Introducing myself

Whether new to RLS/WED 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.
Enigmaman
Posts: 12
Joined: Sat Jan 27, 2018 5:45 pm

Introducing myself

Postby Enigmaman » Sun Jan 28, 2018 7:44 pm

Hi. I have just joined the site and am introducing myself. I have RLS and sleep apnoea. The apnoea is treated by means of a BiPAP machine but the RLS is still a big problem. Pregabalin did not work and neither did Clonazepam, which in fact backfired badly and caused severe withdrawal symptoms, and I am still tapering off it. I have joined this board hoping for ideas on easing the RLS.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing myself

Postby Rustsmith » Sun Jan 28, 2018 8:32 pm

Enigmaman, take a look through the thread titled "A good place to start" in the Just Joined forum. You will learn that there are currently 3 classes of medications used to treat RLS. The first are the dopamine agonists (DAs), which generally include Mirapex (pramipexole), Requip (ropinirole) and the Neupro patch(rotigatine). The second group are the alpha-2-delta ligands, which is usually Neurotin (gabapentin), Horizant (gabapentin enacarbil) and Lyrica (pregabalin). The final group are the opioids, which includes a large number of meds that are all generic products now.

You will also find that many of us have found that our doctors often are not familiar with how to properly treat RLS. So, many of us have bought copies of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Henning, et.al. The book was written for doctors, but is also understandable for those of us who do not have MD behind our names. It is available from Amazon for about $30.
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.

stjohnh
Posts: 592
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Postby stjohnh » Sun Jan 28, 2018 10:09 pm

Hi Enigmaman, welcome. It would help to tell us a little bit about your restless leg syndrome, exactly what your symptoms are, and how bad they are. Do they keep you awake at night? Most patients are usually started out with Requip or Mirapex. Have you tried either one of those? Have you had your ferritin checked? Ferritin is an indicator of iron status and low brain iron is a significant contributor to RLS.
Blessings,
Holland

Polar Bear
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Location: N. Ireland

Re: Introducing myself

Postby Polar Bear » Mon Jan 29, 2018 9:18 am

Enigmaman - many sufferers find that there are food triggers, often caffeine, alcohol, nicotime, sugar. These are the more common triggers although they don't act as a trigger to everyone. We are all very different in our responses to foods and indeed to medication.

I would support Steve's advice to get the book 'Clinical Management of Restless Legs Syndrome'. The authors are leading experts in the treatment of RLS and it is useful for discussions with your doctor. It is not a difficult read.

Also, knowledge is power. Very possibly knowledge that a GP may not have. This book will educate you and in turn educate your doctor. My copy goes with me to doctor appointments with appropriately placed post-its.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Enigmaman
Posts: 12
Joined: Sat Jan 27, 2018 5:45 pm

Re: Introducing myself

Postby Enigmaman » Tue Jan 30, 2018 7:59 pm

Hi and thanks for your messages.

My RLS has been investigated in an overnight hospital inpatient sleep study. I apparently have 17 events per hour that disrupt my sleep.

The symptoms are waking with a feeling of overwhelming fatigue. On the worst nights, I awake in the morning feeling as if I have actually become more tired during sleep. This is often accompanied by an overwhelming urge to urinate that I have subconsciously suppressed during sleep. Nightmares involving struggle of some kind usually go with this. Most recently I had dreams about sitting exams I did not feel equipped for.

To see if there is anything that can be done to ease possible bladder issues and their possible impact on sleep, I am in the process of undergoing investigations including a scan and blood tests.

Right now I happen to be struggling to recover strength after getting flu. I feel it is a much harder struggle for me as the virus and RLS seem to be conspiring to keep me from getting better. I have been waking to feel utterly out of breath, fearing I would stop breathing. This was scary and prompted me to join this forum. Happily, the last two nights have been much better.

Thanks for the tips on meds and foods, and the book.

stjohnh
Posts: 592
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Postby stjohnh » Tue Jan 30, 2018 9:18 pm

How about telling us what meds you take now and dosage, what meds you have tried in the past, how well leg jumping is controlled, how old you are and what your ferritin level is. How many years you have had RLS and how you came to be diagnosed?
Blessings,
Holland

badnights
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Location: Northwest Territories, Canada

Re: Introducing myself

Postby badnights » Wed Jan 31, 2018 4:24 am

Lots of questions but it will help :)
Also, what are your symptoms like? Do they stop you from going to sleep? Do they force you to walk around?
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.

Enigmaman
Posts: 12
Joined: Sat Jan 27, 2018 5:45 pm

Re: Introducing myself

Postby Enigmaman » Wed Jan 31, 2018 6:43 pm

stjohnh wrote:How about telling us what meds you take now and dosage, what meds you have tried in the past, how well leg jumping is controlled, how old you are and what your ferritin level is. How many years you have had RLS and how you came to be diagnosed?


Taking Clonazepam, just over 1mg now, down from 2mg started March 2015. Also taking Citalopram and Levothyroxine.

