DECEMBER 2024 - New Members

[Rustsmith]

Thursday, December 5

Welcome to

christyallen, whose RLS is keeping her awake at night. She have tried everything and nothing helps for very long. Medications are not her preferred choice because of bad reactions to ones her doctor has used.

There are treatments that your doctor may not have tried that you can read about in the document that the link in my signature points to. There is also the new TOMAC device that has been approved for use with a prescription that is a pair of TENS-like bands that are placed beneath the knees. Also feel free to post a message on the board if you have any questions or comments or would simply like to join one of our ongoing discussions.

[Rustsmith]

Thursday, December 5

Welcome to

kkadams, who needs med info, rls info, others's experiences with symptoms, latest advances, etc

You can find the latest recommendations for medications by following the link in my signature. You can also learn about the latest (Sept) recommendations from the Am. Academy of Sleep Medicine at https://jcsm.aasm.org/doi/10.5664/jcsm.11390. And then there is the recently approved external treatment for RLS that is a specially modified TEN-link device that is sold under the tradename TOMAC.

And of course you can post a message at any time asking a question or providing a comment so that we can respond to you.

[Rustsmith]

Thursday, December 4

Welcome to

RLsteve, whose RLS basically prevents him from sleeping and is highly irritating at other times during the day when it arises for unknown reasons. The sleep problem is serious. RLS has gotten more consistent in the last two weeks for unknown reasons.

Welcome from another Steve! If you have any questions or would like to make any comments feel free to post a message as a new thread or join one of our existing discussions.

[Rustsmith]

Thursday, December 4

Welcome to

Kwillman4u, who suffers so badly from RLS. It’s not everyday but at least 4 times a week. She had it when she was little…. But last 10 years it has been strong. She is a 67yo female in NY… Last night she was up all night!

Does your doctor know the current ways to treat RLS? If not, provide this set of recent recommendations to him/her. These recommendations made some major changes, so your doctor might appreciate the information. And you can always post a message for us so that we can try to help you too.

[Rustsmith]

Sunday, December 8

Welcome to

figmo124, who is 73 and has had RLS most of figmo's life. The most severe case was today which required a trip to the emergency room. It has causedInterrupted sleep for several years. figmo generally manages it with high protein foods with Little or no carbs, absolutely no refined sugar. figmo's current meds are gabapentin and pramipexol.

If you have any questions or would like to join in one of our existing discussions, you are always welcome to post a message.

[Rustsmith]

Sunday, December 8

Welcome to

7fDxy45GQ8d3b4, who has recently been diagnosed with this dreadful condition. He spent 6 hours in ER yesterday and they said to see his GP, and her response was are you anxious?

Unfortunately, most doctors know very little about treating RLS. If you GP is the type that is willing to learn, try sharing this document with her. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

If she isn't then you need to find a new doctor and this time, one that understands RLS or is at least willing to learn from patients..

[Rustsmith]

Sunday, December 8

Welcome to

Glbrta, who has had RLS for over 30 years. Now she is losing sleep, suffering side effects and must get help to survive.

It sounds like you may be experiencing augmentation from a dopamine agonist. If that is what you are taking, you need to get off of it and not switch to a different one. Unfortunately, most doctors are not familiar with augmentation since it only happens to RLS patients on dopamine agonists. To learn more, you can read the messages in our Augmentation form or the document that the link in my signature points to. You can also post a message here so that we can try to help.

[Rustsmith]

Monday, December 9

Welcome to

2B-OreKnotWB, whose RLS is causing creeping devastation: years ago he was oblivious to the potential of RLS because it was iding behind sleep apnea; it worsened unnoticed until his Afib diagnosis two years ago. And more recently: augmentation and symptoms increasingly hard to control.

Ingenious login name, I like it. As for your augmentation, is it being treated? If you need to know more, read through our forum on augmentation and read the document that the link in my signature points to. Or simply post a message to the board and ask any RLS question like.

[Rustsmith]

Wednesday, December 11

Welcome to

Kmmabli, who is suffering from augmentation and has been deserted by Doctors as they want Kmmabli to go back on Neupro even though it was so much worse. THEY DO NOT UNDERSTAND!

You are correct in that most doctors do not understand augmentation, partially because it is a side effect that only happens to RLS patients on dopamine agonists. If your doctor might be willing to learn something from you, try sharing the document that the link in my signature points to. Otherwise, you need to find a new doctor who either understands augmentation or is willing to learn rather than just dictate your treatment. If you have any questions, you are always welcome to post a message here.

[Rustsmith]

Thursday, December 12

Welcome to

chauvir, who doesn't know what to do about his RLS. Doctors not seem to know what to do either. He is in a lot of misery.

There are two documents that you and your doctors need to become familiar with. One is the document that the link in my signature points to. The other is the recent American Academy of Sleep Medicine recommendations for treating RLS at https://jcsm.aasm.org/doi/10.5664/jcsm.11390

[Rustsmith]

Friday, December 13

Welcome to

rlcochetrusty, who has struggled for 40 years with RLS in his arms and legs. He is disappointed with medical attention to RLS.

Yes, it is unfortunate that for a disease that hits between 10 and 15% of the population, doctors are so ignorant and the best that we can do is to try to educate the ones that are willing to listen. If you have any questions,just post a message. We would be happy to share our knowledge.

[Rustsmith]

Friday, December 13

Welcome to

kapci.bob, whose RLS interrupts his sleep if he is not really careful about taking his medication on time.

Believe me, that is true for all of us. Everyone has spent hours waiting for their meds to work because they forgot to take them on time.

If you have any questions or comments you would like to share, feel free to post a message to us.

[Rustsmith]

Saturday, December 14

Welcome to

Doriwozniak, whose RLS has affected so much, not just sleep, but energy and relationships. She knows no one else who has RLS and feels isolated.

Some of your friends probably also have RLS but may not know it yet. RLS hits between 1 in 5 and 1 in 10 people in the us. But regardless, you now are a member of large community that is very willing to share their knowledge about living with this life changing disease. All you need to do now is post a message or join an existing conversation.

[Rustsmith]

Tuesday, December 17

Welcome to

Pattyaharting, who suffer from RLS and can’t sleep.

It sounds like whatever you are doing to manage your RLS needs to be changed. If you will post a message and tell us a little bit more about your RLS treatment, we will be able to suggest new lines of treatment that will allow you to get more sleep.

[Rustsmith]

Friday, December 20

Welcome to

Mattco199, who has suffered from RlS for about 15 years. Mattco is currently using pramipexole. This has been very successful although Mattco is experiencing symptom augmentation and is nearly at the maximum recommended dose. Mattco would like to connect with a community and ask a few questions.

You are welcome to ask any questions that you want, especially about augmentation since most of us have been through that (very unfortunately). ALl that you need to do is post a message for us to see.

And if you want to find out what the treatment alternative are to dopamine agonists, take a look at the document that the link in my signature points to.