We are gettimg very good here about digging into the minutae of cause and effect when it comes to figuring out an individual's case of RLS. I can do this. I can't do that. I can take this, but I can't take that.
This is very helpful in managing the day to day rinse and repeat process that provides relief.
What i have been struggling with lately is the big picture. Are we really any closer to understanding the why and how of RLS? We have some theories when it comes to iron and dopamine. But the research is still inconclusive.
After reading through the years of posts it feels like every different receptor or transmitter the brain has to offer has at some point been the culprit or savior of someones RLS journey.
I would gladly donate my brain to science if it would help. We are in desperate need of new information for new treatments. It seems so far away. (Sigh)
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ziggypiggy
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Sue, I asked Dr. B about donating my brain for the purposes of RLS research. He indicated that there was information on the RLS foundation website. I did find that link. However, it brought me to a site that did not specifically say that the donation would be used exclusively for RLS research. The NeuroBioBank studies brain tissue for Parkinson’s, Huntingtons and other neurological diseases. If you have any other information about brain donation f specifically for RLS research , I would be very grateful.
You are right that it is not exclusive to RLS but to quote from an article in their magazine about brain donation: "Scientists really only need small amounts from specific areas of the brain, so a single brain can be used in dozens of studies." You are in the US so this doesn't apply, but brains cannot be shipped from say the UK.
I believe that what we call 'RLS' is in fact either a cluster of syndromes with very similar symptoms but numerous different causes/triggers, or just still rather poorly understood. The brain iron group *may* be the largest single strand - and in fact one of the easier ones to treat - but is still only one strand.
Could very well be the case. So we need a unified RLS String Theory like they have in quantum physics.😂
We'll test out string cheese first and go from there.
Heck. As far as we know there may have been an evolutionary advantage in having RLS. Our ancestors rarely fell asleep on night watch and enjoyed a good walk of a camps perimeter.
_ I am RLS sufferer since 7 and UARS (kind of sleep disorder breathing; controlled by a bilevel CPAP), since 17. Only had trouble sleeping after 17, with SDB (today I know);
_ still struglling with cause and effects these days, when I daily explore my wave charts from the CPAP. Strong suggestion that should I don't wake up due to SDB (essentially during REM atony interruption), I would no have trouble with RLS at all !
_just to reflections:
MD very experienced Barry Krakow, in his book sound sleep, once wrote: " the link between SDB and led jerks: the great controversy about RLS andd PLMD is their relationship to SDB. Many pacients with RLS and PLMD also suffer from SDB, especially UARS. In sleep studies in some of these pacients, recent reseaarch shows that the movement occurred at the end of a UARS event (just exact my case...). Remarkbly, when these patients received PAP therapy, their leg jerks decreased as air pressure normalized breathing (exact my case....)...... These SDB findings indicate that some people's conditions mimic but are not true leg movements disorders. This conundrum requires patients to sort out at a sleep center. If we see PLMD in a SDB patient, we are reluctant to treat the legs until we have treated the breathing".
I have gotten almost complete relief from RLS by following a low oxalate diet. I have been reading some of the scientific studies and trying to come up with a possible explanation for what is happening in my body when I experience an episode of RLS. However, before I share my ideas I want to make clear that my version of a low oxalate diet includes avoiding glycine supplements, gelatin and gelatinous soups and stews because these foods stimulate my liver to produce oxalic acid endogenously.
Because researchers have established that low levels of iron in the brain and cerebro-spinal fluid may exist in all RLS sufferers, I assume that condition pertains to me. And I assume I have a low ferritin level. However, the fact remains that, without addressing those particular bio-markers in any significant way, I have achieved almost complete relief of symptoms. And, when I do “slip up” and trigger an RLS episode, the discomforts arrive on the day following the dietary mistake and last less than 24 hours.
My theory is that my body’s chronic low iron level makes it critical that my body’s systems do an impeccable job of distributing iron to all the places where it is needed every day. And the oxalate/oxalic acid interferes with that daily distribution.
Iron is typically bound to transferrin (the body’s distribution vehicle) with carbonate. However, oxalate can take the place of carbonate as the binding agent. Scientists have found that when oxalate takes the place of carbonate the bound iron is “locked up” so that it doesn’t release from the transferrin and, I assume, distribution is not accomplished.
Because our bodies have a greater iron binding capacity than we use on any given day, mine is able to bring additional resources into service and correct the situation within 24 hours, assuming I eat correctly on that second day. It might even make sense to say that the unpleasant sensations in my legs are a signal from my body to get me to move around and increase circulation in order to expedite the restoration of normal iron distribution.
I think it is critically important that scientists look more closely at the mechanisms which lead to the liver producing inappropriate amounts of oxalic acid. Some people are attempting to raise their ferritin level by taking ferrous bisglycinate and vitamin C. My experience is that glycine stimulates production of oxalic acid. And vitamin C supplements are widely recognized as stimulating its production also. I think we may also find that the augmentation which some people experience while taking Pramipexole and similar drugs is due to stress on the liver and a resulting endogenous production of oxalic acid.
