42 and RLS worse than ever

[ViewsAskew]

Not true that there is nothing different - that we know of. I was doing nothing different than you when I tried the same thing. I used no opiates, no agonists, no drugs at all. And iron in food or any form did nothing for me.

The study of 8 brains of folks who had had RLS when alive showed that we have plenty of receptor. IIRC, we had more than normal. What we didn't have was docking systems that actually worked - they were not functional because there wasn't enough iron in the cells for them to form correctly.

I don't believe that is one mechanism involved - there are multiple. There isn't one "variety" of RLS/WED, either. With 5 or 6 genes and people who have primary, secondary, and idiopathic, multiple things are at play, and multiple items help or hinder.

[figflower]

Viewsaskew, I guess that's where we disagree. I believe that there is an RLS spectrum but no primary or secondary. I believe that everyone with RLS has low brain iron levels (not their bodies) and as a result there is very little dopamine leaving our brains to travel through the central nervous system to our peripheral nervous system. The VAST majority of people with MS, diabetes, PN, pregnancy, anemia or RA will NEVER develop RLS. It is only people who are genetically pre-disposed to RLS that will have their RLS triggered by these diseases in what I believe is falsely termed secondary RLS. People with so called "primary" RLS who have no other diseases, are taking no drugs, are not pregnant, have no spinal issues, no gut issues and still have severe RLS are as rare as people who win the lotto. I have never met such a person. But that's just me so not a good control group. I know that young people, including myself, that have had RLS (mild mostly) but I had IBS and there are also a lot of hormonal changes that can trigger RLS when you are young. Have you ever known anyone (20s, 30s) with severe RLS that had absolutely nothing wrong with them. I mean nothing. Even allergies can be a trigger. Histamine (oddly enough) interferes with the release of dopamine, just as anti-histamines do. It's also possible to be a long distance runner and have your RLS triggered that way even though you are totally healthy and drug free other wise. Bottom line is, whatever you want to call it, I believe that we all have low levels of brain, bad receptors and not much dopamine going down our spine. And we will actually be just fine with that drip until something goes wrong and something always seems to go wrong at some point. The only difference is that some people's dopamine receptors may be better than others, hence the term spectrum. It's going to take more to trigger their RLS and they may not suffer as bad. But as we age, so does every part of our bodies, including our receptors. Rots a ruck

[Polar Bear]

Have you ever known anyone (20s, 30s) with severe RLS that had absolutely nothing wrong with them. I mean nothing.

Yep... me. In my early 30s my symptoms were already legs and arms and, as far as anyone can know, I had absolutely nothing else wrong with me.

[ViewsAskew]

My grandmother, too. And, if you count severe PLMS - I've not had a peaceful night since I was 2 years old. The PLMS is off the charts for me.

You may be right - there may be a spectrum. It's all theory at this moment. The only reason I'm leaning the other way is that there are too many genes involved. It points to combinations that could create something different. I also seem to remember one of the researchers saying - at an RLS Foundation conference - that the initial research pointed to multiple causes/types, not one point of origin. Can't remember why he said it, though - it was ten years ago and my brain is much less steel trap like than it used to be . Too many sleepless nights, I'd hazard!

[figflower]

Well Polar Bear and Viewsaskew, I will continue reading up and experimenting on my own body. Right now I have been attending a lecture series on the Gut Microbiome. Naturally, I am now convinced, more than before, that the world of the very small controls the world of the very large - us. So I truly believe that our gut microbiome (even if your digestion is fine) is at the root of RLS. But no one really knows what a healthy gut microbiome should look like so pointless to just start shoveling down probiotics. Have either of you ever heard of a substance that our bodies produce called "hepcidin." When our bodies sense that we are under attack by a foreigner, be it a virus, or bacteria, or cancer, hepcidin is released from the liver and hepcidin's job is to clamp down on iron. It will stop the release of iron from our stores and will stop the absorption of iron from the GI tract, in an effort to starve out the invader. Every living organism, including bacteria and cancer, love and need iron. So hepcidin is really a beautiful, amazing defense mechanism that we got going there. Yes, it means our organs too are denied iron, but it is meant for the short run. But what if the red alert is always on because our gut microbiome is less than ideal? That means the iron stays in our stores and we don't absorb iron from foods and our brains don't get much iron either and maybe that's why we have RLS?