Have tried Pregablin and Requip in the past, with no noticeable benefit.

leg jumping/tensing is not controlled well, if at all, by the Clonazepam, which I am tapering off.

I am 51 years old and have no idea what my ferritin level is.

I have had RLS for many years - not sure exactly when it started - probably 30 years ago or so.

I was diagnosed about three years ago after an inpatient sleep study.

My symptoms do not stop me from going to sleep. They do however mean that I often wake feeling exhausted - with my legs literally tensed rigid.

badnights
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Location: Northwest Territories, Canada

Re: Introducing myself

Postby badnights » Wed Jan 31, 2018 7:44 pm

It sounds more like periodic limb movement disorder than RLS/WED. Do you feel abnormal sensations in your legs when you sit or lie down in the evening, and are those sensations removed or lessened by standing up and walking? Is there an urge to move accompanying the abnormal sensations? If you don't feel that urge to move that's lessened when you get up and walk, you don't have RLS/WED.

PLMS (periodic limb movements in sleep) is can be terrible too. The "events per hour" in your sleep study may have been periodic limb movements. RLS/WED is not measurable as events in a sleep study.

You might need to find a doctor familiar with RLS/WED who can check the diagnosis.
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.

stjohnh
Posts: 592
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Postby stjohnh » Wed Jan 31, 2018 8:37 pm

I think Beth is correct.
Blessings,
Holland

Polar Bear
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Location: N. Ireland

Re: Introducing myself

Postby Polar Bear » Thu Feb 01, 2018 12:16 am

Enigmaman - you haven't mentioned the overpowering urge to get up and walk in order to try and ease horrible sensations. This is a major characteristic of RLS.

You mention leg jumping and tensing but no sensations...... And you say that your symptoms do not prevent sleep. RLS sensations would definitely make sleep difficult.

Does not sound like RLS.
Beth has hit the nail on the head.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Enigmaman
Posts: 12
Joined: Sat Jan 27, 2018 5:45 pm

Re: Introducing myself

Postby Enigmaman » Sat Feb 03, 2018 5:55 pm

Oh, I thought RLS and PLM could be used interchangeably.

It sounds like they are variations on the same disorder, and the medications are identical AFAICS.

bUt if I am in the wroNg place I had netter clear off then.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Introducing myself

Postby Polar Bear » Sat Feb 03, 2018 6:39 pm

Enigmaman - please don't be going just yet. :)
If your symptoms turn out to be PLMS and not RLS, there may still be information that could be useful to you. It is quite a high % of RLS sufferers that have to also deal with PLMS, 80% comes to mind. They are both movement disorders but you don't have to have one.... in order to have the other. They are similar and the treatment can be similar.

The difference between these two sleep disorders is that PLMD/PLMS is an involuntary action—the patient often sleeps (though sometimes not restfully) through an episode of leg movements. ... In other words, restless leg syndrome keeps the patient awake; periodic limb movement disorder often occurs when the patient is already asleep.

I am fortunate not to have PLMS but many of our members suffer from this also very distressing condition.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 3443
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing myself

Postby Rustsmith » Sat Feb 03, 2018 7:19 pm

Enigmaman, as Polar Bear said, most of the information that you will find here for the treatment of RLS also applies to PLMS. The statistics that I have seen say that 85% of RLS patients also have PLMS but that only 15% of PLMS patients have RLS. Since PLMS is much easier to diagnose than RLS, it seems rather strange to me that there has been only a limited amount of research done into PLMS. However, that may be starting to change. I recently saw an article that reported a theory of some geneticists who are starting to look at RLS and PLMS. Their theory is that PLMS is a subset, possibly involving just a couple of the 20 genes that have so far been identified for RLS. With the overlap of the patient population and the similarity of medications used, that certainly seems plausible.

About the only discussions that you will find here that may not be applicable to PLMS are the ones involving opioids. It is my understanding that opioids are not an effective method of treating PLMS, which is very good for you considering the issues with that class of meds today. I have both severe RLS and severe PLMS and take both an opioid and a dopamine agonist. The opioid is for the RLS movements and the dopamine agonist is for the PLMS. Last week I forgot to take my dopamine agonist one night and it was terrible. My RLS was under control while I was awake, but as soon as I would fall asleep, I was awakened by violent kicks from the PLMS. What I learned from that is 1) the opioid didn't do anything for my PLMS and 2) although the two conditions may be related and the dopamine agonist treated both for a while, the two conditions are definitely not the same thing.
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
Moderator
Posts: 4956
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing myself

Postby badnights » Sat Feb 03, 2018 7:22 pm

Steve, my post was vaporized by yours, apparently. I must have submitted at almost the exact same time. I'll try to remember what I said :
@ Enigmaman
Goodness, don't leave! We deal with PLMS here a lot. And you should use us to get as much information as possible on both disorders (WED/RLS and PLMS) at least until you get a definitive diagnosis. If it's neither of those, then you might not benefit from us anymore, but if it's PLMS you can still find it useful to be here.
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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