WELCOME NEW MEMBERS - JUNE 2015

[Rustsmith]

Monday, June 1

Welcome today to

BEWilcox, years ago finally figured out that she had RLS and has since been through a long list of medicines and is now taking Methadone. It helps greatly, but has certain undesirable side effects.

Your experience is similar to many of us here. Take a look around to see if you see something interesting and please feel free to jump into any discussions or start a new one.

[Rustsmith]

Tuesday, June 2

Welcome today to

CarolH, whose father had RLS and she feels like she has the same thing, only in her lower back. She wants to know if that is possible.

CarolH, please post a note telling us a bit more about your condition as well as that of your father. RLS/WED does occur in areas of the body other than the legs, so it could be possible, but we need to know more to comment further.

[Rustsmith]

Wednesday, June 3

Welcome to

Wholloway, who has suffered with RLS for years and recently sleeping has become a problem.

You have come to the right place for resources for RLS/WED. Take a look around and see if you can find anything that would be helpful to you. And please feel free to post a note introducing yourself and describing your situation so that we can provide suggestions.

[Rustsmith]

Thursday, June 4

Welcome today to

atule1969, who has severe RLS and would like more information on how others cope.

You have come to the right place. If you look through the discussions, you will see what many of us do to cope (and sometimes not). If you have any questions or cannot find what you are looking for, please post a note and ask.

and to

Dick Woodward, who has had RLS for several years and it seems to have gotten worse. He takes Ropinirole 2mg once every evening which usually helps, but lately has more daytime RLS. He also has IBM (Inclusion Body Myositis) and is in a clinical trial for a drug BYM338 being tested by Novartis.

You found the discussion group that you were looking for to discuss RLS/WED. Feel free to take a look through past discussion threads and please ask any questions or offer up any comments that you wish.

[Rustsmith]

Friday, June 5

Welcome today to

mocountrygirl, who is a 63 year old female who has had RLS for over 40 years, increasing as she gets older. She has taken Mirapex for years but it started to stop working about 4 years ago. Would love to join to understand more and have a support.

Take a look around and please post a note telling us about yourself and ask whatever questions you find important.

and to

alexander, who has parkinson's disease and recently changed medication that was causing problems. However, now he experiencing quite severe RLS at bedtimes. Sleep is difficult and fitful. Quality of life is being severely compromised.

Those are all complaints that we are familiar with. I don't know how much advice we will be able to provide, but a number of the RLS/WED medications are used for Parkinson's, just at much higher doses. Please feel free to post a note if you don't find what you need.

[Rustsmith]

Saturday, June 6

Welcome today to

ln123, who was diagnosed with RLS a few years ago when ln123 was young. It has made life really miserable and now ln123 needs to talk to other people struggling with RLS.

This is the right place to talk with others with RLS/WED. Please post a note that tells us about yourself, feel free to ask any questions or simply post something to vent your frustrations with RLS/WED.

and to

mgm, who has an inability to sleep due to the burning sensation in her feet, so she feels very tired during the morning. So now she would like to hear from others.

mgm, please take a look at the "Good place to start" posting in this forum for information. And please post a note introducing yourself so that we can provide more specific suggestions.

and also to

chirosyd, who wants to share experiences with others.

Please share away by posting a new note or feel free to join in any of the existing active discussions.

[Rustsmith]

Monday, June 8

Welcome to

Figflower, who is always looking for new and innovative ways to treat this baffling condition.

Take a look around and see if you find anything interesting. You might want to concentrate on the physical treatments and non-prescription medicine forums since your interest is "innovative" treatments for RLS/WED.

[Rustsmith]

Tuesday, June 9

Welcome today to

fuzzy13, who has been living with severe RLS for over 25 years and sharing my story and finding remedies to possibly ease my RLS.

Please share your stories with us, especially any coping tricks that you have learned. And please explore the board to see if there is anything you can learn from past conversations. ga

and to

Bess, who has been getting RLS symptoms off and on for almost 8 years now, always in episodes that wax and wane seemingly for no reason. Her doctors are just about useless and she is hoping to get some feedback and some new coping ideas on what I can try.

