Do WED/RLS symptoms ever subside?

Laurachrissy · Post by **Laurachrissy** » Mon Oct 17, 2011 1:10 pm

dogeyed wrote:.

Ohhhhh, the Penn State thing makes me SO mad. If I weren't so distracted in my thinking from everything, I'd write them a note, which wouldn't do any good nohow, I suppose.
GG

Maybe they'll see this.

Post by **badnights** » Mon Oct 17, 2011 7:09 pm

Connor does really good work. I'm very happy there's a research group there focussed on unravelling the pathophysiology of RLS. It's that kind of research that will eventually lead to effective treatment, and I wish those guys had oodles of money. The genetics research is interesting, but if I could choose where my money went, it would be to Connor's kind of research.

However, I also wish the busy doctors would find time to read over the stuff that other people write on their website, so as not to mislead readers. I get so irritated when I see things that imply relaxation helps RLS/WED, when it's the dead opposite of what helps. As if we simply are stressed out and don't know how to relax, when actually there's a neurological problem that causes pain and discomfort when the muscles relax. It's funny how you can tell that to people over and over and they just don't hear you. The concept is so foreign to someone who has never experienced the problem. argh.

Post by **ViewsAskew** » Mon Oct 17, 2011 10:52 pm

Laurachrissy wrote:
badnights wrote:This statement from the penn state site disturbed me
Treatment is aimed at reducing stress and helping the muscles relax.

I don't quite understand the statement about "muscles relax". If it were as simple as that wouldn't muscle relaxers be the cure? Idk, feels like my nerves are in overdrive; but why?

Did any of you read the other published reports from the links I posted concerning IV iron, lack of iron, etc. ? This gives me hope. This sounds like, yes!....it is something that could lead to a cure.

I really wish relaxing muscles would control RLS and PLM's. My symptoms are getting worse; less controlled, and I'm scared what is it gonna be like when I'm old and perhaps bed-ridden. It's a terrifying thought.

I've read some of the published research before. There is a lot to be hopeful about - 20 years ago very little was happening. They are learning more all the time.

It's in all of our best interest to support the Foundation and this research in any way we can.

The thought of this as we age is terrifying - I always remember a post from a woman who wrote about being restrained at the hospital. Her constant movements against the restraints caused damage to her legs, IIRC. I can't remember why they restrained her, but they clearly didn't know what they were doing.

Neco · Post by **Neco** » Tue Oct 18, 2011 1:19 am

I think I remember that post. They didn't know anything about RLS or what her problem was, and she was in a post-op or intensive care ward, I think, where she was sedated and she couldn't stop moving her legs or something like that.

veldon7 · Post by **veldon7** » Sun Oct 23, 2011 12:36 pm

I had my Ferritin checked and it is 45, so I started taking Iron, but just wondering, for those of you who's Ferritin is up to 100, are your legs better?

Laurachrissy · Post by **Laurachrissy** » Sun Oct 23, 2011 3:00 pm

[quote="ViewsAskew
It's in all of our best interest to support the Foundation and this research in any way we can.
[/quote]

I just posted this link in another forum but felt it would be appropriate here as well.

I would love the opportunity to go there for a thorough evaluation....looks like a lot of attention is focused towards the 'cause of' this nightmare.

http://www.youtube.com/watch?v=q_rdGX8mqGM

Post by **ViewsAskew** » Mon Oct 24, 2011 2:04 am

I appreciate them (Penn State Hershey Clinic) taking the time to create and post the video, but it is woefully light in information. The purpose may have been mostly to get patients into their study, but I do wish that anyone communicating about RLS/WED would make sure to cover it a bit more thoroughly so as not to create misconceptions.