Is this really my new "normal"?

Use this forum to discuss any issues associated with Augmentation
RLSlou
Posts: 3
Joined: Tue Feb 04, 2020 12:14 am

Re: Is this really my new "normal"?

Postby RLSlou » Sun Mar 01, 2020 3:23 pm

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 ;)

badnights
Moderator
Posts: 5469
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Is this really my new "normal"?

Postby badnights » Sun Mar 01, 2020 11:15 pm

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.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15958
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this really my new "normal"?

Postby ViewsAskew » Mon Mar 02, 2020 7:18 am

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.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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