Restless Legs Syndrome (RLS) Discussion Board

Saturday, February 1

Welcome to

Donjam, who needs help with periodic limb movement disorder that worsened after hip surgery.

PLM is treated in much the same way as RLS. In fact, genetic studies indicate that it may actually be a subset of RLS. To learm about the possible treatments, take a look at the document that the link in my signature points to. Or, you are always welcome to post a message with any questions or comments that you have.

Sunday, February 2

Welcome to

SDMORRIS, for whom It is hard to fly on a plane and is difficult to watch a movie or nap.

That is a short list of the things that all of us find to be more difficult with RLS. If you would like some suggestions about things you can do to make those activities easier, just post a message with your questions.

Monday, February 3

Welcome to

Lch333, who has been an RLS sufferer for 20+ years. Lch has been trying different meds and non-RX avenues to get some relief.

To learn about the latest recommended treatments, take a look at the document that the link in my signature points to. You are also welcome to post a message with any questions that you have or to join in one of our other discussions.

Monday, February 3

Welcome to

ChemepsuB, for whom every single day is full of suffering from RLS and just plain misery.

If you would like some suggestions on how to improve control of your RLS and reduce your suffering, just post a message and give us an idea of what you are currently doing so that we can have an idea of what to suggest.

Wednesday, February 5

Welcome to

Susan Clark Brown, whose RLS has frequently kept her from being able to sit, lie down and sleep, disrupting what would otherwise be a normal schedule.

There are ways to get your RLS under control. If you would like suggestions on how to return to your normal schedule, just post a message and tell us a bit about what you are currently doing for your RLS.

Thursday, February 6

Welcome to

Mobrecht59, whose RLS causes frustration and depression. Sometimes Mobrect wishes to be able to find a doctor who really understands RLS and who cares.

We can give you suggestions on how to find a doctor who understands RLS or how to educate your current doctor in how to properly manage your symptoms. All that you need to do is post a message that gives us an idea of where you live.

Saturday, February 8

Welcome to

BonnieG, who suffers from RLS. Her symptoms are on the severe side. She has lived with this for 30 years.

If you would like some suggestions on how you might be able to improve control of your symptoms, just post a message and give us an idea of how you are currently managing your RLS.

Saturday, February 8

Welcome to

Cinderella7, who is trying to find something that relieves her RLS. She hopes that if someone has found something that works, perhaps it would work for her.

There are a number of things that help and the choice depends upon how severe your RLS is. You can find a number of non-pharmaceutical treatments that work in our forum on that topic. Or, if you check the document that the link in my signature points to, you can see the four tiers of that the RLS experts recommend.

And, you are always welcome to post a message, tell us a bit about your RLS and ask for suggestions.

Monday, February 10

Welcome to

Jude, who has 30 yrs of suffering from jiggling legs, mainly in the evening and in bed. He has been on dozens of meds and is now on the TOMAC, which doesn't always work. He is at his wits end and would like to hear if anyone has luck with TOMAC (which also goes by the name Nidra)?

TOMAC has only been approved for treating RLS for a short time, so I hope that you receive some replies. One of the issues with treating RLS is that many doctors do not know how to properly manage it, so patients end up with a long string of treatments that were probably going to fail before even starting. You can learn about the treatments that the experts recommend (other than TOMAC) by reading the document that the link in my signature points to.

Thursday, February 13

Welcome to

klmnola50, who has battled RLS for over 30 years. klmnola would appreciate any advice from others as well as share to hopefully help someone else. Although this disease isn't fatal klmnola is surprised more lives haven't been lost to it. The mental side effects have been devastating.

Lives are lost to it by way of suicide, we just don't hear much about them for the sake of the families involved. Those with RLS are far more likely to become suicidal than the general population. If you fit that description, get help.

As for advice, all that you need to do is post a message with any questions or comments that you have.

Thursday, February 13

Welcome to

casualuser, who has ADS and RLS and wants to learn some more about how levodopa, a dopamine antagonist, can alleviate his symptoms, and why his levodopa retard doesn't work that well. He also wants to learn some techniques about sleeping well with RLS, and how it disturbs his sleep.

Levodopa is generally not a good idea for treating RLS unless you also have Parkinson's Disease. Regular use of levodopa (which actually isn't an agonist it is true dopamine) is the quickest way to become augmented. Dopamine augmentation occurs when the med stops helping and starts making your RLS worse and research is beginning to indicate that this also causes permanent damage, even after you get off of all dopamine type meds.

To learn about the latest recommended treatments for RLS, read through this document from the Mayo Clinic https://www.mayoclinicproceedings.org/a ... 0/fulltext

Thursday, February 13

Welcome to

dodgethis, who has had RLS for years. Occasionally dodgethis has periods where it goes away but then it comes back. dodgethis is afraid to take meds as it seems like there aren't any that don't cause augmentation.

Only the dopamine agonists (and sometimes tramadol) cause augmentation and the recent RLS treatment recommendations from the American Academy of Sleep Medicine actually recommend AGAINST prescribing dopamine meds to RLS. Iron therapy (either oral or IV) is very safe and gabapentin/pregabalin are also effective for many and will not cause augmentation.

To see the recent Sleep Medicine recommendations, take a look here: https://jcsm.aasm.org/doi/10.5664/jcsm.11390

You are also welcome to post a message with any questions so that we can try to help you out.

Thursday, February 13

Welcome to

Kakally, who has had RLS since aged 35 (69 now). Her mum had it and all 4 children have it, 2 of the 3 girls have benefited from IV iron infusions when pregnant..
She had 4 torturous years with augmentation from lowest dose rotigotine. She fought, as many of us do, to get off it and with her 1st iron infusions (which she also fought for) stopped rotigotine but still requires tramadol 100mg in the evening and flow release buprenorphine patch. She is a retired medic and have studied the history of the management of RLS and all the missed warnings and crimes that have lead to where we are now with 20+ years of wrong teaching, delayed and wrong management and delayed and ignored research. She lives in the U.K. where the are so much further behind the USA .

Welcome to the group. Please feel free to join in any discussions or start a new discussion thread on a topic of your choosing.

Saturday, February 15

Welcome to

Aekara21, who has recently gotten RLS and is trying to find out what to do

Take a look through the document that the link in my signature points at to learn the ways that RLS experts recommend treating RLS. Or, you can post a message with any questions that you have and we will try to answer them.

Saturday, February 15

Welcome to

acress, whose mom has it and she has started having mild symptoms in the last year. It is now getting worse. It makes her so uncomfortable she wants to cry.

If you are in the early stages, it is very possible that increasing your ferritin level (a measure of iron stores in the body) may be enough to bring it under control. As your doctor to check your ferritin (this is not part of a standard serum iron test). If it is less than 75, you and your doctor should discuss whether it would be better to try an oral iron supplement or whether you are anemic enough to justify an iron IV treatment.

You can also feel free to post a message asking any questions that you have. We are here to try to help.