Restless Legs Syndrome (RLS) Discussion Board

Friday, March 10

Welcome to

PJrls, who have been struggling with augmentation for the past 7 years, and is now making considerable progress. PJrls would like to share some thoughts and experiences with others to help them with their own journey.

And I thought that my suffering through one year of augmentation was a long time. Many of us have been through augmentation and are now on the other side. But we would love to hear your story about find out about your current situation.

Friday, March 10

Welcome to

Bearpaws, who has been dealing with RLS for at least 20 years now, and first experienced symptoms in the teen-age years. Bearpaws has been on dopamine agonist medications for about 18 years, and would like real-world, patient experiences to guide in tapering off the DA's and replacing the medication with opioid medications.

We would be happy to help you. Many of us have made the transition. The primary hurdle is finding a doctor who is willing to prescribe opioids for chronic conditions like RLS. If your doctor is willing, you have cleared a major hurdle.

To provide more specific information, it would be very helpful if you would post a message telling us the DA dose that you are currently taking since sometimes it is necessary to taper before switching and other times you just stop the DA and start the opioid all on the same day.

12 March 2023

Welcome today to

Sprout55 who has been suffering from RLS for 10+ years. At this point, Sprout55 has tried most everything with no relief or with debilitating drug side effects. Sprout is hopeful that joining this group will provide some much needed insight on other's experiences and lead to providers who are more knowledgeable and open-minded about RLS treatment.

Please do post in the Just Joined Forum telling us of your current and past treatment for your rls symptoms, what has helped even if just a little and what has not worked. Has your Ferritin been checked. Tell us what you can and we will do our best to help you.

16 March 2023

Welcome to Henrii who has rls and pain and sleeplessness because of rls .

Please make a post tell us how you have been managing your rls symptoms. Have you had your Ferritin checked. Tell us about any medications that have or have not worked and we will do our best to help you.

16 March 2023

Welcome today to

rachelpa who has had restless legs for 35 years, with sleep disruption the norm. It prevents her from attending anything requiring sitting in the evening.

Sleep disruption is what drives most rls sufferers to seek help and we all fully understand. Please make a post and tell us about your current treatment, your medications and dosages. This gives us a starting point to consider the way forward.

Sunday, March 19

Welcome to

MR.C, whose RLShas affected him for about 6 years with difficulty sleeping and even just lying down while watching TV, and sometimes it feels ok, manageable, other times its unbelievably frustrating. His wife's sleep also gets disturbed at times. He hopes we can find ways to find the root cause of which he has some ideas, but together we might have more relevant info or data.

Somewhat recent research has found that the "root" cause is an iron deficiency in the substantia nigra portion of the brain. This indirectly results in the poor functioning of both the dopamine and glutamate receptors in that region. The dopamine receptor issue is what causes our movement issues and the glutamate causes the insomnia side of RLS. There can be many causes for low iron in this area, such as genetics and low serum ferritin. Which is why some benefit from iron therapy and others do not. Research is continuing to try to find ways to enhance iron transport across the blood-brain barrier for those of us with genetic issues and to find new meds that work upstream of the dopamine and glutamate receptors and so do not have the side effects caused by the current types of meds used to treat RLS. But that will take years even though they have an idea of where to look.

In the meantime, feel free to post a message with your thoughts or simply join any of our existing discussion threads.

Monday, March 20

Welcome to

Rob28, who has serious thigh pain every evening.

Thigh pain is not necessarily a symptom of RLS, although some people experience it. If you have questions about RLS, the diagnostic process, treatments, etc., feel free to post a message and we will do our best to try to answer them.

Tuesday, March 21

Welcome to

SarahinWI, who 55 years old and has had RLS since her 20's (very mild at first, and far between). It was triggered by NyQuil, and other over the counter sleep aid meds. It progressed, the past three years she would get RLS almost every night, She would have to get up and do squats to "exhaust" my leg muscles before the "inner tickle" would go away. She found a "cure" with magnesium and melatonin. It really works for her.

Glad that those to supplements have been effective for you. Magnesium helps a few people who have a Mg deficiency. As for melatonin, it helps some people but is a trigger for others.

If you have any questions, feel free to post a message and we will try to answer them.

23 March 2023

Welcome today to

Bru who has been being treated for RLS for over 30 years. Has been through many different medications & is currently going through a very bad time, almost unable to sleep.

If you have been reading through the posts you will probably have noticed that having sleep issues is what leads most of us to seek help. Please make a post telling us what medications/dosages you have tried. Is your doctor supportive and have you had your ferritin serum blood levels checked, they need to be up around 100 and don't accept it if you are told 'normal'. Normal can be as low as 20. Give us some information, ask questions, and we will do our best to help you.

Friday, March 24

Welcome to

Janet in Spain, who has suffered with severe RLS for 40 years and been on Requip (ropinerole) for over 30. Requip is now starting to augment and she knows it is time to find a new medication. She needs to find a doctor in her part of the world. She cannot manage at all without treatment.

There are several doctors who might be able to help. The first that comes to mind is Diego García-Borreguero at the Sleep Research Institute, in Madrid. Another option might be Rodrigo A. Cunha at University of Coimbra, in Coimbra, Portugal. Both have been active in conducting clinical trials of new RLS meds.

Tuesday, March 28

Welcome to

JSB4, whose RLS causes constant squirming/wiggling like something was crawling around in JSB's legs/ankles.

What are you currently doing to manage your RLS? Have you had your iron levels checked? There are things that we can suggest that can improve the control of your RLS, but we need you to post a message to tell us a bit more.

29th March 2023

Welcome today to

Lissa496 who is a long-time RLS suffer with limited options and looking for new ways to control the suffering.

If you look through the Just Joined Forum you will find plenty of information. However it is often easiest if you just make a post and give us a history of any treatment you have tried and what does and does not work for you. Please do feel free to ask questions. This gives us a starting point to try and help you.

March 30, 2023

Welcome to

mailhotdw, who wants to learn about other's experiences and treatment options.

You should be able to get an idea of the experience of others by reading through some of our posts. For treatment options, the best source of information is this publication: https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you have any questions, feel free to post a message and we will try to answer them.

Friday, March 31

Welcome to

janalynp, whose mother and grandmother both had Restless Leg, and now she is starting to get it too. She doesn't want to face the sleepless nights like they did if there is anything she can do to stop it, or at least slow it down.

The key thing at this point is to educate yourself and find a doctor who is either knowledgeable about RLS or is willing to learn. The best place to start with learning about it is to read this document and then share it with your doctor. If you doctor is dismissive, find a doctor who is willing to work with you. https://www.mayoclinicproceedings.org/a ... 0/fulltext

Also, join the RLS Foundation and read all of their literature that is relevant to you.