SEPTEMBER 2024 - New Members

[Rustsmith]

Wednesday, September 18

Welcome to

Needacure, who has had RLS since childhood and is looking for more support.

Please just post a message and let us know what type of support that we can provide or help you find.

[Polar Bear]

Monday 23 September 2024

Welcome today to

mujerita74 who since a child this illness has ruled her nights. She has hit a wall. She is tired of being in pain every night and is in tears just thinking of it, feeling there is no vacation from this. When mujerita74 takes her meds, mirapex, it makes her drowsy. and she has fallen asleep at friends, at the movie theater, and finds it embarrassing.She has had to eat dinner while pacing, because it was impossible to sit still. The doctor does not understand and keeps making suggestions that wlll never work. Very frustrating. She is falling asleep in her chair now, from lack of sleep last night. But if she tries to lay down, her legs will start hurting.

We do understand how you are feeling. Has your doctor checked your Ferritin Serum levels, you need to know this. A level of 20+ may be considered 'normal' but us rls sufferers need our level to be up around 100. Please have this test done, if you haven't already done so. It has to be specifically requested. You say you are taking mirapex. How long have you been on it, and what is your dosage. If you've been on it for some time, if your dosage is high, you could be augmenting. The link in my signature will take you to a document prepared by esteemed RLS experts and is an excellent guidance on the treatment of RLS. Would your doctor be amenable to discussing this with you.
If you will make a post, providing details of how you are managing your rls symptoms, we will do our best to help you.

[Rustsmith]

Friday, September 27

Welcome to

cdhepper, whose RLS has been disrupting sleep on a nightly basis. cdhepper has been on Gabapentin for several years and the RLS is worsening.

Unfortunately, RLS often gets more severe as we age. Since you are taking gabapentin, is your doctor regularly checking your ferritin level and do you know that it is over 100? Often in situations like yours, iron therapy (either oral supplements or IV iron) can bring your RLS back under control if you just get your iron levels up. If that is not your problem, feel free to post a message that gives us more information so that we can try to help you.

[Rustsmith]

Friday, September 27

Welcome to

susansong, who is relatively new to an RLS diagnosis however she has found it to be life altering. After less than two years on a fairly low dose of Ropinirole, she is experiencing augmentation. She is about to taper off. She has found the webinars and support groups very helpful and decided to check out the Discussion Board as well.

Take a look at our forum on Augmentation to see if they help answer any questions that you have that remain. If you don't find what you are looking for, just post your question so that we can try to help answer it/them.

[Rustsmith]

Monday, September 30

Welcome to

Karen05, whose quality of life and mental health and well being has deteriorated over the past few years and the future is looking bleak. She no longer sleeps at night, spends it mostly on her feet and two types of meds have resulted in augmentation. What happens next? She has nowhere else go with this horrible condition.

There are other treatments that do not result in augmentation but finding a doctor who understands how to properly treat RLS can be a challenge. To learn about all the types of treatment, read through the document that the link in my signature points to paying special attention to the section on opioids. As for finding a doctor who understands RLS, start with one of the RLS Foundation Quality Care Clinics. You may need to travel to reach one and will need to wait to get a new patient appointment (often months), but it is worth it if you get to one of them. If not, the Foundation has a list of RLS doctors that have been recommended by patients on their website. And if all else fails, you can follow the suggested steps that I described in an article in the Spring 2018 edition of Nightwalkers (page 12). You need to be a member of the Foundation to get access to Nighwalkers, but an annual membership is not expensive and they can provide a scholarship membership if the fee is a hardship to you.

And finally, feel free to post a message on the board with any questions that you have so that we can try to give you more specific advice.