I really need some help

Hi Robert.  I too have read that iron levels have a circadian rhythm.  So it makes sense to take it at night when levels allegedly fall and alot of us develop symptoms.  My understanding is that we with RLS do have plenty of dopamine just a poor transporation system known as dopamine receptors.  Supposedly iron is what shores up our receptors yet our brain tissue has so little of it.  I don't know how you feel about the iron you take but for me it goes beyond getting rid of the RLS, it feels like a sleeping pill as well.  I'm down and out for the count, but I have to take it on an empty stomach.  And I agree with you that unless you're anemic there's no point in overdoing it.  So I only take it once an attack sets in.  That's the problem with the dopamine agonists, not only do they down-regulate our receptors further, but you have to take every night and how do you know for sure you are going to have RLS every night?

I've been researching things that up-regulate people's dopamine receptors...mostly to help with addiction.  I read that consistently under-eating or intermittent fasting will up-regulate as well as anerobic exercise.  I also read that a substance call Uridine 5 Monophosphate will up-regulate receptors.  I bought some on Amazon and tried two nights in a row.  WORST RLS both nights and felt wired.  The iron took it away but then I awoke at 6 or 7am and had RLS again which I never do.  I'm going to try taking it during the day.  It might be something that you need to take during the day for awhile, suffer through daytime RLS, but in the process it will upregulate the receptors so that there is no night time RLS.   Magnesium taken at night will also have a similar but more mild affect in terms of provoking RLS.

We can't sit on our hands and pray for a new cure or treatment, we have to actively seek out new solutions and try them, provided they are safe.  I felt the Uridine was safe because it is found in mother's milk and they add it to formula because it is so essential.

 

Hi Udon. I usually take the iron during the day at mealtime and I also often take a teaspoon or two of magnesium citrate with a protein shake, but the only thing I have currently that will fix my RLS, which I do get (or would get) every afternoon/night, is ropinirole. (In fact I actually started taking the iron because I felt the amount of exercise I took required it, and I perhaps take the magnesium primarily for bone health.)

I think research tends to show that enough available iron is not generally the problem; it's the getting the iron into the cells which is controlled by these iron regulatory proteins which, from my information searches, seem to be associated with our circadian rhythm. But they're not the only substances related to dopamine and our circadian rhythm. There's aromatic L-amino acid decarboxylase, AAAC or AADC, which converts L-dopa to dopamine and there's something called des-tyr1-gamma-endorphin (DT gamma E) and I guess there may be more still. How it all works together would seem to be a mystery to everyone.

I'd not heard of Uridine 5 Monophosphate before but have read about increases and decreases in dopamine transporter population and its likely association with RLS.

Hi Graham, sound like the fodmap diet could solve a few of my issues too. I will give it a go, thank you.

Good luck

I hope you are among the lucky ones who it helps.

It apparently helps about 70% of ibs patients but I have known 5 RLS people whoi have tried the diet and  four have reported significant success.    A couple are still on low doses of medication.   I cant take any of the medications I have tried so I was very happy that the diet worked for me. I have recently found that I can get excessive with even low FODMAP foods  Recently mandarines came into season so I was eating 6 a day  -   bad move so I cut them out and I am improving again.   I expect that when I return to normal I will be able to eat one or two a day.  The message is to eat a variety of allowable foods.

I hope to hear of your success.

I'm glad you find the diet helps, I shall plan what to buy later. Its going to be a complete change of everything I normally eat, so it bit of a challenge. I'm unable to take a lot of medications and to be honest, I think a lot, no most, of my problems are down to bad living! I have fibromyalgia, gerd and rls and fortunately have been able to live a relatively normal life, although I've never felt 100% for years. I think its all catching up with me now. Not surprising really. Stress, overwork, rubbish diet at stupid times of the day, falling asleep with phone or iPad and ill health and depression! Time to sort things out before I really start to suffer. Sounds like you ve been through the mill too! Why can some people do all the wrong things and get away with it, so unfair!

Perhaps doing all the wrong things is the way to an RLS free life.

Maybe I'll try a diet of whiskey and wild woman (wife)  

Graham

Graham, your wild whiskey diet sounds a lot less complicated than this fodmap diet and way more exiting!

