Advice needed

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Chipmunk
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Location: Madison, WI

Re: Wow

Post by Chipmunk »

[quote=viewsaskew]
I'd say that the WED/RLS is 80-90% controlled. There are days where I only have a bit during the day when I'm not medicated and have none at all at night. The week before my period is a different story - then it's probably only 60-70% controlled. [/quote]
This makes me wonder if hormones are the reason many pregnant women get WED - the hormone profile is the same as the week before your period as your body is setting up shop just in case.

It also makes me wonder if there might be a hormonal way to treat this disease - perhaps modifying our hormone balance to stay away from the one that makes it worse. Do women on the Pill have a lower or higher incidence of WED?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

ViewsAskew
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Location: Los Angeles

Post by ViewsAskew »

Awhile ago I read somewhere that women have a higher incidence of WED until menopause. After that time, the rate is the same between men and women. This could have change, as this was awhile ago, but it would make sense as many of us have a hormonal component and the rate during pregnancy is much higher than the average.

But, they have no clue what is the factor, as far as I know. The Foundation's publication on pregnancy says they have not identified a factor and that few studies have been done. They list many likely culprits:

"Factors specific to pregnancy that might account
for the increased prevalence of RLS in pregnant
women have not been well delineated. Potential
contributors include low mineral or vitamin levels
(iron, folate), sleep deprivation (due to nocturnal
discomfort caused by changing body habitus,
decreased bladder capacity, or prolonged caffeine
half-life), hormonal changes, and increased
sensory input (such as caused by lower extremity
edema, varicose veins, and nerve compression).
A recent study reported that systemic iron levels
before pregnancy and reduced levels of serum
folate during pregnancy are associated with the
occurrence of RLS during pregnancy.12 Another
study reported lower rates of RLS in pregnant
women on folate supplementation compared
with women on vitamin supplementation
without folate.13
Very little research to date has been directed at
the treatment of RLS in pregnancy."


I don't know if they've studied women on the Pill to see if they have a lower incidence, but I'd guess not. I took it for many years because I have POS - polycystic ovarian syndrome - and didn't notice a difference in the years I was on it vs the years off it. I can certainly attest that the PLMs were just as bad while on it as when off it, unfortunately.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

So the perfect medication for us would need to give us 8 hours of sleep, energy and good mood the next day, higher sex drive, lighten menopause symptoms, grow hair for guys, make us lose weight, give us perfect boobs and more money and better jobs. LOL

I wish with all my heart that those who suffer so terribly could find help. I am an occasional bad nighter, although when it happens it is usually for at least a week at a time. I don't really know if I am supposed to broadcast this but I am flying out to DC later this week. I am now a patient rep for the Foundation to the FDA. I am doing training this week so if they call me to testify on what it is like to suffer from WED, I will be ready. And although I do not suffer as badly as many of you, I take your suffring with me to tell the story for all of us. If a new medication is up for approval, telling what it is like to suffer might make the difference on the outcome. We have never had a patient rep before and now we have two. That is a step forward.

Hang in there. I send good sleep vibes your way!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

cornelia

Post by cornelia »

That's very good! I am sure you are an excellent spokeswoman for telling them about what RLS can do to people's lives and what we want from meds. Good for you!

Corrie

ViewsAskew
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Location: Los Angeles

Post by ViewsAskew »

That is great news, Ruby! Not the bad sleep, of course, but the patient rep part ;-).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Location: United Kingdom

Post by Polar Bear »

Thank you Ruby - we really appreciate how much you put into helping us.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Location: Northwest Territories, Canada

Post by badnights »

I'm really glad about that, rubyslipper! We badly need spokespeople who are also sufferers, so decision-makers can hear it from the horse's mouth. And, you don't need massive mega-suffering to understand what suffering is! Best of luck in this work.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Thanks so much for the support. There may be times I will need feed-back from all of you, if you would be so kind! I am going now just for training--who knows if I will get called to testify? I am a patient rep for the next 5 years and I truly hope that in that time there will be lots of medications approved whether they need me or not.

I also thank the Foundation for their support in this endeavor. It has opened the door for better communications in general between them and the FDA. They work very hard for us!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Wayne
Posts: 181
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Rubyslipper wrote:I don't really know if I am supposed to broadcast this but I am flying out to DC later this


Hey your in my area! Watch out for the heat and good luck with your presentation!

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Yes, the weather there is about the same as back home. I'll be inside most of the time so should be okay. Thanks for the support!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Wayne
Posts: 181
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Rubyslipper wrote:Yes, the weather there is about the same as back home. I'll be inside most of the time so should be okay. Thanks for the support!


You know I just noticed your locality (when you said "home"). What a coincidence, I was born and raised in Kansas City MO. Still have relatives there, but don't see them more than once or twice a year. And I am still a Chiefs fan even though they haven't won a super bowl since I was six. I'm an anti-Redskins fan.

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