Vitamin D

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I see in a pinned post that someone was trying vitamin D drops, but I wonder how many people here suffering from RLS have tried supplementing with vitamin D.

Since there is a latitude variation of RLS with latitude (stats suggest the nearer the equator you live the less likely you are to suffer from RLS) vitamin D deficiency might well be the first thing to think of – except vitamin D is to do with calcium and bones, that's why it's called cholecalciferol, surely? However, if you put "vitamin D" and "RLS" into your Internet search engine you might find some interesting (surprising?) results.

Among the supplements I take there is 200 i.u. in a cod liver oil capsule and 400 i.u. in a one-a-day vitamin and mineral supplement. I thought 600 i.u. must surely be enough, plus the fact that I go out and about in the sun (and wind and rain) quite a lot albeit with only my head and hands (and occasionally my arms) exposed to the sun.

However, it seems some doctors are suggesting their patients take 2,000 i.u. a day or even more. (Online sources say the toxic dose for vitamin D is around 50,000 i.u. a day.)

Having discovered this online information towards the end of last week, I bought some 1,000 i.u. vitamin D supplement tablets and have been taking four a day of them.

It's a little early for me to decide if I'm getting any results from them but thought it as well to post this to see if people were aware of a possible relationship between vitamin D and RLS, and if so, to see if they might like to share any experience they have gained as a result of that knowledge.

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  • Posted

    Let me know if you come down with a cold or flu.  Two or three times now I've started taking vitamin d and come down with a virus.  I'm sure just coincidence but it's off putting for me.  My levels are around 30 usually and doc wants them up around 50.  Why?  Vitamin d is almost as tightly controlled by the body as is iron.  I'd rather give it a little bit everyday then get my stores up.  That's how we evolved.  Sun everyday.  But the body will slowly absorb the vitamin d from your skin after sun exposure because once again, like iron, it's tightly regulated.  In the body it becomes almost steroid like.  Hey, maybe that's why I come down with a virus?  Steroids tamp down our immune system.  I have a funky immune system.  After giving birth my body went bonkers.  Sed-rate went thru the roof and elevated ANA.  Anyways, it's not nice to fool mother nature.  Less is more.  Are you getting tired of me writing that cliche yet?  Anyways, I think the lack of sun coming in contact with skin on a somewhat regular basis may underlie many of our modern day ills. 

    On another note, it seems that transdermal iron patch is near FDA approval.  It's for anemia not RLS.  You wear it all night once a week.  I feel like that may some day be the first line treatment for RLS.  Anyways, it's FE3 rather than FE2.  If I understand the bio-chemistry of it, FE3 is the form our body will convert the FE2 iron into that we consume.

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  • Posted

    Hi RobertT,

    I can't wait to google RLS and vitamin D! Very interesting!

    I live in NJ and might as well give it a try, I have nothing to lose! I will keep you posted on my results!

    I'm 49 years old and have had RLS since I was a very young child. I'll never forget the dreaded rides in the car, lol, it was pure torture for me!!! Back then I was told I just had growing pains. I now know, it was RLS.

    Good luck everyone!

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    • Posted

      Did your parents also suffer from RLS? If you've had it from very young, it's quite possibly, probably even, genetic – your genes aren't transcribing something you need to make dopamine. If that's the case I suspect you will need to check out how close genetic engineering is to helping you.

      Although one source I read said vitamin D "increases expression of the tyrosine hydroxylase gene". Tyrosine hydroxylase is necessary to produce dopamine. Post-mortem studies of RLS sufferers tend to show tyrosine hydroxylase levels near normal, but that might just be idiopathic, middle-age onset RLS sufferers.

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    • Posted

      Hi

      I suggest you read up several posts on this forum and also on IBS forum regarding the Monash university FODMAP diet.

      It is a relatively easy cheap approach that can relieve 100% of the symptoms in some cases.   You will be able to ride in a car and wont need to stand up the back of the cinema.