My current line of inquiry is trying to find the root cause of my inability to tolerate normal amounts of dietary oxalate. I am fairly certain it results from overexposure to fluoride in our water, pesticides, cookware and can liners. I believe the eight common refined, bleached and deodorized cooking oils made from seeds make me especially vulnerable to the toxic effects of fluoride.
What I call RLS is the inability to be comfortable while lying or sitting still. It is not PLM. I wish you all the best. Jim Hejl
Your post is very interesting. I only have RLS at night which is severe without medication. I find that taking iron bisglycinate and vitamin C at bedtime definitely worsens my RLS for the night. It is very apparent. Until I read your post, I had never seen an account of anyone else experiencing this same reaction. I moved my dose to first thing in the morning to avoid this problem. Your post has me wondering if I should avoid iron supplementation and try your low oxalate approach. Do you do anything to try and raise your ferritin levels?
No, I don't worry about my ferritin level. I can see how raising it could help some people find relief. However, I have gotten complete relief by following my ten step program which is presented below. I am beginning to believe that fluoride exposure is the root cause of our problematic iron deficiency. I have read that it damages the gut's ability to absorb iron and it raises hepcidin expression which retards iron absorption. I think the fluoride toxicity is made worse by exposure to RBD cooking oils made from seeds, especially those that are reused in fast food restaurants for up to two weeks. I have avoided fluoride and those oils for more than a year and I think I may be recovering my ability to tolerate normal amounts of oxalate. I will be doing a formal challenge of the oxalates in the near future.
MY TEN STEPS TO ACHIEVE COMPLETE RELIEF FROM RLS
(AND A NEW LEVEL OF GOOD HEALTH)
1) Eat a low oxalate diet.
2) Take magnesium supplements but not magnesium glycinate. Excess glycine seems to stimulate the liver to produce oxalic acid inappropriately.
3) Avoid gelatin and gelatinous soups and stews because of their high glycine. Be mindful of animal protein that may be especially high in glycine. Collagen supplements probably should be avoided.
4) Eat organic vegetables and fruits. Non-organic are typically sprayed with oxalic acid solution post harvest to preserve freshness and nutrients.
6) Avoid refined, bleached and deodorized cooking oils made from seeds. I believe these oils have made me especially susceptible to fluoride poisoning. (I mostly use unrefined, virgin coconut oil and cold pressed olive oil. I also enjoy butter and ghee.)
7) Limit wheat products to those made with unenriched, unbleached, unbromated flour. Eat unenriched, organic pasta. When using commercial yeast instead of the natural leavening of sourdough starter, allow the dough to rise unrefrigerated for 12 to 18 hours, or more. (I typically buy King Arthur flour.)
8) AVOID CONSUMING FLUORIDE! Drink properly filtered or purified water. Avoid non-stick cookware that isn’t PTFE and PFOA free. Avoid canned foods unless the can liners are free of fluorocarbons. Don’t drink bottled or canned beverages made with fluoridated water. Wine, especially from California, is typically high in fluoride. Many pesticides are high in fluoride, so eat organic. (If you drink water purified by reverse osmosis you probably should add back appropriate minerals.)
9) You may need to take a break from goitrogenic foods. RLS and oxalate intolerance may be evidence of unusual susceptibility to fluoride and you may, like me, have a significantly impaired thyroid. In addition to damaging the gut lining, impairing iron absorption, causing magnesium deficiency and suppressing melatonin production, fluoride has traditionally been used as a medicine to suppress thyroid function. I experimented with avoiding all goitrogenic foods and my thyroid function greatly improved. After avoiding fluoride for more than a year I am slowly reintroducing cruciferous vegetables and the many wonderful fruits of the rosacea family. (I had been wary of eating fruit because of wide swings in my blood sugar. Eventually I realized that, for me, it was the goitrogens of certain fruits, rather than the fructose, which was causing my energy swings.)
10) Whenever possible avoid medicines that stress the liver’s detoxification function. I suspect the RLS augmentation from Pramipexole and similar drugs is due to liver impairment. Oxalic acid is a normal byproduct of liver function and it must be properly disposed of. When liver function is impaired, overproduction of oxalic acid may occur, especially in the presence of high glycine.
Neurology is a bit of a nightmare because it’s not only infinitely complex, but also often paradoxical and contradictory. There are no simple causes and effects and things go around in weird circles and correlate in odd ways. I’m sort of fascinated by this as it proves just how complex life is, and that we can’t take anything for granted or believe we understand anything fundamental with the limited intellects that we have. But unfortunately, research is also therefore slow and laborious. Then there’s the fact that we’re not all the same and some of us have other weird connecting disorders or just a deeper RLS than others. It’s definitely an existential dilemma and I think a lot about the philosophical implications of it all and what it really says about my being in the greater sense. So you’re right about that.
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