Restless Legs Syndrome (RLS) Discussion Board

Sunday, April 23

Welcome to

Booboo, whose RLS means she can't sleep, is depressed and has anxiety issues. She wants to sleep all day. In spite of trying all medications she is just getting worse.

Please post a note telling us about what you have tried and how you are currently doing. The experience of our members is that there is always something else to try.

Sunday, April 23

Welcome to

LindaRAmar, who was diagnosed in 1996 after a sleep study revealed it. At that time, she had no conscious awareness that she was restless during the night. Over the past five years, it has worsened. She takes ropinirole (6mg extended release).

Take a look around and then please post a note to introduce yourself and to ask any questions that you have.

Sunday, April 23

Welcome to

fuz_mind, who went through 3 years of pain before receiving a diagnosis; then developed depression it was at its worst because she was not sleeping and could not work. She has improved with current medication; but medication keeps increasing while condition is worsening

Take a look through our forum on Augmentation because that could be what you are experiencing. And then please post a note telling us a bit about yourself and what you are currently using to manage your RLS.

Monday 24 April

Welcome today to

Timmy - who has had Rls for 50 years, Timmy suffers greatly, Symptomatic 24/7. With no relief in sight.

Please post and tell us about your treatment and what has or has not worked for you. Often a drug cocktail will work, we will try to help.

Tuesday, April 25

Welcome to

D kerrick, who quite often feels sleep deprived and in the middle of the night is willing to take anything to help sleep

Take a look around and then please post a note telling us if you are taking anything to manage your RLS. There are things that are usually effective, and the normal sleep aids are not amoug them.

Tuesday, April 25

Welcome to

dj63sm, who is in pain, has restless legs all day, can't sit still and can't sleep.

Please post a note telling us what you are currently doing to manage your RLS and asking any questions that you have. We would love to be able to provide you some suggestions to try to better manage your condition.

Saturday, April 29

Welcome to

al1987, whose condition is currently controlled with medication. al1987 is very concerned about the future.

Please take a look around and then post a note telling us about your RLS, some specifics of your current medications and asking any questions that you have.

Saturday, April 29

Welcome to

Yellowjax, who can't sleep, his wife get's upset and if she's not happy then life is not so good.

Take a look around and then please post a note telling us about what you are doing to manage your RLS and asking any questions that you have.

Sunday, April 30

Welcome to

ellbranallion, who can't sleep at night which causes sleeping during day. Dr doesn't want to give meds and is running out of alternative options. Survived hip replacement at 87 but this is really tough.

Please look around and then post a note telling us why you think that your doctor doesn't want to treat your RLS. Perhaps then we can provide you with some specific suggestions (which might include changing doctors).

Sunday, April 30

Welcome to

Mllnsrbn, who is reading up on RLS for a dear friend. She has been struggling for years and wanted Mllnsrbn to read up on it. So they can have discussions.

What a wonderful thing to do. Take a look around and then feel free to post a note with any questions that you have.

Board members, please welcome ksilver2, who is 24 and has had RLS/WED since childhood.

Ksilver2, so sorry to hear of your troubles. It's encouraging that sometimes it doesn't bother you. For the times that it does bother you, learn as much as you can about what triggers the symptoms for other people, and consider if any of these triggers apply to you. For everyone, 1st generation anti-histamines are a potent trigger. Other medications that can trigger symptoms are some anti-depressants, anti-nausea meds, and most anti-psychotics. For many people, coffee is a trigger. For some people, various foods or additives seem to be triggers.

There are non-medication ways of coping that are discussed under Physical Treatments. There are books and brochures that might be helpful too - you can start with the free ones at https://www.rls.org/member-portal/publications (unfortunately, Coping Methods requires a membership to view. Membership is pretty cheap though). Some of us stand up at counters to eat and read, do squats in the middle of the night, sit in a very hot bath, or have other tricks to deal with teh symptoms.

Feel free to post and tell us more about yourself, ask questions, share your knowledge and experiences.

welcome to dziner05, who is suffering immensely on prescribed medications

dziner05, I have a suspicion that you might be experiencing a common side effect of the most-used medications for RLS/WED, called augmentation. This is a worsening of the RLS/WED symptoms that the medication is supposed to treat. It happens with the dopamine meds - Sinemet/Levo-carbidopa, Mirapex/Mirapexin/pramipexole, Requip/ropinirole, Neupro (patch)/rotigotine.

Please start a Topic and tell us more about yourself, what medication they have you on and how much, what others you have tried, etc. There are a lot of people here who can relate to what you're gpoing through, and can help you find a way to find better treatment.

Please welcome PeteJB, who has stumbled on a remedy!

PeteJB, feel free to browse around, and to create a new Topic in one of the Forums to tell us of your experiences.

Please welcome seamayo to the board! seamayo's husband suffers from RLS/WED and is on a DA. seamayo is a health care professional and his primary care taker.

seamayo, you'll find a wealth of information here. You might want ot start with "A good place to start" in this Forum (Just Joined). I would guess that your husband is experiencing augmentation, an iatrogenic worsening of the condition, simply because it is almost inevitable with RLS treated by dopamine meds (either DAs or levo-carbidopa\; the latter is actually worse). For specific information on augmentation (and iron!) see the links in my signature.

It is important to get his serum ferritin checked, and to get the actual concentration, not just a statement that it's normal. 20 ng/ml is fine for people without WED/RLS, but for us, we need to have at least 75 (some say at least 100). Low ferritin is associated with worse WED/RLS symptoms - and with increased risk of augmenting on DAs. Moreover, we don't store iron very well - we tend to have to keep taking iron to keep our ferritin levels from dropping. And our hemoglobin can be fine while our ferritin is dangerously low.

Most physicians are (still!) unaware of augmentation. Very few know how to treat it. Your plan to become informed will be one of the greatest gifts you have ever given your husband.

Welcome to Tiger, who has lived with increasingly severe RLS/WED for 42 years. Sadly, many of us can relate to that. However, you're definitely in the right place. There is a lot you can do to lessen the symptoms, and a lot of information on this board.

Please start a new Topic to tell us about yourself, what medications you have tried and what your current situation is. You can also reply to others' posts. If you just want to browse around, if you haven't already, check our the Topic called A Good Place to Start (in this Forum).