neuropathy and WED

[debbluebird]

I agree with Steve. I believe that RLS is just not caused by one, two or three things. It is very complex. Steve described it well, with the spider web. Like he said, that's why one treatment works for some, but not for others. But it goes beyond that, because as we all know, something might work at first, then later no longer does. My goal is to try and improve my health in all areas, which might be a factor of my RLS.

[Rustsmith]

Thanks Deb. Another good analogy for the treatment is the "Whack a Mole" game. You can treat one cause or avoid a trigger and seem to get improvement in the short term, i.e. whack that mole. But once you get that input or strand in the spider web addressed, the control shifts to another thread or another mole pops up. You can whack that one by making the proper adjustment at which point a different mole pops up. In theory if we knew everything, we might be able to reach the perfect balance. But that balance point will vary from individual to individual and maintaining that balance might lead to a very boring existence.

[ViewsAskew]

Excellent analogy, Steve.

[figflower]

I respectfully disagree. You're turning a cold into a sneeze. A cold is caused by a virus (we can debate what a virus is) but a sneeze is symptom of many conditions and causes. RLS is a disease onto itself, it is not merely a symptom of cancer or pregnancy or back injury, like a sneeze is. An itch can have many sources but atopic dermatitis is a disease onto itself. A sneeze is like a spider web linked to so many conditions and substances that we may never unravel it's mystery. There isn't much mystery to a cold or RLS. And just because a disease is silent (like heart disease/clogged arteries) until some tipping point doesn't make it any less of a separate disease. And just because heart disease affects people from many walks of life with many different diseases and co-morbid illnesses does not make it something other than clogged arteries. And RLS is not something other than lousy dopamine receptors. Lots of things trigger symptoms in RLS just as running a marathon may trigger angina pain in a person with clogged arteries, but ultimately it is not the marathon that caused the clogged arteries.

[Rustsmith]

I must be completely missing the point of your medical analogy. To me, RLS is a disease that is more than simply a problem with dopamine concentrations and receptors. For me and quite a number of others, it is also a disease that Johns Hopkins believes is associated with glutamates that appear to be responsible for the insomnia that so many of us suffer from. And even that does not explain why there are a number of other medical problems that appear to frequently be co-morbid with RLS, such as migraines and abnormal thermal sensitivity.

Where does all this lead? I think it simply points out that RLS is still a "new" disease with respect to research and that it probably goes far deeper than anyone can guess right now. There is even still some disagreement as to whether it is a disease or a syndrome. Personally, I am in the camp that it is a disease. But the fact that the experts cannot even agree upon how to classify it simply points out that at this point, we are not even close to knowing what we don't know about RLS.

[figflower]

Oh forget all that. You're clearly a scientist or chemist yourself and obviously brilliant and I momentarily have your attention so let's talk Quantum physics. What's up with that double slit experiment as well as those spooky particles at a distance. I saw that you tube video called Dr. Quantum about seven years ago and have been up to 3am every night trying to figure it all out. I might as well try to figure out the meaning of life, the universe. And please don't tellme it's only happening at the micro level. If sub atomic particles can occupy several places (or no places) at the exact same moment in time ( if time even exists) then the same has to be true for u and I. We must be everywhere and nowhere until someone or something collapses the moment. So what do u think??? Hmmm???

[peanut1]

Great responses everyone!

Steve,
I agree with what you stated. The reason this disease is so mysterious is that it act like a catalyst for people. Rather than feeling dizzy from a lack of ferritin it acts out with WED. Same thing for someone with digestive issues i.e. there is no pain in the stomach it all comes out in the WED. Finding the right problem for your particular WED can probably help people manage it better. I believe in both alternative/clean eating methods and prescription meds to manage this stuff. Recently I went to the acupuncturist and mentioned the neuropathy and according to Chinese medicine this (the neuropathy) fits right into a blood disorder or stagnant blood which also deals with anemia or an inability to digest the iron. It's interesting that I went to a psychic recently to help clarify something that was giving me a ton of anxiety and consequently affecting the sleep. I happened to mention the WED and "why did it get severe in 2011?" She tuned in and said it had to do with anger. Well I was plenty mad about my brothers untimely death then, but I blew off her response as something that only a psychic would say if they didn't understand things such as WED. Interestingly enough the stagnant blood condition (trying to get the blood moving to help the ferritin level) the acupuncturist diagnosed me with deals with the liver which is the emotion of anger. Do I think this will cure the WED? Heavens no--I'm not that naïve anymore!! But what I'm hoping is that over time it will help me manage it a bit more where I don't have to be afraid of the meds not working or a bad period is a consistent 4 hours instead of 2. So I keep trying. But I do think the connection with the Chinese stuff is interesting.

