Comments on: Restless legs syndrome http://eaubeauhorn.wordpress.com/2008/03/09/restless-legs-syndrome/ Inner Workings Fri, 14 Aug 2009 01:28:39 +0000 http://wordpress.com/ hourly 1 By: andy http://eaubeauhorn.wordpress.com/2008/03/09/restless-legs-syndrome/#comment-112 andy Wed, 12 Nov 2008 23:54:41 +0000 http://eaubeauhorn.wordpress.com/?p=31#comment-112 Hi Eaubauhorn. You are so right about the mental allergy thing. It's like a fever with me and I'm sure it's related to brainwaves hence the fact it comes in the middle of the night for 2 or 3 hours then goes around 4am before deep sleep. I'm still looking for the miracle cure. But these things work very well for me: a big mug of tea (not tea bags but proper indian leaf tea, strong). The burning in back and legs goes in 15 mins most times I have tea but not every time and somehow the caffeine doesn't stop me getting to sleep. Sleeping on a very hard surface and/or rough surface. Best combination is on the floor with just a thin rug under me and a rough old towel that's been drip-dried and not folded so its slightly rougher than if it's tumbled and folded. I might try the diary thing. I have a bad allergy to brazil nuts and if I get a reaction by eating some by mistake the same very specific areas for rls in my back and legs go into cramps half an hour after eating them. It would be very interesting to know if anyone has had same experience as me on any of these things/ remedies. Andy Hi Eaubauhorn. You are so right about the mental allergy thing. It’s like a fever with me and I’m sure it’s related to brainwaves hence the fact it comes in the middle of the night for 2 or 3 hours then goes around 4am before deep sleep.
I’m still looking for the miracle cure. But these things work very well for me: a big mug of tea (not tea bags but proper indian leaf tea, strong). The burning in back and legs goes in 15 mins most times I have tea but not every time and somehow the caffeine doesn’t stop me getting to sleep. Sleeping on a very hard surface and/or rough surface. Best combination is on the floor with just a thin rug under me and a rough old towel that’s been drip-dried and not folded so its slightly rougher than if it’s tumbled and folded.
I might try the diary thing. I have a bad allergy to brazil nuts and if I get a reaction by eating some by mistake the same very specific areas for rls in my back and legs go into cramps half an hour after eating them.
It would be very interesting to know if anyone has had same experience as me on any of these things/ remedies. Andy

]]> By: laura bligh http://eaubeauhorn.wordpress.com/2008/03/09/restless-legs-syndrome/#comment-110 laura bligh Tue, 16 Sep 2008 19:59:32 +0000 http://eaubeauhorn.wordpress.com/?p=31#comment-110 Aaack....sorry, I thought I was replying to Laura's comment when in fact I was editing it. I lost her comment and can't get it back, but I'll still leave my reply. Phooey. EBH ---------- Laura, I just got back to my blog after some weeks away from it. I'll be curious to hear if giving up various foodstuffs is helpful. I find it can take a couple weeks, and often the real eye-opener is to re-start the food after being off it for two weeks, and seeing the negative result. My doctor has decided to agree with me that the cause of my particular problem is actually leaky gut, which is usually caused by an invasive candida infection. Since I react to a food within about 30 minutes of eating it, that indicates that it is getting through the intestine before it is completely digested; undigested proteins are called peptides, and in my case, they irritate my brain, and my brain sends out signals that give awful sensations and cause muscle jerks. The leg problems don't have anything to do with my legs. If changing the sensation to your legs (like wrapping them or hitting them) has an effect, that could be just because the new sensory signals interfere with the signals the brain is sending out, so you feel better. I think an allergy to wheat is often a mis-diagnosis of a gluten allergy, and much better results will be gotten by going completely off gluten for several months. It is difficult to do, but worth it in results. I don't bother with medical tests; I just do my own tests and seem to get more reliable results. Best of luck...I know this is a maddening problem. My latest reaction is to the intestinal fiber I was taking; I was about going nuts before I figured it out. Something new is always showing up for me, and I wonder if I'll end up not being able to eat anything at all. EBH Aaack….sorry, I thought I was replying to Laura’s comment when in fact I was editing it. I lost her comment and can’t get it back, but I’ll still leave my reply.
Phooey.
EBH
———-
Laura,
I just got back to my blog after some weeks away from it. I’ll be curious to hear if giving up various foodstuffs is helpful. I find it can take a couple weeks, and often the real eye-opener is to re-start the food after being off it for two weeks, and seeing the negative result.

My doctor has decided to agree with me that the cause of my particular problem is actually leaky gut, which is usually caused by an invasive candida infection. Since I react to a food within about 30 minutes of eating it, that indicates that it is getting through the intestine before it is completely digested; undigested proteins are called peptides, and in my case, they irritate my brain, and my brain sends out signals that give awful sensations and cause muscle jerks. The leg problems don’t have anything to do with my legs. If changing the sensation to your legs (like wrapping them or hitting them) has an effect, that could be just because the new sensory signals interfere with the signals the brain is sending out, so you feel better.

I think an allergy to wheat is often a mis-diagnosis of a gluten allergy, and much better results will be gotten by going completely off gluten for several months. It is difficult to do, but worth it in results. I don’t bother with medical tests; I just do my own tests and seem to get more reliable results.

Best of luck…I know this is a maddening problem. My latest reaction is to the intestinal fiber I was taking; I was about going nuts before I figured it out. Something new is always showing up for me, and I wonder if I’ll end up not being able to eat anything at all.