Hi Leanne    So good to hear that something worked for someone.  Nice of you to visit just to let us know.   I dont think that product is available in Australia but I will look out for it.   I have a daughter in London so I might have to send her around to Boots.

I take iron at the moment in the form of iron sulphate (or similar name) and it worked great for me for about 2 months but then faded away but this different form sounds promising.  I wont allow myself to even hope that I can eat onions and garlic again but I have two daughters who have inherited this monster from me so I really want to find a solution before they get older and worser.

I dont hate doctors but it would be good for us if more doctors "caught" RLS and took it seriously.

Thanks again

Graham

This is a fascinating discussion everyone I am learning so much about something I thought I just had to put up with.  I have multiple health problems so its hard to get the doctors to isolate things, one thing will lead to another kind of attitude but that doesn't help me at all.  I am going to look at the diet, I have IBS as well so I can't lose, thank you so much.  I am taking multivitamins, magnesium and Vit B complex at the moment, last night I didn't have an attack but I have had several bad nights before that so I am going to give some if the things suggested if I can get hold of them here.

Had a little look at the diet, as a vegetarian it seems that I am eating most of the wrong things, eg beans, to get my protein.  The advice seems to be to see a dietitian as well, the chances of me getting a referral for that are between nil and none!!

As a vegetarian I suspect you will indeed need to double check your iron intake and absorption – heme iron, that from the blood of animals, being the most readily absorbed form of iron. I thought vegetarians knew all that! – but I've often wondered if vegetarians aren't more prone to RLS than omnivores, and indeed if some sort of demographic study of RLS might not throw some light on the subject.

I am aware that iron from animals is more readily absorbed but I have been a veggie for 20 years, have had countless blood tests and never been shown to be anaemic.  Its the first thing doctors think of when I am ill and they see I don't eat meat or fish.

Lynne do you have IBS-C.  I do.  I read that about 60% of people with IBS also complain of RLS.  I wonder if the 40% who don't complain mostly have IBS-D?  I know some nights when I have RLS going to the bathroom will immediately stop the RLS.  I've actually read other people report the same thing.  Like I said, such a ridiculous condition.  As an aside, I read that something like 90% (or higher) of people with fibromyalgia complain of RLS.  The point is, maybe we with RLS should do everything in our power not to be constipated.  And we should probably try the consistently undereating thing.  It upregulates the dopamine receptors in mice...why not us?  It might not matter so much what you eat as the quantity, in terms of RLS.  My IBS, which I've had since 12, is aggravated by an overgrowth of candida which also causes fatigue.  I've been tested and it's been high...my antibodies to candida that is.  When I'm feeling better and I get tested then the antibodies are in the normal range.  I've also been tested for SIBO, twice, both times negative.

For all we know, our gut microbiome might be at the root of our RLS.  The FODMOP diet I think is great at relieving symptoms of IBS and maybe RLS, but if there's an overgrowth of a micro-organism, literally an infection, then it takes alot more than that.  My allergist (who would test for the candida overgrowth) would also check my tongue.  If it has a white or yellow coating, especially towards the back, he thinks that's a sign of an overgrowth.

Have you checked your tongue lately?  

 

Oh no wait, I think that 90% of people with fibromyalgia have SIBO.  And 60% of people with IBS also have SIBO.  At any rate, I know there is a higher incidence of RLS among people with IBS.  Got all that?

 

I have often been grateful that I am not a veggitarian because the diet would be much harder.     I think I have seen something about FODMAP for vegetarians and I will see if I can find it.

Why is there such a problem in the UK (I presume) to get proper medical care?   I don't need a referral to a dietician.   I can go privately or the local councils have dieticians.   I think most of their work might be with diabetics but they cover all areas.    I have to add that the several I have seen so far haven't been a lot of help but I think that might be because my body is not as cooperative as it could be and I seem to react to everything outside the basic diet.    So I have no trouble visiting dieticians    just a problem finding the magic dietician who is competant to help me.

What is SIBO? I have FM, IBS and RLS, wondered if I could complete the rest of the dictionary 😊

Forgot the TMJ 😐