Rls is so hard for me, sometimes I just want relieve

It is very strange. I mean I guess I have heavy periods. I have always been a fit person. I have never had anything wrong with my ever so I don't know where this is coming from .

Dear Karl

That's a very depressing thought.   I agree that there is a lot of professionals who don't seem to help but read this forum and there are lots of posts by people who have been taking some drug for years and they are very happy with it.   Someone just yesterday I think said they had taken Magnesium and their RLS didn't return.  Most people who have found the magic cure that suits their particular type of RLS are not going to write to a forum and saqy ""I dont have a problem!!"  so there are probably lots of people out there who are "better"     Better just means they6 are not experiencing any symptoms any more.    THat's good enough for me if I get there and probably lots of others will be happy to reach that point.

For me the magic has been the irritable bowel syndrome diet called the FODMAP diet.   I am so much better while complying with this diet that it feels like a cure.   Now you can be paeeimistic and say yeah but it only helps 74% of ibs patients so it wont be 100% for RLS people.   Sure but I''ll be happy if I'm in the 74%   and it just might be that it gives an outstanding improvement to the other 26%.   Maybe RLS is easier to fix than ibs who knows until we all try it.

Dont expect the drug companies to offer you a FODMAP diet.   They only want to find drugs that are patentable and profitable.   The FODMAP diet is free!   Of course the drug companies might make a breakthrough at any time and produce a complete cure.   But while they work on it give some of these other things a chance.

So don't give up and keep trying things that other people have had success with.

Lack of sleep produces depression and very bad feelings of hopelessness so RLS is self perpetuating because you can't bear the thought of trying something new.

 

Hello Tom Thank you for the reply. I've actually been to my doctor a lot. He initially put my on ropinrole , this worked really well however after 2 months it come back. So my doctor put me on pramproxiale the drug your on. However , this made me sleepy and sad etc. With regard to iron . I have had numerous blood test and my GP found out I had low ferretin , so I have been on ferrous ferretin210 grams 3 times a day. So yeah this is my my spirits are a wee bit low on the whole matter just because it feels like I've been through a lot of treatment methods.

Hi again.  I'm going to guess that you have a problem with iron absorption and that is what is triggering your RLS, based on what your blood tests show.  I think you are saying that you are taking a form of iron called ferrous fumerate?  That form has very low bio-availability.  If you're lucky, you're absorbing about 18% of it.  Doctors usually don't care what type of iron you take and as a courtesy will prescribe the most reasonable one.  So like I said before, I would try iron-bisglycinate, also known as "Easy Iron."  Costs about $10 a bottle on Amazon.  It has to be taken on an empty stomach and I would start out with one at night before bed.  If you're like me, it will give relief within an hour.  You'll be asleep before you even feel your body relax.  Once or twice I was awake as my legs started to relax and it was an incredible sensation.  But for some reason it also induces sleep so I am asleep before I get to feel my body completely relax. 

Unfortunately it only works for the one night, and must be repeated when I have an attack.  Now that I know most of my triggers, including over-eating at night or consuming splenda, I can avoid an attack.  Anyways, because of taking iron for RLS my stores are way up there (100 +), and my red blood count is that of a man.  Yet those iron stores do me no good.  It's like my brain just can't get any iron out those robust stores, but only when it is circulating in my bloodstream after taking an iron capsule.

Good luck.

 

Dera Udon

Sounds terrific

Does anyone know of any downside to iron bisglinate?

Is there any reason not to take it every night regardless of any triggers?

I am taking about iron fumerate equivalent to about 200 mg of elemental iron per day but generally in the morning.

The Mg didn't work for me so I'll try the iron.

Of course I am staying on the low FODMAP diet as well.

I have no idea what the mechanism is for getting iron into the brain where it can do some good but we are battling something called the Blood Brain Barrier that is intenedeed to protect the braion from anything undesirable in the blood.    A lot of research for Parkinsons is directed at gettin medicine avross this barrier.

Im off to the chemist for a dose of ferroue bisglycinate!

Can u order from Amazon, not chemist?  I think magnesium is wonderful to take, but never at night.  From what studies I have read, and from what little I can understand from what I have read, magnesium "inhibits" the release of dopamine from our shoddy receptors.  And that is very, very bad for our night time RLS.  Magnesium by morning and iron by night should probably be the rule.

