Restless Legs Syndrome (RLS) Discussion Board

Monday, February 1

Welcome to

DCIDAH08, who has had RLS for 50 years. It usually starts every afternoon-affecting her legs and elbows/arms. She never sleeps more than three hrs. She has taken Neurotin and is now on 1.5 Mirapex 3x day and still have “frog legs” as her husband calls them.

That is a lot of Mirpaex to be taking. If it starts in the afternoon and is in your arms as well, there is a good chance that you have augmented on the Mirpaex and need to get off of it. You should take a look through our forum on Augmentation to learn more. If you have questions, please post a note with them so that we can help.

Monday, February 1

Welcome to

VickiS1956, who has been plagued with RLS for most of her life and will try ANYTHING!!!

We can all appreciate that feeling. We would be happy to give you suggestions, all we need is a note from you telling us what you have tried and failed. That way we know what to suggest.

Monday, February 1

Welcome to

chriskelly13, whose RLS leads to worry about concurrent medical issues.

Thankfully, there are only a few medical issues that are directly associated with RLS. But if you will post a note and tell us about what conditions there are that worry you, we may be able to help reduce and/or focus your concerns on any real problems

Tuesday, February 2

Welcome to

pudlma, whose RLS is destroying her quality of life. No matter how tired, she cannot sit and rest. She has been on Mirapex over ten years and thinks augmentation could be an issue. She is looking for help and answers and a Dr. who has knowledge of RLS.

If you have been on Mirapex for 10 years, then there is a very good chance that you are augmenting. Please post a note with any questions you have and your location so that we can provide some of the answers that you are seeking.

Tuesday, February 2

Welcome to

Jerker, whose symptoms have increased over last 30 years. At the worst Jerker's entire body jerks violently every 10 seconds. Jerker has tried every available drug but finds Requip to work best. Now Jerker am working with an allergist and a dermatologist for severe itching which Jerker believes to be a side effect of the Requip. Sleepless nights are less of a problem since retirement because lost sleep can be made up with daytime naps unless they are also prevented by jerking.

We would be happy to provide whatever help we can. If you post a note with any questions, we will try to answer them.

Tuesday, February 2

Welcome to

Russell8588, who has had RLS since childhood. It has affected sleep and made long drives or flights difficult.

If you have any questions, please feel free to post a note and we will do what we can to answer them.

Tuesday, February 2

Welcome to

Peace, whose RLS profoundly affects most important experiences in her life in ways she never imagined would happen. She knows some suffer more than she, and for them, and the rest of us she prays for research to resolve this tragedy.

If you have any questions or would like some suggestions for improving control of your RLS, just post a note and we will respond.

Wednesday, February 3

Welcome to

lizrules, who has had RLS off and on throughout her life. At 45, it became constant. At first, her doctor put her on Xanax, not knowing how to treat it. Her next doctor put her on Requip, which was okay for a year or so. Now she is trying to switch to Lyrica, and having a hard time.

Getting off of Requip is very difficult unless your doctor will prescribe the use of an opioid for a short time. Lyrica simply isn't strong enough to overcome the symptoms of Requip withdrawal. Without an opioid, you face about a week of no sleep. If you look through our forum on Augmentation, you will see what is going on. And if you have any questions, please post a note so that we can help you out.

Wednesday, February 3

Welcome to

nmhogan, who has been living with RLS for about 5 years. She is having increasing difficulty with augmentation and progressive symptoms. She would like to have some resources to add to her tool kit and thinks that reading other folks experiences will be helpful.

If you are going through augmentation, then the Augmentation forum is just what you need. And if you have any questions, feel free to post a note and we will try to help with your toolkit.

Thursday, February 4

Welcome to

marybablitch, who is not sleeping because of turbulent leg movements at night.

That is the most common complaint about RLS. If you post a note telling us what you are doing to manage the movements, we may be able to suggest something to help you get more sleep.

Thursday, February 4

Welcome to

llharrison, whose RLS has been part of her life for most of her years. She wishes there was a cure. The feeling every night before and during bedtime is the worst. For her, she dreads it. It’s a very lonely, sad part of her day. The tired feeling in the morning is hard.

We can all relate to that. The long nights by ourselves can be the worst part. If you would like suggestions that could improve control of your RLS, just post a note and let us know what you have tried.

Friday, February 5

Welcome to

mercuryastronaut, who is frustrated by the intrusion of RLS, has always enjoyed reading in bed for hours but now can't for much more than 25 minutes, and has difficulty driving long distances. It is also unpredictable as to how and when it will interfere and is difficult to explain to others.

It is indeed difficult to explain to others, and that includes many doctors. If you have any questions or would like us to suggest ways to reduce how RLS intrudes into your life, just post a note and let us know how we can help.

Saturday, February 6

Welcome to

NatureGal0812, who has been dealing with what she now knows is RLS for over 12 years which the doctor believes was caused by Lyme. Suffering still since she is intolerant to most medications.

Has your doctor checked your ferritin levels to see if increasing your iron is needed? You can also look through our forum on Physical Treatments to get an idea of what options you have there. If you have any questions, just post a note and we will do what we can to help you out.

Saturday, February 6

Welcome to

desertrobin, whose RLS symptoms are very bad, waking her up every 1 -2 hours, every night, until 4 or 5 in the morning. The lack of sleep makes her depressed and unmotivated. She think this discussion board will help her manage her symptoms and improve her life.

We would love to be able to help you out. You can either join an existing discussion or post a note with any questions that you have.

Saturday, February 6

Welcome to

TimBur, who is tired all the time. Augmentation is making the days as bad as the nights. His family doctor doesn’t seem to understand the impact on his day to day life it is having.

Many doctors have no idea about how debilitating RLS can be. If you are augmented, then you need to get off of the dopamine agonist that you are taking. But to do that, you will need the help of a doctor who understands RLS. If your GP will not provide a referral to a neurologist who is familiar with treating augmentation, then you will need to get on the phone and find one. You best bet for that is to call and ask to speak with a nurse. As the nurse whether the doctor is familiar with treating RLS patients in augmentation. You should also ask if the doctor is willing to prescribe opioids for chronic conditions since you may need them after you are off of the dopamine. The answers you get should be very telling.

And if there is anything that we can do for you, just post a note and ask.