EBH

]]> By: eaubeauhorn http://eaubeauhorn.wordpress.com/2008/03/09/restless-legs-syndrome/#comment-26 eaubeauhorn Mon, 10 Mar 2008 17:27:33 +0000 http://eaubeauhorn.wordpress.com/?p=31#comment-26 Thanks for the comment. You may notice above in my original post that I said I take a time-release iron supplement, that has been highly beneficial. However, I have found that increasing the amount of iron does not increase the benefit; back when I first had the myoclonus and before I went on the gabapentin, I could take a high dose of the time-release iron (three pills at once, when the problem was very bad) and sleep blissfully within about 30 minutes. However, at this point in its progress, that amount of iron does not help, so I take only the single dose daily. I've never been diagnosed as anemic, and my ferritin levels have been "within the norm," but that doesn't stop me from doing my own experiments. I've gotten much, much better results from my own controlled experiments than I have from anything else. I find that going on a particular supplement for a period of time, for example a month, and then going back off it, often will give me insight as to what it was doing, when it is stopped. I went off the iron for a week and a half recently, and the symptoms became unmanageable over that period of time, proving to me once again that the iron is doing something measureable. I haven't requested an endoscopy; no point in paying for a test when I already have positive results from going off gluten. I'm that way in general with respect to medical tests; I find that symptomatic relief is much more important, to me, than diagnosis. Thanks again for your comment. I agree that celiac sprue is highly under-diagnosed, and most doctors when presented with symptoms that could be due to celiac sprue, don't even consider it because the patient is not presenting with the textbook symptoms that they learned in medical school. EBH Thanks for the comment. You may notice above in my original post that I said I take a time-release iron supplement, that has been highly beneficial. However, I have found that increasing the amount of iron does not increase the benefit; back when I first had the myoclonus and before I went on the gabapentin, I could take a high dose of the time-release iron (three pills at once, when the problem was very bad) and sleep blissfully within about 30 minutes. However, at this point in its progress, that amount of iron does not help, so I take only the single dose daily. I’ve never been diagnosed as anemic, and my ferritin levels have been “within the norm,” but that doesn’t stop me from doing my own experiments. I’ve gotten much, much better results from my own controlled experiments than I have from anything else. I find that going on a particular supplement for a period of time, for example a month, and then going back off it, often will give me insight as to what it was doing, when it is stopped. I went off the iron for a week and a half recently, and the symptoms became unmanageable over that period of time, proving to me once again that the iron is doing something measureable.

I haven’t requested an endoscopy; no point in paying for a test when I already have positive results from going off gluten. I’m that way in general with respect to medical tests; I find that symptomatic relief is much more important, to me, than diagnosis.

Thanks again for your comment. I agree that celiac sprue is highly under-diagnosed, and most doctors when presented with symptoms that could be due to celiac sprue, don’t even consider it because the patient is not presenting with the textbook symptoms that they learned in medical school.
EBH

]]> By: ViewsAskew http://eaubeauhorn.wordpress.com/2008/03/09/restless-legs-syndrome/#comment-25 ViewsAskew Mon, 10 Mar 2008 15:28:45 +0000 http://eaubeauhorn.wordpress.com/?p=31#comment-25 Hello...it's certainly possible that RLS is related to peptides, similarly to what they think happens in autism, etc. But, anyone who reacts positively to a removal of gluten could easily have celiac disease, as you think in your case. Since blood testing isn't 100% accurate and only an endoscopy is, even people who've had negative blood testing could have celiac. In one recent study, those with few or no symptoms were missed by blood tests a large percentage of time. Even a small percentage of those with severe symptoms had negative blood tests. About 90% of celiacs in the US are undiagnosed. And, many doctors (even gastros) are ignorant about the current research regarding celiac. While they used to think the symptoms had to be gastrointestinal, they now know that a huge percentage of people have neurological symptoms, many have RLS, and many react to dairy, too. Good luck with gluten free. I have a celiac in the house and we've been doing it for about 11 years. He still has RLS sometimes, though I have it daily (I am not a celiac and being GF does not help me). One thing you may or may not have checked is your ferritin level. Celiacs are often anemic and that in itself can cause RLS. But, for those of us without anemia, we can sometimes find great improvement in RLS by increasing ferritin levels to over 50 (which is MUCH higher than any doctor or lab thinks it needs to be). While iron doesn't remove my RLS, I am better when my ferritin is higher. Hello…it’s certainly possible that RLS is related to peptides, similarly to what they think happens in autism, etc. But, anyone who reacts positively to a removal of gluten could easily have celiac disease, as you think in your case. Since blood testing isn’t 100% accurate and only an endoscopy is, even people who’ve had negative blood testing could have celiac. In one recent study, those with few or no symptoms were missed by blood tests a large percentage of time. Even a small percentage of those with severe symptoms had negative blood tests. About 90% of celiacs in the US are undiagnosed. And, many doctors (even gastros) are ignorant about the current research regarding celiac.

While they used to think the symptoms had to be gastrointestinal, they now know that a huge percentage of people have neurological symptoms, many have RLS, and many react to dairy, too.

Good luck with gluten free. I have a celiac in the house and we’ve been doing it for about 11 years. He still has RLS sometimes, though I have it daily (I am not a celiac and being GF does not help me). One thing you may or may not have checked is your ferritin level. Celiacs are often anemic and that in itself can cause RLS. But, for those of us without anemia, we can sometimes find great improvement in RLS by increasing ferritin levels to over 50 (which is MUCH higher than any doctor or lab thinks it needs to be). While iron doesn’t remove my RLS, I am better when my ferritin is higher.

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