Restless Legs Syndrome (RLS) Discussion Board

Have not been on here for awhile. A month or so back I was on my way to the hosp. for my legs (I HAVE THE RLS W/PAIN LUCKY ME) and fell asleep at the wheel and totaled my car and a light pole, the city is making me pay for, thank God no one but me was injured. Then my computer crashed.
I finally after 3 yrs. got a referal to a neuro. for the back injury I suffered in the accident, well I brought up the RLS and told him how painful it was and he gave me a lecture on drug abuse and he could lose his liscence if he gave me anything, then to top it off my GP's office called today and told me that I will never be prescribed narcotics and if thats what I am seeking, to find a new DR because she will not tolerate this. So the neuro. cut me off the requip 4mg. and the clonazapam 2mg. he gave me requip extended release 2mg. and that does not work for me.
He also said methadone was for drug addicts ( I think when I mentioned that he sized me up as an addict) I brought the mayo clinic alg. and he said it was to old to be accurate.
Does anybody have any ideas of what I can do. I am not an addict but norco brought me relief in the past.
I feel very hopeless oh but I did get Elavil I think there trying to kill me lol keana

The first thing I would do is file a complaint with the state medical board. The doctors have no right to treat you that way! And the fact they won't look at the Mayo Clinic Algorithm means that they are ignorant, and are choosing to stay that way.

Then I would look for a doctor who will actually work with you to treat your symptoms. Those doctors can be hard to find, but they have to exist somewhere. Your best bet is probably a pain clinic. I wish I could tell you that we have members of this forum in Chicago who have great doctors, but that is totally not the case.

Hang in there and keep looking for a good doctor.

Looks like you got into the board, Keana. That's good.

Do you have a family member, friend, mentor, teacher...anyone who would be willing to go with you to a doctor's appointment and act as an advocate for you?

I agree with Susan; no doctor should treat a patient the way you were treated. I've also found, the hard way, that asking for an opioid is a sure way to get them to think you're an addict. It's not fair, but it's often the case.

The algorithm is not too old to be accurate! It was developed just a few years ago, not fifty! Not enough has changed since it was created to need an update.

I wish I had a solution, but I do not. If you are limited in your picks because of insurance, the best you can do it change doctors once a month, spend the co-pay, and keep trying until you find someone who will work with you. But, too many changes and they can say you are drug seeking.

That's why I suggested an advocate to go with you. Someone who can ask questions and act in way to clarify why you are there, what you need, etc.

That is exactly what the office manager said when she called. She seen that I had seen 2 other docs. and was trying to get narcotics. Now I'm scared to even go to another doc. because of what they may have written in my records, I wish I could get whatever they wrote removed.
They could do a darn blood test to see if I'm on anything but they jump to conclusions.
No there really is no one to go with me

Are you in a position to take a trip to some place like Johns Hopkins or the Mayo Clinic ?

Because you might want to start there, and at least try to get an appointment, and I guess it wouldn't help to tell them you are desperate, and when you tried to show them the algorithm they called it useless and accused you of drug seeking, etc..

As for the "doctors" doing this to you... a local news story on them is never out of the question if you think it might be worth the public attention to go that route.


And YES, go to the state medical board, and tell them how they treated you, what they said about the algorithm, how they accused you of drug seeking, and also how you are being forced to take a medication that does nothing and they will NOT change it. Call them, write a letter, go in person to complain, just do something.

They will keep getting away with this crap unless people start getting serious about fighting back.

Any doctor who just blindly says "methadone is for drug addicts" is both an idiot, and should be slapped silly. Methadone was a pain reliever long before the drug treatment programs ever came out.

I'm getting so sick of hearing this crap... We really do need a web site out there that lists these doctors by name and what they have done and said to people.

Keana, I’m so sorry this is happening to you. Your words just made me cry in frustration. I hope you can feel the empathy here and that among the suggestions, you will find something that helps.

That doctor is ignorant and dangerous. Find another one. Just make sure that you tell the new one what happened with the last one, up front, because they will inevitably find out anyway. In some cases, you wouldn't want a doctor to know the dark side of your history, but this isn't one of them.

And yeah, I second (or third or whatever) the suggestion to complain to whatever board certified him. For a neurologist not to know that methadone is a useful painkiller is ridiculous.

The Dr. I seen was one I got off this board Sawlani and the neuro. here in chicago (Park Ridge Office) is Dr. Rubenstein. STAY AWAY FROM THESE SO CALLED DOCS. if your in the chicago area.

I would not take the Elavil, its known to make rls alot worse!!

Oh no i Know better than to take that. But something would be nice to have I do admit this is very depressing.

Hi Keana- I'm replying late to this but here are some ideas:

1) ask folks here if anyone is seeing someone in your area that is good. Word of mouth is the best way to find a good provider

2) consider making an appt with a pain clinic. They may be more open to reading the Mayo alorithm and be willing to go down the opioid road with you. (you may have to try a few more meds first..)

3) Buy a plane ticket and see a specialist in RLS like Dr B. I have found that once patients get put on opioids, whoever takes over your care will be more likely to accept the previous doctors med recs and leave them be. (I would ask Dr B or whoever you see to make a recommendation on who could take over your care in your town)

Your experience you are describing is one that most of us have run into. I had a very similar experience myself. Not fun!

FidgetBoy wrote:Hi Keana- I'm replying late to this but here are some ideas:

1) ask folks here if anyone is seeing someone in your area that is good. Word of mouth is the best way to find a good provider

Josh, that's truly the problem in Chicago. We do NOT have a good RLS specialist here. We need one desperately.

Minneapolis doesn't either. On paper we "do" but when I went to see them, I got the same response that Keana got.

Actually, Ann, your suggestion to me a while back to go back to my family doc was probably the best advice I have ever been given.... He basically said "you've tried everything else, you look miserable, lets give you a narcotic". And then he wrote the prescription.

I've often wondered if family docs are more lenient and flexible because they tend to treat the same person for long periods of time--- so they get to know you really well and develop trust. They also tend to see chronic conditions that need a "long-term" approach to care. Whereas neurologists/sleep specialists tend to see people short term and therefore do not view treatment in a "longitudinal" way. They tend to step in-- pick something based on a paper they read and then throw their hands up if you're response doesn't fit with what they expected. (thus the statement to my by the neurologist I saw: "you can't have RLS if you got worse on Requip")

Interesting thoughts, Josh. Sounds right to me.

It's not always enough, though. My family doc (one I started seeing in 02 when I moved) saw me go through everything - multiple neuros, sleep docs, sleep studies, exhaustion, etc. She felt for me but WILL NOT provide narcotics.

I went back to my family doc who I had years ago. He didn't know me well as I didn't see him often. But, he heard me and his reaction was much like the one you received. He is a great guy.

So, I'm 50/50 in terms of docs I know.

I recently switched to a new family doc who is closer to me than my old family doc. She is an internist. She's prescribing it ONLY because I am already on it, but has made it clear she doesn't want to. But, she does it. And that is good. Our relationship is a bit strained because of it and she seems to see that anything I am having is related to the narcotics, so I think she may be missing something else that is going on with me, but that's another issue...