Restless Legs Syndrome (RLS) Discussion Board

Sunday, August 9

Welcome to

WAYNESNOW, whose RLS is ruining his life! It is a living hell! He is 66 and would love to sit down but can't!

We would love to be able to help you out, but need some info to know where to start with our suggestions. If you are willing to post a note telling us what you are currently doing to manage your RLS, that will tell us what we can suggest to you.

Monday - 10th of August

We welcome Beearethree, who finds that RLS has taken over life, impacting everything, including making Beearethree quit a job.

Oh, we can commiserate! Please - start a new post and tell us more so we can hopefully provide some suggestions. Or, if not ready, read about what others are doing. Either way, hope you find what you need here, Beearethree.

Monday - 10th of August

We welcome Dbwilks, who has RLS and can’t sleep most nights, instead walking all night long.

That sounds miserable, Dbwilks. What have you tried? Please start a new post and let us know a bit more so we can offer some ideas. We'd here to listen and see if we can help improve your situation.

Monday, August 10

Welcome to

LeilaniJ, who has had RLS for over 40 years. It has worsened with surgeries on her left knee and leg, also right hip. She has tried many ways to manage it: reducing stress, managing sleep cycle, diet, medications, etc. RLS has made it difficult to sit and talk with family and friends, late afternoon and evening, for a lengthy period of time. Especially now, with many "visits" with family and friends are virtual, staying connected is challenging unless she takes medication ahead of time. RLS has disrupted her sleep for many years, keeps her up later, generally makes her feel miserable most nights of the week, been with focused management of it. She is finding better ways to manage it and would like to share with others about their experience and her experience.

We would be very happy to share our experience with you and would like to hear about yours. All you need to do is post a message with a bit of your experience to get things started.

Tuesday, August 11

Welcome to

Carroll07, who is laying awake waiting for tramadol to stop the RLS symptoms. Carroll07 is going to be trying pramipexole because Carroll doesn’t like taking an opiate (tramadol) . Sleeplessness is Carroll's worst problem.

Pramipexole should work well for your RLS at first. But be alert for any side effects, such as compulsive behaviors and augmentation. Also be careful when you stop taking tramadol because it is not just an opioid, but also has anti-depressant properties and so it must be stopped slowly.

Tuesday, August 11

Welcome to

MurielJKW, who is a female, 67 years old and has been diagnosed by a neurologist with severe RLS. She was prescribed ropinirole but choose to take it only at night. RLS is invading her daytime quality of life.

If you have been taking ropinerole for very long, then there is a good chance that you are augmenting on the ropinerole. This is a side effect of all dopamine agonist meds that many doctors are not familiar with. You can find lots of info on augmentation in our Augmentation forum. And if you would be willing to post a note telling us about your dose and how long you have been on it, we would be happy to offer you our comments.

Wednesday, August 12

Welcome to

Tadorman, whose father has severe RLS and so Tadorman wants to keep up with new treatments.

So great that you want to be able to help your father. We would be happy to help you out by answering questions that you have. Just post a note and ask away.

Thursday, August 13

Welcome to

mimizipzip, who has suffered from RLS for almost 15 years. It is hereditary for her. Until she was able to see an expert at the Mayo Clinic in Rochester, MN. every doctor she saw (5 over the years) and every drug she took (15) was of little value. The Dr at Mayo saved her sanity! She pays close attention to the information from the RLS Foundation every month and am also grateful for their help.

It is very unfortunate that your experience with the doctors prior to visiting one of the Foundation Quality Care Clinics is not unusual. Most of us have had to fire multiple doctors before finding a keeper. So happy that you have been able to do that. If you have any questions, please feel free to post a note and ask away.

Thursday, August 13

Welcome to

Beenaround52, who has been dealing with RLS for about 10 yrs and is at wits end. Tried every med available and only narcotic helps somewhat. So there has to be a better answer.

The experience of the group is that there is always something new to try. Many of us use a combination therapy that combines an opioid with one or more of the other RLS meds. Iron IVs have helped many and where it is legal, marijuana can be an effective addition. If you would like some specific suggestions, you can post a note telling us what you have tried and are currently using so that we can offer our comments.

Thursday, August 13

Welcome to

Jimij, who says that RLS is a form of torture and that it affects all aspects of your life.

We couldn't agree more. Please feel free to join any of our existing discussions or start a new topic of your choosing if you have any questions that you would like to ask.

14, August - Friday

Welcome, Mik. You mentioned that sleep disturbances at night lead to a bad next day. So many of us have experienced that, also!

We hope you find some help here, whether it be information, commiseration, or affiliation. Join any existing discussions if you choose, or start a new one.

Friday, August 14

Welcome to

Larrycharlesmcd, whose RLS has ruined his family life. If he's not constantly moving his legs, he thinks he well go crazy. His medication (ropinerole) isn’t working as well as it used to. This causes him to wake up throughout the night because the RLS is severe!!! He wishes there was a cure!!!

If your ropinerole isn't working as well as it used to, you could be in the initial stages of augmentation, which you can learn more about in our Augmentation forum. If you would like some specific suggestions for getting more sleep, post a note with some more specifics and any questions that you have so that we can provide you with comments for your situation.

Today we're joined by jimwatts, who first had symptoms at 17yrs of age, is now 62 yrs, and started medication about 12 years ago (Lyrica, Neupro, Gabapentin, Sifrol (pramipexole) and more recently Targin (extended-release oxycodone + naloxone)). jimwatts also has sleep apnea, and suspected augmentation (or withdrawal?) is making use of CPAP impossible. The Sifrol and gabapentin have been stopped, but the kicking is terrible and allows no rest.

jimwatts, how long ago did you stop Sifrol? What dose were you on? It can take a few weeks for some people to adjust, and meanwhile symptoms tend to get worse. Why did you stop the gabapentin? It doesn;t cause augmentation and might help to keep your opioid dose lower, as well as help improve your sleep architecture, which will be disrupted by both the WED/RLS disease itself and by the oxycodone in Targin. Please start a Topic to tell us more about your situation. There are lots of people here who can relate, and who will have advice and compassion for you.

Monday, August 17

Welcome to

Kaymay24, who is looking to get advice from others suffering from RLS.

We would be happy to help you out with advice. All you need to do to get things started is to post a note with any questions that you have. If you are willing to tell us a bit about what you are taking to manage your RLS, that would be helpful.

Monday, August 17

Welcome to

Dannmayer, whose RLS is causing daytime drowsiness, disrupted sleep for her and her husband. Her medications have become ineffective after time.

We would love to be able to help you get your RLS back under control. If you are willing to post a note telling us about your meds, we may be able to offer some suggestions that could improve your sleep.