WED/RLS and endometrial ablation

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
laurg
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WED/RLS and endometrial ablation

Postby laurg » Sat Jan 28, 2012 7:39 pm

Hello,
I am new to this (message boards) so please forgive me if I do something wrong. I did not know where to turn and thought a message board would be a good place. I wanted somewhere reputable, the RLS/WED Discussion Board, I thought would be the best.
I am looking at getting endometrial ablation (NovaSure) done to lighten the effects of my WED/RLS during that "time of the month." My WED/RLS is so much worse to the point of having difficulty standing and walking along with the lack of sleep. My doctor has said that the extra loss of iron is probably the culprit. He has given me sleeping pills (which are used to control seizures) to take, but I don't want to take them if I don't have to.
Getting to the point...I was wondering if there was anyone else who has had more severe WED/RLS symptoms during menstruating and if so, have you had endometrial ablation done. If you have had the ablation, did it work to lessen or control your WED/RLS symptoms during menstruation? My doctor is unsure if the ablation procedure will work, my Gyn is also unsure, and is cautious about doing the procedure without some kind of evidence.
I would greatly appreciate any thoughts anyone is willing to share.
Sincerely,
Laur

ViewsAskew
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Re: WED/RLS and endometrial ablation

Postby ViewsAskew » Sat Jan 28, 2012 8:22 pm

Hi Laur,

Many of us have worsened symptoms pre and during menstruation. It could be the iron loss, but many of us have light periods and still have increased symptoms. Pregnant women have worsened symptoms, too. So, could be iron, could be hormonal.....could be something they've yet to identify.

I can't think of anyone on this board over the years that's said they had this procedure done. My BFF did, but she didn't have WED!

I've always had light to non-existent cycles (polycystic ovarian syndrome), but in the last year, as the fibroids have increased and I'm probably in peri-menopause, they are much worse some months, but still light others. Until 3-4 months ago, my symptoms were MUCH worse every month just before and during my cycle, no matter how heavy the flow was. In the last 3-4 months, though, the flow has been heavier than ever, but the WED symptoms are not worse.

I wish this were more clear-cut....
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.

laurg
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Re: WED/RLS and endometrial ablation

Postby laurg » Sat Jan 28, 2012 8:40 pm

Ann,
Thanks...but I have to say...Awww...shucks!
Well, maybe I can be a first, and let others know if it worked or not!
I love education and allowing people to learn from me. (I love having medical students "practice" on me.)
So maybe this is just one of those times.
Thanks again.
Laur

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Re: WED/RLS and endometrial ablation

Postby ViewsAskew » Sat Jan 28, 2012 8:55 pm

I hope it does work!

And, thanks for being a guinea pig :lol:
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.

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Re: WED/RLS and endometrial ablation

Postby badnights » Sun Jan 29, 2012 6:14 pm

Hi laurg
I have worsened symptoms for about 2 weeks just before my period, but it is typically not bad during it. Like Ann, I suspect it is more hormonal than to do with blood loss. I'd like to make sure, before you go through with this, that you're aware that there are medications that control the symptoms? Your doctor may not be aware of them, although he seems to be aware of the connection between RLS and iron. Did he refer you to a neurologist?

What medication did he prescribe? Was it an anti-convulsant, or a hypnotic? Because hypnotics (sleeping pills, either benzodiazepines or the newer kind) do not treat the symptoms of RLS/WED, they just make you sleepy. In some cases, they allow sleep despite the symptoms, but in other cases they don't, and you end up stumbling around while your brain is asleep - not pleasant, and dangerous. Some of the hypnotics have other properties that are useful in RLS eg. anti-anxiety (like clonazepam/Klonopin). So what I'm saying is, if he has prescribed a hypnotiic, that is not the right thing to use for RLS/WED. Some older doctors or doctors trained by older doctors are not aware of this. There are three drugs approved by the American FDA for RLS/WED and none is a hypnotic.

