JUNE 2024 NEW MEMBERS

[Polar Bear]

Welcome today to

cmichael who from 1986 until 2006 walked the floors at night from sunset to sunrise and went the 20 years not knowing what was wrong.
U.S. Air Force doctors didn't know what was wrong either. It caused cmichael to voluntarily get out of the Air Force at the end of term.

I am sorry that RLS has had such a negative impact on your U.S. Air Force career. Are you now being treated for your symptoms, successfully or otherwise.
Is your doctor supportive. You will find a lot of useful information throughout the site, including the document linked in my signature. Please feel free to make a post and to ask questions. We are here to try and help.

[Rustsmith]

Saturday, June 1

Welcome to

RestlessinTexas, who has had RLS as long as she can remember. It was “growing pains” as a kid, then nighttime leg cramps during pregnancy. Now it is full blown RLS in menopause. She has terrible difficulty sleeping, and has been on ropinirole for a year and a half. She is wanting to find another solution. She has had to increase the dose, and have started experiencing symptoms earlier in the day.

Increasing the dose and symptoms earlier in the day are often signs that you are augmenting on the ropinerole, which is a side effect of the drug that is specific to RLS. You can learn more about augmentation by reading through our Augmentation forum. As for finding another solution, the document that the link in my signature points to describes all of the treatments recommended by the leading RLS experts in the US.

You may also want to give the RLS Foundation office in Austin to get some guidance for finding a neurologist that can treat augmentation since many, if not most, neurologists are clueless when it comes to treating augmentation.

[Polar Bear]

Sunday 2 June 2024

Welcome today to

dmpalmer who has lived with RLS for the past 25 years. It affects waking and sleeping. dmpalmer has had to increase medication and is now on the maximum allowed.

Many of us have, like you, spent a lot (most) of our adult life suffering from RLS and understand the difficulties.
You are now on the maximum medication allowed. Are you on Ropinerole or Pramipexole? If so it is possible that you are augmenting and need to reduce/come off the Ropinerole/pramipexole.
Has your doctor checked your Ferritin Serum which, as an RLS sufferer, should be up around 100 and not just 'normal'. 'Normal' can be anything from 20+.

If you have any questions please make a post, preferably starting your own thread, and tell us about your RLS management. What medications have or have not worked for you. We will do our best to help you.

[Polar Bear]

Monday 3 June 2024

Welcome today to

Nathan T who is affected by moderate primary RLS and he finds it difficult to describe how RLS is affecting his life. The condition seems impossible to grasp. Nathan has problems sleeping because even when exhausted his body just can’t stay still. He also experiences it during the day although most of the time it is not strong enough to be a real issue.

Sleep is what drives most RLS sufferers to seek help. Everyone here can relate to the torture of RLS.
Is your doctor understanding and helpful. Have you been prescribed medication, have you had your Ferritin Serum level checked which for an RLS sufferer should be up around 100 and not just 'normal' which can be anything from 20+.
The link in my signature would be useful for discussion with your doctor.
If you will make a post and provide details of your treatment/medication, what has and has not worked, we will try to help you.

[Polar Bear]

6 June 2023

Welcome today to

lex121 who is a young person with Restless Legs Syndrome (RLS) who often struggles to concentrate in school because the constant urge to move legs is incredibly distracting and uncomfortable. This condition disrupts lex121's sleep almost every night, leading to being exhausted and unable to fully participate in enjoyable activities. Social situations can be awkward as well, since there is sometimes the need to walk around or stretch in settings where it's not appropriate,this makes lex121 feel self-conscious and anxious.

I am so sorry to hear you are suffering from this horrible condition. Especially while still so young. Have you been officially diagnosed by your doctor and have they offered any solution. Have you had your Ferritin Serum level checked and what is the level. I suggest you make a post, start your own thread and tell us if you have been prescribed any medication. what have you done to try to achieve some relief. As you say, it is not always convenient to get up and walk around. When not convenient I sometimes took myself to the back of a room and found some relief by standing.
At home, I found temporary relief by plunging my feet/lower legs into a bucket of icy cold water for about 20 minutes. Some folks find a hot shower helps more. This may give a window to get to sleep.
Please do post and ask questions.

[Polar Bear]

7 June 2024

Welcome today to

muvmarks who has had restless legs for many years and is now going thru Augmentation for ropinerole, and seeing a neurologist for first time re: RLS
Would like to be more informed of this issue and how to deal with it. Hopes to find the right medication or other measures to control this problem.

We are glad that you have found us. RLS is horrible and augmentation is worse. You will find information on the Augmentation Forum. If you will make a post, start your own thread, and tell us how you are presently treating your symptoms. Have you had your Ferritin Serum checked and what is the level, this is important and you will have to request this as it is not normally done as part of usual blood tests.
Tell us what medications/dosages you are taking, also what else has or has not worked for you. You will have to wean off your ropinerole and will need the support of your doctor to do this. Hopefully your doctor will provide medication to help you, ideally a low dose opioid.