      If you try it I hope you are one of the lucky ones for whom i\t works

      Cheers

      Graham

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  • Posted

    So, well?  How are you doing on the extra vitamin d?  I just read a sleep journal article that seemed to indicate no measurable improvement in the sleep studies of PLMD patients after a couple months of supplemental magnesium.  On the other hand they reported a benefit from vitamin d supplementation, at least with people whose vitamin D stores were low.  Well I've come full circle.  I've decided to take the iron bis-glycinate nightly regardless of whether I'm having an RLS attack.  They're finding more and more the benefit of dopamine on inflammation.  One article I just read indicates that RLS and RA have the same origins, low brain iron levels and the resultant low levels of dopamine in the central nervous system.  And that lack of dopamine leads to the inflammation associated with RA.  That lack of dopamine may also be the cause of some of the other conditions you have?  Are you seeing any improvement in your hand tremor now that you are taking iron and/or vitamin D?
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    • Posted

      The other night I got to 10:30 p.m. before taking ropinirole without a trace of RLS, took just the one ropinirole and no trace of RLS throughout the night (and next morning). The following afternoon, however, I needed the ropinirole by about 16:30.

      My mother had very bad arthritis, possibly her death can be partially attributed to it. Maybe I've inherited the problem as RLS.

      I think the hand tremor is just a tiswas with cups and saucers. It's quite steady threading a needle.

      The greatest improvement I've had since taking the iron and now the vitamin D is that I don't wake up shuddering if I take a nap during the day. Also it can take tens of minutes for the symptoms to start if I just lie down with my feet up, they may even not occur at all (as above), before it was just a couple minutes, if that. Overall the severity seems less: now, although it's not at all pleasant I can just about continue to watch a movie or whatever if the plot's not too complicated; before I couldn't continue to sit, and even if I stood up, standing, RLS could sort of easily "dead leg" me for quite a while.

      I've now come across quite a lot about iron in cells and reactive oxygen species (ROS).

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    • Posted

      Now I am interested in VitaminD and dopamine for my other disease of interest, Parkinson's.

      can you please give me a link to that article on sleep?

      thanks Graham

       

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    • Posted

      Yes I will look.  You might also want to investigate magnesium l. threonate.  It is able to cross the BBB whereas some other forms don't.  Magnesium is a chelator.  So,theoretically, it might be able to chelate the excess iron in certain parts of your brain?  I know chelation therapy is something they use for Parkinson's.  At the same time, there are people with just RLS that swear by this form of magneisum.  Win, win?
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    • Posted

      Here ya go Graham:

      Sourced from Classic Sleep Care – RLS and PLMD: Part III

      Vitamin and mineral deficiencies have been implicated in RLS or PLMD with the most solid research conducted on the element of iron. Very recent research is showing a connection between low Vitamin D, and there has always been some concern about the impact of low magnesium levels.

      Iron storage as measured by a lab variable known as serum ferritin is the standard technique for assessing whether or not low iron is likely to affect RLS/PLMD. Individuals with values less than 50 ng/ml often are at risk for both symptoms. One of the more interesting ways in which this relationship was discovered occurred when acute leg movement problems developed in those who had rapid blood loss, e.g. someone in a car accident. Following blood transfusions, the limb movement symptoms resolved. In one recent study, low ferritin patients were randomly assigned to iron treatment or a dopamine drug, Mirapex as described in Part I, and their results were of equal benefit, so clearly iron is a very big deal when considering ways to treat RLS/PLMD.(1)

      Iron deficiency in general is associated with many problems in brain development in children, and the dopamine pathways in the brain seem to be especially susceptible to low iron levels . Remarkably, the lower the serum ferritin value, the less effective are the medications prescribed for RLS/PLMD. Also, just because the ferritin is low does not mean one also suffers from overall anemia or low blood counts. Most patients seeking treatment at sleep centers who show low ferritin do not show anemia.

      Unfortunately, iron supplementation is not a straightforward matter. First, you absolutely must clarify that the serum ferritin level is below 50 ng/ml. Do not just start iron pills because you want to experiment. Next, if ferritin is low, discuss the use of iron supplements with your primary physician. Most doctors do not know about this connection, so they may be skeptical about recommending iron supplements if you suffer from other medical conditions. For example, patients who suffer from thickened blood volumes with conditions like polycythemia or those with iron storage conditions such as hemochromatosis can almost never use iron supplements. So, the biggest reason to work with your doctor is to insure your safety.

      When starting iron supplements, there are two common and distressing side-effects: indigestion or constipation or both. Many people stop iron supplements within the first week because of these gastric symptoms, so you may need to explore different options to reduce or prevent these symptoms. There are liquid iron supplements that are more gentle on the stomach. You can find liquid iron in drugstores or vitamin stores, but they are also more expensive. Liquid iron is also more dangerous, so it is virtually axiomatic to never use liquid iron if you have children living in your home or kids who frequent your home. Ingestion of excess iron in a child may prove fatal.

