June 2016 - New Members

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
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Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

June 2016 - New Members

Post by Rustsmith »

Wednesday, June 1

Welcome to

Kelcon1129, whose recent knee replacement surgery caused RLS to escalate from mild to SEVERE, making sleep a happy memory from the past.

We have had a number of knee surgery issues of late, so you are not along in this matter. Take a look through our files, especially those on Prescription Meds to get an idea of your options. Regardless of what you have been doing to treat your RLS, there is always something else to try so hang in there and keep working with your doctor. And please feel free to post a note with any questions that you have.

and to

inmotion, whose RLS has augmented and affects every part of life. Currently working with a doctor at Mayo Clinic who is having a difficult time finding a medication that works.

Please post a note telling us a bit about what you have tried and why they failed. The experience of many here is that there is always something else to try, even when the experts start grasping at straws.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: June 2016 - New Members

Post by ViewsAskew »

Also on June 1, welcome to

tinagirl59 who has had RLS/WED for a long time; it's now chronic and the usual treatments have not worked.

Please let us know what you've tried and we can try to help.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Friday, June 3

Welcome to

ACMcEwan, who has RLS and OSA that was diagnosed in 2006 and the RLS is getting progressively worse.

A slow worsening with time is not unusual with RLS. See what you can find that might be helpful and feel free to post a note asking any questions that you have.

and

angiemarie1, who has severe rls and is taking a high dosage of ropinorole which has some nasty side effects. Her sleep pattern is greatly affected.

How much ropinorole are you taking? Take a look through our files, especially those dealing with augmentation. Then please post a note telling us about yourself and asking any questions that you might have.

and

JumpingJackFlash, who has had RLS for 20 years and wouldn't wish it on Jack's worst enemy.

We all understand that sentiment. Post a note to let us know if there is anything that we can do to help.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Saturday, June 4

Busy day today. Please welcome

AnnieBelle, whose RLS is steadily creeping into her nights' sleep and is beginning to effect her daytime energy. The pharmaceutical solutions sound quite scary and she wants to try some everyday solutions before resorting to medication.

Take a look at the Physical Treatments and Non-prescription Medicine forums to get some ideas. If you don't find what you need, feel free to post a note asking your questions.

Barbhawken, whose RLS has completely changed her life and her personality . She says she has changed from a fun loving extroverted person to an irritable, verbally aggressive horror at times who feels particularly low, lacking self esteem. It is affecting her relationship with her entire family, grandchildren included, and she wants to get back to the person I used to be.

Please post a note telling us about any treatments that you have used or are using and what sort of help that we can provide. One thing about RLS is that there are always alternative approaches.

3540gon, whose moved from a long-term acceptable management, with a mix of physician-directed medication, to desperation, now that treatment is being denied as a result of the the CDC's clear need to eradicate abuse.

Your concerns are shared by many of us. Please let us know where you live as that can impact available treatment options. Also, take a look at the list of the Foundation's Quality Care Centers. These centers do not appear to have been affected yet.

brevik, whose husband of 48 years has severe RLS and regularly sees a neurologist. They want to hear what other people have done to decrease the negative effects of RLS.

Take a look through some of our discussions to get ideas of what others are doing. And please feel free to post a note asking any questions that you have.

and to

achealy, who cannot attend any evening functions that require sitting for long periods of time.

This is something that all of us experience. See if you can find any info that helps and feel free to post a note with any questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Sunday, June 5

Welcome to

Moyie, who has had RLS since childhood and it is progressively worsening. She has been on pramipexole and Vicodin for many years and even those don't help as they used to. She hopes to learn from others what helps them but feels there is no relief to be had.

Moyie, there is always something else that can be done. You may be experiencing augmentation, so take a look through our information on that topic, including the information in both badnight's and my signatures. And please feel free to post a note telling us about yourself, your treatment history and asking any questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: June 2016 - New Members

Post by ViewsAskew »

Monday the 6th, Welcome to:

Moonstars, whose familial family members all have RLS/WED. Now medication is needed and Moonstars wants to learn more and become more involved.

Moonstars, thank you for your support of the Foundation. We appreciate it! Poke around, try the link in my signature if you like. Or start a new post and tell us about yourself. We like meeting new members.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Monday, June 6

We also welcome

shri84, who is interested in understanding the RLS disease state and patient problems better so he can work on creating novel therapeutic interventions

Take a look around, but you will probably be especially be interested in the forum on Physical Treatments.

and

gurumayi, who has been on Abilify for years, which stops?? the RLS, but when she tries to get off the Abilify she gets RLS. She has tried Mirapex and have too much dry mouth from it.

Take a look through our files to see what has worked for others and feel free to post a note introducing yourself and asking any questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: June 2016 - New Members

Post by badnights »

We have two more new members, welcome to both of you!

chickarosa has WED/RLS and needs all the help possible
and
RicochetLegs has had RLS/WED since childhood, and also suffers from a number of other disorders. A friend suggested the RLS Foundation site, which led you here - -

The Topic in this Forum called A Good Place to Start is - well, a good place to start reading. After you browse around a bit, open a new topic and tell the other members a bit about yourselves, and the questions that are uppermost in your minds right now. There are a lot of people on this board who have a wide range of experiences with this disease and various treatments for it. You'll get answers, from people who understand what you're going through.

