Restless Legs Syndrome (RLS) Discussion Board

HI -

I have been suffering from RLS for as long as I can remember. Twelve years ago I went through the trials of Requip and Mirapex and had a horrible time tolerating both of them. Thankfully, my doctor decided the best course of treatment would be 2 Tramadol in the morning and 2 Tramadol in the evening since I showed symptoms during both the daytime and nighttime. Fours years ago, I moved away from my doctor, but continued to see him. He has now recently retired, and I began the journey of finding a new doctor in the small city for which I am located. The last three months have been hell. There is only sleep doctor in my city, and every time I mention Tramadol, he looks at me like I am a drug addict and refuses to continue the course of treatment I have been on. He is putting me through a series of sleep tests while weaning me off the Tramadol, so I can go on a DA. I have learned that I suffer from sleep apnea as well.

I am beyond frustrated and scared to death to try a DA again, but now I am wondering if my original doctor overprescribed the Tramadol for me. I would love any advice and encouragement, and I am wondering if anyone knows of a tolerant sleep doctor in Dallas or Austin. I am at a point where I just want my life back and not made to feel like a bad person because I have taken a drug that works for me. It is even more frustrating knowing Mayo and Johns Hopkins have done research on opiates for RLS and U Mass is doing one now.

Thank you for reading my post and letting me vent.

There is a list of Doctors in this forum. The moderators here will answer your other questions.
Good luck.

Amanda, welcome to the RLS Community. You'll find lots of help here. Lots of people that understand exactly what you're going through.

First off there is a very good chance that you were overdosed on the dopamine agonist ( requip / mirapex) that you were given 12 years ago. RLS specialists have determined that the older dosing guidelines, indeed the current dosing guidelines per the FDA are too high. This causes lots of problems for people trying to use these drugs.

Your current doctor is probably under lots of pressure to avoid Tramadol, it is considered an opioid. It is indeed possible that you may be able to wean off Tramadol and successfully use mirapex or requip.

Hi Amanda, this is such a difficult disease, isn't it? And, boy, do many of us here understand what you are going through!

Holland's points are important. My original doc overprescribed the DA I took. Cutting it back made a huge difference. But, then, I augmented.

Today, most "in-the-know" docs would check your serum ferritin and do other blood work, then start you on something like .125 mg pramipexole or go to the DA that causes fewer incidents of augmentation. Or, they might just start you on one of the gabapentin drugs - gabapentin, pregabalin, or gabapentin encarbil as these work for a majority of us (but not all) and do not have augmentation as an issue.

If you fail both, any compassionate doctor who is up on this, would absolutely let you continue tramadol.

If I remember correctly, Dr. Becker is in Dallas. He has been a longtime RLS Foundation supporter and RLS researcher. I once heard him speak and he was very disdainful of the general attack on opioids.

Is it obstructive sleep apnea or central? If the latter, the tramadol may be causing/contributing to it. You can treat central sleep apnea with a mask but obviously if you can find an alternative treatment for your rls it would mean one less problem (if central).
I would second the above advice - if you do go back on a d/a make sure your serum ferritin is high and keep the dose to the lowest that affords relief. If you find that dose ceases to be effective, resist all encouragement by your doctors to increase the dose and find a supplementary medication. Pregabalin might help, Kratom might also be an option (though its role in central sleep apnea is not well studied so far as I am aware). Often with rls, a cocktail of drugs - each at a low dose - can be more effective than relying on one drug at a higher dose. It has also been observed that drugs seem to remain effective for longer when they provide slightly less than 100% relief - say 90%.

Amanda, in addition to all of the comments above, if you give the DA a try and it still doesn't work, you should print out a copy of this paper and give it to your doctor. Many, if not most, doctors do not realize that opioids are a recognized treatment for RLS. If fact, I understand that even the FDA was recently unaware of the fact that opioids are regularly used for severe cases. Anyway, several of the RLS experts in the US got together and wrote this paper and it was published last January in the Mayo Clinic Proceedings. It was intended to "educate" doctors such as yours (and the FDA). https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/abstract

And insist on the ferritin test if you doctor doesn't suggest it first. Then ask for the results and do NOT accept that is is normal since normal for everyone else is >20 and for us it should be >100 if you are on a DA.

What is DA?

A DA is a Dopamine Agonist such as Requip/Ropinerole or Mirapex.
There was a time that this was considered the first line for treating RLS and still is by many doctors.
Also over the years what was thought to be a suitable max dose has been reconsidered and is now much less.
i.e. Ropinerole from 4mg daily down to 1mg daily.
Mirapex is about 2.5 times as strong as Requip.

I'm sorry that you are going through this awful experience. I take 1 Tramadol a day for arthritis, so the amount you were taking sounds like a lot to me, but I ALSO take Ropinirole. One of the benefits of Tramadol, I was told, is that is not a "true" opioid, and therefore not as addictive. Maybe you can mention this to your doctor(s). Good luck on your journey!

I get so dismayed when I see this happening to people. Such a terrifying situation. I wish more doctors understood.