Wednesday, June 19, 2013

Guest Blogger: Leg Pain by Annmarie Lindon


My legs I just can’t bear it
The pain is much too strong
No matter what I do for it
Everything seems to be wrong

These pills, they don’t work for me
I lay banging my legs all night
The time I have relief if few
Tears flowing, my bodies at fight

No one knows the pain I feel
Come see me at any time
And some may wonder if it’s real
My body will promise the crime

RLS has stolen my piece of mind
My sleep is never too long
Then evil takes over my arms and legs
And the pain is much too strong

I dream of night with no RLS
To be a normal person again
If you don’t have it you can’t understand
The itchy, crawly, uncontrollable pain

Annmarie Lindon

About the blogger: I'm 46 and have been suffering with WED/RLS since I was 12 years old. Back then it was growing pains but I knew it was much more. It wasn't until I got married in 93 when a name was put to it for me. My world changed. I'm NOT CRAZY!!! Unfortunately it started with both legs and then moved to both arms. It is not just the "drive me crazy" feeling but the pain that goes along with it. I'm on numerous Rx for WED/RLS and insomnia. I pray one day soon there will be a cure or at least 1 pill that will work for me. Until then I stay up every night and write.

Tuesday, June 11, 2013

Webinar Summary: Advances in Iron Treatment

Thank you to everyone that joined the Advances in Iron Treatment Webinar on Monday, June 10, 2013. We would also like to thank Dr. Connor and Dr. Earley for their wonderful presentation and for answering questions at the end. 

The recording of the Webinar is no longer available. Please contact us at about viewing the webinar. The slides will not available, but you can view them during the Webinar.

Click the picture below to go to the recording. The file is large and may take some time to download (dependent on Internet speed/connection).

We also have a handout on Iron and WED/RLS.

What lab tests should your doctor request?
1) serum ferritin,
2 )iron
4) percent iron saturation

Note from Dr. Earley: For managing WED/RLS with iron we want to get the levels into the mid-upper normal range. At a minimum you want ferritin > 100, TIBC< 350, fasting serum iron > 70 and % iron saturation > 20%. If two or more of these values, do not meet these criteria then I treat with IV iron.

Help support future Webinars by making a donation or becoming a member.

Feedback on Webinar:
I appreciate your webinars and particularly found the one today (Advances in Iron Treatment), helpful. ~ John

Excellent information that will undoubtedly help me and others. Thank you for the presentation. ~ Sandra

Thanks so much! This has been one frustrating ride (RLS), so I'm very pleased to have this information. ~ Kim

Just wanted to thank you so much for putting on the webinar. Really learned a lot and am excited about the opportunity to see if upping iron helps my RLS. Glad that I contributed to the organization if you are putting forth such great information as last night's webinar. ~ Susan

Monday, June 10, 2013

Guest Blogger: Insomnia poem by Sandra Kanowitz


Restless and thrashing
All over our bed,
Compelled to move,
To turn, to rock,
To wiggle and jiggle
My arms and legs.
I stretch and flex,
Then roll and romp,
A horizontal fast dance,
Through half the night.

The other half sleeps.

I’m snoring and slurping,
Wheezing and waltzing,
Through dreams and spells
Of abated breathing, then
Gasping to regain air.

Then the pain starts,
The aching and burning,
Then  incessant fidgeting,
Legs creeping and crawling,
Sweating, then shivering,
Flinging off the hot cover,
Frantically pulling it back over.

Now hunger hits,
My thirst mounts,
In a swift escape,
I’m up and roaming,
Snarfing down snacks,
Quenching my thirst,
Popping more pills,
Massaging myself.
Rhythmically rocking.

Desperation deepens
To end the energy of
 Perpetual motion.

My best work I do
Between midnight and two,
Until the pills take hold
And I finally fold.

It’s a nightly ritual,
Sometimes even spiritual,
Once I clear my head
And go back to bed,
Like a quiet little mouse,
Not to bother my spouse
In his solitairy slumber.

Ah, I fondly remember
When we slept together
In peaceful surrender.

A note about our blogger: I am from Littleton (Denver area) Colorado, and have had WED for about 30 years, that I can recall, but remember having severe "growing pains" in my legs as a child. I take a "cocktail" of Sinemet (Rx), 400 mg Magnesium, 2000 iu Vit D, 600 mg Calcium at bedtime with Sleepytime Tea. Sometimes I take methocarbamol (a muscle relaxant) and Naproxen (anti-inflammatory), plus I am on Cymbalta and Wellbutrin (both dopamine enhancers) in AM, which I believe helps as well. In spite of all those remedies, I still suffer with it in varying degrees nightly. I can't seem to figure out whether exercise helps or worsens it. Alcohol definitely worsens it to the point I have become a tea totaler, decaffeinated only after dinner.

Thursday, June 6, 2013

Mark your calendars for September 23, 2013!

In 2012, the Wed Foundation joined with a group of WED/RLS community scientists and patient groups to create an international awareness coalition. September 23, Dr. Karl Axel Ekbom’s birthday, is marked as WED/RLS Awareness Day around the globe. Events related to Awareness Day will be posted in the upcoming weeks. We hope you can join our awareness efforts.

Wednesday, June 5, 2013

Youth Art Contest - deadline is July 1, 2013

Youth Initiative

Willis-Ekbom disease (WED), also known as restless legs syndrome or RLS, doesn't only affect adults. As this neurological condition has a genetic component, it can be hereditary. Some symptoms may arise early in life. It is on behalf of the youth living with WED/RLS we dedicate this this contest and the youth initiative web page.

We are having a 2013 Youth Art Contest! The WED Foundation is pleased to announce its second Youth Initiative Art Contest, open to children age 17 and under. Entries can be a drawing or a painting and must depict Willis-Ekbom disease (restless legs syndrome). See samples and winners from previous contest by clicking here. To read learn more about this contest, click here. Contest ends July 1, 2013. Please share this contest with your family, friends, schools, churches and community. Help spread awareness!


Winning entries will be awarded VISA gift card prizes in three age categories:
First place for ages 8–12 and ages 13–17: $50 VISA gift card
Second place for ages 8–12 and ages 13–17: $25 VISA gift card
First place for ages 4–7: $50 VISA gift card
Second place for ages 4–7: $25 VISA gift card

Sample entry from previous contest:

Sarah - 10
Description of drawing:
What I drew was saying that my top part of my body is relaxed and calm, but the bottom wants to run really bad.