      Prescription iron pills are needed for someone who has difficulty absorbing iron. In some cases, you may need to see a hematologist to test why your ferritin level is low or why iron supplements do not raise the levels. In rare cases, a hematologist may put you on a program of iron infusions given intravenously, and this therapy may prove highly successful for some patients. Then again, it is important to know that some low levels of iron actually indicate covert blood loss, and colon cancer has been detected in patients who originally presented with RLS, whose ferritin level was low, which eventually led to a colonoscopy and the discovery of the cancer. (2)

      Magnesium is another mineral that shows a small amount of evidence in the treatment of leg jerks. (3) Many alternative medicine publications or practitioners exclaim the value of magnesium in solving RLS or PLMD conditions, and yet actual confirmatory studies are missing from the scientific literature. In fact, when we have worked with patients making positive claims about their magnesium use, virtually all these individuals showed persistent leg movements when they were re-tested in the sleep lab. This finding does not preclude the possibility that magnesium was helpful to them or might work for you, but we would like to see more research in this area, albeit one other study with a very interesting result demonstrated improved RLS in a pregnant woman who received intravenous magnesium. (4)

      Turning to vitamins, folate and B12 deficiencies have been implicated in RLS/PLMD symptoms, but we rarely see such cases in a sleep clinic environment. One vitamin receiving recent attention is Vitamin D, where reports of deficiency are proving much more common than previously thought. Several studies have been published in just the past few years on Vitamin D and limb movement symptoms.

      One study described the beneficial connection of Vitamin D with increased levels of dopamine in the brain, and in their comparison of two groups, the sample with RLS had both lower Vitamin D levels and worse sleep quality than a group with normal Vitamin D levels. (5) In another study, a small sample with RLS and low Vitamin D levels were treated with high dose or intramuscular injections of Vitamin D, and raising levels into the normal range clearly improved RLS symptoms. (6) Last, two additional studies showed the same effects of low Vitamin D levels in RLS patients, and again noted the likely connection between Vitamin D function and preserving dopamine, the neurotransmitter described in Parts I and II, which has very close connections to the problem of RLS/PLMD. (7,8)

      Summing up, all these vitamin and mineral interactions are worth exploring if you suffer RLS/PLMD symptoms. By addressing pertinent deficiencies, you may no longer need medications to treat RLS/PLMD, or your medications may prove more effective in resolving limb movement symptoms.

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    • Posted

      Absolutely, drug free: no ropinirole, no RLS free; zopiclone for emergency use only, otherwise sleeping soundly.

      Again I got well past 11 p.m. without any RLS sysmptoms last night, took one 2 mg ropinirole tablet then, so no RLS symptoms since the night before last.

      For weeks now the worst it has got is my needing to either keep moving my leg a little or to have my right ankle resting on my left thigh while I dig about in my right calf muscle for sensitive points with my thumb. Standing up and walking about relieves it almost instantly. I may also have a very slight upper torso shudder. That's probably about 24 on the International Restless Legs Syndrome Study Group rating scale. (The drugs enable me to sleep, so I just chose moderate for the sleep related questions.)

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    • Posted

      Wow, zoplicone for emergency use only.  And you're taking no controlled substances.  Ah, what's a little ropinirole between friends.  One day you'll forget it's even in your medicine cabinet.  Are we ready to take our show on the road and start knocking on the doors of RLS researchers to tell them the good news?  Probably not.  My brother loves to tell this joke about a guy who had terrible migraine headaches for years and his doctors told him that they have found it's usually attributable to testicular problems and that by removing them the headaches will be gone.  Finally he can't stand it anymore and he goes through with the operation.  Lo and behold his headaches disappear immediately.  He's so excited he decides to treat himself to a new hand-made suit.  He goes to a little old Italian tailor to be fitted.  Without even measuring the tailor looks at his neck and says you wear a size 17, right?  The guy says yes, how did you know.  The tailor says I've been doing this for forty years, I know my stuff.  Then he says you're a 48 chest.  They guy tells the tailor he is absolutely amazing.  Finally the tailor says you're a 34 inseam right?  The guy says no, I'm a 33.  The tailor says listen you're a 34, if you wear a 33 it will squeeze your balls and you'll get terrible headaches. Da duh da.  Bottom line Robert, people don't want to hear that they've been suffering from terrible restless legs for years, are addicted to pain killer and opiates, have developed terrible side effects from them and all they ever needed to do was take a little iron at night before bed.
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