Newly possible RLS member!

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Rika
Posts: 6
Joined: Thu Sep 17, 2020 6:55 pm

Newly possible RLS member!

Post by Rika »

Hello,

I am from the USA in IL. I'm 29 years of age, and have been told I might have RLS alongside sleep apnea. I was told during a recent surgery I wouldn't stay still and it made it longer to perform the surgery. It was a stent in the left side in the ureter.

I got referred to see a sleep specialist and will be doing a sleep study! Hope to learn more from members here and become a part of the site.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Newly possible RLS member!

Post by stjohnh »

Hi Rika,
Welcome to the group. From your comments, I gather that you don't notice any leg jumping in the evening or when you are trying to sleep. Assuming that is the case, you probably don't have RLS. It is possible that you have PLMS, Periodic Leg Movements of Sleep. This is somewhat related to RLS, but doesn't cause much problem for the patient, but may cause lots of problems for a bed partner.
Blessings,
Holland

Rustsmith
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Location: Colorado Springs, Colorado

Re: Newly possible RLS member!

Post by Rustsmith »

Welcome Rika

There are no tests that can diagnose RLS, a diagnosis is based upon your answers to a series of questions. To get an idea of what is involved, take a look at the Internations RLS Study Group's consensus diagnostic criteria. http://irlssg.org/diagnostic-criteria

It is possible to diagnose PLMS (Periodic Leg Movements during Sleep). The attach a couple of sensors to your legs and look for rhythmic motion of your leg muscles, especially if they are associated with short term awakenings. About 80% of those of us with RLS also have PLMS and the treatment of PLMS is usually the same as for RLS. But as Holland mentioned, PLMS is usually a greater issue for bed partners. Early on, I heard a joke about a sleep doctor who could "diagnose" PLMS without having to perform a sleep study. He asked the patient to roll up the legs of their pants and looked for the bruises that resulted from the bed partner getting fed up with being kicked and so kicked back hard enough to leave a bruise. :lol:
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Location: Los Angeles

Re: Newly possible RLS member!

Post by ViewsAskew »

Rustsmith wrote:
Fri Sep 18, 2020 1:57 am
Welcome Rika

There are no tests that can diagnose RLS, a diagnosis is based upon your answers to a series of questions. To get an idea of what is involved, take a look at the Internations RLS Study Group's consensus diagnostic criteria. http://irlssg.org/diagnostic-criteria

It is possible to diagnose PLMS (Periodic Leg Movements during Sleep). The attach a couple of sensors to your legs and look for rhythmic motion of your leg muscles, especially if they are associated with short term awakenings. About 80% of those of us with RLS also have PLMS and the treatment of PLMS is usually the same as for RLS. But as Holland mentioned, PLMS is usually a greater issue for bed partners. Early on, I heard a joke about a sleep doctor who could "diagnose" PLMS without having to perform a sleep study. He asked the patient to roll up the legs of their pants and looked for the bruises that resulted from the bed partner getting fed up with being kicked and so kicked back hard enough to leave a bruise. :lol:
My partner, one day, rolled up his pant legs and showed me some scabs on his calves. Apparently my big toenail had gouged him in the night. That test would have worked for us!
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.

Rika
Posts: 6
Joined: Thu Sep 17, 2020 6:55 pm

Re: Newly possible RLS member!

Post by Rika »

stjohnh wrote:
Thu Sep 17, 2020 10:56 pm
Hi Rika,
Welcome to the group. From your comments, I gather that you don't notice any leg jumping in the evening or when you are trying to sleep. Assuming that is the case, you probably don't have RLS. It is possible that you have PLMS, Periodic Leg Movements of Sleep. This is somewhat related to RLS, but doesn't cause much problem for the patient, but may cause lots of problems for a bed partner.
The past few nights I have noticed my legs both have had a weird "hurting" feeling. It's...hard to explain as RLS people will say. I think it'd be best described as like...an achy feeling? Also my legs hurt exactly like that post operation too. It has been cold in our house, and we're turning on the heating now. :P

I have always been the kid who couldn't stay still no matter what, and I do move my legs at night when awake but mostly just out of habit. I do notice sometimes tingly feelings and such do occur, or I have to itch my feet and/or legs.

But again, very possible this is NOT RLS and is PLMS.

badnights
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Re: Newly possible RLS member!

Post by badnights »

Hi and welcome Rika!

It's quite possible that you have WED/RLS, not (or not just) PLMS. WED/RLS movements can occur when the patient is anesthetized (so I read in an RLS Foundation brochure that has since been revised and no longer includes that statement).

If you have an urge to move, it's probably WED/RLS. The urge to move is usually accompanied by distressing sensations of some kind - pain, ache, electrical, tugging, buzzing, crawly, whatever (e.g. weird "hurting" achy feeling or tingling). The urge to move is worse in the evenings than mornings, and alleviated by getting up and walking around (but is not relieved by simply shifting position).