I guess you have to pick your poison.  Iron is great to take everyday if you are anemic or have low iron stores.  I am neither.  My red blood count is at the high end of normal, so I feel like at this point iron supplements are poison, for me.  I have recently come to realize that the very large amounts of zinc (actually something called zinc carnosine) that I take for IBS and heartburn are triggering RLS because it interferes with iron absorption/metabolism when taken in too large a dose at night.  As long as I don't take at night I am fine, but alot of times that's when my heartburn strikes.

Anyways, back to your question, I think one bottle of iron-bisglycinate will do no harm whatsover, especially since you are already taking iron.  Two month supply per bottle.  You don't even need to try it more than once or twice.  If it doesn't get rid of your RLS that first night and every night, then go back to taking it in the morning, or whenever you like, or not at all.  It has taken years for my iron stores and red blood count to reach the high end of normal.  Supposedly, women (pre-menopausal women) have lower incidence of cardiac events than man because they have less iron in their body.  So that would lead one to believe that it's best to keep red blood count more towards the low end of normal.  Oddly enough, I wouldn't be surprised if cardiac event is more common among the severely anemic.  Red blood cells carry oxygen to the heart so it seems logical, no?  I guess iron is like Goldilocks and the three bears.  Need to google that.  I believe that the bio-availabe iron crosses the BBB just as mirapex and morphine do.  Only iron is a much finer dopamine agonist. 

With all that said, iron is an oasis, but then we must leave the oasis, in order to find our way home...to homeostasis.   One too many people have gotten complete relief from RLS while taking antibiotics.  It can't be ignored.  There's something to that.  Time will tell.  I do a little research every night.  I figure there's only one of two ways antibiotics can help RLS.  If the people who report relief are taking Cipro or levaquin, or the like, then those antibiotics are called fluroquinolones.  Quinine is a quinolone.  Quinolones are probably the most powerful dopamine agonists out there right now.  I hate them.  It's in an antidepressant called Abilify.  People who never had RLS in their lives report RLS after stopping Abilify.  It really screws up your receptors...so I think.  But if the antibiotics aren't in the fluroquinolone family, or even if they are, they might work because they lower the number of zoo animals in our gut, both good and bad.  I theorize that the root cause of RLS is an over-populous zoo.  Our bodies, and specifically the liver, sounds the red alert when it detects large levels of microbes.  Then a hormone called "hepcidin" is released.  Hepcidin is what I have termed the "iron gatekeeper."  It stops our bodies from absorbing iron from the GI tract and it also stops iron from being released from our stores.  It does this because every living thing on earth, including microbes, needs and loves iron.  So by withholding iron, our bodies are attempting to starve out our zoo animals, or any bacterial infection for that manner.  Our bodies will even withhold iron in the face of cancer.  Cancer cells need and love iron.  It's an amazingly beautiful defense mechanism, but in the process we get RLS.  And it's very possible to have too large a zoo population and not have any GI symptoms.

This could be the root cause of everyone's RLS or it might not be the root cause but just another trigger for some people, or alot of people with RLS.  The true root cause may be genetically defective d2 receptors that we constantly need to appease...meaning don't do anything that interferes with the brains absorption of iron at night (such as taking too much zinc) and don't do anything that interferes with what little dopamine does make it through our d2 receptors such as taking melatonin or benedryl.  These substances directly compete with that precious dopamine.

It's all so confusing.  I guess a good test would be for me to take antibiotics (the regular pencillin kind), wipe out my flora and fauna, then towards the end of my round of antibiotics take some benedryl and melatonin.  If I get no symptoms of RLS then that tells me (I think) that it's not all in my brain, it's all in my gut.  Right?

Well, no matter what, as we age, our D2 receptors age.  Everyone's receptors age.  The vast majority of the population will not be affected by their aging D2 receptors.  But those of us who have lousy D2 receptors to begin with seem to feel every passing year.

On that cheery note, I will say sweet dreams.

 

I definetly ask my GP about these patches . I hope he prescribes them they seem fab. Actually Tom I am wide awake too haha . I mean I live in London and its like 2:20 and I'm on bbc website. Hope all goes well and you finally get same aleep . Ayomi