The first line of treatment is the dopaminergic drugs (also used for Parkinson's) . If you only have RLS during your period, you might be able to use Sinemet, which works well but makes symptoms worse if used daily. If you have daily symptoms that need treatment, FIRST make sure your blood ferritin is over 50 then try one of the first two drugs approved by the FDA for RLS/WED: the dopamine agonsits (DAs) pramipexole/Mirapex or ropinirole/Requip. (If you take these when you have low ferritin, they are likely to make the symptoms worse over time).

The second line of treatment, if the DAs have bad side effects, is the anti-convulsant class of drugs, including the third drug approved for RLS/WED, Horizant (gabapentin encarbil).

The next line of treatment is the opioids. Many of us end up on a combination of DA and anti-convulsant, or DA and opioid, or anti-convulsant and opioid, if one medication by itself is not doing the trick. So you see, there is a line of attack and a range of choices for treatment. If you need endometrial ablation for some other reason, then go for it. If you have low iron, that has to be dealt with. And if you would prefer to try the procedure in the hopes that it works and you won't need medication, absolutely go for it. I just want to be sure you're aware of your options. Let us know what happens!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

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Re: WED/RLS and endometrial ablation

Postby Chipmunk » Mon Jan 30, 2012 1:23 am

I highly doubt that heavy periods are the sole reason your WED symptoms worsen during that time. Iron levels just do not rebound quickly enough for there to be a cessation of symptoms for a couple weeks with a rapid worsening the next couple weeks. If you want the ablation done to treat excessive bleeding, that's one thing, but I would be shocked beyond belief if it cured your 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.

rthom
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Re: WED/RLS and endometrial ablation

Postby rthom » Mon Jan 30, 2012 1:41 am

if you get the wrong meds for sedation ot may make it worse--would it not?

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Re: WED/RLS and endometrial ablation

Postby badnights » Mon Jan 30, 2012 1:50 am

rthom wrote:if you get the wrong meds for sedation ot may make it worse--would it not?

you mean during the operation? absolutely, and that's a good point.

Laur, make sure the operating team team knows that certain substances might make your WED worse (and possibly cause involuntary movements of the legs - that should make them take it seriously). It might be a good idea to bring a copy of the RLS Foundation pamphlet on RLS and surgery to your initial appointment with the doctor doing the procedure and again to the procedure, to hand directly to the anesthesiologist. Unless you're just getting a local anesthetic.

RLS and Surgery
http://www.rls.org/Document.Doc?id=2082
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

laurg
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Re: WED/RLS and endometrial ablation

Postby laurg » Mon Jan 30, 2012 6:42 pm

Wow, I never expected such a response.
Beth, Thank you so much for the breakdown of medicines used to treat WED. I neglected to give my history, because I tend to be long winded.
I have been "diagnosed" (whatever that means, another long winded story for a different board, I am sure.) with WED for about 5 years now. I think I had it before then, after seeing my grandmother live with it for all of my life and before. I never really noticed it at night while I slept, but when I was diagonsed with sleep apnea the doctor said that I had quite a few leg movements through the night. I always noticed it during the day. I would beat on my legs or bounce them ALL THE TIME, without being nervous. My grandmother always said it affected her calves, my is in my thighs. I have recently (within the past 2 years) switched pulmonary specialists and my current doctor specializes in RLS. He did a lot of research on one of the medications that is out there. (Which one, I can not remember and I do not want to misquote.) He worked with my General Practitioner to change my blood pressure medicine, which was acting against my requip. This has helped a great deal with controlling my WED symptoms. I take requip at bedtime (1mg) and have since first diagnosed.
I have talked often with my pulmonary specialist about my leg issues during my cycle. He prescribed 0.5mg of Clonazepam during that time of month. And now listening to all of you I am beginning to wonder if my leg issues at that time are NOT my WED symptoms acting up. My Fertin numbers have always been ok. Sometimes the blood work comes back with slightly low iron counts, but not always.
The feeling in my legs that I am thinking albation will eliminate are a heavy feeling, I always describe it as feeling like jello. I am down for about 1 1/2 days simply because I can not stand. I also have a difficult time sleeping. I do notice an increase in my WED symptoms during the day, though for about 2 weeks. The needing to move my legs and the crawly feeling. I am not looking for a cure to my WED, just something to alleviate the severe leg issues (that may or may not be related to WED) I have now.
Thank you all for all the information. I will print out the link that Beth sent me and take that with me.

