Sleep has changed for the better !

[ViewsAskew]

I wish all of you much reduced or eliminated symptoms! Not that I wish you all to have other diseases to control.

[debbluebird]

I'm not sure what I will do just yet. Have to think about it, since my husband goes through hell with me. But it would be interesting to know. But then, if they don't go away, then what do I take ?

[ViewsAskew]

I'm not sure what I will do just yet. Have to think about it, since my husband goes through hell with me. But it would be interesting to know. But then, if they don't go away, then what do I take ?

There rarely seem to be easy answers, does there?

[debbluebird]

When my WED/PLM first started over 20 years ago, I had quite a lot of caffeine in my diet. About five years later I started Mirapex. I slowly learned what triggered symptoms. I don't think that the WED/PLM will ever go away completely.

[Polar Bear]

I can recall about 15 years ago when I worked full time and before there was any helpful site such as this. I possibly didn't even own a computer.
My symptoms were then 24/7 and this was many many years before I started any medication.
I would have had perhaps 3 cans of Diet Coke during my working day, paying no attention to caffeine or indeed aspartame/sugar.
It is likely that I was feeding the fire !!

[debbluebird]

I can recall about 15 years ago when I worked full time and before there was any helpful site such as this. I possibly didn't even own a computer.
My symptoms were then 24/7 and this was many many years before I started any medication.
I would have had perhaps 3 cans of Diet Coke during my working day, paying no attention to caffeine or indeed aspartame/sugar.
It is likely that I was feeding the fire !!

I know I was now. The caffeine and aspartame was very high in my diet. Also I was very stressed, had sleep apnea and didn't know it. I also know there is a family history of WED, but those family members never took any medication and were able to sleep through it. Their husbands reported the moving legs.

Now that I have also added thyroid medication, have eliminated all of the above, I'm sleeping better. I think I will be eliminating sugar, and adding tyrosine. I would love to be off of the methadone.

[EeFall]

It makes me wonder if there isn't something like aspartame (that totally makes my RLS horrendously worse) that is lurking out there that is the primary cause for most RLS. I doubt it is that simple but maybe it is a combination of things that trigger it so that it is not easily discerned. If you have A, B, and C and they are all available in a variety of different ways to get into a RLS person's body, it triggers the symptoms. It could be ingested, from touch, from smell, even sight if it had to do with light. Like A could be something like asphalt that is everywhere outside, B could be a vitamin found in a variety of foods, and C might be a plastic substance found in many places such as food containers, or in use in cars, or places of work. When one comes into contact with all 3 with the right quantities it triggers RLS like putting epoxy together from 2 different tubes. Without mixing them they are inert but put them together and they make a strong glue.

That is very simplistic examples though because the chemicals that are created nowadays are incredibly complex. They do a lot of testing of chemicals to make sure they are safe, but it would be impossible to test every chemical with every other chemical on the planet natural or created by us. It could even be in the clothes we wear, the air we breathe, the food we eat. The symptoms of RLS seem to me like a reaction to a chemical in the environment. My allergies have always been terrible. I once went to have the allergy tests that they do on your back and I was allergic to everything they tested. A few things were so bad I would die from them within a few hours such as being around horses. Maybe it is why my RLS is so bad because I am already allergic to so many things. I said A, B and C but it may be 2 things or 99 things. Maybe the dopamine receptors, the glutamate, the iron and all that other mumbo-jumbo is just the result of the real problem which is something in the environment messing up our bodies, so they are the effect but not the cause. Healthy people are just not bothered by it just like most people aren't allergic to horses.

It might be interesting for RLS sufferers to be taken away from their present environments and put into a completely different part of the planet, wearing totally different clothes, eating different food, just everything different and see what happens. I would think that places like Antarctica, Greenland, the Sierra desert might be the best types of places to try to see if the symptoms are the same. Down in a deep mine maybe lol.

[debbluebird]

It makes me wonder if there isn't something like aspartame (that totally makes my RLS horrendously worse) that is lurking out there that is the primary cause for most RLS. I doubt it is that simple but maybe it is a combination of things that trigger it so that it is not easily discerned. If you have A, B, and C and they are all available in a variety of different ways to get into a RLS person's body, it triggers the symptoms. It could be ingested, from touch, from smell, even sight if it had to do with light. Like A could be something like asphalt that is everywhere outside, B could be a vitamin found in a variety of foods, and C might be a plastic substance found in many places such as food containers, or in use in cars, or places of work. When one comes into contact with all 3 with the right quantities it triggers RLS like putting epoxy together from 2 different tubes. Without mixing them they are inert but put them together and they make a strong glue.

That is very simplistic examples though because the chemicals that are created nowadays are incredibly complex. They do a lot of testing of chemicals to make sure they are safe, but it would be impossible to test every chemical with every other chemical on the planet natural or created by us. It could even be in the clothes we wear, the air we breathe, the food we eat. The symptoms of RLS seem to me like a reaction to a chemical in the environment. My allergies have always been terrible. I once went to have the allergy tests that they do on your back and I was allergic to everything they tested. A few things were so bad I would die from them within a few hours such as being around horses. Maybe it is why my RLS is so bad because I am already allergic to so many things. I said A, B and C but it may be 2 things or 99 things. Maybe the dopamine receptors, the glutamate, the iron and all that other mumbo-jumbo is just the result of the real problem which is something in the environment messing up our bodies, so they are the effect but not the cause. Healthy people are just not bothered by it just like most people aren't allergic to horses.