To everyone,
Yes, there is a lot we don't know. But I would NOT let that hold me back from trying new things that are in a reasonable price range. Persistence, patience and hope (coupled with reality) always pay off to some extent.

[figflower]

Hi Peanut. Great attitude. Between the attitude, the acupuncture, the anti-fungals and the iron my guess is you will see some much needed improvement?

Well here's a tidbit about what we do know as of September 2015, wish there was some way of injecting iron directly into brain:

Abstract

Sleep Med Clin. 2015 Sep;10(3):215-26. doi: 10.1016/j.jsmc.2015.05.006. Epub 2015 Jun 13.

Neuroimaging in Restless Legs Syndrome.

Provini F1, Chiaro G2.

Neuroimaging studies are of crucial relevance in defining the pathophysiology of restless legs syndrome (RLS). MRI studies showed no structural brain lesions and confirmed a central iron deficiency. Structural and functional studies showed an involvement of the thalamus, sensorimotor cortical areas, and cerebellum in RLS and assessed neurotransmission abnormalities in the dopaminergic and opiate systems. Finally, glutamatergic hyperactivity has been proposed as a cause of disrupted and shortened sleep in RLS. Differences among the results of the studies make it difficult to draw any definitive conclusions, thus, suggesting the need for future research.

Copyright © 2015 Elsevier Inc. All rights reserved

[peanut1]

Yes, that would be wonderful if they could figure out why the iron can't get to the brain and what to do about it!!! There also could be other things iron related and other causes that we don't know about yet. Even if the anemia kicked if off the question is what can help manage it better? I don't know if the accupuncture helped or not, but I do know I've been had herbs that can act as effective as the medications for a while.

Beth,
I found it extremely interesting what you wrote about the underlying thing that kicks the WED into severe will determine what medication will work. So Gabapentin seems to be the only RLS drug that seems to work for me. Makes me wonder if my main problem is the excess of glutamate as I read someone on here that Gabapentin can help. Here's another site that hints at this, I have not tried the other med but want to bring it up to my doc when I see him next.

http://www.ncbi.nlm.nih.gov/pubmed/15355323

[figflower]

Wow Peanut it would be wonderful if you would share the names of those herbs. I will give each and everyone a go when I get an attack. One of the reasons (and this is just a huge guess) that they may stop working is for the same reason that the DAs do. It seems that substances that cause a quick, large pop of dopamine release (like potassium, quinine and possibly turmeric) eventually need to be increased in order to get the same amount of relief. Plus if you started to take those herbs earlier in the day, before an attack, then I could see why they would not work at all. Just a guess. And some herbs and supplements (like magnesium maybe) may actually be dopamine ANTAGONISTS. Sounds like something we should all avoid at all costs. But I believe that SOME dopamine ANTAGONISTS may actually Up-regulate our receptors whereas the dopamine AGONISTS (as we know) Down-regulate our receptors. So maybe an ANTAGONIST in the morning (never in the evening) will help us. Strange and confusing I know. My brain hurts just thinking about it.

With that said I believe that Gabapentin is a dopamine ANTAGONIST. And you're right, maybe the reason it is effective is because it lowers that excitatory substance glutamine in our brains. Anyways, here's a similar article that talks about how Gabapentin reverses the affects of morphine and specifically that it "inhibits" or counteracts that release of dopamine caused by morphine. Now how can both help RLS? How can morphine help RLS as well as gabapentin? Unless like you said it lowers glutamic acid initially and in the long run up-regulates our receptors??? The best part of this discussion is that if we can find natural (whatever that means) substances that cause a quick large pop of dopamine we can use those substances while we are doing or taking other things (like intermittent fasting or anaerobic exercise or magnesium or uridine monophosphate) to up-regulate our receptors until we no longer need those quick shorting acting DA like substances.

