For what it's worth.

[janland]

Hi everyone... from time to time I write a post about my experience with the dreaded rls.

It seems we are all so different and also usually have more than rls to cope with medically.

I do believe rls is part of another ailment disease or illness that we have.

It could be connected with thyroid troubles..or kidney disease or auto immune disease or high blood pressure or inflammatory problems even.

I don't think it stands on its own.

It's to do with the workings of our whole body.

I really don't like prescription meds from docs.. consequently I'm just on levothyrixine.. small dose at present for thyroid...as even this medication was over prescribed.

I try to manage my ailments myself herbally or just with diet.

I can't really help my osteoarthritis very much apart from diet..creams and paracetamol..

However..at night I don't get much sleep..due mostly to rsl and osteoarthritis in knees and hips pain..

I take a few herbs and vitamins during the day..

Yesterday I had no rls whatsoever..!!

Which puzzled me.. this does happen from time to time.

But.. yesterday I had 4 shots of caffeinated coffee.. which I don't usually have.

Also I'd run out of my usual b complex vitamins.. only had cheap weak strength from Tesco's.

So it was rls a lot last night..

I get to kitchen in middle of night..(quite common actually)

Took extra b vitamins.. with small drop of milk plus some dark chocolate..

Back to bed again.. slept like a top till morning..!!

I really think..of all the supplements..herbs vitamins and healthy food...it's the b complex vitamins that are doing the trick... maybe especially b 6.. because that helps the neurology part of body.

Hope this helps.

Best wishes everyone.

[Hidden]

Hi Janland, thanks for sharing this.

Your comment about RLS being a part of something else is interesting. The question is, part of what.

Certainly some people get RLS secondary to other things e.g. pregnancy, kidney problems, anaemia etc.

Like many others though I have idiopathic RLS not associated with anything else.

I think there's something in what you say though.

Firstly, however, I don't think of RLS as a "disease". A disease is caused by something that is normally not part of us e.g. a viral infection, or something that goes wrong with part of us.

I think of RLS as a "condition" and as such it isn't caused by something that's normally not part of us, it IS part of us, it's built into our constitution. It's a constitutional flaw that might lead to other consequences.

Additionally it's a neurological condition i.e. a condition of the nervous system and as such is associated with the pituitary gland, (the "master" endocrine gland), which affects our kidneys and thyroid gland. It is also dependent on all the substances that affect the nervous system, particularly the minerals sodium, potassium, calcium, magnesium. It's dependent on the B vitamins.

People who have poor vitamin B intake or poor vitamin B absorption do have problems with nerve function.

So yes, I think you're in thinking RLS is just a part of something else, but not necessarily part of any other specific disease or condition.

[Graham3196 in reply to Hidden]

It probably doesn't matter how we define it if we know how to stop it.

If vitamin B stops yours you are really lucky.

Some lucky people find that they stop it by controlling their diet. Some need their ferritin level to be increased. There are other things that help other people. Anyone who doesn't enjoy RLS should try out all the options and preferably put the drugs at the bottom of the list if nothing else helps. Compared to the disturbance of your life that RLS brings it takes very little effort to try a vegan diet for a month or so. Give up caffeine, lactose, alcohol and gluten for 12 weeks Try a FODMAP diet for the same 12 weeks. Get your ferritin level checked and raise it to about 350 One of these might be your magic pudding and you get your life back.

I know it doesn't work for everyone but it just might work for you!

The only way to find out is to try it.

[Hidden in reply to Graham3196]

Although I agree that it's important to consider what can relieve RLS, I do think that how we think of RLS is important because it can actually affect how we get relief from it.

This is not just a matter of a definition, it's about the language used about RLS, (or anything really), because the language we use determines our thoughts.

E.G. what's the difference between a "mental illness" and a "mental health problem"?

To use the words "disease" or "illness" about any condition which affects our physical or mental well being affects how we interpret it and what we expect from it. Interpretations and expectations certainly are a strong determinant of how we experience things.

E.G. in the 1970s there was a study where people were given an injection of adrenaline (epinephrine) and put in different situations. They were asked how they felt. Some of them said they were anxious whilst others said they felt excited. They all had the same dose of the same substance, the difference was due to how they interpreted the situation they were put in.

To interpret RLS as an illness suggests that we should expect a "cure" or that we can "stop" it. Not just a matter of semantics, it's simply unrealistic, sorry.

We're not just people who have RLS, we are RLS people. We will always have it, someone will always have it. Eugenics might be a solution, but a final one!

Thinking of RLS as a disease will only lead to expecting a cure that will never happen or it being completely, permanently stopped. You're going to be permanently disappointed and think of your quality of life maybe, as being less than it is.

Having a disease means struggling against it. The act if struggling draws attention to it and sensitises us to what we're struggling against.