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Re: WED/RLS and endometrial ablation

Postby ViewsAskew » Mon Jan 30, 2012 9:30 pm

Hi Laur,

One of our past members used to experience a similar heaviness. She always assumed it was part of the WED. She used a cane sometimes. We just know so little about this dratted disease...so hard to know with symptoms like this what it could be.

For what it's worth, there are at least 5 different genes implicated in WED and PLMs. Scientists speculate that people can have different combinations of them, making symptoms hard to define and treatment hard to get right in some cases.
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.

laurg
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Location: Cincinnati, OH USA

Re: WED/RLS and endometrial ablation

Postby laurg » Tue Jan 31, 2012 12:54 am

Wow.
What is PLM?
I have often wondered if I really do have WED. I have been reading the quarterly newsletter and have learned so much! (I have only just received the last 3). It is the only journal I have ever read every word of. Some stuff I learn makes me think what I have is not WED (which scares me, I want to have a name for what is wrong with me), other stuff I read confirms that what I have is WED. I so enjoy the Bedtime stories people have shared. I never knew it could be so bad. In fact I now have a greater respect for those who suffer from this disease! I was unable to get my requip prescription filled and I shared the nightly walking with those who experience it nightly. It was the most miserable night of my life. I cried and all I could think about was how I could break into CVS and get my requip! I pray for those who have worse symptoms than I and yet deep down, I have a feeling my time is coming. I am 39, I have so many more nights to go. I can't imagine being a child with this disease. It has made me look at my students a bit differently too. I let them wiggle, walk, move in their chairs more. I remember sitting in my chairs with my legs tucked up underneath me. (I was short and couldn't touch the floor.) I wonder how many students are on Ritalin that should be on requip.
Thank you all so much.

rthom
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Re: WED/RLS and endometrial ablation

Postby rthom » Tue Jan 31, 2012 1:07 am

PLM Periodic Leg Movements, like little repetitve twitches or jumps etc. Maybe even muscle twitches. that sort of thing. Makes it hard for your brain to go into deep sleep because of the repetitive jerks and twiches. It's not WED but alot of those that have one have the other.

ViewsAskew
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Re: WED/RLS and endometrial ablation

Postby ViewsAskew » Tue Jan 31, 2012 1:25 am

Laur, as Randy posted, PLM is for periodic limb movements.

These are intermittent, regular movements (like every 30 seconds) that occur as a flexion from the toe, ankle, knee, or hip. Rarely, the arms are also involved.

The vast majority of us have these while sleeping (PLMS). We are often not aware of them, but our bed partners are! They keep us in phase 1/2 sleep much of the night, and REM and deep sleep are often limited.

Sometimes, we have movement while waking (PLMW). These are like jerks of the affected part. I flex from my knee and my hip. When they happen when I'm standing, I can lose my balance.

In terms of not being sure...it's sort of simple in a way.

1) Do you have an icky, weird, unpleasant or potentially painful feeling?
2) Do you feel that you MUST move the affected body part, usually at the same time you have this icky feeling, but sometimes preceding it? This may be accompanied by anxiety, worry, dread, or other not-so-fun emotional feelings?
3) Even if you have it all day and all night long, is it worst in the evening, when relaxing, and when not doing a whole lot of anything?
4) Can you distract yourself from it with puzzles, games, really interesting reading, by solving a problem, etc.?

That's RLS/WED in a nutshell.
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.

laurg
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Location: Cincinnati, OH USA

Re: WED/RLS and endometrial ablation

Postby laurg » Tue Jan 31, 2012 1:31 am

So if I answer yes to these 4 questions...It is WED.

ViewsAskew
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Re: WED/RLS and endometrial ablation

Postby ViewsAskew » Tue Jan 31, 2012 2:55 am

laurg wrote:So if I answer yes to these 4 questions...It is WED.


yep.
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.


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