Restless Legs Syndrome (RLS) Discussion Board

Saturday, November 23

Welcome to

Bluejay, who has been under treatment for RLS (main symptom pain) since April, 2019. When presented had <= 2hrs sleep/night. BJ is under care at the University of Wisc. sleep clinic and will be seeing a neurologist shortly as well. BJ is currently on methadone and gabapentin and struggling mightily with trade-offs between medication side effects and benefits. Get 5-8 hrs of fragmented sleep per night. BJ would so much like to know experience of other sufferers to help inform decisions and for general support.

Please post a note telling us about the doses of methadone and gabapentin that you are currently taking, as well as the time of day that you usually take them. Many of us use those meds, so we can probably offer some suggestions to improve your sleep.

Tuesday, November 26

Welcome to

Mel, who wants to know is possible he have RLS. Doctor is not certain at this point. Symptoms have seriously affected his quality of life. Calf leg nerves and muscles are active when at rest or trying to sleep. Pain and cramping. He would like to source others who may have or have had these type of symptoms.

It is possible that you have RLS. Not everyone has pain and cramping, but some do. If you will post a note with a more complete description of your symptoms, including when they start, we can offer you more comments.

Tuesday, November 26

Welcome to

Memtenn60, who have had RLS most of mem's life, however it has become chronic with age. Mem now has to deal with it on a daily basis and has not found a Doctor that understands it yet.

Finding a doctor who "gets it" can be difficult, but they are out there. Many of us have to travel to see doctors at the Foundation's Quality Care Clinics. But they can also be found at medical schools or by simply doing a lot of work on the phone. If you will post a note to give us an idea of what part of the country that you live in, we may be able to point you toward someone.

Tuesday, November 26

Welcome to

Eviemae, who has had RLS from childhood and has only been treated specifically for RLS since 2015. She is 54 now. She is experiencing severe depression through sleeplessness and is currently starting Neupro and gabapentin and is waiting to see if GP will prescribe Wellbutrin.

Please post a note asking any questions that you have. We would love to help out in any way we can.

Thursday, November 28

Welcome to

Mamawhiz, who is on year 23 with RLS but only year 10 or so of treatment. As she become more “medicationally” numb, she needs to look for other options and would love to help with awareness and a cure.

Sorry, there is not cure in the foreseeable future. However, there are a number of treatment options available. If you post a note telling us what your have been taking, we can share our experience with the different medications.

Thursday, November 28

Welcome to

DanGw, who says that timing the medication to sleep right is quite tough and prior to medication, sleeping was horrible and evenings were difficult to watch tv.

Please feel free to post a note telling us a bit about your current medication and asking any questions that you have.

Friday, November 29

Welcome to

Guitar, who can’t sleep. Has been on pramipexole, rotigitine and isnNow moving onto gabapentin.

Please post a note telling us a bit more about your symptoms and asking any questions that you have.

Saturday, November 30

Welcome to

Amy33, who is 33 and has had RSL since she was a child. She wants access to a discussion board to know what has worked for other people to alleviate symptoms or exacerbated symptoms. For her, B-vitamin supplements makes her RLS MUCH worse. From what she has read online, B12 supplements are supposed to improve symptoms...so she doesn’t quite understand what is happening with her body.

One thing that we all learn with RLS is how different we are all when it comes to reacting to meds, foods, situations, etc. Please post a note telling us about your B vitamin experience and asking any questions that you have so that others can add their experience.