Open question #4: Why are WED symptoms so erratic?

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Frunobulax
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Open question #4: Why are WED symptoms so erratic?

Post by Frunobulax »

Hi again,

I have another question that falls in the "heck, this is puzzling" category, and where I haven't found even a single attempt to give a satisfactory answer.

Why are our symptoms so erratic? Why is it that the symtoms get worse and better, or change in type, for some days or weeks - without an apparent external trigger? I find that intensity, onset and type of my symptoms vary - sometimes they are strong during the day, preventing any sleep, sometimes I can take a nap. Sometimes I do have insomnia, sometimes I haven't. In the evening there are usually strongest, but still - on some days there're no symptoms to speak of, on other days I thought I did everything right (moderate exercise, no foods that I associate with WED triggers, no stress), but the symptoms drive me crazy.

I don't believe in magic or earth radiation. I think if my symptoms get worse, there's got to be an explaination somewhere - something that I ate, something in my environment, anything. But still there are times where I really can't make out why my symptoms should change - but there's got to be something, and if we knew what it was then we may have made a step towards understanding the disease.

(One recent example: Right now I'm in rehabilitation in a clinic - I've had 8 different WED medications over the course of the last year, and at some part my body probably thought "that's enough". Well, right at the start my WED symptoms completely vanished for a few days (with opioid medication, of course). I thought this would be due to the fact that there is no stress, only moderate physical activity, and so on. But after a week the symptoms came back, and in such force that I had to switch medication (to a stronger opioid) after a couple of weeks - and being on the diet given by the clinic, and the time schedule given by the clinic, I'm 100% sure that there was no change in my environment.)

Polar Bear
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Polar Bear »

Perhaps erratic symptoms are actually a symptom of WED.

I wish you well as you detox your medications.
Do you think that coming of medications in this rehab setting will be a more successful way of getting there. I do hope so.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Re: Open question #4: Why are WED symptoms so erratic?

Post by ViewsAskew »

My only analogy would be pain. I think there are many similarities between pain and WED.

When I have a broken bone, let's say, sometimes it throbs and I can only think of it. Other time, I think of it very little or not at all.

Of course, that type of pain is relatively constant and WED can come and go.

I think there are likely many factors that set off WED when it's mild or moderate. When mine was in that category, I could go weeks without it. But, certain things caused it every time. One was going to bed too late - it disrupted chemicals in my brain, is my guess. The next was wearing tight clothing. I worked in a big city and took a train to work. On the way home, if I hadn't removed my hosiery, I was in misery - I was tired, I was sitting there quiet with no distractions and that tight hosiery drove me NUTS! But, if I didn't wear it (or took it off on the train as I was wont to do) I had no symptoms.

My guess is that there are unknown mechanisms and I do not know how we'd find them. For example, could you study all the different types of likely hormone and chemical levels in my body each time I had WED and compare to when I didn't have i? How could you do that? Something is clearly different...but how to zero in on it?
Ann - Take what you need, leave the rest

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Polar Bear
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Polar Bear »

The very idea of tight hosiery makes me feel stressed. I can't bear it, indeed nowadays I am thankful to be more or less hosiery free - excepting socks... with non elastic tops.
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

ViewsAskew
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Re: Open question #4: Why are WED symptoms so erratic?

Post by ViewsAskew »

Polar Bear wrote:The very idea of tight hosiery makes me feel stressed. I can't bear it, indeed nowadays I am thankful to be more or less hosiery free - excepting socks... with non elastic tops.


I am with you - just writing about it made me feel wiggly!!!!!
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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Re: Open question #4: Why are WED symptoms so erratic?

Post by Polar Bear »

Feeling Wiggly is a perfect description.
Feeling wiggly is sort of pre pre pre symptoms.
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

Frunobulax
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Frunobulax »

ViewsAskew wrote:My guess is that there are unknown mechanisms and I do not know how we'd find them. For example, could you study all the different types of likely hormone and chemical levels in my body each time I had WED and compare to when I didn't have i? How could you do that? Something is clearly different...but how to zero in on it?


No idea. It would probably be necessary to monitor the levels of the key neurotransmitters Glutamate and Dopamine, to get an idea if their levels are directly connected to WED symptoms and what makes the levels change. But I think monitoring these is rather hard. Still, it might be worth the effort.

Frunobulax
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Frunobulax »

ViewsAskew wrote:I think there are likely many factors that set off WED when it's mild or moderate. When mine was in that category, I could go weeks without it. But, certain things caused it every time. One was going to bed too late - it disrupted chemicals in my brain, is my guess.


I wasn't very long in that category - I struggled about half a year without a WED diagnosis, and went straight to dopamine agonists once I got the diagnosis since 1-2 doses of L-Dopa wouldn't control the symptoms. After a few years I reached in the "difficult case" category.
During the last weeks I kept a strict timetable, including consistent bedtimes. Still my symptoms are very erratic - last night was terrible (severe WED symptoms until 4AM), the 2 nights before that I slept great, before that I had about a week where I would always wake up after 1-2 hours sleep with WED symptoms.

ViewsAskew
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Re: Open question #4: Why are WED symptoms so erratic?

Post by ViewsAskew »

I was in the mild category for WED for 25 years, I suppose. I had severe PLMS, but didn't know that was a problem. For me, the treatment for PLMS (DAs) caused my WED to become severe (in a matter of weeks). So, I went from WED once or twice a month to daily within 7 days and from daily to 24/7 in a few months.

