Restless Legs Syndrome (RLS) Discussion Board

Monday, May 11

Welcome to

marklafite, who has had RLS for 7 years. Tried dopamine agonists, gabapentin and oxycodone. Tolerance has built up for oxycodone.

Please post a note telling us about your dose and who long it took to develop tolerance to oxy. We can then offer some suggestions to discuss with your physician, such as possibly switching from oxy to methadone.

Monday, May 11

Welcome to

Otros, who has experienced slight RLS since being a teenager, but it recently and suddenly became much worse, without apparent reasons. Otros worries for the future given that Otros is still quite young (27).

Has your doctor checked your ferritin levels lately? Ferritin levels below 100 can cause some to experience more severe RLS than they would if their ferritin level is higher. And don't accept "normal" for your ferritin, find out the number. Normal for those without RLS is anything over 20, for us it needs to be over 100, but most physicians do not know this.

Tuesday, May 12

Welcome to

MaryW, who has had RLS for 20 years and it is getting worse. She is completely miserable and never can sleep. She can't get in to see my sleep Dr and she is desperate for some other ideas.

Please post a note telling us about the things that you have tried so that we can offer some more suggestions to check out until you can get in to see your doctor.

Wednesday, May 13

Welcome to

WafflesKitty, whose husband has had RLS for the last year. It has completely disintegrated his life. Ropinerole worked for a few months and now it’s as if it has already augmented. Taking 4 mg (maximum dosage) at night doesn’t even seem to make the slightest difference. They need a solution.

If he is having problems at 4mg, you are probably correct that he has augmented. Please post a note and tell us if his doctor had checked his ferritin levels and if he has tried gabapentin, Horizant or Lyrica. He faces a difficult road ahead since getting off of dopamine agonists is difficult, at best. We can offer you some suggestions, such as how to find a doctor who understands augmentation and what needs to be done to minimize the problems that your husband faces in the near future.

Thursday, May 14

Welcome to

Kathysue68, who has severe RLS and has been suffering for over 20 years.

Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions to reduce your suffering.

Thursday, May 14

Welcome to

burglandr, who has had RLS since age 20 and is now being treated with methadone and iron infusions at 75.

Please feel free to post a note with any questions that you have or to simply jump into one of our existing discussion topics.

Friday, May 15

Welcome to

yellow41, whose RLS causes inconsistent sleep and affects every aspect of her life.

If you will post a note telling us what you do to manage your RLS, we may be able to offer some suggestions that could improve your sleep.

Friday, May 15

Welcome to

cairlynne, who just recently started to experience frequent RLS symptoms. She is also diagnosed with anxiety and depression. The two do not mix very well (she feels one causes the other) and is trying to figure out how to treat both conditions.

You are correct that RLS, anxiety and depression are commonly linked. Lack of sleep (from the RLS) can cause anxiety and depression. If your doctor prescribes an anti-depressant, it can aggravate your RLS, except that sometimes Wellbutrin can be RLS friendly. Regular exercise can also help with depression and does not cause RLS problems.

If you will post a note telling us about what you are currently doing to treat all three, we may be able to offer a few more suggestions.

Friday, May 15

Welcome to

M@rg!&, whose RLS has significantly affected day to day living.

Please post a note telling us a little bit about your symptoms and what you are doing to manage them so that we will have an idea of what sort of suggestions to give you.

Sunday, May 17

Welcome to

LAGoette, whose RLS lately has been more negative than ever. It seems now Requip is making her extremely ill with stomach cramps, nausea and vomiting. She has been on it for many years, it saved her life. Now it doesn’t seem to be working and she is trying to find alternative solutions.

Please post a note telling us about your dose and what other meds that you have tried in the past. There are many alternatives to Requip, but we need to have an idea of where to start with suggestions to discuss with your doctor.

Tuesday, May 19

Welcome to

loonee1, who has had RLS for a couple of years and it's getting worse. Sometimes loonee can sleep (when completely exhausted) and sometimes can't. Often, when watching TV at night in loonee's recliner, loonee's legs are so jumpy loonee can hardly stand it. Loonee is hoping for suggestions for relief.

If you feel comfortable sharing, we would love to offer some suggestions but need to know a little bit about what you are currently doing to manage your RLS so that we will know where to start. If you will post a note with this info, our members will certainly provide you suggestions.

Wednesday, May 20

Welcome to

Strelnikoff, whose RLS is a major influence on life due to constant maintenance of medication which has turned into a 24x7 level of med management.

There are some long acting meds available that make things a bit easier when it comes to management, i.e. once a day. If you are comfortable posting a note telling us what you are currently taking, we might be able to suggest some alternatives that you could discuss with your doctor.

Welcome today May 24 to restless44, who joins us after many sleepless nights and irritable, sleep-deprived days.

restless44 you will find a community of fellow sufferers here who know exactly how you feel. I too can't sleep properly with someone else in the bed! And if I'm in a window seat on a plane, it seems to make the symptoms worse. I hope we can help you in many ways. Feel free to start a topic of your own, or to comment in others' topics.

Tuesday, May 26

Welcome to

zbjmartin, whose RLS is driving he and my wife crazy. He can’t sleep which means she can’t sleep. He is an ultra marathon runner so doesn’t understand why this is happening to me!!

RUstsmith, one of our moderators is a retired marathoner and can attest that it has nothing to do with RLS. RLS is a neurological condition. You need to discuss this with your doctor and make certain that (s)he runs blood tests to check your ferritin level. There are treatments that can bring you sleep, but it is not something that you should try to manage without proper medical help.

Tuesday, May 26

Welcome to

looseplayer, who can't sleep at night, is up all night in pain and can't function the next day.

Those are the complaints that drove most of us to seek medical help. Speak with your doctor about getting some help. Your doctor should run blood tests, especially ferritin levels, and can then prescribe meds that should alleviate the night time feelings and allow to you get some sleep.