Hereditary WED & Ancestral Family History

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.
xristina47
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Hereditary WED & Ancestral Family History

Postby xristina47 » Fri Jul 27, 2012 7:23 am

I have been researching my family tree and couldn’t help wondering from which ancestral line in my family I have inherited WED. I suppose I’ll never really know but I have made a guess. I have concluded that the ancestral feminine line with the most sedentary lifestyle was the most likely culprit. I have certainly inherited the disease from my father, who suffered severely from the disease and, on his side of the family, I have identified my great mother who came from a very long line of Yorkshire woollen weavers, engaged in that occupation since way before the Industrial Revolution. Could it be that, over the generations, lack of activity has caused the brain to produce less iron, the consequence of which is that this altered brain function has come down to some descendants, like me? I wonder if any research has ever been done along these lines?

rthom
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Re: Hereditary WED & Ancestral Family History

Postby rthom » Fri Jul 27, 2012 7:44 am

Interesting thought. I haven't heard anything about it. Why don't you think you got yours from your dad?

debbluebird
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Re: Hereditary WED & Ancestral Family History

Postby debbluebird » Fri Jul 27, 2012 1:06 pm

I know I got mine from my fathers side of the family. My half sisters have it(same father) and my Aunt has it (my fathers sister). Don't know beyond that, they have all passed away. I have it the most severe. Another thing, none of us were sedentary. I have only become sedentary in the last year. I have had WED since the early 1980's. DEB

Polar Bear
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Re: Hereditary WED & Ancestral Family History

Postby Polar Bear » Fri Jul 27, 2012 7:44 pm

I have never been a sedentary person, always on the go. And of course this was my way of dealing with the symptoms for the many years before I found this site and got prescribed my medications.

There are no known rls sufferers in my family or the wider circle that I know of.
Hmmm... my father having had 11 siblings it's perhaps a bit of an assumption.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Hereditary WED & Ancestral Family History

Postby ViewsAskew » Sun Jul 29, 2012 8:57 am

I'd guess it's unlikely. Genetic changes don't happen that way. Somewhere along the line, someone on your dad's side had children with someone who carried the gene. It became part of the family DNA. Genetic changes take a very long time to happen - not a few generations.

While we call some WED idiopathic, there is likely a genetic issue that's currently unidentified. We just don't see a relative with it, so we say we don't know the cause. Could be the relatives never said anything. Could be the relatives carried the gene but the gene never got expressed. Could be a recessive characteristic to some WED genes.

Dr Rye suggests that this developed in cave-man days - looooooooooong ago.
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.

xristina47
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Joined: Mon Nov 01, 2010 10:20 am
Location: France

Re: Hereditary WED & Ancestral Family History

Postby xristina47 » Sun Jul 29, 2012 11:11 am

Thank you everyone for replying to this rather « shot in the dark » theory that I had. To reply to RThom, I certainly do know that I inherited WED from my Dad, but the question I was trying to figure out, was which line of my ancestry was the most likely to have passed the gene down to my Dad and me? It was obviously my father’s side so I had a choice between those who, for generations, had been farmers, stone masons and weavers. I ruled out the stone masons – how could people suffering from poor sleep cope with a job like Stone Masonry? I also ruled out those with a long history of farming for much the same reason. I thought that maybe the females were more likely to carry the gene than the males and when I realised that one feminine line had been involved in sedentary weaving for hundreds of years, I hit on the theory that maybe the inactivity over many, many generations might have caused a genetic change and that no matter how active I might try to be today, the altered gene has been passed down to me. In the same way, (if my theory was in any way correct, which is almost certainly isn’t), Debbluebird would have to go back many generations, not just her recent family. But, of course, I know nothing about genetics and I realise that this theory is flawed, so I’m perfectly happy to accept ViewsAskew very sensible answer. But, what a puzzling, intriguing disease this is!!

rthom
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Re: Hereditary WED & Ancestral Family History

Postby rthom » Sun Jul 29, 2012 3:20 pm

Sorry for the question, I just went back and re-read your note and figured out that I read it wrong--I thought you said your dad did not have it, thus the question about why ou thought it was from his side. Duhhhh---- Just a comment---I come from a line of farmers ang farming alows a person to setr their schedule as they need to. Also for work I was in the construction field for the better part of my life doing stone work--flagstone floors, fieldstone walls, etc. and although your theory makes sense it offers a calming effect to those who do it. It was one of the best things for me as it exhausted me enough to sleep through my symptoms without medication. I was exhausted but at least I slept some. :think: :wave:

ViewsAskew
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Re: Hereditary WED & Ancestral Family History

Postby ViewsAskew » Mon Jul 30, 2012 4:40 am

One of the things that puzzles WED docs is how well we function on such little sleep. I've not had a good night's sleep most of my life. I've had severe PLMs since I was a young child.

I watched my grandmother get just a few hours sleep a night for 35 years. There were no meds to help her. She was incredibly active. She had boxes of trophies from dance contests, played on a women's softball team, and was always running around doing something. She couldn't sit on the couch and be lazy because her legs would drive her crazy!

Those stone masons might be a better choice simply because the weavers would have been crazy sitting at the loom all day! The stone masons actually might have taken that line of work partially because they needed to be active and on their feet.
Ann - Take what you need, leave the rest



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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.

rthom
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Re: Hereditary WED & Ancestral Family History

Postby rthom » Mon Jul 30, 2012 6:08 am

That is my experience exactly.

