Restless Legs Syndrome (RLS) Discussion Board

Monday, June 1

Welcome to

jacquehaines, whose RLS has progressed with age. At this point, he is taking Requip and couldn't sleep without it.

If you are comfortable with sharing, please post a note telling us about your dose of Requip and asking any questions that you have.

Monday, June 1

Welcome to

lgelliot, who if it weren’t for the methadone, which relieves the symptoms enough to get maybe 6 hours sleep per night, lgelliot would not want to live.

Anyone with severe RLS can relate to your situation. Please post a note telling us more since you now have the ability to enter a more comprehensive description of your RLS and can ask any questions that you have.

Monday, June 1

Welcome to

Dubuque, whose RLS affliction ruins every evening, even with medication. Dubuque could just scream!

We can all relate. If you are willing to share more, please post a note telling us about your meds and asking any questions that you have.

Monday, June 1

Welcome to

bglister, whose leg jerking keeps him from getting a good nights sleep and likewise affects his wife's sleep.

Monday, June 1

Welcome to

RestlessBuzz, who has suffered from RLS for decades, and for the past 10 years has controlled symptoms nearly 99% using a simple physical device.

We always love to hear about success stories, please post a note in our Physical Treatments section describing how you are controlling your RLS.

Monday, June 1

Welcome to

SCGURU, whose RLS has had a profound impact on life since 1992.

If you are willing to share, we would love to hear about your symptoms and what you are doing to manage them. We may be able to offer some suggestions for improvement if we know more.

Monday, June 1

Welcome to

Bobm, who according to his mother was born with a severe case of RLS long before it was recognized. He is now 80 years old and RLS has severely affected his life.

Please post a note telling us what you are doing to manage your RLS. We may be able to offer some suggestions for improving your control if we know more.

Monday, June 1

Welcome to

TommyG, who has had RLS for about 8 years. He has been on different medications that stopped the RLS, especially the NEUPRO patch 4mg. About 5 months ago RLS came back with a vengeance. Now he is on the patch 4mg, Gabapentin 300mg 3x a day and Ropinirole 2.5mg at 7pm. This is because his RLS starts at 9pm. He is told it will get worse with age.

You need to take a look at a forum on augmentation because you are taking much more dopamine agonist meds (4mg Neupro + 2.5mg Ropinirole) is recommended for the treatment of RLS. Unfortunately, many (if not most) doctors are not familiar with the risk of augmentation and get their patients into this mess. Getting off will be difficult, but will be worth the effort.

Monday, June 1

Welcome to

Russell, whose RLS causes severe loss of sleep. RLS medications help but are not dependable and often don't work at all. Meds
have severe side effects such as weak tired eyes, fatigue, and shortness of breath.

If you are comfortable with sharing, please post a note telling us about your meds. Those side effects are not common, so we may be able to point you toward an RLS treatment that works and doesn't cause unacceptable side effects.

Monday, June 1

Welcome to

Greenbait44, who is a 76-year-old male, in otherwise good health. He has been entertained by RLS symptoms all his life. Many of his childhood instances still plague his memories. Just as so many of us experienced throughout childhood, He was treated as being retarded, being naughty, being antsy and being strange. His adult life in business taught him how to cope with untimely RLS-related shimmering and shaking. So what a comfort it was when his symptoms were clearly identified and described in early topical papers published by neurosurgeons! And then all the shared lifetimes brought to us as the RLS Foundation came to be founded. It's been like finding a lost friend who understands descriptions of his symptoms! So as he continues to find support as a Member of the Foundation, he is jumping at the chance to join the Discussion Board.

Thank you for being a member of the Foundation. Please feel free to post a note asking any questions that you have or simply join one of our ongoing discussion topics.

Welcome today to KentW, whose symptoms have been fairly moderate for many years, but have recently become much worse, progressing to the arms. Sleep is hard to come by and is interrupted several times throughout the night by the symptoms. This worsening of the symptoms began with a switch in the maker of Ropinirole from West Ward, which ceased production, to Alembic.

KentW, you are probably suffering from augmentation, a worsening of symptoms caused by the very medication that is supposed to help. The switch in makers was probably just coincidence. The dopamine-type medications like ropinirole will eventually cause augmentation in most people who take them - - but doctors are largely unaware of the problem and don't know how to deal with it. I will guess that your doctor has been increasing your dose as your symptoms got worse, thinking the disease was progressing.
The Foundation has some informative brochures on augmentation (see my signature link for more info - unfortunately you have to be a member to get at most of them). There is also lots said about it on this board- most of it in the General Forum but there is also a newer Augmentation Forum.

The best place to start is to start a Topic of your own and tell us more about your situation, such as how much ropinirole you take and how long you've been on it, and anything else you've tried. And tell us how you feel, because we'll understand it! You can also comment on other people's posts.

Monday, June 1

Welcome to

Hans020, who has had RLS for 30 years and is interested in other people's opinions.

[EDITED Note, if you read an earlier version of this message, we mixed up your welcome message with someone else's, sorry! Here's yours:] We would like to welcome you to the board, where there are a lot of people with experience and opinions about this disease, how it affects our lives, and what to do about it. You're welcome to ask others for their thoughts; you can either respond in an existing Topic, or start a new Topic. Let us know if you need assistance with anything.

Monday, June 1

Welcome to

jerrybrack, who has had severe RLS for the past 5 years. He takes 25 mg of methadone, 25 mg of oxycodone and 2400 mg of Gabapentin daily and goes thru periods where the RLS and the side effects from the meds can become almost incapacitating and depressing.

Has your doctor discussed any alternative forms of treatment to try to avoid the side effects of the three meds that you are currently on. Switching to other meds in the same classes might help with the side effects.

Monday, June 1

Welcome to

DLS, who has intermittent RLS, but when it comes on, it comes on w a roar. DLS's sleep is affected about 30-40% of the time, sometimes with much pain in the lower legs and feet that last all night. DLS has had RLS since being a toddler.

If you would like some suggestions for improving the control of your RLS, please post a note telling us about what you are currently doing to manage it so that we can offer you some suggestions for improving your control.

Monday, June 1

Welcome to

SoniMarie, who takes both tramadol and ropinerole for RLS. She wants to stay abreast of new treatments and get feedback from other RLS sufferers.

This is definitely the place to keep up with new treatments (which are rare these days) and to discuss RLS. If you will post a note telling about the dose of tramadol and ropinerole that you are taking, we would be happy to provide you with feedback.