Newbie to RLS.org, But Worsening Problems

[SteveSensei]

It's been awhile since my last update and I have great news. I finally got to see Dr. Mark Buchfuhrer in Los Angeles a couple of weeks ago, even though it was an 8 hour drive to get to his office. After an hour or so visit, he switched me from Ropinirole to 5 Mg of Methadone. The first night was horrible, with twitching and jerking all night long, but from the 2nd night on, I have not had any problems at all. Dr. B. also prescribed an iron infusion, which I still have to get once I see my hematologist next month. Although I have less problems then many people here, i would not wish this condition on anyone. Dr. B. said I would have to probably have to stay on the Methadone for life.

[Polar Bear]

What an excellent result from your appointment with Dr B. I am delighted the methadone is working so well for you. Dr B has been a saviour for for so many sufferers. I wish we all could have access to such medical support.
It will be interesting to hear how your iron infusion works.
Well done.

[Rustsmith]

Dr. B. said I would have to probably have to stay on the Methadone for life.

I have been on methadone on-and-off now for six years and expect to stay on it now forever. The two words of warning the I pass along to all men who start on it are:

1) ask your PCP to do an EKG to check for Prolonged QT Syndrome. This is a rare heart condition that can be made worse by methadone. This is a heart condition that can lead to a fatal heart attack, and

2) there is a good chance that methadone will cause your testosterone level to drop. The signs will be increasing depression and a loss of libido. Testosterone supplementation therapy works great, but you just need to watch your mood and sex drive. I complained about my mood to my neurologist for years and she never said anything about this. I had to discover it for myself.

[badnights]

It's been awhile since my last update and I have great news. I finally got to see Dr. Mark Buchfuhrer in Los Angeles a couple of weeks ago, even though it was an 8 hour drive to get to his office. After an hour or so visit, he switched me from Ropinirole to 5 Mg of Methadone. The first night was horrible, with twitching and jerking all night long, but from the 2nd night on, I have not had any problems at all. Dr. B. also prescribed an iron infusion, which I still have to get once I see my hematologist next month. Although I have less problems then many people here, i would not wish this condition on anyone. Dr. B. said I would have to probably have to stay on the Methadone for life.

Good news. Glad you found Dr. B. He is awesome.

[SteveSensei]

New problems coming up and I'm not sure they are Methadone related. All this week I have felt very anxious and claustrophobic, and have thrown up twice on Tuesday and once Wednesday night. I'm negative on both flu and Covid tests this week. I've came off Ropinirole March 28th and went immediately onto 5 mg of Methadone, which has worked wonderfully. This afternoon I went to see my PCP for these problems and gave him the visit report Dr. Buchfuhrer wrote up for me and he was really pissed I'm on Methadone now as he's treated opioid addicted patients. Have to add that my pulse was 106 and blood pressure was 152/60 on this visit. Higher then it normally is. I explained the problems with the DA class of drugs and he said it's better to just live with the twitching and jerking of the RLS then to stay on Methadone. If I could find another good doctor here in my small town I'd switch immediately, but no one local knows anything about RLS.

[Polar Bear]

So your PCP isn't pleased that you're on methadone but is he willing to prescribe it on Dr B's advice.
I will say that my last PCP knew nothing about rls but was willing to learn and would take heed of... for example.... the Mayo Clinic Algorithm and other documents from our rls.org web site. Would you consider trying to educate a new but willing PCP. From your current PCP's comment that it's 'better to live with the misery of rls than take methadone' I'd reckon he doesn't know much about the treatment of it anyway.
Unfortunately my current doctor isn't just as willing as my previous one and I am constantly fighting my corner, so far so good.
Often a PCP has to be reminded of the difference between addiction and dependence.

[badnights]

I explained the problems with the DA class of drugs and he said it's better to just live with the twitching and jerking of the RLS then to stay on Methadone. If I could find another good doctor here in my small town I'd switch immediately, but no one local knows anything about RLS.

Is he actually prescribing on Dr B's recommendation? Or did Dr B write the script? Almost seems worthwhile to try a new doctor randomly.

But maybe more practical to see if you teach this one what the symptoms are like. Ask if he has the time to listen, then (if he does), try to describe why it's not just twitching and jerking. Mainly, there's a sensory component that he's missing (the horrid sensations that are so far outside the range of normal human experience, we actually don't have words to describe them), and alongside that, the movement is voluntary, not involuntary twitching and jerking. It's voluntary, which means you have to be awake to do it.