MAY 2023 - New Members

[Rustsmith]

Tuesday, May 2

Welcome to

Louie Dog #1, whose RLS affects everyday routines and who does not look forward to sleep at night.

We can all relate to not looking forward to sleep at night. What are you doing to manage your RLS? We can probably suggest ways to improve your control if you would be willing to post a message and tell us what you are currently taking for it.

[Rustsmith]

Thursday, May 4

Welcome to

Apollo446, whose RLS has deteriorated over the past year. It has now moved to the arms, which has had a devastating impact on relationships.

If you have been taking one of the dopamine agonists (pramipexole, ropinerole or the rotigatine patch), then moving into the arms is an indication of augmentation. If that is your case, read through our Augmentation forum and talk to your doctor about switching to a non-dopamine based medication.

[Polar Bear]

Thursday 4th May 2023

Welcome today to

RestlessNan who has had RLS since teens and is now completely dependent upon medications not to have them 24 hrs/day. RestlessNan wants to stay on top of new medications and treatments. If the RLS becomes active due to missing a dose or taking it late, it nearly incapacitates her. RestlessNan is looking for a neurologist in Minnesota with a special interest in this syndrome.

Please make a post telling us of your RLS treatment, your various medications and what has or has not worked. We are pretty much dependant on our medications in one way or another. This gives us a starting point to try and help you.

[Rustsmith]

Friday, May 5

Welcome to

Jczzzzz35, who has had RLS since childhood-with various & changing symptoms -RLS is a predominant factor in her life, which is significant given that she has many medical issues. RLS along with psych issues have contributed to major sleep disorders, which in turn, affect every aspect of her life. As RLS sufferers know, there are few more pervasive conditions with this level of life disruption.

If you would like suggestions about how to improve the management of your RLS, all that you need to do is post a message that tells us a bit about what you are currently taking for it. We may be able to offer suggestions that you could discuss with your doctor.

[Rustsmith]

Saturday, May 6

Welcome to

RLScke, whose RLS used to be the occasional distraction but has turned into a daily occurrence. In one sense, it's turned life on end. RLScke didn't use to have to think about time so much and now anticipates the hour to take medication or dreads missing a dose. As everyone knows, it significantly impacts your day/life and not in a way one would imagine, any of us enjoy experiencing.

If you have any questions that you would like to ask, just post a message and we will do our best to answer them.

[Rustsmith]

Monday, May 8

Welcome to

LEEjet, who has has RLS for nearly 30 years and itseems to be getting worse and diminishing her quality of life due to lack of sleep.

If you would like any suggestions for improving the control of your RLS, just post a note and tell us a bit about what you are currently doing to manage it.

[Polar Bear]

9th May 2023

Welcome today to

TJ8122023 whose symptoms first began about a year ago but only recently started happening more frequently and with greater severity.

Are yuo taking any medication for your symptoms, certain medications may cause augmentation and worsening symptoms. Also some over the counter medications may worsen symptoms. Please make a post giving information on how you are managing your rls. This will give us a starting point to try and help you.

[Rustsmith]

Wednesday, May 10

Welcome to

Sasssey, who can't sleep at night and so she is feeling bad because of no sleep.

If you are willing to tell us a bit about what you are currently doing to manage your RLS, we can probably offer some suggestions that will help you get more, and better, sleep.

[Rustsmith]

Friday, May 12

Welcome to

Hennessy, whose husband has RLS and she is trying to help him.

We would love to answer any questions that you have. And if you can tell us what meds that he is taking, we may be able to offer some suggestions of things that he should discuss with his provider.

[Rustsmith]

Monday, May 15

Welcome to

KooyanKlub, who lives with 2 people with severe RLS, her partner and daughter. It affects all our lives - medication, mental health, sleeping in separate beds, restricted travel.

There are ways to improve the lives of those with severe RLS. Many of us here have that level of the disease. If you have any questions or would like suggestions, just post a message and we will do what we can.

[Rustsmith]

Monday, May 15

Welcome to

ItchyTwitchy, whose RLS is caused by Antidepressants and Ropinirol. It has almost incapacitated her and disrupted all aspects of her life.

The normal recommendation for ADs is to try Wellbutrin (but it doesn't work very well) or one of the opioids that also functions as an AD (if you can find a doctor who understands that and is willing to try. The two alternatives are tramadol, which is similar to Effexor and Suboxone). If you have any questions that you would like to pose, just post a note and we will try to help you as best we can.

[Rustsmith]

Thursday, May 18

Welcome to

rcovell8, who is 42 years old and had been dealing with RLS since he was a teenager. He is tired of it since nothing helps.

There are ways to manage RLS symptoms, but many (most?) doctors don't have a clue about how to help. If you would be willing to give us a summary of the things you have tried, we can probably suggest some approaches that will help improve your situation.

[Rustsmith]

Saturday, May 20

Welcome to

Slangis, whose RLS has been a problem for 2/3 of Slangis's 73 years. Slangis has been under fairly good control at times but it mostly has a devastating affect on quality of life.

Quality of life is second only to sleep as a complaint about RLS. If you would like suggestions that might help improve your control so that it doesn't cause as many quality of life issues, just post a note and let us know how we can help.

[Rustsmith]

Tuesday, May 23

Welcome to

Darian, who says that RLS is awful!!! And is hoping to see how others are coping.

You should get an idea of the variety of ways that people use to manage their RLS by reading through our forums. If you have any questions, feel free to post a message and we will try to answer them.

[Rustsmith]

Wednesday, May 24

Welcome to

tomirae, who has had RLS her entire life. She started ropinirole 6 months ago and her RLS has become much worse (more prolonged and now her legs/muscles will twitch, spasm and have uncontrolled movement). It originally was just a creepy crawly and she had a need to move her legs (flying on airplanes was a nightmare) and was intermittent, but now it is every night, causes severe anxiety and her legs move on their own.

You may be in the initial stages of augmentation. Read through our forum on Augmentation to learn more. Unfortunately, most doctors do not know anything about this side effect of using dopamine agonists like ropinerole and also do not know what is involved with treating augmentation. Did your doctor test your iron levels, especially ferritin? If your iron is low, that speeds up augmentation. If you willing to post a note to tell us about your current dose, we may be able to explain in greater detail.