LEG PAIN

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

4-12-01
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.

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

INSOMNIA

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.

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.

Youth Initiative

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.