New Members, January 2014 - Welcome!

[ViewsAskew]

It's a new year and we have new members. My dream is that in a few years, no moderator will have to welcome anyone new because there will be a solution to WED that works well. OK, so it's an unlikely dream....but that's what dreams are for.

In the meantime, this board is very important to the many people who have ongoing issues with treatment, symptoms, and medical care. We wish no one had to be here, but as long as we do, we're going to make sure this is a place you can get help, share your frustrations, and help each other.

Today, we welcome hula, who's having trouble with symptoms, despite medication. Hula, please start a new topic/thread and let us know what's going on. My guess is you're taking a dopamine agonist and that your symptoms have gotten worse over time....it's a relatively common occurrence and we can help you resolve it if this is the case. If not, we'll help you, as best we can, figure it out.

[Polar Bear]

3 January 2014

Welcome today to:
linda_goff- who has tried many doctors and wants to speak and learn from others.
town _ who wants to find out about how other sufferers deal with symptoms and hasn't slept properly for weeks.
richrea - who wants to learn more about how to manage this illness.

You are all very welcome onto the discussion board. There are many threads that will help. Also go to the stickies at the top of each Forum page. When you are ready just join a relevant thread or indeed start your own. We are all here because we need to be and want to pass on as much information as possible.

[badnights]

welcome on Sat Jan 4 to u32784, who needs information and support from fellow sufferers. So sorry you have to be here! But we're glad you found us, there are a lot of people here who are going through very similar things to what you're going through, and you're sure to get support and information. For starters, check the links in the signature lines of the moderators (me, polar bear, viewsaskew, and chipmunk) and some of the other members. (Signatures are the user-customized text that appears below every post. )

[ViewsAskew]

Sunday, Jan 5th, welcome to:

tscrutton - who has WED/RLS and is wondering if anything helps.

cpreisner - who has WED/RLS and is looking for more information about the disease, treatment options, drug side affects and to know if anyone experiences the same symptoms.

There is a lot of information here. Read posts, particularly sticky posts (at the top of the page) or the one that are linked to in the moderators' signatures. If you want, start a new topic and ask questions or tell us what's going on.

[Polar Bear]

Monday January 6th

Welcome to:

fairlesstj - who is suffering greatly from symptoms and has been buy pills 'on the street' to gain relief. Please Please be careful.
Read our information on treatment and medications. print out what is relevant and go discuss with your GP.
We have all been desperate at some stage.... Please post and let us help.

Wagnercat - whose increased symptoms have been helped by an increase in mirapex XL which is extremely expensive. Wagnercat would like to learn of other medications and treatment. You will find information in the Pharma Section. When you are ready please post with your history of treatmentand - ask questions and we will see what we can do. to help.

[Polar Bear]

Wednesday 8 January

Welcome today to:
ksgallatin - who after treatment for a medical condition is finding the symptoms are worse. Present WED/RLS treatment is with a new patch and it is going well. ksgallatin would like to talk with others.

We are here to try and answer questions and to be supportive to everyone who suffers WED/RLS symptoms. There is loads of information throughout the site,

[Polar Bear]

Today Thursday 9 January we welcome:

Sue Sue who suffers from symptoms and wants to share with us what has helped her.

We are always eager to know what has helped someone cope with their symptoms and look forward Sue Sue's postings.

MissPiggy who is looking for help and info about WED/RLS. Welcome MissPiggy!

plsexton who has suffered for 15 years and feels it is worsening, and is also wondering about alternatives to Mirapex. Browse our forums and you will find many experiences about Mirapex (pramiprexole). Some people have issues with augmentation while on Mirapex, while others battle addictive behaviors. Start a post in the "Just Joined" forum and tell us about your experience and we'll try to help.

makary - who has WED/RLS and would like to hear what others think. You will find lots of experiences in the posts and please ask any questions.

kaz - who has severe symptoms and needs help and support and to ask questions. We are here for everyone who suffers and to try to help with information.

We try to help and support with knowledge gained from our own experiences in dealing with WED/RLS. We are not doctors or medically trained - but we all have experience of what suffering means.

[Polar Bear]

Friday 10 January

Welcome to Bsawyer - who has tried various medications, is up most of the night and would like to learn about how others are coping. And indeed, that is why we are all here, we are all sufferers and try to help each other.

[ViewsAskew]

Also on January 10, welcome to Maggie1 who is looking for advice on medication.

There are many posts about medications and other things to try. If you have a specific question, create a new topic/thread in the Pharma section and let us know the specifics. Welcome.

[ViewsAskew]

Saturday, we welcome:
nklkm5 - who is taking pramipexole (Mirapex in the US) and is wondering if others have the same symptoms.

star444 - who has WED, PLMS, and sleep apnea. Since using CPAP, the PLMs have intensified.

Look around, read, ask questions - whatever is most helpful. We're here to help.

[ViewsAskew]

Sunday we welcome

goyankees, who has WED and whose mother had it, too. Gabapentin helps, but not quite enough, and goyankees hopes to connect with others who are going through this.

You're in the right place. Some of us have complete control, others of us no control, and most of us are somewhere in the middle, whether we use medication, unregulated medication, or anything else available to us. We can hopefully help you determine if it's worth trying for more coverage and no matter what, we're here for support.

[badnights]

welcome to laeske, who is studying to become a holistic health practitioner and is "assessing [Willis-Ekbom disease] for treatment". Please start a topic to tell us about your studies and let us know how we can help you.

[ViewsAskew]

Tonight, we welcome daneesd, whose boyfriend has WED and they are looking for non-pharmaceutical alternatives.

There is a lot of info here. Unfortunately, non-pharma options aren't tested much, so we don't have much science behind them. Many people, however, have posted what has worked for them - you can read years of posts. There are not many that a majority find work, however. Here are a few.

One: if there is a deficiency in vitamins/minerals, fixing that often has a positive impact. Hemoglobin and serum ferritin are in this category; many of us with WED have low serum ferritin and increasing it often helps (though doesn't often remove all symptoms). Two: a majority of people who try it have great results compression - surgical socks, support hose, and the like. That said, some of us HATE it. But, worth a try. There are also some non-pharma alternatives that work like pharma ones - such as kratom or poppy seeds. These contain the same chemicals as the pharma options - using them has a different set of benefits and drawbacks. Massage is another things that seems to work for the majority. It's just not always easy to find someone to do it every time it's needed.

Read, ask questions, tell us what's going on - whatever works for you.

Also, we welcome charliechaplin - who is seeking information regarding medical options.
Many of us have tried the non pharma route including distraction techniques, hot/cold treatment etc. but eventually most folks who suffer enough to have found their way here are in need of medical help. Please read lots, look in the Pharma forum including the stickies at the top, and ask lots of questions. Tell us about your WED history so far and what you have already tried.

[Polar Bear]

Wednesday 15 January

Today we welcome

NinjaDreams - who has recently been diagnosed although has had the condition since childhood. It has had a negative impact on all activities, especially no sleep. NinjaDreams would like to learn how others cope and what they have found to work for them.

graham3196 -who has had symptoms for many years, since teens. The disease is now getting worse, there are more difficulties including the awful lack of sleep. graham3196 also has tinnitus and wonders if this is related, and has tried cutting out many things including caffeine, gluton and sugar.

Please tell us a little about yourselves, are you taking any medication or are you coping by using distraction methods. You will find lots of information, perhaps starting in the Just Joined forum and the Stickies at the top of the contents page. When you feel like it you can start a thread yourself or join a thread and feel free to ask anything you want.

[badnights]

welcome on Jan 15 to Doris Renea, who has been diagnosed for 5 years, and has joined us for support and information.