It's just a personal theory, but like other things, the suffering people experience through RLS, might PARTLY be due to social norms. Modern culture has this underlying thread that we expect our lives, our bodies and the things around us to be almost perfect. Anorexia is possibly a good example of how this works.

It's obviously a passion with me, but as I find myself repeatedly thinking about this forum, there is an overemphasis on the physical and an ignorance of the value of the psychological.

This does not mean, the physical should be ignored nor that anyone should not explore anything they can do to "relieve" their symptoms or help them "cope" with them. There is no psychological "cure" any more than there is any physical cure.

Psychological measures can be an effective part of improving our experience of RLS. Part of that is fundamentally how we perceive and interpret the condition.

Part of it is the language we use.

Apologies, a bit if a rant

[LotteM in reply to Hidden]

Not at all a rant, Manerva. I like your thinking and your willingness to share it.

[Unhappygirl]

Thank you for that information, l really enjoyed reading it, x

[involuntarydancer]

There is also a chance it was the additional coffee that resulted in your improved symptoms as it operates on adenosine receptors which are now believed to be implicated in the transfer of iron to the brain thus impacting on rls symptoms - see a study a couple of years a go by Dr. Garcia-Borreguero and Sergi Feri.

[Sky7777]

Hi there, Thank you for the info, will contact my doc to see if I can get thyroid + tested. I Reason your post caught my eye is because I don’t believe in man made meds. Wont get into all of that but wanted to share that my RLS started 2/13/19. I panicked but also started reading lots on rls. This is how I came across someone with RLS who suggested to drink lots of water, easy/ no sugar so I tried that. I drink lots of warm water between 7 a.m. and 2 pm. I stop because have an hour + commute (work to home) but since I started this I have not had RLS going to sleep/ while sleeping. Hopefully this works for you too. What do you have to lose to try?

[Alex2308]

RLS actually got me living healthier generally. I used to have pretty unbearable RLS. To alleviate the symptoms I now begin my day with a pill of several billion of different gut bacteria. And I consider it be one of the most important things that I do. Because your guts rule everything. I take multivitamins every day including of course B-complex. Also D3 is important. I wouldn't say B-complex helps all alone. I experimented with B6 for instance increasing dose every night till 40mg. Never helped much neighter alone nor in full B-complex. I stayed alcohol free for 6 months. Caffeine free or caffeinated with crazy 400mg a day. I experimented with everything, every piece of advice given in RLS community. Almost everything helped for some days and that was all. Medication wise I take only Alimemazine 15 mg a day. It pretty safe and makes me really calm. And 500 mg of Phenibut before going to bed. It reliably delivers GABA-like molecules. So I sleep better and wake up easier. And what is even more important it prevents my stomach from getting too lazy at night which used to cause my gastritis. I tried to abandon Phenibut and immediately felt gastritis again. The rest of my RLS I shake away with my vibro plate machine (as I wrote already) when I wake up at night, it takes 3 minutes only.

[Tinabugsu]

Apparently there's some studies that show that low iron can be responsible for RLS and that blood levels do not necessarily indicate whether your brain is deficient in iron. Somehow some people have normal iron levels but their brain doesn't metabolize that iron. I've had it ever since I was a little girl and it's gotten increasingly worse over the years now that I'm 47 I finally gave in to medications cuz I couldn't live like that anymore

[Graham3196 in reply to Tinabugsu]

I am not an expert on this but from what I have heard it seems there are many people who have RLS and low ferritin. The ferritin is essential to supply the brain with iron. If you have low iron there is a increased risk of RLS and probably other ailments. To reach the brain the ferritin has to penetrate the blood brain barrier which is designed to protect the brain from things in the blood that might harm it. The concentration of ferritin in your blood is important because it is one factor that controls the rate of supply of iron to the brain. Another factor is apparently the porosity of your individual blood brain barrier to ferritin. Some people apparently have a porous blood brain barrier while others have less penetrable blood brain barriers. Low blood ferritin is defined as being less than 30 by some medical experts, less than 100 by other medical experts and less than about 300 by other experts. At the extreme upper end there are people for whom the blood brain barrier appears to not allow enough iron to the brain at any blood concentration that is safe for the rest of your body. This is based on some measurements of iron in the brain but these measurements use very intrusive techniques or postmortem measurement.

In the USA there are doctors such as Doctor Buchfuhrer who seems to work in close contact with the experts at Johns Hopkins Hospital who have studied this. Their conclusion (at the moment ) is that the first line of attack is to raise the patients blood ferritin to about 350 to see if this cures the RLS by allowing the brain to work properly. If the patient is one of those with a low penetrable blood brain barrier then the doctor should apply drugs or try some other treatment.

There is a report in this forum that a researcher in Spain has developed a technique to measure the iron that is in the brain where the measurement really matters. I don't know details of this but it sounds like a very promising advance in technique that might lead to significant advances in treatment.

This might be all wrong but its the best I can figure out so far.