Restless Legs Syndrome (RLS) Discussion Board

Sunday, June 1

Welcome to

Squirmy1, who has had worsening RLS for 35 years. Sleep has been increasingly difficult. Squirmy tried just about everything.

We have all learned that there is always one more thing to try. The document in my signature discusses most of the classical treatments that work. You will also find discussions here about the new TOMAC device and dypyridamole, which have helped some. You are also always welcome to post a message and ask for additional comments.

Sunday, June 1

Welcome to

seteo, who has severe RLS and joined the RLS Foundation upon the recommendation of seteo's physician.

Welcome to both the Foundation and to the Discussion Board. If you have any questions that you would like to ask, feel free to post your message and we will be happy to try to answer them.

Monday, June 2

Welcome to

darndelightful, whose RLS is ruining her life. She does not sleep well, getting 5 hours sleep per night in fragmented amounts. She takes 1/3 strip of buprenorphen each night. It is not working very well after a year. She feels desperate most of the time.

That sounds like it is time for you to have a heart-to-heart discussion with your doctor. There are alternatives to buprenorphine that your doctor can prescribe. But if you would like to hear from others, just post a message.

Monday, June 2

Welcome to

restless0328, who is trying to find resources to help bring restless's RLS under control.

You should be able to find what you need in our files, but the best place to start is the Mayo Clinic publication that the link in my signature points to. You can also post a message with any questions you have or requests for recommendations.

Tuesday, June 3

Welcome to

Delighted, whose RLS keeps her from sleeping most nights, thus she is extremely tired all the time and has a hard time going places at night.

Are you currently doing anything to treat your RLS? Do you know your ferritin number? There are plenty of suggestions that we can offer you but to do that we would need for you to post a message and tell us a little bit more.

Tuesday, June 3

Welcome to

Violetjune, who is "addicted"to Ropinirole. She has been in augmentation for years and is to the point of having restless arms, symptoms in the morning and afternoon.The thought of a night without the drug is terrifying. Even the couple of hours of waiting for the drug to take effect if she has forgotten to take it on time is excruciating.

You need to get off of ropinerole, and not be switching to a different dopamine med. There are RLS specialists that understand how to treat patients who have augmentation like you do. Unfortunately, they are in great demand due to all of the doctors who get their patients so dependent upon dopamine that they suffer with augmentation as you have.

Your best bet is to check the RLS Foundation's list of Quality Care Clinics to see if there is one that is close to you. Unfortunately, you can expect to have to wait for six months or more to see one of these experts due to the demand.

Some of us have had to travel to see one of these specialists and will always say that it was worth the expense and effort once they are free of dopamines.

You are also welcome to post a message with any questions, including things like alternatives to traveling long distances to one of the Quality Care Clinics.

Tuesday, June 3

Welcome to

dogmom623, who has had worsening RLS (mainly left leg) for about 3 years. Her father had it for years. It causes her great difficulty in falling asleep about half of the time, although once she is asleep, it does not wake her up.

Is your doctor currently treating your RLS? Do you know what your ferritin number is?

If you have any questions or would like some suggestions on how to improve the control of your RLS, just post a message on the board.

Wednesday, June 4

Welcome to

goodyg5, who I has been an RLS sufferer since childhood. Symptoms have spiked with age and maybe someone in the forum will suggest a treatment that goodyg5 hasn't yet tried that may prove effective.

The normally recommended treatments can be found in the Mayo Clinic publication that the link in my signature points to. You might also want to look into the recently approved TOMAC device as well as the use of dipyridamole, which has shown to help some during clinical trials over the last few years.

And of course, you are welcome to post a message to give us an idea of what you have tried so that we can offer you some suggestions.

Friday, June 6

Welcome to

Jhm111, whose RLS affects sleep as well as personal finances.

If you have any questions or would like suggestions to improve the control of your RLS, just post a message that tells us a bit more and we will do what we can.

Please welcome esmith428 to the board.

esmith428 has had WED/RLS for years but didn't realize what it was. S/he has tried some medication that was not agreeable, currently is not taking anything for the WED/RLS, and would like to connect with others who have it.

esmith428, you're in the right place. Most of us are taking medications and many of us are in that situation because of poorly informed doctors who gave us medications that made the disease worse. But you're seeking help and information at the perfect time, because recently the American Academy of Sleep Medicine published new guidelines that recommend iron as a front-line treatment, followed by gabapentinoid medications. The dopamine agonists that typically make the disease worse are no longer even recommended except in special circumstances.

If you'd like to start a Topic, pick a Forum that seems right to you and tell us more about yourself. We're a pretty friendly bunch.

Please welcome JGuzman to the board.

JGuzman cant sleep, has no energy and is struggling to heal from new compression fx(s). JGuzman worries that the movement and lack of sleep might be interfering with the healing process.

Did you recently have surgery or an injury? Please tell us more. You can start a Topic in a Forum that feels right to you. This disease is notorious for depriving us of sleep and energy, which impacts all aspects of our lives. There are things you can do. Are you on any medication? Have you have your iron parameters tested recently?

Please welcome Doria to the board.

RLS/WED has completely disrupted sleep and life for Doria. Augmented on pramipexole, Doria is in the process of weaning off of pramixpexole and am now taking Lyrica and in the care of a sleep specialist. The results have been that Lyrica makes me sleepy, but the symptoms are as bad as not being on anything at all. Doria wants support and encouragement and shared experiences dealing with this terrible condition.

So glad you found us, Doria. We have a lot of excellent information about augmentation and how to handle it. Switching to Lyrica while decreasing the pramipexole is not likely to help your symptoms at this time. Please post a New Topic and introduce yourself. Ask questions. Read posts. There are excellent resources within the Foundation, also, and joining is relatively inexpensive. We absolutely will support you, encourage you, and help you find a way through this. (Many of us have been in a similar situation - my journey here started in 2005 and this forum saved my life.)

Wednesday, June 11

Welcome to

okstate1212, who has RLS and is looking for a solution to help treat the symptoms.

One of the best sources of information about treating RLS can be found in the document that the link in my signature points to. It is a Mayo Clinic publication that was authored by most of the leading RLS experts in the US. You are also welcome to post a message on the board that tells us a bit more and how we can help.

Monday, June 16

Welcome to

StriveSeekFind, who Has had RLS all his life. He was on Requip or Mirapex for 5-7 yrs or longer and that made his symptoms much worse. DAs also caused other terrible side effects. He is on methadone now which has worked extremely well, but he thinks he has developed tolerance to it.

Although it is not a common occurrence, opioid tolerance does occur. Fortunately, member experience has found that short drug holidays can reverse this intolerance an allow you to go back onto the methadone. One of our moderators is even very sensitive to this and after years of experimentation has developed a schedule where she takes an opioid for a few days, switches to pramipexole for a few days and than goes back to the opioid.

If you post a message and ask for the experience that others have had with tolerance, I feel sure that she will provide you will more details.

And of course, you are welcome to post a message with any other questions that you have.