JULY 2023 - New Members

[Rustsmith]

Saturday, July 22

Welcome to

BostJodyB, who is desperate. She is having augmentation and could not tolerate methadone or buprenorphine. She is now trying OxyContin but it’s making her a walk zombie. She is still taking Requip - but only 2mg a day. She cannot keep taking OxyContin. She wants to speak to someone? Can someone help me or offer me some advice. Please?

There are several ways that you can proceed, but your best bet at this point would be to call the Foundation office and ask to speak with Karla. She can point you towards one of the experts.

[Rustsmith]

Monday, July 24

Welcome to

joedead, who has had RLS for twenty years, the main impact is difficulty in getting a good night sleep. He is also unable at times to sit comfortably in a chair which impacts his ability to work, drive, travel and attend performances. He takes pramipexole which helps however is not entirely effective. He is looking for other effective ways to treat RLS.

The use of pramipexole is now listed as the third tier treatment behind the use of iron therapy to raise ferritin levels and the use of one of the alpha-2-delta ligand meds (gabapentin, Horizant or Lyrica). Extended use of pramipexole can also lead to augmentation, which is where it stops helping and starts making your RLS worse. If you have any questions, feel free to post a message.

[Polar Bear]

Monday 24 July 2023

Welcome today to

PastMortgage who has suffered from rls for 20 years and has reach the point where current medication is no longer working. PM would like to find out what works for others.

Looking through the Just Joined Forum you will find lots of information. Please feel free to make a post and ask questions. If you tell us about your past and present medications this will give us a starting point to do our best to help you.

[Polar Bear]

Tuesday 25th July 2023

Welcome today to Patsy who finds symptoms increasing with age, affecting more than just the legs and now staying up later. Taking propranolol 30mg to help sleep. Patsy feels the future is unknown.

Propranolol is not a medication normally used to treat rls or sleep.
Please make a post and tell us your rls history, any other medications you have used which have or have not worked for your symptoms. Hopefully we can make some useful suggestions.

[Rustsmith]

Wednesday, July 26

Welcome to

johnotviii, whose RLS has affected the quality of his life to a large degree. At first he couldn't get sleep. Now on medication, he does get to sleep at night but is experiencing unpleasant side effects. Sometimes it feels like he am trapped in his body, a very unpleasant sensation. Enough of the doom and gloom of it. Life goes on.

There are a number of options when it comes to treating RLS and many doctors are not familiar with the latest guidelines. If you would like suggestions that you can discuss with your provider (including documentation), just post a message and let us know what you are currently taking so that we will know where to start with out suggestions.

[Polar Bear]

Friday 28th July 2023

Welcome to

Vglava who is dealing with advanced RLS. As a former member
who greatly benefited from rls.org Vglava feels it is time to reconnect and learn what is new.

We are happy to hear that you previously benefited, thank you. Please feel free to ask questions and we will do our best to help.

[Rustsmith]

Sunday, July 30

Welcome to

ron1, whose RLS has destroyed sleeping and relaxing patterns

Can you tell us a little bit about what you are doing to manage your RLS? We may be able to offer some suggestions that will let you improve your ability to sleep.

[Polar Bear]

Monday 31st July 2023

Welcome to trulyrich who has had RLS for 10 years and it is getting progressively worse. Has tried 3 medications without relief and all that is wanted is a good night's sleep.

We are glad you have found us. Please make a post providing details of what medications and dosages (if you can remember) you have tried. This will give us a starting point to do our best to help you.

[Polar Bear]

31st July 20023

Welcome to

Blondie58 who finds she is unable to sit still and can't even let grandkids or cat sit on her lap. She is kept awake at bedtime and is awakened too early. Car trips are difficult.

These are issues that affect most of us and we fully understand. If you will make and post telling us how you have been managing your symptoms, any medications that have or have not helped, we will do our best to try and help you.