Restless Legs Syndrome (RLS) Discussion Board

debbluebird wrote: Mon Mar 18, 2024 2:10 pm I have a new pain Doctor. I've had her less than a year. She never asked me about my history. She just took over from the previous doctor I had started with since moving to Albuquerque. The first injection she did was in the right spot, last summer.
I had sent her a note that my RLS had returned and I'd been RLS free for 6 months. She won't put the steroid injections in the right spot. Said I was bone on bone and with my hardware, she refused. I think she was afraid. She put it in a different spot and it didn't help at all. She asked me if I'd try a DA. I told her my history. I told her no DA. So when I see her next time I wonder what she will suggest. In that office I see the PA who writes for the pain meds. That frees up the Doctors to do the procedures.

What drugs are they injecting into you that relieve RLS? What’s the mechanism of action? My understanding is that steroids make RLS worse.

Buprenoprhine can cause insomnia. If that happens try taking it earlier in the day. And, give it 2-4 weeks to wear off.

Oozz wrote: Thu Apr 04, 2024 4:12 am

debbluebird wrote: Mon Mar 18, 2024 2:10 pm I have a new pain Doctor. I've had her less than a year. She never asked me about my history. She just took over from the previous doctor I had started with since moving to Albuquerque. The first injection she did was in the right spot, last summer.
I had sent her a note that my RLS had returned and I'd been RLS free for 6 months. She won't put the steroid injections in the right spot. Said I was bone on bone and with my hardware, she refused. I think she was afraid. She put it in a different spot and it didn't help at all. She asked me if I'd try a DA. I told her my history. I told her no DA. So when I see her next time I wonder what she will suggest. In that office I see the PA who writes for the pain meds. That frees up the Doctors to do the procedures.

What drugs are they injecting into you that relieve RLS? What’s the mechanism of action? My understanding is that steroids make RLS worse.

It was a steroid, but it calmed the nerves in my back and reduced inflammation. It helped me. My RLS was gone for 6 months.

Hi …. A few days ago there was a virtual RLS research summit that I attended. I was very happy to see so much is being looked into for RLS. Buprenorphine seems to have incredible potential. I believe they said it was an opioid that is for moderate to severe RLS and can be prescribed much easier because it doesn’t get the user inebriated or high. This is probably the best news possible for RLS sufferers if it works and has minimal side effects. Now I do love my teeth but not as much as I love sleep. I really hope this drug works out. I am a bit confused however… does anyone know if you are just as dependent on it as a normal opioid?… I am wondering if and when I get a chance to use this if I will suffer withdrawal from my current opioid or if it’s exactly the same just without the high.

Hey Deb….. that’s good to know. The RLS research summit was amazing. The opioid seems to be a big cure for most RLS sufferers but there is serious stigma attached to opioids and doctors are more then hesitant to prescribe them. But since you don’t get high from Buprenorphine there is no illegal street drug value for them. So if it works like the research seems to indicate then it could be the holy grail for RLS sufferers in general. I don’t know much more than what the researchers claim and from what I understand it’s for more severe cases. But that’s a good thing. This way a doctor will be more willing to take a chance rather than having to worry that the patient will become addicted or worse sell the drug. If the research is correct that 5 to 10 percent of the general population has RLS this might be a God send.

TIm, the numbers generally reported for RLS range from 5 to 15 percent of the population. The reason for such a wide range is that RLS occurs more frequently in those of northern European ancestry and "rarely" in Africa, so there is a question of what "population" you are referencing against.

There has also been an issue with reporting of the occurrence of RLS. Some doctors don't believe the disease exists, so they don't report it. There are also questions about how to classify mild cases and exactly how many of these cases don't get diagnosed because the person doesn't bring it up with their doctor. The one thing that I have seen consistently reported is that the most severe cases only represent about 1% of RLS. According to US government criteria, that makes severe RLS a "rare" condition.

Well, because of the issues getting methadone, Dr Buchfuhrer has switched me from it to Suboxone (buprenorphine with naloxone). There is a whole sub-rant related to pharmacies that I won't go into...but I do have a pharmacy that will give it to me.

Has anyone here switched directly - without a decrease in dose? Supposedly, anything under 30-40 mg a day doesn't need any tapering; I am wondering about the naloxone and when/if it kicks in at these lower doses.

Ann, I don't have experience with Suboxone, but when I was bouncing back and forth between Tramadol ER and methadone, I was able to simply switch from methadone to Tramadol without having to taper so long as the MEUs were about the same. I did need to taper when going from Tramadol to methadone, but that was not due to the opioid content but was due to Tramadol's anti-depressant properties.

I am now taking my 1mg in the morning and the other 1mg at night. I was having some insomnia and it has stopped. Also by taking it in the morning, it is helping with my back pain.

Rustsmith wrote: Sat Jun 15, 2024 3:00 am Ann, I don't have experience with Suboxone, but when I was bouncing back and forth between Tramadol ER and methadone, I was able to simply switch from methadone to Tramadol without having to taper so long as the MEUs were about the same. I did need to taper when going from Tramadol to methadone, but that was not due to the opioid content but was due to Tramadol's anti-depressant properties.

I think the issue with Suboxone is the Naloxone. It can cause a precipitated withdrawal, but there is almost NO real research out there about it. And, while they say it can happen, they say it happens at higher doses. So, I just am wondering if anyone had any withdrawal issues when they switched.

I am so glad I started taking the suboxone 1mg in am and 1mg in pm. I'm not as sleepy during the day. It's helping.with my pain and I'm having very little RLS. The last time was a couple of weeks ago. I don't have any dry mouth during the day. I'm feeling pretty good lately.

debbluebird wrote: Mon Jun 17, 2024 7:18 pm I am so glad I started taking the suboxone 1mg in am and 1mg in pm. I'm not as sleepy during the day. It's helping.with my pain and I'm having very little RLS. The last time was a couple of weeks ago. I don't have any dry mouth during the day. I'm feeling pretty good lately.

That is great to hear!