JANUARY 2022 - New Members

[Rustsmith]

Saturday, January 1

Welcome to

Sandman, whose RLS changed her life. She can’t work 9-5, can’t sleep with a partner and can’t depend on her sleep.

If you have questions that you would like to get answered, just post a note and we will try to answer them.

[Rustsmith]

Sunday, January 2

Welcome to

1575g**, who cannot complete dialysis because of RLS!

Take a look through our Special Populations to see what info we have for dialysis patients. And feel free to post a note with a few more details and any questions you have so that we can try to provide some advice that will help you get back onto dialysis.

[Rustsmith]

Sunday, January 2

Welcome to

lala, whose RLS has affect her sleep, her relationship and it's affected her daily living.

We would be happy to answer any questions that you have or to make suggestions to improve the management of your RLS. All that you need to do is to post a note to get the ball rolling.

[Rustsmith]

Thursday, January 6

Welcome to

Michellelee, who has to put up with RLS occasionally at night for many years. When it became every night and her arms occasionally, she became very depressed. Her Dr. prescribed Sifrol 0.125mg which is magic for her. She is concerned about the long term use and also the lessened effect that maybe occurring.She was also diagnosed with asthma, COPD and SCLC in 2017.

Long term, daily use of Sifrol (pramipexole) can lead to augmentation (worsening of our RLS caused by a dopamine agonist), but you are on a low dose so it could take some time before you augment. When that happens, Sifrol stops being like good magic and starts being a horrible beast. But enjoy the time that it helps. If you have any RLS questions, feel free to post a note and we will do what we can to answer them.

[Rustsmith]

Thursday, January 6

Welcome to

Catem, whose daughter has severe RLS and so Catem is trying to find answers for her.

We would love to answer any questions that you or your daughter have. Just post a note with your questions and we will do what we can.

[Rustsmith]

Thursday, January 6

Welcome to

Tam63, whose RLS has gotten to be almost nightly now. Tam is getting very little sleep. It is hard to want to work or exercise. Tam more irritable and less resilient under stress.

Those are all symptoms of RLS that we can all relate to. If you have any questions or would like some suggestions on how to improve your control of the symptoms, just post a note that tells us what you are looking for so that we can try to help you get a good night's sleep.

[Rustsmith]

Thursday, January 6

Welcome to

Rscreen3, who has had RLS for 20 years and does not have any relief other than night time ropineral.

If you would like some suggestions for alternative (or supplements to) your ropinerole, just post a note and let us know what you are looking for (other than a cure - LOL).

[Rustsmith]

Thursday, January 6

Welcome to

paulabuls, who is a longtime sufferer of RLS. For years it went untreated. She has been under a doctor’s care for it now for about 5 years and is trying to find better solutions.

We would love to offer our suggestions for better solutions. If you will post a note to tell us what you have tried, we can offer suggestions for alternatives.

[Rustsmith]

Tuesday, January 11

Welcome to

Jmiskell24, who cannot function without meds!

That is where most of us are, we cannot have a life without our meds. If you have any questions, just post a note and we will do what we can to answer them.

[Rustsmith]

Tuesday, January 11

Welcome to

Bay Flyer, who has a severe case of RLS. His mother was plagued by it for most of her adult life in an era when there were no meds. Both of his sisters have it, but to a lesser degree. He has been dependent on ropinirole for at least 20 years. He is currently well augmented taking 8-12 mg per day. His local doctor/Internist, although empathic, is at a loss when it comes to RLS. He needs a good RLS doc as close to Delaware as possible. Only option now is John Hopkins, but impossible to get an appointment.
Secondly just had complete iron panel blood test. All normal. Want to try IV iron. Looking for people who have had IV Iron treatments for risks/rewards feedback.

You said that your iron panel was "normal". Does not mean normal for everyone else or normal for RLS. The important thing is to know your ferritin number. Don't just accept "normal", ask for the results. They belong to you so the office must provide them.

If you have any questions, or would be willing to travel to Connecticut or Boston, just post a note and tell us what we can do to help.

[Rustsmith]

Tuesday, January 11

Welcome to

Captainblando, who has severe RLS and medication doesn't work anymore.

If medication used to work and doesn't anymore, there is a good chance that you are experiencing augmentation if you medication was a dopamine agonist (pramipexole, ropinerole or rotigatine). Take a look through our forum on Augmentation to get an idea of what you can do at this point or just post a note and ask any questions that you have so that we can try to help you regain control of your RLS.

[Rustsmith]

Tuesday, January 11

Welcome to

Bannia, whose RLS has taken over her life. She would love to have relief from this horrible disease.

We can probably offer you some suggestions to put you back in control of your RLS. Just post a note to tell us a bit about what you have been doing so that we will have an idea of where to start with our suggestions.

[Rustsmith]

Wednesday, January 12

Welcome to

Dick Jones, who has PLMD and, amidst the ignorance of general practice, he needs to continue to manage it effectively himself.

Although there is very little research that looks at PLMD, many of the treatments used for RLS also work for PLMD. So if you would like some suggestions for managing your PLMD, just post a note and we will try to answer it.

[Rustsmith]

Wednesday, January 12

Welcome to

Comeau01, who has been tired for many years because of poor sleep and having to walk most of the night. She is also having a hard time finding the right combination of meds. It seems to only work for a short time. She is having to retire early from her healthcare job because of decreased cognitive functioning.

We would be happy to provide you with some suggestions for meds that can help. All that you need to do is post a note that gives us an idea of what you have tried and then discuss these new options with your doctor.

[Rustsmith]

Thursday, January 13

Welcome to

Anney, who has been suffering from RLS for years and has tried several remedies. I'm seeking support from others with this condition.

We would be happy to provide whatever information you need and would be willing to suggest remedies that work. All that you need to do is post a not to let us know how we can help.