DECEMBER 2024 - New Members

[Rustsmith]

Sunday, December 1

Welcome to

MarkJ, who has been experiencing RLS for the past several months. Like many others, insomnia seems to be getting worse. He hopes that by registering he can get suggestions on relief.

To learn more about getting relief from RLS, read through the document that the link in my signature points to. Since your RLS has only recently appeared, it is very possible that treatment with an oral iron supplement is all that you need. But regardless, feel free to post a message with any questions so that we can try to help you as much as possible.

[Rustsmith]

Sunday, December 1

Welcome to

KBer25, who has RLS and is looking for insights for treatment

The best source of information about the accepted treatments for RLS is the document that the link in my signature points to. You can also post a message on the board with any questions that you have and we can try to answer them for you.

[Rustsmith]

Monday, December 2

Welcome to

diggerd, whose evenings are exhausting. The leg "thing" can sometimes start at 4:00, and last till bedtime. diggerd is lucky in that it subsides when at bedtime but diggerd's PCP is not on board with the low ferritin levels, So diggerd says that it sounds like think it is time to find someone else.

Your choices for help are either to find another PCP or to request a referral to a movement disorder neurologist. Since your RLS sounds like it is still mild, iron therapy has a good chance of working so another PCP might be your easiest choice. Regardless, if you have any questions, feel free to post a message so that we can try to help.

[Rustsmith]

Tuesday, December 3

Welcome to

davidpaddle, who struggles to sleep because his feet are restless.

Have you discussed this with your doctor? If so, do you know your ferritin number? Often, iron therapy (oral iron supplements) is all that is necessary to manage RLS in the early stages. But, tf you have any questions, you can always post them and we will do what we can to answer them.

[Rustsmith]

Tuesday, December 3

Welcome to

Lsp55, who goes to bed and her legs will not stop moving. She tries to meditate to keep them calm & it’s like they have a mind of their own. It’s crazy. Requip isn’t helping anymore.

If Requip has stopped working, you are probably augmenting. Augmentation is where a dopamine med that used to work has stopped working and now it is making things worse. Many doctors are not familiar with it, so you may need to educate yourself and then your doctor. To learn more, read about it in our Augmentation section and also read and print the document that the link in my signature points at and then share the document with your doctor. Good Luck! because Requip withdrawal is not easy. In the meantime, please post a message and keep us informed of your progress. We will be happy to provide support during this phase and to answer questions about it.

[Rustsmith]

Tuesday, December 3

Welcome to

p.conney, who has been suffering for over 15 years, family doctor has tried several medications which only work for a short time. As soon as p.conney goes to bed usually in less than fifteen minutes the urge to move begins. Exhaustion and sleep happen near 2 am. sleepy all day

Family doctors are usually not well informed on the treatment of RLS because it is not covered in their training. You will need to educate yourself and your doctor in order to receive proper treatment. You can start your education by reading the document that the link in my signature points to or you can share very recent set of recommendations with your doctor https://jcsm.aasm.org/doi/10.5664/jcsm.11390

[Rustsmith]

Tuesday, December 3

Welcome to

Royh1985, who has had RLS now for over 10 years now and it's getting worse and he is running out of treatments for it and he is getting it in his arms.

If you are getting it in your arms now, you are probably augmenting and need to get off of any type of dopamine medication. Take a look through our Augmentation form as well as the document that the link in my signature points to to learn more. And you can always feel free to post a message so that we can try to answer any questions that you have.

[Rustsmith]

Tuesday, December 3

Welcome to

Cinnamon toothpick, who finds RLS to be challenging and frustrating. She can’t find anyone who understands her struggles.

You have just found an entire community who not only understand, but share, your struggles. If you have any questions, just post a message. Otherwise, feel free to join any of our discussions that you find interesting.

[Rustsmith]

Tuesday, December 3

Welcome to

Jgbutler40, who has suffered with this wretched curse since high school and is now 69. Jg is always looking for new answers, new things that may work and others experiences.

This is a great place to find all of those things. New information includes the recent Am. Academy of Sleep Med recommendations https://jcsm.aasm.org/doi/10.5664/jcsm.11390 as well as the TOMAC device that doesn't involve medications but does require a prescription. And of course, you are always free to post a message on the board.

[Rustsmith]

Wednesday, December 4

Welcome to

bridget, who has had RLS all her life but it is getting worse as she gets older, 75 years now. She has augmentation, has tried many medicines including suboxone which was a disaster.

Dr Earley at Johns Hopkins has stated that all opioids have different side effects and that that is the reason why there are so many different choices. If Suboxone didn't work, there are others to try. Tramadol ER is a very different type of opioid that your doctor might be more willing to try than methadone or oxycodone. Please post a message to ask about this since many of us have experience in this area that we would love to share.

[Rustsmith]

Wednesday, December 4

Welcome to

Shari, for whom it has been a long, difficult journey - largely because well-meaning doctors know so little about RLS and treatments. Poor sleep, crazy nights: the "night walks." For years, treated with Clonezepam (stopped when I realized it was a benzodiazepine), then gabapentin (works with occasional flareups." This Member Portal is extraordinary - shared the clinical info with my doc who received the information very well.

If your doctor received the Foundation information well, try providing a bit more education with the recent Am. Academy of Sleep Medicine's recommendations for treating RLS. You can find it at: https://jcsm.aasm.org/doi/10.5664/jcsm.11390

And you are always welcome to post any questions on the board or join in any of our discussions.

[Rustsmith]

Wednesday, December 4

Welcome to

Vandenberg, who can’t sit still! She is unable to focus, to read, watch tv. She doesn’t know how her husband puts up with her!

We should all be grateful for the support that we receive from our partners, especially for the issues that we cause during the night. If you have any questions, just post a message so that we can try to help you gain better control of your RLS.

[Rustsmith]

Wednesday, December 4

Welcome to

ShortRun42, who was diagnosed with RLS in 1986. SHortRun's neurologist then said that by age 50 there would be a cure. It's 13 years later and short run continues to search for a good night's sleep and a way to manage symptoms. ShortRun has tried dopamine agonists, opioids, iron therapy and a fix has proved elusive. ShortRun looks forward to hearing about other RLS sufferer's journey.

You can read a number of stories in our files or you can create a new discussion thread by asking for the experience of others.

[Rustsmith]

Wednesday, December 4

Welcome to

Shabooms, who needs someone to talk to about her RLS that understands what she is going through.

Everyone on the board understands what you are experiencing. All you need to do to talk with us is either to post a message with a topic you wish to discuss or join in an existing discussion thread.

[Rustsmith]

Thursday, December 5

Welcome to

Sean996, who has had been diagnosed RLS for 14 years now, and several friend and family that suffer from it as well.

If you have any questions or need suggestions for new treatments, just post a message and we can try to help.