MAY 2022 - New Members

[Rustsmith]

Sunday, May 15

Welcome to

Pranjal3107, whose mother suffers from RLS. They live in India where there are no RLS Specialists and the doctors who do know about RLS know nothing about augmentation and refuse to listen when Pranjal tries to share research papers with them.

Physicians with ego problems are not limited to India. I would guess that most RLS patients have had to try numerous doctors before finding someone that they can work with. My suggestion to try finding a general practice physician who is willing to learn about the proper way to treat RLS rather than to fight to find a neurologist or RLS specialist who isn't interested in learning or their patient's welfare. If you have any questions, feel free to post a note and we will do our best to help you out.

[Rustsmith]

Wednesday, May 18

Welcome to

McIntyrrelin123, who can't sleep at night when RLS is causing leg are pain.

Insomnia that is caused by RLS, either with or without leg discomfort, can be a major problem. This is especially true when prescription sleep aids done work. But there are meds that can help. If you would like to hear some suggestions that you can pass along to your doctor, feel free to post a note and let us know what you have tried, so that we know what meds to skip.

[Rustsmith]

Wednesday, May 18

Welcome to

theunnamed, who is looking for RLS-literate health care providers in his area and any advice available for the management of augmentation symptoms.

Finding a physician who understands how to treat RLS can be a major challenge, especially when augmentation is an issue. The Foundation has a list of doctors who claim to the RLS literate that is in addition to the list of Quality Care Clinics (which usually provide wonderful care). There are also steps that you can take to find a doctor in your area, but these will require some work on your part.

If the Foundation's list of providers doesn't help, we can provide some specific steps that you can take. All that you need to do is to post a note telling us about where you life so that we can provide some guidance for you.

[Polar Bear]

Thursday 19th May 2022

Welcome to:

PowerDown who suffers from RLS and has had to move out of his bedroom because he kicks so much that his wife cannot sleep. His life is terribly disrupted by his affliction and it's all a form of genetic torture!

We understand how your feel and many sufferers find themselves having to change their sleeping arrangements. Please post and tell us how you have been trying to control your symptoms. This will guide us in how we may try to help you.

[Rustsmith]

Friday, May 20

Welcome to

RobynR718, who was diagnosed in 1995, and says RLS a horrible disease as it basically robs you of your life...She is on on medication, but now it effects her upper arms...

If the medication that you have been taking is a dopamine agonist (pramipexole, rotigatine or ropinerole) and it is occurring earlier in the day, then there is a very good chance that you are experiencing augmentation. If so, there is also a good chance that your doctor isn't familiar with treating augmentation and will need guidance (if (s)he is willing to accept help). Take a look through our forum on augmentation and feel free to post a note with any questions that you have. We are here to help you out and to help you regain a portion of your life.

[Rustsmith]

Monday, May 23

Welcome to

KellyNWH, who started a dopamine agonist in March and it was life changing. However when Kelly slacked off on iron, the symptoms came back during the day. Kelly is terrified of this condition because she has a severe case with core and arm issues, so she is looking for any help she can get.

Your RLS sounds very similar to mine. Eventually you are going to augment on the dopamine agonist and will have to switch to a different class of med. Hopefully this will be a long time from now, but there are alternatives. Many of us who have been through augmentation have successfully controlled our RLS using opioids and have maintained our control for many years. So, there is no reason to be concerned about having to go back to life before treatment. If you have any questions or would life some specific advice, just post a note and ask away.

[Rustsmith]

Tuesday, May 24

Welcome to

SethTampa, who has been on meds for RLS for years, but it's getting worse and it's ruining his life. He can't sleep, and now it's affecting him during the day too.

If you have been on a dopamine agonist med (pramipexole or ropinerole) for years, then there is a good chance that you are augmenting and need to switch to a non-dopamine med. This means either gabapentin/Lyrica or a low dose opioid. The problem that you may face is that many (most?) doctors do not know about augmentation. If your doctor is the type that is willing to learn, you will find lots of helpful documents in our Augmentation forum and on the Foundation's website. If your doctor isn't willing to accept new information from a patient, then you will need to find a doctor who understands augmentation and how to treat it. And, if you have any questions, feel free to post a message and we will do our best to help you out.

[Rustsmith]

Saturday, May 28

Welcome to

tsass4157, whose Rls makes it difficult to obtain a restful sleep and sit down in the evening.

Are you using any sort of medications to manage your symptoms, or do you have any questions. We would love to help you enjoy your evenings and sleep at night.

[Rustsmith]

Sunday, May 29

Welcome to

hdhobart, whose sleep is diminished and legs ache. Over the past 10 years, hdhobart has been finding it more difficult to attend evening gatherings of all kinds, since it is so hard to sit still.

Are you currently using any sort of treatment for your RLS? If you are not or if you have any questions, please feel free to post a note so that we can try to help you improve your sleep and your chances to stay at evening gatherings.

[Polar Bear]

Tuesday 31 May 2022

Welcome to

LaurieG who has had restless legs for well over 30 years. She is trying to wean off of Clonazapam and could use some advice from fellow docs and sufferers

We are glad you have found us. We would need a little more information to be able to help you. Please make a post in the Just Joined Forum telling us how you have been controlling your symptoms over the years, what other medications you may already have tried and what did or did not help you. Are you taking any other meds along with the clonazepam. We would like to try to help.

[Polar Bear]

31 May 2022

Welcome to

sarahpatto who has bouts of tortured sleeplessness, concern over increase in symptoms since starting Ropinerole and need to take higher dosage

If you are using Ropinerole and feel the need to increase the dosage it is likely that you are suffering from Augmentation and will need to come off the Ropinerole. Please do make a post and give us details of your medication history. We want to help and you will need advice regarding the reduction of your Ropinerole. You will find lots of information in the Augmentation Forum but please do post and feel free to ask questions. We are all sufferers of RLS and want to help other sufferers.

[Polar Bear]

Friday 3rd June 2022

Welcome today to

Rayzor who would like to share his/her experiences of RLS to help others plus gain advice and useful information from other sufferers.

Please do post on our Just Joined Forum. If you start a thread we would be delighted to read of your RLS experience. All information and experiences are useful, we learn all the time. And we are always keen to help other sufferers. Please ask any questions and we will do our best to advise and help.