Restless Legs Syndrome (RLS) Discussion Board

Monday, March 3

Welcome to

KoolKestrel, who was diagnosed with RLS in the fall of 2024 along with severe sleep apnea. She is currently taking medication for the condition as well as oral iron. So far the treatment is working, but she is worried about augmentation.

Augmentation is only an issue if your doctor prescribed one of the dopamine agonists. If so, augmentation will eventually happen but it could take many years. Keeping your ferritin level over 75 and keeping the dose of dopamine agonist as low as possible helps delay the inevitable. When adjusting your dose, the goal should be about 95% control of symptoms and not 100%.

If you have any questions that you would like to ask, just post a message and we will do our best to help.

Monday, March 3

Welcome to

kwpitcher1, who has RLS precipitates by antidepressant Effexor but finally found relief with low dose methadone.

Many of us have been taking low dose methadone for our RLS for many years with no problems other than red tape getting prescriptions refilled. If you have any questions, feel free to post a message and we will try to answer them.

Monday, March 3

Welcome to

mmerhout, who has had RLS since childhood. mmerhout often dreads trying to go to sleep, and can't sit and watch TV or go to movies in those new recliner seats without having leg spasms. mmerhout sometimes gets symptoms when driving.

Are you current being treated? Do you know your ferritin number and is it over 75? We may be able to offer suggestions to gain better control but will need for you to post a message and tell us a bit more.

Tuesday, March 4

Welcome to

Zorro15, who has had RLS since 2017. It affects his sleep. His medication, pregabalin 550mg, made him overweight!

Unfortunately, weight gain can be a side effect of pregabalin. You might ask to try gabapentin instead. It is a similar medication and although weight gain can be a side effect, it is less common than with pregabalin. Your doctor should also be checking your iron levels, specifically ferritin, since iron supplements are often very helpful.

If you have any questions, feel free to post a message so that we can try to fill in the blanks for you.

Tuesday, March 4

Welcome to

TreWil64, who has had RLS for 15 years. Its condition and severity of symptoms have been mild to moderate, with occasional severe. Trewil has been using Requip the entire time but the dosage increasing...started at .5mg per day 15 years ago, am now up to 2.5 to 3mg per day and as needed.

The continual increase in your dose may be an indication that you are augmenting on Requip. Please read the posts in our forum on Augmentation to learn more. If you are augmenting, you need to discuss changing your treatment with your doctor to something that is not a dopamine agonist. You can learn more by reading the publication that the link in my signature points to or you can simply post a message so that we can give you specific pointers.

Wednesday, March 5

Welcome to

ATMRLS, who has had RLS throughout adulthood, but it's gotten much worse after 70. ATM is hoping to find solidarity, support, and coping ideas from others similarly affected.

We would be happy to provide whatever form of support that we can. All that you need to do is post a message telling us what we can do to help.

Wednesday, March 5

Welcome to

PricklyLegs, who started having RLS symptoms a year ago. Legs is looking for suggestions on treatment and coping.

We can provide all of that. If you don't find what you are looking for already in our files, just post a message and tell us a bit about your current treatment so that we know where to start with our comments. And just as important as suggestions for treatment are the warnings about what treatments that you shouldn't accept from your doctor because many of them are not very familiar with the proper way to treat RLS.

Friday, March 7

Welcome to

Watson196, who doesn't sleep with his spouse of 30 years much anymore because he keeps her awake. Sometimes at night the pain is crazy. He has tried every home treatment available. His doctor has me on a prescription but he does not understand how bad RLS is.

Most of us who are married share your pain of not sleeping with out spouse (I have been married for 52 yrs). Hopefully, your doctor is not treating you with a dopamine agonist (pramipexole or ropinerole) as these are no longer recommended for treating RLS except in special cases because they eventually cause augmentation, which is where they actually make your RLS worse. To learn more (and possibly educate your doctor), read the Mayo Clinic document that the link in my signature points to and then share it with your doctor. You might also want to search "AASM RLS Guidelines" where AASM stands for American Academy of Sleep Medicine.

