MARCH 2023 - New Members

[Rustsmith]

Wednesday, March 1

Welcome to

jjmack, who is looking to find solutions for restless leg syndrome.

This is the right place to come to find effective ways to treat your RLS. Just post a message and tell us what you have tried so that we can have an idea of where to start with our suggestions.

[Rustsmith]

Wednesday, March 1

Welcome to

Becan, who for many years never had a full night's sleep until getting a RX for Sinemet, which worked great for about a month and then it made things worse. Then on to pramipexole for 10 years until augmentation set in and his sleep problems came back. Now he is on an opioid and low dose pramipexole, which has stabilized his RLS.

Your experience is similar to many of us. Fortunately, most of us do well for many years on low dose opioids, except for the issues of getting prescriptions written (doctors retiring can be an issue) or the looks at the pharmacy.

If you have any questions, feel free to post them and we will do what we can to help you out.

[Rustsmith]

Thursday, March 2

Welcome to

davidburchfield, whose RLS is destroying his sleep. LDN helped for awhile, but his RLS has become worse lately.

LDN only helps a few people and is therefore not one of the recognized modes of treatment. Have you had your ferritin (iron) levels checked? Often, increasing iron helps for those whose RLS is not too severe. And if you have any questions, feel free to post a note so that we can try to help.

[Rustsmith]

Thursday, March 2

Welcome to

mamhan, who has battled with (now severe) RLS for the past 35+ years. It has spread to torso and arms and mamhan feels like nearly all med options have been exhausted (and many others) due to augmentation. mamhan is currently on opioid therapy and is desperate for more/new information and better help going forward as this disorder makes the future seem hopeless.

The good news is that most who are able to find a doctor willing to prescribe opioids find that they are effective for many years (in some cases decades). Here is a link to the latest recommendations: https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to post a message asking any questions that you have.

[Rustsmith]

Thursday, March 2

Welcome to

Phantom38, who suffers from RLS and is looking for guidance on options to control it.

There are various approaches. The best recent summary is found here: https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to post a message with any questions that you have.

[Rustsmith]

Sunday, March 5

Welcome to

AJT, who has suffered with RLS off and on er whole.life. In 2020, she took an SSRI antidepressant for the first time and it triggered terrible RLS that didn't go away even after she discontinued the med.

That is one of the major issues with anti-depressants. They can trigger side effects that never go away, and yet they are not all that effective for treating depression. What are you doing to manage your RLS now? Has your doctor checked your iron levels? If you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Monday, March 6

Welcome to

Sbro500, who have many family members who have struggled with RLS and have suffered as well for decades. Sbro has tried many medications and remedies and still do not have it fully under control.

Your goal should be about 95% control. If you would like some suggestions about how to get to that point, just post a message that gives us an idea of what you are currently taking so that we know where to start with suggestions.

[Rustsmith]

Monday, March 6

Welcome to

rafali17, who is having RLS treatment difficulties, and is seeking information.

If you will post a message telling us what you are currently doing to manage your RLS, we can suggest ways to improve your control

[Polar Bear]

Monday 6 March 2023

Welcome to

RCRapp who has had RLS for decades. After long-term treatment with Mirapex has now experienced opioid antagonist withdrawal syndrome. Also experienced symptoms of depression that began within a week after cold turkey cessation of Mirapex, as prescribed by a different sleep specialist. The severity of the depression has lessened a bit but continues to be an impairment in my day to day life.

If you wish to ask questions please post and we will do our best to help. Information such as your Mirapx dosage, why you stopped it cold turkey etc would be useful. Also have you had your ferritin serum checked. Have you tried any other medications.

[Rustsmith]

Tuesday, March 7

Welcome to

marinater, who has been living with RLS for many many years. She is so frustrated and needs help. She is at her wits end to end RLS and be able to sleep.

We should be able to help. If you will post a message that tells us what you are doing and what you have tried, that will give us an idea of where to start with our suggestions.

[Rustsmith]

Tuesday, March 7

Welcome to

Sbrown1001, whose increasing RLS has made it impossible to sleep and therefore needs help.

If you can give us an idea of what you are currently doing to manage your RLS, we should be able to offer you some suggestions for improvement.

[Polar Bear]

8 March 2023

Welcome today to

bacvet123 whose daughter was found to have low iron/ferritin which was causing night time wakings. Oral iron made an immediate improvement but a year later she’s having horrible night wakings. She’s non verbal which makes it hard to know if this is still RLS or something else. Looking for help as her doctors don’t know anything about this.

We are sorry, this is such a difficult situation for you. What is your daughter's Ferritin level now, have any medications been prescribed. Also, this is just a thought, but has your daughter been checked for sleep apnea.
Please post giving us more information and we will do our best to help.

[Rustsmith]

Wednesday, March 8

Welcome to

cnixon1956, who said that RLS is an awful disease and it’s scary how little even the best doctors know about it. cnixon is interested in learning about treatments that other patients have found helpful.

Yes, it is unfortunate that most doctors are terribly ignorant when it comes to RLS, both diagnosis and treatment. Here is a document that describes the latest recommendation from the experts on the most effective treatment. Most of us have found this information to be accurate. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Wednesday, March 8

Welcome to

jwhornsby, who has had RLS for about 20 years and has gotten tremendous relief from the prescriptions from Dr Christopher Earley at Johns Hopkins. jwhornsby would like to help others get relief as well.

Many of us are very familiar with Dr Earley and have spoken with him at Foundation conferences as well as the rest of the doctors that lead the other Foundation Quality Care Clinics. Those of us with very severe RLS tend to be patients at those clinics or follow their published recommendations. Unfortunately, Hokins no longer allows Dr Earley to take on new patients who are not Maryland residents.

But feel free to join any of our ongoing discussions or start a new thread of your own.

[Polar Bear]

9 March 2023

Welcome today to

SadieMae who was diagnosed with RLS 20 years ago and has been on Mirapex almost that long, till it made symptoms worse. Now going through augmentation. Every night is a living nightmare.

Augmentation is horrible and it is indeed difficult. You will find information in the Augmentation Forum and can join any relevant discussion.
Feel free to start your own thread and tell us what you are doing to manage your symptoms at present. We will do what we can to help.