It can seem like a habit because for some reason those of us with WED/RLS never really think about it (until it becomes a big problem or until a doctor notices it!!! which never ever used to happen so you're lucky!)

Try not moving one night and see what happens. Then you'll know whether you;re just moving out of habit or because you have to.

My guess: you won't be able to lie still for long. You probably have WED/RLS. The sleep study doctor can diagnose RLS/WED by asking you similar questions and ruling out other possibilities.

My recommendation: take the prescription if they offer you one, but don't fill it and don't take any medication. Make sure they check your iron status, including ferritin, and try taking oral iron (or, if your ferritin is below 100 and transferrin saturation below 45, intravenous iron if they'll give it to you) to see if that fixes the WED/RLS. Read as much as you can about all the medications used for WED/RLS before you take any.
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
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Re: Newly possible RLS member!

Post by ViewsAskew »

I had very bad PLMS that started as a toddler - but didn't realize it. Everyone just thought I was a weird sleeper - the covers would be a huge mess and I'd sometimes be upside down in bed. No one would sleep with me. I also had RLS/WED - but id was VERY mild. The first time I realized that something was different when I slept was when I had my wisdom teeth pulled. The doctor brought me up out of sedation and asked if I had epilepsy. Apparently the Benadryl given with the sedative had kicked off (pun intended) the leg movements and they were so severe, it looked like I was having a seizure.

But it wasn't for ten more years that I realized it had a name and was really different than the WED/RLS - and was the cause of many of my issues.
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.

Rika
Posts: 6
Joined: Thu Sep 17, 2020 6:55 pm

Re: Newly possible RLS member!

Post by Rika »

badnights wrote:
Sun Sep 20, 2020 6:21 am
My recommendation: take the prescription if they offer you one, but don't fill it and don't take any medication. Make sure they check your iron status, including ferritin, and try taking oral iron (or, if your ferritin is below 100 and transferrin saturation below 45, intravenous iron if they'll give it to you) to see if that fixes the WED/RLS. Read as much as you can about all the medications used for WED/RLS before you take any.

i am guessing my PCP would need to order an iron labs or even the sleep specialist? I am still learning all this stuff, honestly. I will try and find the info on medications they give for WED/RLS though.
ViewsAskew wrote:
Sun Sep 20, 2020 7:22 am
I had very bad PLMS that started as a toddler - but didn't realize it. Everyone just thought I was a weird sleeper - the covers would be a huge mess and I'd sometimes be upside down in bed. No one would sleep with me. I also had RLS/WED - but id was VERY mild. The first time I realized that something was different when I slept was when I had my wisdom teeth pulled. The doctor brought me up out of sedation and asked if I had epilepsy. Apparently the Benadryl given with the sedative had kicked off (pun intended) the leg movements and they were so severe, it looked like I was having a seizure.

But it wasn't for ten more years that I realized it had a name and was really different than the WED/RLS - and was the cause of many of my issues.
Oh, I see! I've had wisdom teeth surgery or something similar years ago as a child, and never once was this brought up. I am guessing this must be new to. I don't have surgery often, and yeah....this totally just happened to me lol

Rika
Posts: 6
Joined: Thu Sep 17, 2020 6:55 pm

Re: Newly possible RLS member!

Post by Rika »

So long overdue update

I am getting a sleep study done in December, and the sleep doctor ordered an iron blood test! Been dealing with BAD kidney stones and such recently, and going thru 2 surgeries going on a third next month.

badnights
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Re: Newly possible RLS member!

Post by badnights »

Yikes, kidney stones are horrible. What kind of surgeries are you having?

Good on the iron labs and sleep study!

I have to apologize - I read over my previous post and I really can't guess whether you have WED/RLS. You could tell, not me. Did you try not moving one night?
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.

Rika
Posts: 6
Joined: Thu Sep 17, 2020 6:55 pm

Re: Newly possible RLS member!

Post by Rika »

badnights wrote:
Sun Oct 25, 2020 6:43 pm
Yikes, kidney stones are horrible. What kind of surgeries are you having?

Good on the iron labs and sleep study!

I have to apologize - I read over my previous post and I really can't guess whether you have WED/RLS. You could tell, not me. Did you try not moving one night?
Based on the iron labs, the iron level is within normal range according to the doctor. Sleep study is on for December. Also, nope! I can't! It's hard for me NOT to move be it sleeping or standing. It's always been a thing for me.

Rustsmith
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Re: Newly possible RLS member!

Post by Rustsmith »

the iron level is within normal range according to the doctor
You need to call back and find out exactly what the numbers are. The normal ferritin range for everyone else is about 20 to 300 depending on age, gender and the lab. But for those of us with RLS, it should be greater than 75 and preferable greater than 100.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Re: Newly possible RLS member!

Post by badnights »

yes, what steve said! "Normal" is not informative enough, and not all doctors realize this.
... Did you try not moving one night?
..., nope! I can't! It's hard for me NOT to move be it sleeping or standing. It's always been a thing for me.
Sure sounds like WED/RLS, then.
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.

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