You are also welcome to post a message to us asking any questions that you have.

Saturday, March 8

Welcome to

Sportmom, who has had RLS for over 40 years and just found out about the Foundation. She is currently and in the past has been on many different medications,now going through argumentation.

Take a look at our forum on Augmentation to learn more about it. Most of us have been there, so we understand what you are going through. If you have any questions or would simply like to vent, just post a message.

Tuesday, March 11

Welcome to

Keliz88, who has been struggling with symptoms for years but she tends to feel a sensation in her stomach right before my legs kick (sometimes her whole body twitches) uncontrollably so when she would explain to doctors they never connected it to RLS and would think it was something like IBS or something wrong with her stomach that was feeling. She always felt like she wasn’t being believed. Recently, she had a procedure under anesthesia and had a severe RLS experience while completely knocked out. Now her doctors believe her and are taking it seriously. She on the path of finding the right medication. She is looking to share experiences and support.

Your experience parallels mine. I also had symptoms in my abdominal muscles and went for four years with severe RLS that was untreated because my doctor was more concerned with treating my insomnia. I was finally diagnosed when I referred myself to a sleep clinic.

As for your treatment, I hope that your doctors are familiar with the latest guidelines and are not trying to start you out on a dopamine agonist (pramipexole or ropinerole). To see the latest guidelines, take a look at the Mayo Clinic document in my signature. You should also probably read the recent American Academy of Sleep Medicine publication that is shown below. If you are being started on a dopamine med, highlight the portions of the Sleep Medicine paper that says that these drugs should not be used and then show it to your doctor. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Wednesday, March 12

Welcome to

Inger1968, who is 72 yrs old and has had RLS since childhood. She is getting RLS daytime now more often and is therefore interested in finding out more about the latest.

If you are getting increasing symptoms in the daytime and are taking a dopamine med (pramipexole or ropinerole), you are very likely starting to augment, which is a side effect that is specific to RLS that most doctors are not familiar with.

To learn more, take a look at the posts in our Augmentation forum or read the document that the link in my signature points to. As for the latest set of recommendations, here is a link to the American Academy of Sleep Science's publication last fall. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Wednesday, March 12

Welcome to

Nancyrupe, who has had RLS since childhood. She remembers her legs moving and twitching from at least the age of 7 and every year it worsens. Her life and that of her families has been affected by her lack of sleep, needing to make frequent stops when driving, and many more things

Do you need suggestions on how to treat your symptoms? If so, just post a message and tell us what you are currently doing so that we can help direct you toward the best answer.

Friday, March 14

Welcome to

Karjbee1015, who has had RLS for over 20 years. Karjbee belongs to unlocked RLS UK and wanted to join a US group. Currently, Karjbee is weaning off pramipexole and could certainly use the support.

Many of us have been where you are today and would be happy to lend our support as well as provide any advice that you need about how to get through the difficult times that are ahead. All that you need to do is post a message and let us know what we can do to help.

Sunday, March 15

Welcome to

Florida Retiree, whose RLS has severely impacted Flordia's ability to get sufficient sleep. Most nights maybe get 4 hours: if the RLS is milder and less severe. Other nights, there is no sleep at all- just agony!

What are you doing to to manage your symptoms? Do you know your ferritin number? If you will post a message that gives us an idea of where you are right now, we may be able to suggest ways to improve your sleep.

Monday, March 17

Welcome to

Keith Berman, who has had RLS for approx 4-5 months and wants to see what works for others

You can either scan through our posts to find out what does and does not work, or you can take a look at this recent publication by the Am. Academy of Sleep Medicine to see what the doctor's recommend and which we wholeheartedly endorse. https://jcsm.aasm.org/doi/10.5664/jcsm.11390