It might be interesting for RLS sufferers to be taken away from their present environments and put into a completely different part of the planet, wearing totally different clothes, eating different food, just everything different and see what happens. I would think that places like Antarctica, Greenland, the Sierra desert might be the best types of places to try to see if the symptoms are the same. Down in a deep mine maybe lol.

I agree with you. That's why I have eliminated anything that I think might be making my WED/PLM worse. Years ago I drank caffeine, now I don't. Sugar is the hardest thing for me to eliminate, along with chocolate. Every time I eat or drink something with chocolate in the evening, my legs are worse.
Maybe we should live in a bubble?

[Polar Bear]

[ViewsAskew]

NOOOOOOOOOOOOOOOOOOOO!

When does it end? There must be some way for us to be sort of normal. I mean, not eating chocolate? That must be a form of torture!

[Polar Bear]

I saw a comment recently (not here) where a lady asked her doctor some questions about handling a chronic condition.

Lady.... What Care should I take with my diet.
Doc... Just have a little of everything.

Lady ... What exercise should I take.
Doc.... Just do what you feel up to.

Lady..... What about alcohol.
Doc... Whatever you've been taking up to now - double it

I'm assuming the last one was tongue in cheek !!

[EeFall]

It makes me wonder if there isn't something like aspartame (that totally makes my RLS horrendously worse) that is lurking out there that is the primary cause for most RLS. I doubt it is that simple but maybe it is a combination of things that trigger it so that it is not easily discerned. If you have A, B, and C and they are all available in a variety of different ways to get into a RLS person's body, it triggers the symptoms. It could be ingested, from touch, from smell, even sight if it had to do with light. Like A could be something like asphalt that is everywhere outside, B could be a vitamin found in a variety of foods, and C might be a plastic substance found in many places such as food containers, or in use in cars, or places of work. When one comes into contact with all 3 with the right quantities it triggers RLS like putting epoxy together from 2 different tubes. Without mixing them they are inert but put them together and they make a strong glue.

That is very simplistic examples though because the chemicals that are created nowadays are incredibly complex. They do a lot of testing of chemicals to make sure they are safe, but it would be impossible to test every chemical with every other chemical on the planet natural or created by us. It could even be in the clothes we wear, the air we breathe, the food we eat. The symptoms of RLS seem to me like a reaction to a chemical in the environment. My allergies have always been terrible. I once went to have the allergy tests that they do on your back and I was allergic to everything they tested. A few things were so bad I would die from them within a few hours such as being around horses. Maybe it is why my RLS is so bad because I am already allergic to so many things. I said A, B and C but it may be 2 things or 99 things. Maybe the dopamine receptors, the glutamate, the iron and all that other mumbo-jumbo is just the result of the real problem which is something in the environment messing up our bodies, so they are the effect but not the cause. Healthy people are just not bothered by it just like most people aren't allergic to horses.

It might be interesting for RLS sufferers to be taken away from their present environments and put into a completely different part of the planet, wearing totally different clothes, eating different food, just everything different and see what happens. I would think that places like Antarctica, Greenland, the Sierra desert might be the best types of places to try to see if the symptoms are the same. Down in a deep mine maybe lol.

I agree with you. That's why I have eliminated anything that I think might be making my WED/PLM worse. Years ago I drank caffeine, now I don't. Sugar is the hardest thing for me to eliminate, along with chocolate. Every time I eat or drink something with chocolate in the evening, my legs are worse.
Maybe we should live in a bubble?

I am just speculating that is could be something like a mixture of things that we come in contact with in the environment but who knows? There isn't enough known about WED. If we eliminate everything that makes us happy, then we will not be happy! I have eliminated coffee several times over the years but it has no effect on my RLS. The best way is to just try eliminating something like that for a few weeks. Aspartame was the one thing that ALWAYS was found to make my RLS worse, and almost immediately.

I think it is possible that if researchers could experiment by taking severe RLS patients from their present environment to a new environment (virtually different everything) that they may see a dramatic difference but it is not practical. It could be that there would be no change at all, I just daydream sometimes wondering if there would be a difference. It would be a total disruption of peoples lives and is not something that is going to happen. The best we can do right now is to try to think about the cause and effect of things. Usually I can't drink alcohol because it gives me RLS symptoms almost immediately so I avoid it, most of the time. Last night I drank some wine anyways (and luckily it didn't bother me) but one has to enjoy living. If we eliminate everything we enjoy where is the fun in that? We suffer enough.

[EeFall]

NOOOOOOOOOOOOOOOOOOOO!

When does it end? There must be some way for us to be sort of normal. I mean, not eating chocolate? That must be a form of torture!

They will have to pry my M&M's from my cold dead hands!

[EeFall]

I saw a comment recently (not here) where a lady asked her doctor some questions about handling a chronic condition.

Lady.... What Care should I take with my diet.
Doc... Just have a little of everything.

Lady ... What exercise should I take.
Doc.... Just do what you feel up to.

Lady..... What about alcohol.
Doc... Whatever you've been taking up to now - double it

I'm assuming the last one was tongue in cheek !!