RicochetLegs, you mentioned that you're taking sleeping medication. If the legs aren't controlled, that can have the effect of just making us more miserable. Anything that relaxes the mind or body during the evening or night can activate the RLS sensations and urge to move.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Tuesday, June 7

Welcome to

jumpy leg, whose leg is jumping most of the night every night for the past year & a half. Jumpy doesn't want to take prescription drugs, so has been trying alternatives so far.

Take a look at the Physical Treatments and Non-prescription forums to get ideas of what has (and has not) worked for our members. And feel free to post a note introducing yourself, telling us what you have tried and asking any questions that you have.

and

ablejoe44, who has been living with RLS for most of my life. He is 71 and started having symptoms starting about age 30. He has gone thru most of the regular meds and augmentation and is now on Oxycodone (5mg , up to 5 times a day) for the last 2 years. Dr. Earley 1st prescribed it an now he gets my RX from his doctor in Fl. He is most concerned now about all the talk and actions of the government and medical community because of all the overdoses.

Your concerns are shared by many of us who have severe cases of RLS. Steps are being taken behind the scenes, so we need to be patient and prepared to act when the time comes. Please keep an eye on the discussions here for more info and feel free to jump into any of our discussions.

and to

robertpc, who has had RLS for as long as he can remember. He is now taking pramipexole, but RLS seems to be getting worse. Looking for support and education.

You sound like you may be experiencing augmentation. Take a look through the info in that forum and feel free to post a note with any questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Wednesday, June 8

Welcome today to

dancingmom, who was diagnosed with RLS about a year ago and can no longer sleep in the same bed with her partner. Her lack of quality sleep makes daily life almost impossible.

All of these are common issues that you will see described here. Please post a note telling us about whatever treatment(s) have are using and asking whatever questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: June 2016 - New Members

Post by badnights »

welcome to Linyfranky, a 73 yr old who has had this disorder for a long time, but lately it has been getting worse.

Linyfranky, you say you're using gabapentin and Mirapex. The biggest problem with Mirapex is that it eventually causes the RLS/WED symptoms to worsen in almost everyone who takes it. This phenomenon is called augmentation and most doctors, believe it or not, are unaware of it, because it doesn't happen with other diseases. It is pretty much unique to WED/RLS and the dopamine medications, including Mirapex.

To learn more about augmentation, first go to the RLS Foundation website, click Patient at the top, click Publications at the left, and download "What is Augmentation?"
Become a member, log in, go to Members Only, click Member Publications at the left, and download "Augmentation: A quick Guide" and "Augmentation FAQ"
All three of these brochures have valuable information that will help you to decide whether you're augmenting. Also, I hope you feel comfortable enough to start a new Topic, tell us a bit about yourself, and ask questions. There are lots of people here who can help out and share experiences.

Another good thing to do is browse the Topic called A Good Place to Start, in the Just Joined forum. You can also type augmentation in the search box on this page and you;ll get lots of results - browse through some of them.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Friday, June 10

Welcome to

RLS Hope, whose RLS has progressed over the years from being somewhat bothersome to a full time challenge. RLS Hope has tried several different medications and health style issues to deal and does not know of anyone else with and therefore would like to learn what others are doing to cope

You have come to the right place to find out what others are doing. Please feel free to post a note telling us about yourself, what you have tried and what questions that you have.

and

RobynR, who has severe RLS and is interested in what other people with it, do or take to survive

Take a look around starting with A Good Place to Start at the top of this forum. If you have any questions, please feel free to submit a post with them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Saturday, June 11

Welcome to

Kat7000, whose dad has severe RLS. He has struggled for 20+ years and is hopeless and depressed (age 68). Kat has mild RLS which seems to be worsening (age 41). Kat fears she will end up like her dad and wants to connect with others who are also struggling.

We all are familiar with your dad's issues and the struggles that you face. Please post a note telling us about the treatments that the two of you are receiving so that we can offer some suggestions. You should also feel free to ask any questions that you have.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Sunday, June 12

Welcome to

lwelton, who cannot lie flat on her back without creepy, crawly stinging in her left leg. Recently symptoms worse with a bad episode of flailing her legs continuously, which freaked her husband out. She was actually asleep as he was holding her legs and massaging them. She remembers very little and it lasted about 15 minutes.

Take a look around to get an idea of possible treatments to discuss with your doctor. If you have any questions, please feel free to post them.

and

jancmrn, who has had RLS since age 4 or 5, is now 60 and it is very severe and probably secondary to another disorder. It now has caused significant sleep deprivation and inability to sit for more than a few minutes.

Please take a look around and feel free to post any questions that you have on how we might be able to help.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: June 2016 - New Members

Post by Rustsmith »

Monday, June 13

Welcome today to

mikecros, who says RLS is controlling his life and he is not even sure if the tablets are working. His doctor has said she does not know what to do.

Please post a note telling us what meds (and doses) that you have your doctor have tried. There is always something else that can be tried, assuming that she is willing to work with you.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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