[figflower]

Oops here's article:

http://www.ncbi.nlm.nih.gov/pubmed/11605097

[figflower]

One more thing - about getting iron into the brain - I believe that if you take a form called iron bisglycinate, on an empty stomach with only water (I actually open the capsule and drop the contents into the water) during an attack and not a second before (and you jump up and down three times while facing North ) then you just might be able to get that iron into your brain and you just might get a good night's sleep. Not a cure, at least not for me. I have an incredibly healthy red blood count and iron stores yet those healthy numbers do NOTHING for me when I'm naughty like when I take Tagamet or Benedryl or over-eat at night. The over-eating RLS is pretty short-lived as is the diet coke RLS. The Tagamet and Benedryl caused RLS lasts several hours. So that iron-bisglycinate has to be repeated with each attack.

By the way, speaking of herbs, I have a friend whose husband is addicted to hot peppers. He sprinkles it on everything from eggs to tacos (of course). His brother won a pepper eating contest. These guys are literally like cocaine addicts, they crave this stuff and I personally think it's great. Turns out that red peppers cause a quick large release of dopamine and may explain why people become addicted to chili peppers. I personally have no doubt that in the long run peppers, like any good DA, will cause our receptors to shrink. In NORMAL people, the receptors probably recover quite quickly because their brains are able to acquire and hold onto iron. We on the other hand....

The moral of the story is that all of the DAs are good and necessary and life saving be it Mirapex or peppers or quinine or potassium (in the right form), but we have to keep on the look out for things that are making our RLS symptoms worse than they have to be and we probably have to actively look for ways and things that will shore up our shoddy receptors. Iron bisglycinate will temporarily shore up our receptors. But my BODY iron levels are getting too high for my tastes. So even if we have to fast twice a week and take magnesium in the morning and maybe iron once and awhile for the rest of our lives is that such a bad thing?

[badnights]

fig - I have mentioned elsewhere (viewtopic.php?p=82000#p82000) and Steve has as well, about why WED/RLS is not just a dopamine-iron thing. I can't help thinking that it must have been the first thing you read about, so you try hard to find a connection between everything (histamines, glutamate) and dopamine, but if you had read about opioids first, you would be trying just as hard and succeeding in relating everything to opioids, because in fact everything is interconnected, so your dredged-up connections are of dubious import.

It is a problem that you think you understand it all, because you don't. I have tried to show you where I see that some parts of your reasoning are wrong. Knowing some of your reasoning is wrong makes me suspicious of the rest of it, though I'm not about to investigate everything you say.

I don't have the time or energy to keep up on this board as I used to, so I haven't read everything you've posted, not even in this thread... but I am going to take off my moderator hat and respond personally to something.

" You understand what's going on from a very scientific point. Throw these people a lifeline."

No I don't! And by God if I had a lifeline I'd be throwing it!

I have always shared my understanding of things. What I am trying to do now is stop your over-enthusiastic rampages when they go tearing down a clearly wrong path, sort of damage control. I would appreciate if you would qualify your statements with "in my opinion" and "I think" instead of stating things as if they were god-affirmed truth all the time - it might help people who mistake certainty for veracity. Problem is, you don't seem to allow that you might not always know the truth. None of us knows for sure, even when we're very sure, and it's a good policy us to always remain aware of that.

[figflower]

Ok sounds good thank you.

[Yankiwi]

Thank you, Beth. I'm not a scientist and don't understand scientific or pseudo-scientific papers. I don't have the background or training. And when paper after paper is fired like bullets through this forum it makes me weary. Luckily, I'm a skeptic at heart so I'm not going to try every suggestion. I'm grateful for genuine advice made by experienced, sympathetic sufferers and moderators.