I don't know if everyone here know this, as I never but one of the biggest things to cause RLS is anemia, nobody checked me for this and I have had RLS since being very ill with Sepsis last December, only recently it has come out how low my blood levels was and I had a transfusion and am now on iron tablets.. and the RLS had got better, I saw a reply to someone on here re dopamine being affected by low iron levels and looked into it and came up with this article hopkinsmedicine.org/neurolo...
I am so surprised to see how having low iron levels stop dopamine as not one doctor has looked into this with me and I have been put on Lyrica.. but now not sure if I need that or not? I also cut my amytryptiline down and am now in pain from that as I took them for pain so tonight am going to increase the levels again to 50mg which is what I should be taking.. so bottom line if you have RLS get your blood levels checked :
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Pat9
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Yes, having iron levels checked is first port of call for us RLS ers. I suffered for years with what I thought was insomnia and had very heavy periods. Was diagnosed with depression, menopause and finally M.E. My exhaustion was indescribable. When my anaemia was discovered I was prescribed x3 iron pills a day with vit C to help the absorption and conteract constipation. I began to sleep a little..... However, later, when reading a book about sleep, I discovered the existence of Dopamine and indeed RLS ! I slept for my first whole night thanks to Ropinorole ! Of course since then have changed drugs, and do not sleep all night but at least now I know where I am and what is wrong with me and how to deal with it.
Amitriptyline may make your RLS worse. Don't know about the Lyrica. For pain I like good old ibuprofen with zinc carnosine to prevent ulcers and leaky gut. Take the best form of iron you can afford, at night on an empty stomach. My favorite form is iron bi-glysinate. One pill stops my RLS dead in its tracks for at least six hours. Like insulin, our bodies and brains need a little iron everyday to stop the RLS by shoring up the dopamine receptors. A night without iron is a night without sleep.
tcho, you are one of very few people who can say that an iron tab stops your RLS dead in it's tracks. I agree with you on the amitriptyline. IF there was ever an evil drug for RLS, that is the one, and SSRI antidepressants. But we all have to do what we have to do. people just need to be aware that it may not be as simple as an iron pill. We all are different, and iron is not everyone's issue.
Iron is everyone's issue who has RLS. Every single autopsied brain of a person claiming to have had RLS during their lifetime showed a severe shortage of iron in the substantia nigra whereas none of the controls did.
Yep, me, Avosyl and Pat9 get relief from iron and my "body" iron levels are high. All of our brains need iron. Just no way of keeping it there for more than about six hours. But that's enough for a good night's sleep.
Sounds like you've done your research....saves us all time {Thank You}. I ordered Iron-free multiviamins not long ago, now I'm pricing, at Puritans, time release multi's with iron. I see a schedule of one kind one day, and t'other the next, giving my body the chance to set its own level. I eat unprocessed foods, and cook from scratch, buying my foods from The Bulk Department of my store. It's healthier, tastier, and less expensive. I've thought that I was probably getting enough iron. The Linus Pauling Institute at Oregon State University has accurate micronutrient information. I recommend it, lpi.oregonstate.edu/infocen...
You're amazing. A man that cooks from scratch with unprocessed foods? Last of the cavemen I guess.
Iron is a jealous lover. She doesn't like to be taken with food or other supplements. And she's out of your brain before the dawn's early light. I've never found one that works for the RLS other than iron bisglycinate on an empty stomach before bed. My best guess is that it works because this form (on an empty stomach) enters your bloodstream because it is already broken down. The other forms of iron have to be broken down by our tired old GI tracts and if our GI tracts fail at braking it down it just gets pushed along to the large intestine where it constipates us. From the bloodstream our brains can pick it up. Once picked up the iron goes to work on the dopamine receptors, no different than the dopamine agonists. And like the agonists, once the iron leaves our bloodstream we're back to square one, no matter how high our iron stores get...our brains just can't call it up from there.
Are you still on the Zoloft? I don't know if good nutrition is enough to counteract its affect on your RLS, especially at night, when everyone's available iron drops. Time to read about micronutrients
Your article...that's it. I'm not just saying that to make you feel good. LPI gets it. They understand iron homeostasis and storage. And I'm such an idiot. I never realized that there is a difference between ferritin and iron. Ferritin controls iron storage and our brains are low on ferritin as well as iron based on autopsy reports. I just ordered Ferritin. Only one company makes it...Cardiovascular Health. Comes from bovine spleen. Delish, no? As soon as it comes in I'm taking it in early evening. Then later that night I'm taking a Benedryl. If I don't get RLS I believe it's because the Ferritin allowed my brain to hold on to just enough iron to stop me from getting RLS from the Benedryl. If I do get RLS then I guess I have to take the iron pill.
