Restless Legs Syndrome (RLS) Discussion Board

Hello, I am literally crying right now reading this about your horrible life with this horrible affliction bc I am ready to end my life bc I can't find a healthcare provider that understands that METHADONE is the only relief there is for me!!! I have only suffered with RLS for 30 yrs. unlike you since you were a toddler, couldn't imagine! I just recently got on this discussion board so I don't know if you are still on here, see the date of your post was in 2019. Doctors have put me on everything imaginable for RLS but it DOES NOT WORK & they are so afraid to prescribe an opioid bc of the epidemic & 100's of deaths per day bc of overdoses but I have NEVER had a substance abuse problem ever & methadone calms me down so I can sleep, have taken a low dose over the years, 10mg 2-3x per day, IT WORKS LIKE NOTHING ELSE but unless you get a doctor that "gets it" you're out of luck. I will be calling some of the doctors that RLS Foundation has on this site tomorrow, see if I can get an apptmt.--need one desperately bc I am literally at the end of my rope!!!!! Write me back if you get this please

Hi RLSlou
You're going through a dreadful time! I am so sorry that you have to be experiencing this. There can't be many things possible other than purposely inflicted torture that are worse than unrelieved, severe RLS/WED.

What medications are you on right now, and how much? If you're taking a dopamine agonist, it's quite possible that you're on too high of a dose and that you have augmented. It sounds like you were taken off methadone by an ignorant doctor, so I imagine you're feeling justifiably angry and betrayed.

Do you live near one of the Foundation-certified RLS Quality Care Centers? Definitely get an appointment there, even if you have to wait a long time, accept the appointment. (and keep looking for someone who can see you sooner). Sometimes a GP is the best way to go, if s/he is interested in learning more about WED/RLS.

There is definitely help for you, we just have to find it.

RLSlou wrote:Hello, I am literally crying right now reading this about your horrible life with this horrible affliction bc I am ready to end my life bc I can't find a healthcare provider that understands that METHADONE is the only relief there is for me!!! I have only suffered with RLS for 30 yrs. unlike you since you were a toddler, couldn't imagine! I just recently got on this discussion board so I don't know if you are still on here, see the date of your post was in 2019. Doctors have put me on everything imaginable for RLS but it DOES NOT WORK & they are so afraid to prescribe an opioid bc of the epidemic & 100's of deaths per day bc of overdoses but I have NEVER had a substance abuse problem ever & methadone calms me down so I can sleep, have taken a low dose over the years, 10mg 2-3x per day, IT WORKS LIKE NOTHING ELSE but unless you get a doctor that "gets it" you're out of luck. I will be calling some of the doctors that RLS Foundation has on this site tomorrow, see if I can get an apptmt.--need one desperately bc I am literally at the end of my rope!!!!! Write me back if you get this please

So many of us have been tortured by this darn disease. So sorry you are one of them. RLSlou. Hope you can get an appt with one of the docs very quickly. I actually moved from the Midwest US to Southern California so I can easily see one of the docs that gets it.