There is a HUGE difference between those two states - the WED prior to DA treatment and the WED after.
Ann - Take what you need, leave the rest

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EeFall
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Re: Open question #4: Why are WED symptoms so erratic?

Post by EeFall »

Looking back on my life my symptoms have become progressively worse since I was a little kid. It did not interfere with my life really bad until the year 2000 although I knew something was not right way back in 1985. Since then it has gotten much worse. So the major reason for me that things always seem to be changing is that my RLS is getting worse. Whatever RLS is in my body, like lack of absorption of iron to brain (or whatever) must get worse with age or the the time that I have it.

I suspect the other major problems our environment and food. Some things like aspartame bother my RLS really bad. What about the things I eat, wear, or even the air I breathe that may contribute to it that I don't even know makes it worse? Aspartame alone is in many products and it is easy to ingest without realizing it.

Another thing is the tolerance buildup of my medications, the need to take more over time. Then of course augmentation. Another thing with medications is I have found over 14 years is that they only last for awhile and then stop working. Combinations of medications will do the same thing. I recently found that Claritin that I have taken for years now makes my RLS worse, even medications that used to be alright aren't anymore. I suppose that includes other things like food & chemicals in the the air and environment.

So the roller coaster ride never seems to end with people who especially have severe RLS which is controlled by medications. Without medications I don't sleep for 24 hours a day until I eventually pass out on my feet because I usually can't even sit down and must pace for at least 16 hours a day (or do whatever activity that involves movement standing up), the other 8 hours I would be lucky if I can sit down for a few minutes at a time. Roller coaster ride pretty much describes the erratic symptoms.

I mention severe RLS because there are many others with RLS who do not have erratic symptoms and don't even have to take medications, it never gets worse for them. I think there is more than one type of RLS, much of it is of a mild variety fortunately.

Yankiwi
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Yankiwi »

WED is a crazy disease. It's almost surreal the way it comes and goes. Mine comes every night after 2-5 hours sleep, usually 3. I'm thrilled if I am still asleep after three hours. Almost anything can trigger it. Right now I have sciatica but hardly even notice it during the day. At night it seems to be a trigger. I've been severe for about ten years but only on medication once about six years ago for a few months with Sinemet but the side effects were too severe so I stopped. Six months ago I started on ropinerol but I'm wary of augmentation so I've cut back to 50mg from 62.5. The past few nights have been more like the bad old days but I'd rather have that than problems with too much medication.

I eat a healthy diet, drink very little alcohol, no caffeine, no additives since I make all our food from scratch except crackers and the little ice cream we eat. But even so, I can have a big chocolate dessert and sleep fairly well that night and not so well on nights when I haven't eaten anything potentially harmful.

I think WED just jumps on any chance at all to worm its way in. If I am sitting in the evening I have to get up as soon as I feel a twitch or I can take over an hour to make it go away by jumping around and stretching. I try to get it before the twitch turns to pain but don't always. Another really weird thing with me is that the symptoms switch legs throughout the night. I get to sleep fine most nights then wake up with pain in one leg, sort that out, get back to sleep and the next time I wake up it's in the other, etc. Sometimes it's in both, sometimes in the calf, other times in the thigh, sometimes in my whole leg or both.

I call my WED "stupid legs" which is something I didn't see on the word pattern thing.

ViewsAskew
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Re: Open question #4: Why are WED symptoms so erratic?

Post by ViewsAskew »

I often say stupid legs, too!, "Drat these stupid legs," I'll yell to no one in particular, but usually my husband. I think he might have started it, though....my family always called them "jumpy legs." We've four generations with it that we're aware of. My nieces are in college; hopefully they won't have children for awhile so should be at least 15 or 20 years before we know if the next generation is as blessed.
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.

Yankiwi
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Re: Open question #4: Why are WED symptoms so erratic?

Post by Yankiwi »

It's hereditary in my family too. My father was in a deepening coma for the last week of his life and his legs were still moving almost until the end. Siblings and cousins have it, I hope my nieces and nephews escape, but, as you implied, more is being learned about it all the time so maybe medical treatment will be more straightforward for them. I had to figure it out for myself, largely through reading the rls website many years ago.

No one could sum it up better than Sir Thomas Willis in 1672: "Wherefore to some, when being abed they betake themselves to sleep, presently in the arms and legs, leapings and contractions on the tendons, and so great a restlessness and tossings of other members ensue, that the diseased are no more able to sleep, than if they were in a place of the greatest torture."

debbluebird
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Re: Open question #4: Why are WED symptoms so erratic?

Post by debbluebird »

My WED/PLM definitely come in cycles. I didn't notice this until the last few years. I have periods, where I have few symptoms and then it changes to increased symptoms. I think sometimes I do something, or consume something to trigger symptoms, but I'm not sure. A week or so ago when I was having increased symptoms, I replaced one methadone with an oxycodone. It went back to reduced symptoms that night. The next night was a little worse, but then the nights after that were back to few symptoms. I don't know why this works, but it does. I don't always do this, because frankly, I forget. When I do something to break the pattern, it always changes, either for the better or for the worse. If I hadn't taken that oxycodone, I don't know how long the bad pattern would have continued.

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