I've read about several people who get complete remission of symptoms when they're on antibiotics. Antibiotics tend to drastically reduce our gut microbiome. Maybe then the red alert goes off and the brain gets some iron finally. So an out of control gut microbiome can be the root cause of everyone's RLS or it could be just one more environmental trigger like obesity, RA, pregnancy, etc. But there's something to those antibiotics, I've heard one too many people get relief who weren't expecting relief.

[ViewsAskew]

If you pop over to the non-prescription area, you can read of several folks who've used specific diets related to your post. It's helped somewhat for a few. Over the years, some folks get complete remission with diet - but it's always a very limited few. I've tried multiple times to affect change through diet - so far no luck. But, you very accurately point out that we have NO idea what should be.

But, your hypothesis on iron doesn't seem right to me. Most of us have excellent hemoglobin. We're getting iron from foods. And some of us have excellent serum ferritin, too. What doesn't happen is that the iron doesn't get through the blood brain barrier to the brain where we need it. And, when we get infusions, we dump the iron quickly! The first infusion I had - the highest amount - would have left a non-WED/RLS person with a serum ferritin of 300 or higher for life. Within 7 weeks, mine was already down to 78. The research at Johns Hopkins seems to indicate that this mitigates over time - that after 2 -4 infusions, we hang on to it for at least a year or so. But, we seem to eventually dump it again. No one has a CLUE as to why our bodies do this....or how.

[figflower]

Viewsaskew did you get any type of relief the day of the infusion...at least? You do lose iron pretty quickly? What's up with that? How's your b12 levels? And what about folate levels?

[ViewsAskew]

Viewsaskew did you get any type of relief the day of the infusion...at least? You do lose iron pretty quickly? What's up with that? How's your b12 levels? And what about folate levels?

If you have a change, look up the Johns Hopkins research led by Dr Earley, IIRC - all research participants lost iron just as I did - I am not the anomaly, lol. I can remember when Dr Earley and Allen shared the results in 2005 to the RLS conference - they truly were astounded by it, too. It's quite fascinating, really. Most doctors, when they hear of it, think there must be bleeding somewhere. There isn't. It's as if our bodies do not want the iron - but where does it go???? It's quite baffling. It's why some of us have such a hard time using oral iron - I took it faithfully for months and only increased from 8 to 34. I never could get to 50. Dr Rye, one of the key researchers on genetics and RLS, has hypothesized the genetic variant gave our ancestors (hundreds of thousands of years ago) an advantage - when iron was low, they'd be restless (but more awake than others who didn't get sleep) and they'd go hunting for red meat. That would increase the iron and the restlessness would go away. In that way, the restlessness was actually something that enhanced survival; this gene was then passed on. Of course, just a hypothesis and a fun one.

And, just as baffling is that some of us can have too high iron levels and still have RLS/WED. While low serum ferritin is an indicator, it's not a requirement. What appears to be a requirement is that the iron does not get transported to the brain.

Personally, my only issues are low vitamin D from lack of sunshine and the low serum ferritin. And, with regular sunshine, the D is fine. My tests are always remarkable middle of the road.

I had about a week of decreased symptoms with the first infusion - my body dumped the iron very fast. I think it was week 3 - but it was so fast, I wasn't sure it was the iron, even though it was significant (about 40% reduction in meds). The second one afforded me about 4 weeks of 45% reduction, and another 2-3 months of 10-20 percent reduction in meds. Doctor Buchfuhrer has agreed to a third. I'm holding steady now at about 150 after the second one. Dr Earley hypothesizes that each of us may need a different baseline amount. In the JH research, they test as soon as the symptoms start coming back and then use that as the minimum for that person. What I don't know is how high they think we can go - for example, if I needed to maintain a serum ferritin of 300 (which would be in hemochromatosis territory), would that be acceptable? What if a person needed 400? Still a lot of things to learn. And, since about 20 percent of people get NO benefit from the infusions and about 60% only get partial benefit, there is still the question of how to you get the blood to the brain.