Polar Bear
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Re: Hereditary WED & Ancestral Family History

Postby Polar Bear » Mon Jul 30, 2012 2:33 pm

Anne's comment about the stonemasons would be a parallel to exactly how I deal with my symptoms.
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

rthom
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Re: Hereditary WED & Ancestral Family History

Postby rthom » Mon Jul 30, 2012 4:37 pm

I often wonder what actually wakes me up, sometimes it's obvious, like the twitches or pain etc. Then there are times like last night where I had to exhaust myself to get any sleep (been that way for a while now) So at about 7:30 this morning after moving a whole room full of stuff out and carpeting it and moving the stuff back (like the mason thing--lol) Ifinally could get to sleep.I dozed off and awoke somewhere between 13-15min later. But the weird thing was, I was dead asleep--in the middle of a dream I was pulled out of my sleep and layed there awake wondering what happened. I had no reason to wake--not the pain or bad jerks etc. Is rousing out of sleep part of the rls or something else? I have another sleep study in a couple of weeks and my sleep journal isn't looking promising. 7hr 21min sleep is the total sleep naps included over the last 6 nights. Most of it is in about 20-30 min intervals. Anyway, it's just baffled me about why i wake when there seems to be no reason for it. Nothing seems to be bugging and to wake from the middle of a dream I thought takes some effort. Anyone else have this? :think:

ViewsAskew
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Re: Hereditary WED & Ancestral Family History

Postby ViewsAskew » Mon Jul 30, 2012 11:20 pm

I often awaken and don't know why. But I have PLMs, so I always assume it was those. I'm never aware of them.
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.

xristina47
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Joined: Mon Nov 01, 2010 10:20 am
Location: France

Re: Hereditary WED & Ancestral Family History

Postby xristina47 » Thu Aug 02, 2012 7:45 am

It’s very interesting to hear everyone’s experiences. Wow! RThom’s 7hr 20m sleep over 6 nights is pretty horrific. If that were me, I’d be drained of energy – I’d be unable to climb stairs without puffing and panting and I’d be totally unable to function or socialize. I know, because I’ve been like that when I withdrew from Ropinirole last year. It’s amazing you still had the energy to work through the night re-carpeting! Sometimes it’s hard to know how much you really are sleeping, as it’s so hard to record your own sleep accurately, don’t you think?

Yes, ViewsAskew, I hadn’t thought that the weavers would be unable to sit still all day – very good point! Interesting too to hear that 2 of you find that physically exhausting yourself enables you to fall sleep. In my experience, if I over-exert, (like going off on a very lengthy hike and getting utterly tired out), the PLMs really kick in (literally), day and night and sleep becomes a mighty battle. A very physical job, like Stone Masonry would be out of the question for me.

Re. the waking up in the night, I find my symptoms fluctuate over time. For the last 2 years it’s definitely the PLMs that wake me up - sometimes several times in the night. I make myself get out of bed straight away, moaning and groaning at the discomfort, (never pain), shaking my limbs, (arms too) and stamping my feet. I usually make a herbal tea and have it with a starchy snack like a banana plus a low sodium/low sugar cookie. Once out of bed, the PLMs gradually subside and the carbohydrate seems to make me drowsy, so I can eventually go back to bed. Sometimes I even have breakfast in the middle of the night, (a small bowl of mainly oatmeal cereal) and often this seems to help me to fall asleep again. I omit breakfast the following morning so I don’t get fat! When these tactics fail, I resort to half a tablet of Zopiclone.

ViewsAskew
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Re: Hereditary WED & Ancestral Family History

Postby ViewsAskew » Thu Aug 02, 2012 9:41 am

If I'm not used to strong activity, it definitely is worse. I went on a hiking trip in the Sierra Nevada mountains 12 years ago with a group of friends. I was there two weeks. We had some very strenuous hikes that took all day. Initially I had problems, but by the end, I slept exceptionally well. It's always worked like that for me. I have to get used to it and then I'm fine. I always hate it when I stop being active for awhile and then have to start over.
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.

rthom
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Re: Hereditary WED & Ancestral Family History

Postby rthom » Thu Aug 02, 2012 6:24 pm

It can be hard to accurately assess your own sleep, but I am doing a sleep study and have to note and very time I sleep for how long. Even if i doze off standing up I keep a record of it. It's easy to know when I wake but, the hard part is knowing when I dozed off. So I just jot down the last time I looked at the clock so that I over estimate my sleep not under-estimate it. (don't want them to be concerned about my honesty and think I exagerate it :-( ). My last sleep study was about 15-20 yrs ago and at the clinic I slept 2 and 1/2 hrs and my home sleep for the 2 weeks before averaged 3hrs 20 min. This makes sense since my sleep has been gradually getting worse and as the rls is progressive it all makes sense and falls in line according to the doctors. (Not sure if that is good news or bad???) Anyway just adds up to this lack of sleep being not a surprise and a true sense of my patterns. --Thus the new study--in case there is anything we are missing that can be done.
Just a note--this is my normal sleep not my problem time, I feel normal, not particularly stressed with it. It's amazing what we can get accustomed to if we need to. :shock: :mrgreen:


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