At about age of 33 I developed a condition similar to RLS but was more sensory as my trousers would feel damp on my legs. Also lots of crawlies etc but never enough to stop me sleeping thankfully. It's always there though at varying levels. I was taking omeprazole recently and exxaberated it too. Something to do with dopamine and iron?
Antidepressants like citalopram and sertraline made it much worse- kicking legs!
Anyhow my 16 year old daughter has developed a problem for about 12 months with very itchy legs and she is scratching them like mad. It's stopping her sleeping.
I think it is the same condition as it can it be genetic? I'm taking her to GP to get serum ferritin levels. She doesn't take any meds and I'm reluctant to take her down that route
Thanks
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Andyroo66
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Yes, there is a strong genetic component. Half a dozen genes have been positively identified, and the researchers are looking at several others.
It is not the case that 'if you have this gene, you'll get RLS', but the genes are usually turned on/off by things that happen in utero or shortly after birth. It is complex, but they are slowly unravelling it.
Not all of us have all the same genes to switch on, so there is a great variety in regard to presentation and treatment, which scares doctors a bit. One size does not fit all, so finding the right meds or actions can be a bit of a nightmare. Unfortunately, after the dopamine agonist discovery, doctors started to think that one size did fit all. Wrong.
My mother had it, I have it, but my brother does not. The epigenetic switches were not switched on in his case.
The one way to tell for sure if you have RLS is by taking a small dose of a dopamine agonist for diagnostic reasons. If it stops the problem, bingo.
If the problem is worse at night, if you have to move to get relief, if it improves in the morning, then it is RLS.
A scratch my legs, I bang them with my knuckles, I massage them with all the force I can muster. I often find myself rubbing my legs without even realizing it.
Of course, you do not want to medicate a child, but getting their iron levels up could solve the problem. We cannot utilize iron properly, it is the central problem in the RLS brain.
Here is a document from the Restless Legs Foundation.
And another of my 'thoughts' to try to solve the problem at it's basics. So, yes, it runs in my family too and it does seem that most think iron transport to the brain is the main problem.
In the past due to my work I've mused about iron for other reasons as there is a 'normal' range for haemoglobin but given ideal iron storage levels the 'normal' for each individual is much narrower. I tend to have a high Hb level, often around 15 and if it was !2 I'd be feeling tired etc.
I've often wondered how the body decides where to allocate its iron as some folk would never get up as far as 15 and 12 is perfect for them.
I wonder if there is any pattern in this for RLS? Do the rest of you also have a high normal Hb level? I've wondered if we have a mechanism where the blood cells 'nick' all the iron and there is less available for other parts of the body where it's needed or if our blood cells need this high level to function properly, with the iron transport mechanisn to match this?
I've wondered about asking this question of Dr Buchfhurer but I've asked him a few things and don't want him to get fed up with me!
in reply to
Obviously doesn't apply in the low iron state where even more folk get symptoms eg in pregnancy and renal failure, but they are secondary causes, but for the primary RLS inherited situation does high Hb match anyone else's situation?
Interesting thought, Alison. My situation differs from rours, as I have always had low ‘iron’ (Hb), often just above the lower limit. So “OK” for most doctors, but probably not if you consider my RLS.
There is definitely something about the iron, if you read the sci papers, and about its distribution especially towards the relevant brain parts. Recently, new research found increased hepcidin levels in people with RLS, but the implication of that are still elusive. Several theories, though. We’ll have to wait and see what these researchers come up with later.
Apparently, the brain is much more 'interested' in getting sufficient oxygen. That is its primary goal. It has to ditch the other things, like iron in the substantia nigra, if it must 'choose'.
wish could be solved. There has to be an answer and we need to know it. At least folk are trying to work it out. So, are you thinking that there is a full range of normal Hb in we folk with primary RLS? Or maybe we don't know yet, or maybe that accounts for some of the variable symptoms and responses - maybe the end point is not enough brain iron but there are different mechanisms for this in different people?
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