Restless Legs Syndrome (RLS) Discussion Board

Monday, January 13

Welcome to

Patinagold121, who has had RLS since she was a teenager and is 73 now. She takes Rx meds plus OTC meds but still experience symptoms that affect her quality of life. She is Always looking for new forms of treatment or help for this condition.

If you have not seem the latest recommendations from the American Academy of Sleep Science, you can find them here. They don't say much about new treatments but do recommend against the use of several older ones.https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Monday, January 13

Welcome to

Lisamason50, who has RLS. She has suffered with augmentation and it has been miserable.

If you are still augmenting on one of the DAs, just post a message and we can explain what you need to get past this phase of your RLS treatment.

Tuesday, January 14

Welcome to

sleepdeprived70, who has worsening symptoms, that are earlier in the day and require more and more meds to be able to be comfortable and sleep.

If your meds are one of the dopamine agonists, then it sounds like you are augmenting and need to change to a different form of treatment. Take a look through the Augmentation forum to learn more or post a message so that we can share our experience with you.

Wednesday, January 15

Welcome to

Hilary Tyne, who is up pacing the floor 1-3 times a night. Sometimes she has to have a bath in the night, but it doesn't always work. She is tired during the day after a bad night. She is scared that it gets worse with age. She is 70.

Unfortunately, it does get worse with age - BUT, there are effective treatments that can hold it in check. Is your doctor currently treating your RLS? If you would like suggestions, have questions or just would like some sympathy from others who understand your situation, just post a message and let us know how we can help you.

Thursday, January 16

Welcome to

Pandamm, who says that the worst aspect of RLS is the way it is disturbs your sleep pattern. Pandamm is desperate to find a way to alleviate this problem.

There are a number of effective ways to treat RLS. Gabapentin and pregabalin (Lyrica) can be effect in helping to get better sleep. Iron therapy that elevates ferritin levels over 75 also helps many.

If you have any questions, please post a message so that we will have an idea of how we can help you.

Thursday, January 16

Welcome to

Melliemoo, who doesn't sleep well ever. Melliemoo's partner sleeps in another room and Melliemoo feels over weight because of no energy to exercise.

Are you receiving any sort of treatment? Do you know what your serum ferritin number is? We can provide suggestions to help you regain control of your life and maybe even get your partner to return to your bed. All that we need to know is a little bit more about your current treatment so that we will know what to suggest.

Saturday, January 18

Welcome to

2phionna3, who was born with RLS and has been on 1 mg clonazepam for 30 years, but now has augmentation, i.e., two days without sleep weakens coping abilities. 2phionna3 has an allergic reaction to ropinerole and is currently working on new solutions.

You definitely need to read the Mayo document that the link in my signature points to as well as this second document that was recently released by the American Academy of Sleep Science. Both of these provide the latest guidance for the treatment of RLS. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

And you are always welcome to post a message with any questions that you have. One of our members has been through the process of getting off of clonazepam, which is very lengthy and difficult. He would be happy to share his experience with you if you just ask.

Sunday, January 19

Welcome to

bevydawn, whose RLS has gotten worse and she believes she is currently augmenting. She cannot enjoy so many things, watching a movie with her kids, reading a book, long drives. She is feeling helpless.

The signs of augmentation are that they symptoms occur earlier in the day or spread from the legs to other parts of the body where they weren't before. If you are augmenting, you need to change to a different class of medication. You can learn a lot from our Augmentation forum or from the document that the link in my signature points to. Or simply post a message with your questions and we will try to answer them.

Sunday, January 19

Welcome to

Cindyc, whose RLS has caused sleeplessness, stress and anxiety.

What are you doing to manage your RLS? Do you know your ferritin number? If there is anything we can do to help, just post a message and ask.

Sunday, January 19

Welcome to

johngsell, who had RLS before he even knew what it was and 45 years later it's only worse. Every night, same leg, same time.

Is your doctor helping with finding relief? There are very effective treatments, so of which are as simple as a single iron supplement each day. We would be happy to provide you with guidance if you need help. All that you need to do is post a message to us.

Monday, January 20

Welcome to

dotpath, who has severe RLS and wants to have news updates

Here is the latest news update. The American Academy of Sleep Science released a new set of treatment guidelines. You can read about them here: https://aasm.org/new-guideline-provides ... -syndrome/

Tuesday, January 21

Welcome to

John Beckwith, who wants to share one possible treatment.

We look forward to hearing about your treatment. Just post a note and tell us about it.

Wednesday, January 22

Welcome to

BAL, whose RLS has made her life extremely limited. She does not sleep more than two hours a night, maybe less.

There are ways to a doctor can treat RLS that will allow you more sleep, but many are not familiar with what to do. If you are willing to post a message to tell us what you are currently doing to manage your symptoms, we can probably suggest what needs to be changed.

Thursday, January 23

Welcome to

tdfb-1973, who feels consumed by his RLS. He believes he is experiencing augmentation. He is only sleeping a few hours a night.

To learn more about augmentation, read about it in our Augmentation forum. You are also welcome to post a message to us with any questions that you have.

Thursday, January 23

Welcome to

Madhttr, who has had RLS for 15 years, augmented from pramipexole, and is currently withdrawing to switch to gapapentin. Madhttr has an Inability to sleep or sit still in the evenings.

Pramipexole withdrawal is very difficult and it takes about a month for the RLS symptoms to subside. Many of us have been through it and to say that it is difficult is a severe understatement. If you have any questions or would simply like to rant, feel free to post a message.