Restless Legs Syndrome (RLS) Discussion Board

The only thing that has helped my severe rls is really hot baths (often 3 a night) altho they are getting less and less effective. I am puzzled as to why water would even help a brain iron deficiency. Thoughts?

Hot baths are probably the most used non-med treatment for RLS. At an RLS Foundation patient symposium two years ago, this question was asked of the RLS experts who were there. They were all familiar with hot baths, but said that there had not been any studies looking at them (for obvious reasons, i.e. no one can make any money off of understanding why). Their best bet was that it has to do with something like counter-stimulation. The heat (or cold for those that use very cold water) stimulates the nerves and gives them something to do other than try to get us to move. I am not sure that I can personally support that theory, but I also admit that I don't have a better suggestion. There have been some studies that looked at vein flow in the veins of those of us with RLS and there are some differences compared to control subjects, so maybe thermal stimulation has something to do with increasing blood flow in the veins of the legs. Either way, there have been many nights when I have been grateful when a hot bath was the only thing that allowed me to get any sleep at all.

There are massive divides amongst the RLS community on what RLS is, with many of those differences based on how much faith you have in researchers and medical professionals.

So the question you are asking is one of many that don’t fit with commonly held views by alleged experts. Research on RLS is absolutely dreadful and full of tunnel vision, so instead of going on a rant I will just add that it is up to the individual to explore as many ideas as possible and apply those that fit best.

It all went wrong when the first solution was found to be dopamine agonists. If someone in a different field found success before this, with let’s say a warm bath, the research would have gone in a different direction and the perspective on RLS may be different and more progressed than it is now.

Thank you both. I have no science background but am trying to understand it as best i can. It also makes no sense that food would trigger a brain iron deficiency issue but for many of us it clearly does. Really baffling.

While there is no doubt that RLS patients have BID (Brain Iron Deficiency), it is not the whole story. The cause of BID is generally thought to be due to genetic and epigenetic factors, except for the few people with low iron in their diet (a minority of people with RLS) but this hasn't been proven. The biochemical paths that lead from low brain iron to legs jumping have not been completely worked out, and the mechanism that causes iron to traverse the BBB (Blood Brain Barrier) has similarly not been worked out. Also RLS has 2 major symptoms (that many patients think are directly related, but probably aren't): 1. urge to move (leg jumping) and 2. Insomnia (can't sleep). While IV iron treatments help many with RLS, still about 1/2 of RLS patients get no relief from IV Iron. It is not known why this is.
For me, IV Iron works wonderfully on my urge to move, but doesn't completely get rid of the insomnia problem. The urge to move is generally thought to be mediated via dopaminergic pathways, but the insomnia is mediated via the glutamatergic pathways. How this is related to iron is not known. We have some treatments for RLS that work fairly well, but aren't the whole answer. More research needs to be done.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

Hi Holland - As always, thank you to everyone on this site who takes the time to answer questions. I have actually had 3 Injectifer infusions in 2019, one 750 ml infusion that helped somewhat over a period of eight weeks, after which there was really no effect at all. Wanting to use the lowest dose possible, I then had two 500 ml infusions (spaced four months apart) which were pretty much useless. My concern after the first one was my ferritin level shot up to 1055 after the infusion (from 28) although it dropped pretty quickly over the next eight weeks. I am concerned that there is little known about the potential harmful effects of dumping this much iron into the brain. I have read that high iron levels in the brain are found in patients with Alzheimers and Parkinsons. Again, I have no medical background so it's really hard for me to evaluate the potential dangers - if they're even known. Because of covid, I haven't had any more infusions but am scheduled for one on Monday (750 ml Injectafer) as my RLS are so terrible I'm willing to try anything except dopamine agonists and opioids. If it even gives me some relief, I'll be happy. BTW, my ferritin levels this time were 110 - highest ever. No explanation for this as I have never been able to get my ferritin levels over 28 no matter how much oral iron I attempted to consume (couldn't really tolerate the stuff). BTW, the current RLS Newsletter says we should be looking at hemoglobin levels, not ferritin, as a better predictor of which patients will respond best to iron "intervention". Ack.

The recommended dose of injectafer is 1500 mg, given as two separate 750mg infusions one week apart. But blood iron is not the same as brain iron. The brain metabolism is separated from the blood by the blood-brain barrier, so that a high ferritin in the blood doesn't necessarily translate to high iron in the brain. Depending on when the ferritin was measured after an injectafer treatment, the ferritin could be very high, it is probably in the thousands if checked just a couple of days after an IV infusion. The fact that your ferritin was fairly low, in the twenties when you first started treatment means that your whole body was likely low on iron, and a lot of the intravenous iron that you received went into resupplying other parts of the body rather than helping the brain. There's a good chance that's why your improvement has been short-lived.