[Rustsmith]

Sunday, June 9

Welcome to

csteffano, who feels that having RLS has really affected her quality of life and emotional health. The lack of sleep due to RLS has aged her. She finds it frustrating and even embarrassing to go to a movie or out to eat with friends because she usually has twitching legs and needs to get up and walk around.

Is your RLS being treated by a doctor? Do you know what your ferritin level is? Your complaints are ones that everyone with RLS shares. If you have any questions or would like guidance on finding ways to improve your quality of life, just post a message and let us know how we can help.

[Rustsmith]

Sunday, June 9

Welcome to

pupsruswalkers, whose husband is in his upper 70s with very severe RLS. It has debilitated his life.

We may be able to suggest ways to improve the control of his RLS and therefore his quality of life. I am also in my 70's and have very severe RLS but have been able to find ways to treat it so that my quality of life isn't too degraded. All that you need to do is post a message and tell us a bit more about how he is currently treating his RLS and how we can help.

[Polar Bear]

Monday 10 June 2024

Welcome to

partlycloudy who has had RLS since early childhood, possibly triggered by or worsened from a head injury at 5 years old. Symptoms progressed then plateaued in teens years. Chemo, lyme disease, then long covid has made it a nightmare.

We are glad you have found us. RLS is indeed a nightmare. Is your RLS being treated with medication by your doctor and have you had your Ferritin Serum level checked? Us sufferers do best if our Ferritin Serum is up near 100 and not at the accepted 'normal' of 20+. If you have any questions please do ask, preferably by starting your own thread and tell us how your symptoms are currently being managed. We are here to try and help.

[Rustsmith]

Monday, June 10

Welcome to

popjesse, who has had RLS for 30 years now and is having more trouble with it than ever before. It is causing many sleepless nights, and he would like to know how others are doing and what is helping them.

There are many different approaches for treating RLS that depend upon the individual. To learn more about the variety of treatments recommended by the RLS experts, take a look at the document that the link in my signature points to. You can also post a message with any questions that you wish to ask our members. We are all here to help share our experiences.

[Rustsmith]

Monday, June 10

Welcome to

marianbeems, whose exasperation of with RLS symptoms since coming off of Requip has turned her world upside down. She sees how sleep deprivation is a useful torture technique, and most recently has gone 3 days with no sleep. She is desperate for help. She does see a neurologist, but they are still trying to come up with the secret sauce of medications. The syndrome occupies her thoughts for much of the day and the symptoms occupy her thoughts for the entire night. She is anxious to learn more about the discussion board.

You can post any question that you want to ask on the board and our members will try to provide an answer or a discussion of their experience.

To learn more about treatment options, read through the document that the link in my signature points to. It was prepared by the leading RLS experts specifically to educate doctors on the best ways to treat RLS.

[Rustsmith]

Tuesday, June 11

Welcome to

Johanna, who has just been diagnosed with RLS and would like to know more about it.

We are sorry that you need us but happy that you found us. You can learn a great deal by reading "A Good Place to Start" at the top of the Just Joined forum. You can also learn about all the recommended treatment plans by reading the document that the link in my signature points to.

[Rustsmith]

Wednesday, June 12

Welcome to

Sharonartist, who says that RLS is a devastating condition that makes one miserable at night (and sometimes during the day) and leaves one sleep deprived all the time. No need to say more. She just wants to share her successful treatment regime with others.

All that you need to do to share your experience is to post a message. We look forward to hearing how you are treating your RLS.

[Polar Bear]

13 June 2024

Welcome today to

Luna Park who has sleepless nights; can't sit and just read a book; constantly needs to be active using the upper left shoulder. Luna's left upper quadrant is affected and when it is bad Luna wishes it could surgically be removed.

We are all sufferers here and we can relate to how your RLS affects you. Living with RLS is no picnic. If you take a loook at the Just Joined Forum - A Good Place to Start, you will find much useful information. Are you being treated by your GP, are you taking medication? The link in my signature has been written by the leading RLS Experts and is useful for both the RLS sufferer and their doctor with regard to treatment. Please do feel free to make a post and ask any questions that come to mine. Our reason for being here is to try and help.

[Polar Bear]

Saturday 15 June 2024

Welcome today to

beckycolorado who has been suffering from RLS for at least 20 years. Started on psychiatric drugs mostly to manage sleep - currently on benzos. Went to neurologist in 2022 and started on gabapentin and now on sinemet. Currently experiencing augmentation. Looking for help from this site.

Sinemet is not a drug you should be taking regularly. It is only for occasional use as it is pretty much guaranteed to cause augmentation if you take it too often. Please take a look at the Augmentation Forum and see if you can relate to it. Have you had your Ferritin Serum checked, this is important. Normal may be considered at 20+ but as RLS sufferers we would be trying to reach around 100. It is not checked as part of a normal blood panel and needs to be specifically requested. If you have any questions please do post and ask. We are here hoping to be able to help you.