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RLS Dead End?

Posted by akhw @akhw, Mar 18, 2023

My husband’s RLS has ‘progressed’ to both legs, day and night. He has tried all of the approved drugs for RLS at increasing doses prescribed by a neurologist, as well as cannabis. He has been taking oxycodone for about a year. (The RLS Foundation has stated that opioids are the preferred treatment after Gabapentin & pregabalin). Heated leg massagers, walking, sports massager, Irish Springs at the bottom of the bed….his frustration & hopelessness level has peaked.

Any coping recommendations when all has failed?

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miguels | @miguels | Jul 10, 2023
In reply to @munster02091 "Success The Ropinerole started working and I have been on it for the last 18 months..." + (show)
@munster02091

Success The Ropinerole started working and I have been on it for the last 18 months although I have had to recently increased the dose from initially .25 mg to .5 mg everything ok for now I tried Lyrica in my first time of treatment but didn't work at all. If Augmentation starts to happen again I will go onto Rogitine I think that's how you spell it . Hope this information helps Clonazapan is a short term drug but for the transition period It worked great for me Regards Frank

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You might want to read the publications of the RLS group. Their advisors think that in the long term the dopamine agonists cause augmentation in almost all. Has to do with a change in dopamine receptors.
I was on them for four years. At first I thought they were a miracle drug. No symptoms, no pain. Great sleep for the first time in my life.
At @ 30 months needed to increase dose. Symptoms spread to arms. Had to go out on disability. Consulted experts across the country. They all said to stop the meds.
Improved but not resolved and worse base line than at time of diagnosis. My physician, considered to be pretty smart says in their experience, augmentation does not generally go away.
If I had to do it again, not sure I would take them. But I will admit I got a few good years but I pay a price now.
So please be careful. Seek multiple opinions.

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1 reply
ess77 - Elizabeth | @ess77 | Jul 11, 2023
In reply to @miguels "You might want to read the publications of the RLS group. Their advisors think that in..." + (show)
@miguels

You might want to read the publications of the RLS group. Their advisors think that in the long term the dopamine agonists cause augmentation in almost all. Has to do with a change in dopamine receptors.
I was on them for four years. At first I thought they were a miracle drug. No symptoms, no pain. Great sleep for the first time in my life.
At @ 30 months needed to increase dose. Symptoms spread to arms. Had to go out on disability. Consulted experts across the country. They all said to stop the meds.
Improved but not resolved and worse base line than at time of diagnosis. My physician, considered to be pretty smart says in their experience, augmentation does not generally go away.
If I had to do it again, not sure I would take them. But I will admit I got a few good years but I pay a price now.
So please be careful. Seek multiple opinions.

Jump to this post

I want to step in here and restate some of my experiences with RLS and its treatment. I was officially diagnosed in 2019 after an overnight sleep study at Mayo Florida. I've had many years of sleep disturbance from RLS, even daytime discomfort and movements. After the diagnosis, the doctor tested my ferritin levels. Ferritin was 15, quite low and I had my first of 3 iron IV infusions. These infusions helped me in many ways naturally, with a bump in energy, overall body strength, and far less fatigue, the first energy boost for me in many years due to Sarcoidosis and iron deficiency tendencies it turns out. I have other issues i.e. low absorption of B and D vitamins and some hormonal issues. But, the ferritin level was causing me serious problems with my sleep, legs, discomfort, pain, etc.

So, for me, the first thing that should have been addressed was the ferritin levels. Doctors want it to stay near the 100 level. Mine has fluctuated quite a bit for the last few years, but the infusions were a real gift.

Magnesium supplements help, CBD/CBG lotion and oils help, magnesium lotion has been helpful at times, and I take 2mg Requip nightly which has been a game changer. I worked with my physician to slowly and carefully stop Lyrica, Gabapentin, oxycodone, Lamictal, and other serious, brain-altering drugs. I became more myself than I had been in many years...no brain fog, as if a literal fog lifted and I saw colors and thought differently. Tremors were reduced. There were many wonderful benefits of getting off all the heavy medications I was taking for years for various diagnoses. What a glorious day to be free of the multiple harmful side effects.

I turned to different methods of pain control or relief, weird sensations, and discomfort/movement of the legs. I'm thrilled with the iron replacement and the multiple benefits of supplementation. I'm thrilled with the years of Requip help for the RLS. I see my physician this month and will discuss the augmentation concerns. Very real issues that must be addressed, but I'm so pleased with the help I've received in all these areas. The overall effect is better health, better sleep, less movement, and strange/weird pain or cramps, or discomfort. I have severe sleep apnea and use a bi-pap nightly with 2L oxygen.

I'm a member of the RLS Foundation thanks to folks on Connect discussing it. It's very helpful to get updates and information about RLS. Thank you Connect. I will continue the iron supplementation and infusions, the D, B, Magnesium, Zinc, and other supplements, and the CBD/CBG lotions and I also use CBD gummies with herbs to assist with sleep, pain, and anxiety, I'm a 76-year-old woman who never tried any marijuana in any form until I was 75! I'm pleased to say the combination of all these medications and supplements is improving my sleep and relieving the RLS symptoms. What a blessing...

Blessings to you in this crazy journey. Elizabeth

REPLY
friend2024 | @friend2024 | May 12 7:49am

I too have bad rls. Ropinirole is not working well. I don’t have only at night, but also through the day. In my arms at times. Tried mag, gab,iron, everything I can think of. People don’t understand the effects of this. I can’t even sit in evening. Thinking of going to Mayo Clinic in Phoenix to try rls clinic there. Anyone ever gone?

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