Restless Legs Syndrome (RLS) Discussion Board

Hello All,

I joined this form for this specific question as I have hit a roadblock in my own research. I am a 35 y/o male with debilitating RLS.

I lived in Connecticut for 10 years and was prescribed every class of medication indicated for RLS (dopamine agonists, anticonvulsants, benzos) with little success. Mirapex relieved my symptoms for a period of time but resulted in terrible augmentation that required me to take FMLA for joint pain, bruising, and insomnia. I found a wonderful doctor at the Yale Sleep Medicine center who prescribed me methadone which completely eliminated my symptoms. I have been taking this for nearly 3 years and it still works well.

I have moved to Florida and have had nothing but trouble finding a provider than understands RLS and methadone as an effective treatment for RLS. I finally saw a doctor in Orlando who stated basically methadone is the only thing that will help but he cannot prescribe it to me because opioids for chronic conditions have to be prescribed by a certified pain management physician. He referred me to someone but stated he is not hopeful as pain management doctors generally have little understanding of the condition and will not likely be open to methadone as a treatment. He told me to try Neupro patches but he stated that they will most likely be ineffective based upon the severity of my symptoms.

I am considering flying back to Connecticut every 6 months to see my doctor there if things don't work out here, but my concern is that problems may arise with prescribing opioids across state lines. In addition, it will be difficult to afford the trip and to take time off work. So, my question is:

Has anyone in Florida found success with a doctor who is willing and able to prescribe methadone for RLS? I am willing to drive as far as I need to. I live in Clermont, about 30 miles west of Orlando.

Thank you so much!

I cannot help you with a doctor in Florida since I live in the mountain west. But I can offer a couple of suggestions.

1. Print a copy of this paper and take it with you when you go to the pain management clinic. It might help explain to them why you need methadone. But don't be surprised if your doctor's warning holds true. Some of our members have had issues with pain doctors before. The paper can be found at: https://www.mayoclinicproceedings.org/a ... X/fulltext

2. As for interstate prescriptions, if you do go back to Yale, you can send the prescription to a mail order pharmacy. My insurance requires me to use Express Scripts. It takes about 2 weeks to get a prescription filled, and I have never had an issue with them, even when I was taking methadone. My doctor would triple the dose on my prescription so that we would only have to get it filled once every quarter.

I received my script for years in the mail. I would call the CA doctor's office and they would FedEx it to me. I paid for and set up the FedEx pickup. I then filled it in Illinois.

I also know nothing about Florida. I do not recall anyone on here who is in Florida. You could try to search on the word Florida and see what comes up.

I hope you can work something out. The situation is ridiculous but not the laughable kind of ridiculous. How important is your job ...

I'm a lifelong sufferer of severe RLS and resident of Fl. Almost every GP claims they treat RLS in their Bio but few to my experience know more than their computer tells them. DAs -> Extended release DAs -> Gabapentin -> Neupro. I looked all over the state for an expert and found a movement specialist (Parkinsons, etc) near you that claimed expertise at RLS. She didn't and I recently got a letter that she was changing her specialty.

Everything works for me for a week to a month and then back to suffering. I've been treated like a criminal just filling Clonazepam prescriptions for 25 years so I never bother to ask about methadone. Wife not big on trying it either. I'm about 2 hours from you on the east coast. Let us know if you have any success in Fl.

Interesting you mention joint pain. Shooting pain in my thighs and more recently hips is new over last few years scares the hell out of me. Neurologist thinks it is from PLMS. Maybe so but why never in morning and usually evenings and nights. Lyrica he put me on helps a lot more with that than Gabapentin but I feel lethargic. Not good since my age is having that affect also.

I'm going to ask my doctors about IV Iron. I think my GP will refer me to a Haematologist and I'll show them the study explained in other posts and we'll see where that goes.

I'm sorry to be late to this post. I live in Sarasota and have a great doctor who prescribes methadone. He also gave me the name of a doctor on the east coast who will also. my doctor is: Glenn Adams, 1625 S Osprey Ave, Sarasota. I can't put my hands on the doctor he recommended but will look if you still need someone. I know I have it. I got it bc Sandra Katanick who was featured in a Nightwalkers, ran into the same issue when she moved from MD to FL. She has since also found a doctor who will prescribe her opiod. Her email is: slkatanick@gmail.com. She is also on the east coast (can't remember exactly where.)

BTW please look at the RLS website for the list of recommended doctors. No sure who's listed there now but that's where I found Dr Adams.

Just wanted to respond to your post since your situation sounds a lot like my mothers. She is 82 years old and Methadone is the only thing that works for her as well. She has an MD at Johns Hopkins and continues to go to Baltimore every 6 months despite living in The Villages FL. Her MD at Johns Hopkins can not prescribe in FL due to state restrictions. She sees a pain management doctor in The Villages who prescribes her Methadone. His name is Dr Piniamanphi, phone #352-343-7246. He agreed to see her because of his relationship with her general practitioner in The Villages. He has little knowledge of RLS but is willing to see her monthly and treat her. Not sure if this will be helpful to you.

My doctor in Sarasota FL gave me the name of his friend who is in Boca Raton. Not sure where you are. His name is: Dr Nat Chediak. Please let us know if you've found someone.