID=

Your RLS education may not make you happy right now, but your it's your best defense against any doc that treats you. When you know your facts and have proof, well, let's say it would be hard to fight you. Right? Your not alone, although RLS is slowing becoming something that docs know about, not many know how to proceed in treatment.
I had to tell myself, that I was worth a good Quality of Life and Quality care. I had to make that happen.
You've got us and we'll help any way we can.
Glad you found us.


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Post by alisha0103 »

Alot of really good suggestions. Noted and appreciated. Thank you. :)
If you don't believe you can find a way out, you become the problem. If you believe you can find a way out, you've solved the problem.

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