Restless Legs Syndrome (RLS) Discussion Board

Hi! I hope there's someone out there that can relate and share their experiences. I was diagnosed with RLS about 2 yrs ago after a sleep study. I suffer from symptoms day and night. It's impossible to even sit in a movie, sporting event, or anything for that matter that lasts much longer than 30 mins. I take pramipexole 1mg 2x daily. About 16 mos ago I started experiencing significant intermittent pain in my bilateral lower legs both day and night. It's definitely most significant and noticeable at rest and in bed. Recently it's just increasingly getting worse. A horrible cramping, nawwing, shooting pain. After many blood tests and a doppler study... no findings. One of my specialists suggested that it might be something to do with my RLS knowing I take pramipexole. Having no idea that pain could even be a symptom.... I started doing research. BINGO.... I do believe the mystery is solved. I just started seeing a new PCP. She's the one that ran all the tests and after finding nothing didn't even bother to call and tell me. So I finally called and said.... I can't keep taking upwards of 5000mg of Tylenol and 3000mg of ibuprofen daily with little to no relief. I literally have not slept in 3 days now due to the pain. I am an RN and I Realize there is little options for medications I can take. I can't even tolerate gabapentin that I tried for something else a while back. She is insisting on lymphadema wraps done by physical therapy. What are anyone's experiences with pain management symptoms from RLS? Please help

If you are taking 1mg of pramipexole twice a day you are currently taking four times the FDA's maximum recommended dose for treating RLS (the max dose for Parkinson's is 4mg/day but for RLS it is 0.5mg.day). That could definitely be causing your problems because dopamine agonist augmentation impacts each of us a bit differently and pain is an RLS symptom for some of us.

At a total of 2mg/day of pramipexole, you are almost certainly augmenting and need to get off of pramipexole and NOT by switching to ropinerole or rotigatine. Gabapentin and Lyrica are also not strong enough to help you at this point. Switching will be difficult and will require the guidance of a movement disorder neurologist that is familiar with treating augmented RLS. Unfortunately, these doctors are very scarce and wait times for new patient appointments is often months.

First off, read the document that the link in my signature points to. It will educate you on the proper treatment of RLS. Also read the posts in our augmentation forum and that the RLS Foundation provides (RLS.org). Also study up on Dopamine Agonist Withdrawal Syndrome to understand why you it is dangerous for you to simply quit taking pramipexole.

If you are located near one of the RLS Foundation Quality Care Clinics, get on their waiting list. You may need to travel to get to one of them, but it would be worth it.

Finally, if your PCP is the type that would be willing to learn, share the Mayo Algorithm publication and also share this Mayo document that justifies why opioids can be an appropriate treatment for RLS such as what yours may now be. https://www.mayoclinicproceedings.org/a ... X/fulltext

Finally, you asked about pain management. Some of us have found pain management doctors willing to accept RLS patients for treatment, especially when opioids are required. However, many pain management doctors are only interested in helping individuals who are dependent upon opioids to get off of them and therefore are not interested in providing low dose opioids for the treatment of a neurological disorder that they know little to nothing about. It is all a matter of the individual doctor.