AUGUST 2023 - New Members

[Rustsmith]

Tuesday, August 1

Welcome to

Nita, who has had RLS for the last eight to ten years. During this time, she started taking pramipexole, which has helped. She still struggles at times and would like to find out more about RLS. She also would like to be able to share information that has helped her.

Take a look around, especially the forum on augmentation because you have been on pramipexole for a while. And if you have any questions, just post a not and ask away.

[Polar Bear]

Tuesday 1st August 2023
Welcome to

theresaharris who has had RLS for 40 years and it is getting worse. Has used most medical options without success. Opioids are the last option not tried. Harris is tired of being tired, being unable to focus or think clearly.

Most of us with difficult to control RLS end up using an opioid. If you have tried most options you probably have tried ropinerole or pramipexole which can help at first but usually end up causing augmentation. Take a look at the Augmentation Forum and see if any of this feels familiar. Please do feel free to post and ask questions.

[Rustsmith]

Thursday, August 3

Welcome to

E-llis, who has Unknown symptoms affecting sleep.

You may not have RLS, which requires a need to move while awake. But there can be issues caused by Periodic Limb Movement Syndrome (PLMS) that is related to RLS and treated with the same medications. Have you tried discussing this with your doctor? Please post a message and let us know more.

[Rustsmith]

Monday, August 7

Welcome to

lilypondobecca, whose RLS has progressively become worse, making plane rides, sitting still in theatres, even just watching TV in the evening, very uncomfortable experiences. About 2-3 years ago, she was prescribed Ropinorole and was doing well until recently. Her arms have become involved now, too. Last night was the worst she has ever had, despite Ropinorole and Temazepam (a combo that always worked before). She couldn't get to sleep until she had taken more than prescribed of each drug; obviously that is something she can't keep doing.
She is familiar with the Mayo Clinic updated 2021 guidelines and is hoping she can convince her provider to order an iron infusion, but not feeling confident about that.

If you cannot get your provider to order an infusion (which is often an uphill battle), you might also ask about the use of a low dose opioid to help you get off of the ropinerole. The involvement of your arms is a good indication that you have augmented and need to get off of any kind of dopamine agonist. Quitting without the use of an opioid is a VERY difficult experience that providers would not force upon patients if they new what it involved. Please keep up updated and feel free to post a message with any questions that you have.

[Rustsmith]

Monday, August 7

Welcome to

Lorelle, who has had RLS for at least 5 years. She tried everything, but she now has it under control.

Happy to hear that you currently have your RLS under control. If you have any questions or need suggestions in the future (there are always other things to try), just post a message so that we can respond.

[Polar Bear]

7 August 2023

Welcome today to

CheriM whose RLS had plagued her for many years, keeping her awake many nights. Loss of sleep results in difficulty functioning the next day.

Loss of sleep is what usually drives us to seek help and everyone here understands how you feel. If you will make a post giving us details of how you have been managing you symptoms to date this will give us a starting point for discussion to try and help you.

[Rustsmith]

Tuesday, August 8

Welcome to

REM Sleep, whose 92 yr old dad barely sleeps because of RLS.

There are ways to manage RLS so that he can get some rest. If his doctor isn't familiar with treating RLS, take a copy of this document and ask that he gets the care that he needs. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Tuesday, August 8

Welcome to

anniecc832, who was managing her RLS well until her neurologist cut her medication in half. She doesn’t know what the future holds now.

You didn't say what medication you are taking that your doctor cut the dose in half. If it was a dopamine agonist, your doctor is probably worried about augmentation. If it is an opioid, the doctor is self-serving and looking out for him/herself. If there is anything we can do to help, just post a message and tell us a bit more.

[Rustsmith]

Thursday, August 10

Welcome to

Felice, who has what her doctor calls a "malignant" case of Willis-Ekbom Disease, aka RLS. It affects every part of her body except my left forearm and the left side of her face. It has destroyed her life. She can't work anymore. She can't think straight anymore because of the meds. She can't sleep normally anymore. She can't live her life anymore. It's been a 20 year nightmare that she is never going to wake up from.

Thank you for providing that information. It is necessary to prevent spammers from gaining access to the discussion board and to verify that the individual is actually an RLS patient or care giver and not a researcher or provider. If you have any questions that you would like to ask, just post a message so that we can try to help since many of us are in situations very similar to yours.

[Polar Bear]

11 August 2023

Welcome to

Sandy#sws who had lost us for some time and now has found us again. We are happy you are back with us. Please feel free to ask any questions, we are here to try and help.

[Rustsmith]

Friday, August 11

Welcome to

I'm tired!, whose elderly parents can’t sleep due to RLS

Are they receiving the latest treatment for their RLS? Many doctors are not up to date with the latest treatment protocols for RLS and adjusting their medications can help regain control of their symptoms. If you have questions, just post a message so that we can try to help them.

[Polar Bear]

Saturday 12th August 2023

Welcome today to

HwT who has had RLS since the 70s. HwT can't sit through a show or relax in the evenings. Tired of pills.

We understand exactly how you feel. Please post and tell us about your RLS treatment. We can take it from there and try to help you.

[Polar Bear]

Wednesday 16 August 2023

Welcome today to

kcutler who go was diagnosed 20 years ago and is now augmented with symptoms starting earlier and sleep affected. Has seen GP and Neurologist with no relief at present. Life has changed dramatically and help is needed.

Please do post giving information on your medications and what has and has not worked. This provides us with a starting point to try and help.

[Polar Bear]

Wednesday 16th August 2023

Welcome today to

austex66 who is a lifelong RLS sufferer. On various medications, some have worked, some did not. Currently austex66 is on mirapex 2mg and gabapentin 300mg and hopes to connect with fellow RLS sufferers.

The first thing I notice is your very high 2mg dose of mirapex. The daily max for RLS is considered to be .5mg. It is highly likely that you have augmented which is when the drug is actually making your symptoms worse. You will need to wean off the mirapex and consider an alternative drug regime.
Please post giving information about your RLS treatment and we will do our best to help you.

[Rustsmith]

Thursday, August 17

Welcome to

kmercer1975, who can't sleep very well. It has been affecting kmercer for a while. Is there a medication that helps with it?

There are four levels of treatment that generally do a good job of managing your RLS. You can real more about it at https://www.mayoclinicproceedings.org/a ... 0/fulltext, which you may want to share with your medical provider as well.