Restless Legs Syndrome (RLS) Discussion Board

Thursday, January 23

Welcome to

Renman4240, whose RLS has changed life. Renman cannot sleep and at times it feels like a hopeless condition that Renman will never get under control.

There are ways to manage the symptoms of RLS to get it under control, it just requires finding the right medication. If you would like to hear suggestions that you can pass to your doctor, post a message. Or, you can read the Mayo publication that the link in my signature points to to learn about everything that the experts recommend.

Friday, January 24

Welcome to

dana hayne, whose RLS has dominated her life. She cannot travel without considering her RLS. Her daily life is impacted by her RLS. Her eating habits have to reflect her avoidance of food triggers.

Welcome to the discussion board. If you have any questions or would like to join an ongoing discussion, just post a message.

Saturday, January 25

Welcome to

Cindyjo57, who has severe RLS and is a renal patient. She goes for days without sleep and takes so many Rx. Her RLS is affecting her mental health.

Treating RLS in Renal patients is a complicated matter. Your nephrologist may or may not be up on the latest guidelines. To learn more about how your RLS should be treated, take a look at the Mayo document that the link in my signature points to and pay special attention to the section about special populations, which is where they discuss your condition. You can also post a message and we can try to help, but be sure to mention your status as a renal patient.

Saturday, January 25

Welcome to

wolfskimba, who was diagnosed in 1991 and is looking for any that can be done to assist in the treatment of wolfskimba's RLS in order to get a good night's sleep.

Your best bet at this point is probably to share this document from the American Academy of Sleep Medicine with your doctor. It is the newest set of guidelines for treating RLS. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Sunday, January 26

Welcome to

jimray, whose RLS causes poor sleep at night and frustration

Are you doing anything with your doctor to try to manage your symptoms? We may be able to provide some suggestions since many doctors are clueless when it comes to treating RLS. All that you need to do is post a message and tell us a bit more.

Monday, January 27

Welcome to

DontLikeRLS, whose severe refractory RLS rules life, particularly sleep. First line drugs are no longer effective, and so DontLike wants to learn about other drugs used to treat the disease, and the experience others have had with these treatments. The medical advice DontLike has been receiving has been inadequate in finding the necessary treatment, and the only way to find it, is research it individually.

The best two sources of information about treatments are the Mayo Document that the link in my signature points to and the American Academy of Sleep Science's latest set of guidelines https://jcsm.aasm.org/doi/10.5664/jcsm.11390

You are also welcome to post a message to ask about how well each treatment has worked for our members.

Monday, January 27

Welcome to

kanebrown, who is exhausted. RLS makes kane feel like he is going crazy.

There are treatments that can help you get more sleep and energy. If you post a message and tell us about your current treatment, we should be able to suggest something to discuss with your doctor.

Monday, January 27

Welcome to

Sus, who has had RLS for around 6 years. She is taking gabapentin and cannabis now. She has tried many medications- ropinerole (which should be outlawed due to its incidence of augmentation), Horizant which made it impossible for her to sleep, strangely and other meds and things. She is still having a difficult time sleeping and could certainly use some help!

It is strange that you can take gabapentin but Horizant caused insomnia since Horizant turns into gabapentin once it is in the bloodstream. Pregabalin (Lyrica) is the third option in that group of meds. To learn about all the various treatments, take a look at the Mayo document that the link in my signature points to. You are also welcome to post a message and our community can try to answer any questions that you have.

Monday, January 27

Welcome to

netadmin67, who has RLS. His sleep Dr is helping him wean off Mirapex. It's the worst thing he has been through. He is trying to find a better path forward.

Yes, tapering off of pramipexole can be very difficult. To learn about the latest treatment recommendations, take a look at this document: https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Monday, January 27

Welcome to

Aguywithrls, whose RLS has ruined his life and has taken it over completely.

Most of us sympathize with that statement. If you have any questions or there is anything we can do to help regain control of your life, just post a message and tell us how we can help.

Tuesday, January 28

Welcome to

jitters62, whose husband has severe refractory RLS as a result of Ropinirole augmentation. His RLS is managed very well with hydrocodone, but in his case it has an alerting effect resulting in chronic insomnia.

Several of us (including me) also experience the alerting effect. The problem with alerting and hydrocodone is that the hydro wears off at about the same time as the alerting. What he needs to do is to discuss switching to a longer half life opioid with his doctor. This includes methadone, Suboxone and tramadol ER. All three of these opioids last for 24 hrs, so they can be taken mid-day so that he is over the alerting by bedtime but the medication still controls his RLS.

If you have any questions about that, feel free to post a message so that we can try to help.

Tuesday, January 28

Welcome to

Tima, who has been an RLS patient since 2018. She goes to Dr Ondo at Houston Methodist for her needs. Thanks to the RLS Foundation, she found this doctor. She is thankful to the Foundation for helping her learn more about how to cope with her condition.

You have one of the best RLS doctors in the US (I used to see him myself). If there is anything that we can do to help, just post a message. You are also welcome to join in any of our existing discussions.

Friday, January 31

Welcome to

Lkach1, who has had RLS since the my 30s, and Lkach1 is now in the 60s but is now going through a rough spot because iron is low.

If you need suggestions on how to increase iron levels, just post a message and let us know more of the specifics of your situation.