Take a look at the thread titled "A good place to start" at the top of this forum to gauge how well your symptoms fit with the criteria for RLS/WED. You should also take a look at the Non-prescription meds forum and the Physical Treatments sections for ideas on how to cope with RLS/WED without the need for doctor prescribed medications. In the end, if you don't find what you are looking for, please feel free to post a note asking for help on whatever topic you need.

as well as

viccytory, for whom the condition began at 26 after a severe back injury. viccytory is now 62 and has seen many doctors and many medications. And now wants get educated, hear how others deal with RLS, and maybe help someone else through sharing.

Well that is exactly what we all try to do, educate each other, provide support during the down times and help via sharing. Take a look around for ideas and please feel free to post a new topic either describing your experiences, asking a question or simply venting.

[ViewsAskew]

Wednesday, we welcome guiminliu , who is in the US as a visiting scholar. His or her aunt has been seriously affected by RLS/WED, has seen several doctors in China, but has not had a positive outcome.

As we understand it, the rate of RLS/WED among people who are ethnic Chinese is very low - it's much higher among Europeans, particularly those from northern Europe. My guess is that there are very few doctors in China who know much about it. It must be very hard for your aunt. Please let us know how we can help.

[ViewsAskew]

Thursday. 11 of June, welcome to

lynnmartin, who has found RLS worse with age. On meds, but RLS appear earlier in the day.

So sorry you are suffering. Do read about something called augmentation. If you are taking a dopamine agonist, this could be causing the earlier symptoms.

cerachal who cannot sleep at night and the situation is miserable.

BabaBob. who has PD for about ten years and often had RLS/WED and wants to know how others deal with it.

Please read and poke around - also we'd love for you to introduce yourself so we can get to know you. We will try to help as much as we can.

[ViewsAskew]

Friday - 12, June - we welcome:

mammie, who is having a tough time, not sleeping well and dealing with side effects from meds and with depression.

Let us know how we can help. There are many solutions - even though some people are bothered by drugs for depression, the vast majority of us can take them. Hopefully one or more will work for you.

[Rustsmith]

Friday, June 12

Welcome to

Graybeard327, who was diagnosed with RLS/WED over 30 years ago and the past ten being the worst. Graybeard wants to learn about the side effects of long term usage of pramipexol and how the increasing dosage might affect him in the future. He also wants to find out if the extremely severe leg cramps that he has been experiencing over the past few years are tied either to the drugs or to RLS itself.

For information about the long term effects of pramipexole, check out the forum on augmentation as well as the links in my signature and that of badnights. As for the cramps, join in the current discussion on leg cramps at http://bb.rls.org/viewtopic.php?f=5&t=9306&p=80415&hilit=cramps#p80415

[Rustsmith]

Saturday, June 13

Please welcome

rara200284, who is always tired and no matter what lifestyle change are made. rara has also discovered she/he is moving a lot during sleep.

This may or may not be RLS/WED. Take a look at the information in the discussion thread titled "A great place to start". The second message has a link "Do you have RLS". A few lines down is information about a sleep disorder that is similar to RLS called PLMS (Periodic Leg Movements during Sleep). Many RLS patients also have PLMS, but most PLMS patients do not have RLS even though treatments are often similar.

[Rustsmith]

Wednesday, June 17

Welcome to

Kathy1956, who fractured an arm in February and it has triggered RLS.

Take a look around to see what information you might find helpful. If you have any questions, please feel free to post them and tell us a little more about yourself.

and to

Edwright12345, who is 50 years old and had a recent onset of RLS/WED after suffering from Norovirus; there still are sporadic instances of RLS that cause problems and sleeplessness for several days in a row.

[ViewsAskew]

Thursday, 18 of June, welcome to:

Halfpynt - both Halfpynt and dad have RLS/WED - it's just gotten worse over the years. Used to just have it before bed, but now sometimes wake up with it, too and it's also in the arms. I thought it must be all in my head but when I looked up restless arm syndrome, sure enough there it was. Gabapentin 300mg before bed worked for about 5 years, as did an increase to 600mg every other night for awhile, but even increasing it doesn't help now. I need to find some good advice as to what others are taking that helps.

You are in the right place! Many of us have or do use gabapentin, others use different pharma drugs, while others use non-pharma options. Do poke around and read what others do - or post immediately by starting a new topic.