I am so glad I decided to post on this site - getting lots of clarity. Or at least possible explanations to what have thus far been Unexplained Mysteries of the RLS World. My usual medical facility doesn't offer Injectafer infusions so I am going to a different facility for them where I really have no relationship and find communication to be profoundly difficult. I tend to be extremely cautious medically and feel like I need to be my own advocate. I was prepared to conclude after Monday's 750 infusion that if it doesn't help that I am among the 50% for whom it doesn't work. But I think now I would give the two 750 ml infusions a try if the current dose doesn't work (they are willing to let me make the decision as to how high a dose I want).

philoff wrote: I am concerned that there is little known about the potential harmful effects of dumping this much iron into the brain. I have read that high iron levels in the brain are found in patients with Alzheimers and Parkinsons

That much iron was dumped into your veins, not your brain. I doubt much of it made its way into your brain, since the central problem in WED/RLS seems to be precisely that - impaired movement of iron from the blood into the brain. Dumping a load of iron into the blood helps symptoms for a lot of us, but you're right in that long-term effects have not been studied. They are more likely to manifest in the liver than the brain, though.

Foods might be triggers in round-about ways. Maybe a food like gluten or an ingested substance like aspartame causes irritation of the gut lining, perhaps because it feeds pathogenic microbes that have taken up residence in our gut; then maybe the irritated intestine can't absorb nutrients, leaving us deficient in something needed to make an enzyme or other chemical that is important in movement control - thereby leaving us at the mercy of WED/RLS symptoms brought on by BID that would otherwise perhaps not have been noticeable. Or perhaps the irritated intestine is actually leaky, and allows toxins that should be passing through to enter our bodies and either directly trigger symptoms or consume resources (nutrients) as the body tries to get rid of them, leaving us deficient as above and at the mercy of symptoms. I'm not saying any of this is true, I'm just trying to give a sense of the complex inter-relationships that might link dietary intake, BID, and WED/RLS symptoms. Similar things might link muscle hypoxia in the legs with BID and WED/RLS symptoms; or heat or cold on the legs with WED/RLS, etc.

Just saw this. I use hot moist towels, alternating on legs for total of five minutes. Immediate relief. But I only use the towels after I have taken Kratom or hydrocodone in instances where the effects of those meds do not kick in immediately. Wonderful success, but occasionally the compresses don't work and the meds are ineffective as well. I usually end up taking teaspoon of Kratom every half hour until the legs are calm. The other night it was two hours of agony. But most nights the meds combined with compresses do the trick. I do not understand why these periods where nothing is working. I can only chalk it up to augmentation. Anyway, before I stray too far off point most of the time the hot compresses work quite well.

Ken

Thank you for this Ken, on how the hot compresses help you. Anything that works for an rls sufferer is of interest to another sufferer.

A hot bath has been my silver bullet for the last 10 years when RLS and PLM got painful. Works 9 out of 10 times, at least for a while. Usually I use it for bad early onset and occasionally before bed. I've always thought the relief is caused by over stimulating brain. I get in 112 F (44.4 C) water which seems crazy but it takes at least 110 F (43.3 C). My doctor was not concerned with the temperature and I use a thermometer to not scald myself. My hot tub only gets to 105 F (40.5 C) so it takes the jets impinging on the nerves in the front of my thighs to get much relief. I do the hot tub at bedtime almost every night, then jump in the pool. That's my 2 cents.

Hot bath is my go-to when symptoms are there but not bad. Like, when I've taken my meds and they haven't gone away completely, but they're not raging.

ken wrote:I do not understand why these periods where nothing is working. I can only chalk it up to augmentation.

It's probably best not to try to figure everything out. It seems we all have unexplained episodes of bad symptoms (and of better symptoms), and although it's good to look for connections, it's not good to keep looking if nothing obvious jumps out. I suspect there are just random worsenings, or not totally random but effectively, so we would do better to try to focus on something happy instead of on why our symptoms got worse last night, or whenever.

It's not augmentation, Ken, cuz you're not on a DA anymore. Nothing else causes augmentation. Or, nothing is known to. A couple of anecdotes that Tramadol does, and that's it. It has to do with the dopamine receptors getting messed up, which opioids and probably kratom don't do. Unless my brain is shot and I forget and you actually are on a DA?

If it's not augmentation, and things are steadily getting worse, then it could be natural worsening or it could be that your body has grown accustomed to one of your medications - this is known as tolerance. I could guess that maybe you've become tolerant to the kratom?

I assumed tolerance to Kratom anyway. That is why I use two different strains and alternate them out every few days. Also use the hydrocodone once a day.