I guess there's really not much difference either way but I always prefer supplementing with the lowest common denominator. Humor me here a minute. A lack of iron should never cause a ferritin deficiency but a ferritin deficiency can cause an iron deficiency, right? So I would rather supplement with ferritin which then allows my brain to hold on to iron or maybe, god forbid, allow my brain to actually call some iron up from my healthy stores of it. Still, clearly, like iron, my body's level of ferritin is normal, but not my brain's? So it's not a big improvement over taking iron but I somehow like the idea of it better. Do you got all that?
There's also the very real possibility that the ferritin will make the RLS worse. Ehh, everything in life's a crap shoot no matter what. "Go heavy or go home"
Great link. Thanks!
Wait a second, your RLS didn't begin until you had sepsis last December??? Talk about a piece of the RLS puzzle!!! I would think that you have a good chance of recovering from your RLS? I read about an instance of a man in Costa Rica with a severe intestinal viral infection that resulted in RLS. He drank pints of coconut water everyday and recovered. Why would sepsis and a viral infection trigger RLS? I have my theories. I think that in the face of a microbial attack the body withholds the release of iron from it's stores and absorption of iron from the intestinal tract in an effort to starve out the critters. Every living organism loves and needs iron. So our bodies have an amazing defense system there. But in us susceptible few, that withholding of iron results in RLS.
Try taking one tablet of any bio-available iron at night on an empty stomach. I love iron bi-glysinate but maybe iron gluconate would be good too. The kind you buy in the drug store is worthless to me. Just try it once, then let us know how it goes. Good luck.
Thanks Tcho.. I lost a lot of blood in the Sepsis and after leaving hospital nobody did check up on my blood and it was the first blood test which showed a very low res blood cell, so had a transfusion a few weeks back and am not on ferrous sulphate tablets.. and the RLS has now gone.. Sepsis is a killer disease that is for sure thanks again
Wait, wait, you are or are "not" on ferrous sulphate? If so, how many times a day and when do you take them? WOW, your RLS is gone. And gone forever it shall be.
Thanks Tcho.. I lost a lot of blood in the Sepsis and after leaving hospital nobody did check up on my blood and it was the first blood test which showed a very low res blood cell, so had a transfusion a few weeks back and am not on ferrous sulphate tablets.. and the RLS has now gone.. Sepsis is a killer disease that is for sure thanks again
It is actually the ferritin level (how your body stores iron) that is tested for RLS. If none of your doctors did that test, they do not know much about RLS, since that is the very first thing that should be done to at least rule it out. A ferritin level is different than a regular iron serum test.
And the amitriptyline is probably not doing you any favors, although you may be the exception out of the 99.9% of us who cannot take it because it worsens RLS so badly.
Hmmm, I had Sepsis in 2007, my legs were already dancing and kicking. RLS began for me after I was hit by a bus 9/12/04. I'd exercised 3-4 times weekly at a nearby community cardio and weight room. I walked approx 20 miles a week, on top of that. I attributed RLS to my leg muscles exercising themselves. RLS has become violent and severe as I approach 70. Who knows what 80 has in store for me
just an update on this.. got my blood results back just before Christmas and my HG levels are now 105 so since on iron tablets they have shot up from the 85 I was after my transfusion and 75 before anyone bothered with me.. my doctor is pleased with the progress and wants me to have another test in a months time.. but I now have absolutely no signs on RLS.. even though still taking 50mg of amytryptiline for pain.. each day so I know how anemia for me caused the RLS.. and I think anyone with it should be tested for this as this was one test nobody thought of with me.. happy New Year all xx
On Christmas Day I bought two, got four extra bottles of Super Chelated Multi-Minerals, each caplet has 250 mg Mg Citrate and 10 mg Iron I take two at night. My legs are calmer. I take two 0.5 Mg Pramipexole too. I will use Cannabis butter or tincture once the Recreational Pot Dispensaries open in July in Oregon. I'm aware of the negatives regarding Bhoo, But my left leg bashing the hell out of itself every night out weighs any negativity. I vote for happiness + a little goofiness. My regards to the UK professor that says it's a bad thing to do. Wrapping my knee in Xeroform Petrolatum Gauze Dressing 5" x 9" every morning is negative enough. My Knee cap is so badly bruised. I have trouble bending the leg. Perhaps Puritans has an UK outlet. Their prices keep me healthy. In the HEWSA They have Free Shipping, a perk from 1-10 Gbps Networking
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