Restless Legs Syndrome (RLS) Discussion Board

Friday, October 1

Welcome to

Shmily, who have just been told her daughter has RLS after a TBI. She wants to help her all she can, so she wants to lean to be able to help her.

We would be happy to answer any questions that you have. All you need to do is post a message with them. And if you can tell us what her doctor(s) are doing to treat her RLS, that would be very helpful.

Saturday 2nd October 2021

Welcome today to:

Jeffbradetich - who has had RLS for at least 30 years but over the past 6 months it has worsened and is becoming intolerable.

We hope we can help you. If you make a post and tell us of any medication history. It is possible for certain prescribed medications to cause augmentation - a worsening of your rls symptoms. Tell us about your rls journey and ask any questions, there is always something else to try.

Sunday 3rd October 2021

Welcome today to

purplejupo - whose RLS is terrible and severe and has been on prescription meds since 2012. Gralise and Mirapex worked great for 7 years until augmentation (from 2012-2019), combinations and different dosages of Neupro patch, Carbo/L-Depo, and Lyrica since 2019, with RLS never being controlled good like before. Also taking several supplements... iron, magnesium, zinc, Vit D, Vit C, glucosamine. For the past 2-3 months, purplejupo believes he/she is augmenting again, but neurologist wants to keep adjusting the dosages of current meds. Goes 2-4 days with none - 1/2 hour of sleep a day, then will sleep about 5 hours but getting up about 5 times during that time.-

If you make a post giving this information and detailing your current medications and dosages we will answer any questions you have and do our best to help your current situation.

Saturday, October 2

Welcome to

mombees, whose RLS has gotten worse even though she is on medication. She can barely get 6 hours sleep each night.

There are some meds that start off helping and then start making your RLS worse. If you would be willing to tell us what you have been taking, we may be able to offer some suggestions that you help you get more sleep.

Monday, October 4

Welcome to

lgreenrn, whose RLS has kept her from being able to ride in cars with other people because of need to get out and move her legs, sit through classes, entertainment venues, worship services, as well as wrecked her sleep. She cannot share rooms with family on vacation and has to drive separately everywhere she goes. Her life has been affected by RLS and she is seeking treatment to improve well being.

We would be happy to suggest the most appropriate modes of treatment (many doctors are clueless of the latest recommendations). All you need to do is post a note telling us what you have tried so that we know where to start.

Tuesday 5 October 2021

Welcome today to

James Joseph - who is Long term (24+ year) condition that governs my life negatively affecting work, relationships, travel, etc. While I feel as though I have tried all conventional and alternative therapies, am still hopeful of finding relief.

Being hopeful is what keeps us going and here on the Discussion Board we feel hopeful that there is always something different to try. Please feel free to ask questions, knowledge is power. If you will start a thread and give some information on your rls/wed treatment, your medications and dosages (if any) we will do or best to help.

Wednesday, October 6

Welcome to

maryp, who read about a side effect to the Covid virus - which she has not had. The symptom is a type of RLS called "restless anal syndrome". She has had this since she was a teen (60 yrs. ago) and never wanted to tell anyone about it because it was embarrassing and she knew no one would believe her. When she saw this news she thought maybe others do have this problem.

Although RLS is primarily in the arms, it can occur in just about any voluntary muscle group. The real question is whether any of the RLS treatments helps relieve your embarrassing symptoms.

Saturday, October 9

Welcome to

ALH, whose husband currently has RLS but they know it is secondary to another cause. They have been struggling to find good care and struggling to treat the symptoms. He is almost fully augmented and mirapex and ropinerole have been unsuccessful. They seriously need help.

There are several approaches that you can take. If you can travel to one of the RLS Foundation Quality Care Clinics, that would be great. If you are willing to post a note to tell us where you live, we may be able to suggest a doctor who is nearby or put you in touch with some in your area. And if his current doctor would be willing to learn, we can point you to the medical publications that you can share with his doctor to address his current augmented condition.

Sunday, October 10

Welcome to

Msbeck6067, who was recently diagnosed with RLS and am wants to learn as much as possible about it.

We will Be happy to help you learn as much as you cam about RLS. Just post a note with any questions that you have,

Sunday, October 10

Welcome to

tanjaman, whose RLS has changed his life: physically; emotionally and spiritually. His RLS usually "attacks" at bedtime preventing him from having a normal / stable sleep. The result is exhaustion the following day which then triggers a repeating cycle.

We have all been through through that. We can offer some suggestions to reduce that cycle if you are willing to post a note and tell us what you are currently doing to manage your symptoms.

Monday, October 11

Welcome to

barbara wills, who wants to know what works. Her RLS is making her miserable and is ruining her marriage.

There are a number of steps that are recommended to treat RLS starting with iron therapy if your ferritin is low (for RLS). If you have questions, just post a note to start a conversation.

Monday, October 11

Welcome to

rmatthendrick, who been dealing with RLS since July (2021). Any meds he has been prescribed either stop working after a few days or they make symptoms worse, like full body augmentation. He is looking for ideas and encouragement through this total nightmare.

Augmentation can occur within days for some. Have you had you iron levels checked? Have you tired gabapentin or Lyrica? If you will post a note telling us what you have tired, we may be able to offer some suggestions.

Tuesday, October 12

Welcome to

Jeantys, who has struggled with RLS for 20 years and is still looking for answers.

We may be able to answer your questions. Just post a note and tell us what we can do for you.

Wednesday 13 October 2021

Welcome to:

moinaraliz - who was diagnosed with RLS 3 years ago. In bad periods it seems to get uncontrollable, even to the points of seizures. moinaraliz wants to get to know this illness more, since the doctor's knowledge is limited and to be educated and open for a better cure.

We are all sufferers here and want to help you. Please post, telling us of any medications you take/have taken, dosages etc.

Wednesday 13 October 2021

Welcome to

Roy - who has RLS and would like to share advice and experiences with others who have RLS. Roy says it is a strange malady and hopes that this community will be another tool to navigate - or to just find solace - through the journey.

Please make a post and tell us about your RLS, your treatments and what has or has not been of benefit to you. We look forward to hearing from you.