New Members, February 2014 - Welcome!

[ViewsAskew]

Aldo on the 20th, Welcome to

cterry47 - who has severe WED and is looking to connect with others regarding treatments that work.

Look around, ask questions, read posts. We're here to help.

[badnights]

Welcome on Friday Feb 21 to johnc1oo8, who wonders if there is a connection between WED and Agent Orange. Interesting! You can start a post and ask questions or tell us your thoughts more.

Welcome to jiminylegs, who is on Mirapex and would love to get med-free, and would like to hear how others cope. A good place to start might be to check out the "A good place to start: Managing WED/ RLS " sticky topic in the Just Joined forum (sticky topics are found at the top of each forum), and to check the links in my signature below my name; a LOT of people on Mirapex are augmenting, which is when the med causes a worsening of the symptoms (they start earlier in the day, sooner after you sit or lie down, move to other body parts, increase in intensity; the medication works for a few hours after you take it, so the doctor keeps increasing your dose and adding earlier doses to deal with the augmentation, because most doctors don't know what augmentation is )

Welcome to gracie, who was recently diagnosed and wants more information. Have you had your serum ferritin tested? (blood level of ferritin, which is a protein that transports iron). If your doctor wants you to take a DA (pramipexole/Mirapex, ropinirole/Requip, rotigotine/Neupro) you should not do so unless you have a ferritin level of over 100. Labs call 20 normal, which it is for non-WED patients. but not for us. More information is in the links below my name (bottom of post).

[ViewsAskew]

On the weekend, we welcome,

Revelle - who's had WED for 25 years and is happy to find a place to discuss it.

linda8935 - who has PLMD - not sure if she has WED, too.

rlm - who wants to keep abreast of research and get advice regarding treatment protocols.

Hang out, read, share your story, ask questions - whatever works. There are sticky posts at the top of many sections that can be very helpful. There is a research thread where we've linked to hundreds of research articles over the last ten years. We are not doctors, but many of us are more knowledgeable than many healthcare providers, so we often can help provide accurate information. We always provide excellent support - we know exactly what you're going through.

[badnights]

Welcome to mbergeron, who has had WED/RLS for a long time and really needs solutions. Please make yourself at home here, and post about yourself. You will find lots of information and caring people who are going through the same things.

[badnights]

Welcome to irishg0811, who has been suffering and trying solutions, including medications, for 3 years without relief. So sorry you have need of a place like this! But it is certainly the right place for knowledge and ideas. Browse around a bit first if you like, and start a new topic to tell us a bit about yourself, and what medications and methods of relief you've tried.

[Polar Bear]

26 February 2014

Welcome today to:
the-artist - who wants to be connected to a group of people who will understand because of their own experiences. We certainly have lots of experience and are more than happy to try and support and encourage other sufferers. Please read all you can, knowledge is everything - in the meantime when you are ready, please tell us a little about your own experiences with WED/RLS, we are all keen to learn and to share.

[ViewsAskew]

Welcome to:

Coppercarie - Coppercarie and mom both have WED and have suffered for years with it. Coppercarie also has a chronic pain condition and finds the WED is worse when the pain is worse.

dunelander - who's been a member of the Foundation for many years and is now joining the board.

dazy12 - who wants to learn more about WED.

[badnights]

Welcome to Greg Quinn, who has suffered badly for many years and is at the point of desperation with only 1-2 hr sleep per night. Please post and tell everyone what meds you're on and how you're managing. There is lots of advice here, and information is the first step in taking control of this horrible disease.

A good place to start is the Topic in this Forum called A Good Place to Start. Also, look for any post by polar bear, and check out the link below her name, that's the WED Foundation's bulletin for healthcare providers, and a good summary of WED/RLS diagnosis & treatment.

Because you are taking Stalevo, it is probably also important for you to read the links under my name below. The first link takes you to a pamphlet that describes augmentation, which is a worsening of WED/RLS from taking dopaminergic medications (like Stalevo).

[badnights]

Welcome to Blacky, whose doctor thinks RLS/WED can be overcome by stretching. Yes, stretching can help, but in many cases it is nowhere near enough. At some point, you will probably have to educate your doctor, informing him that this is a neurological disorder called Willis-Ekbom disease (formerly RLS), that it seriously impacts your sleep and is affecting your daytime functioning.

But first things first: we're sorry you've have to find us, but the good news is, you are likely to find all the information you need here. Please browse around - check out the Topic called "A Good place to start", and look for posts by polar bear, she has a link below her name on every post, which links to the bulletin published by the Willis-Ekbom Disease Foundation for healthcare providers. It's a good summary of the disease, including treatment options.

[ViewsAskew]

On Friday we also welcome rossmom who wants to learn how others are coping with this dreadful problem and to share how he or she copes. Ask us any questions, share you experiences, or read a bit and see if you find info that helps you.

[ViewsAskew]

Welcome to shuteye59, who has suffered with RLS/WED since he/she was 15 and has now had it for 40 years. shuteye 59 wants to chat with others who also suffer from this disease.

We do a lot of chatting, shuteye59. Jump right on in. From sharing tips and research to offering support to asking for support, the board is a place for all of us to get what we need.

Also, welcome to RestlessRichard, who's had Willis-Ekbom (RLS) for over 10 years. RestlessRichard has tried many prescription treatments; a number caused severe adverse side effects and he felt none were totally satisfactory. RestlessRichard would like to find a better, low-risk treatment.

That's a tough order, RR. Many of us have struggled with it; some of us have has success, some not. A lot is very individual, but some is how adventurous your doc will be and whether you want to stay with FDA approved medications or want to get away from them. Please start a new topic and tell us more.