RLS Dead End?

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.

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

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?

I have had severe RLS for many years. I get significant relief from Sinemet (carbidopa/ levodopa) a dopamine agonist. Dopamine deficiency is associated with RLS, and I couldn’t live without thidrug. Generic is fine, and I take 25/100mg 3x per day. I used to take 6 tablets a day. Some people don’t like dopamine agonists (they enhance dopamine levels) because of “augmentation “, a tendency to require higher doses over time, but I have not experienced this. It’s a drug used for Parkinsons and used to be used for influenza. I have NO side effects from it. It’s cheap. I have tried the other meds for RLS and they all caused sedation/ dizziness for me. The RLS Foundation has good information as well. It is a terrible problem to live with- not understood unless you have it!

I developed Mild Insomnia about 10 years ago .Then 5 years ago I developed acute RLS and it also affected my arms, but have had it under control with Ropinirole and switch to Pramipexole when Augmentation occurs .I now have developed Peripheral Neuropathy and have not been prescribed anything by my Australian Neurologist He doesn't know what to do. My Insomnia has become worse. I am 82 years young and still try to keep fit with exercise which is at times difficult, but was a fitness fanatic most of my life .I developed Shingles soon after receiving my Covid booster shot back in 2021 .Can anyone help with their experiences .Frank from aussie down under.

Gabipentin forgive my spellling. Gab has helped me.

@covidstinks2023 Hello it may not help you but dill pickle juice has helped me not suffer with RLS. I am grateful for a family friend telling me to try dill pickle juice I drink 2 to 3 ounces 30 minutes before bedtime. I was dealing with the torture of RLS Almost every night for a few years until then. It does have to be dill not sweet pickles the sugar in them makes it definitely not work. If ya try it I hope it helps you. I recommend it to ppl suffering.

@theresajrs Thank you! I will try this. Blessings...

I certainly understand the frustration. I have been there. It's wonderful that others are recommending you connect with the RLS Foundation. They can offer science backed help. For me, my path back from the brink of despair started with finding a RLS specialist. The majority of doctors (both primary and neurologists) treat with dopamine agonists (which eventually cause augmentation--a loss of effectiveness as well as a worsening of symptoms.) Since 2023, I have been treated with nightly buprenorphine, which is like methadone, but with less troublesome side effects. Made a HUGE difference. THEN, since last April I have used these medically prescribed bands (called Nidra, made but the Noctrix Company in California). If an episode starts, I push buttons on each band and it sort of "buzzes" and stops the symptoms. During this, I easily fall back to sleep. After months of use, they have (somehow) retrained my brain and about 1/2 of nights I have no symptoms, at all. I continue with the buprenorphine. RLS is incurable, but it is manageable and it can improve with the right treatment(s). Nidra is based on something called TOMAC--search it on Medline (a medical journal search engine). Medicare pays for it. You need a prescription for it. Unfortunately, it is not yet available in all states yet. In 2023, my RLS goal was just to be able to fall back to sleep quickly. I never thought nights without any symptoms were possible. I still need to be careful about over exercising or over stretching. If my legs nerves get irritated, I will have a week of misery, before RLS is under control again. But, I would say I have gotten my life back. There is hope, but there is also work to get help. Find a knowledgeable specialist. There is a fellow at Duke (NC), great people in Boston, Stanford (CA), of course Mayo, my doctor is in Ann Arbor, MI and also does telemedicine in Ohio. The RLS Foundation can help you locate a knowledgeable doctor who can help and not just waste your time. Good luck. Please keep us posted.