does anyone know what actually causes... - Restless Legs Syn...
does anyone know what actually causes rls ?
I once spent a long time going through all the articles I could find on the internet so I can't verify that this is true but the conclusion I came to was that it's an inability of the the black matter in the brain to uptake iron. I have a sort of medical background and I know a bit about blood but nothing about the brain. I don't know what the black matter is. A bit more research may be required here. It appears to be hereditary but can surface if someone becomes anaemic. That's why it's important for RLS sufferers to keep their ferritin (the body's iron storage compound) high. Normal ferritin levels range from about 15 to about 200 (I say about as I can't remember the actual normal range). Whereas a normal person may be told by their doctor that their ferritin is fine if it's about 20 it seems to be important that we keep our levels much higher, at least over 70.
I'm no expert and I'm sure nightdancer will be able to give you a much better explanation but this is what I understand.
I hope this helps.
At a guess the black matter will be what is more formally known as the "substantia nigra".
15 to 30 is "normal" for people who do not have RLS. They would like RLSer's to have a ferritin level of at least 70 now. Iron does not help everyone, like all meds with dopamine do not ehlp everyone. Ther is primaryb RLS and secondary RLS. Primary RLs is no know physical cause except that someone passed the gene down to you. This is not true for all RLSer's. Neither of my parents show or showed any signs of RLS, but they had to have had the recesive or no active gene to pass on. Both my sisters and I have it, both my nieces, and my niece's kids. So, we have prinary RLS, but I also feel and know that my RLS got "awoken" when I broke my back at the age of 14. so, no one can nail down the cause of RLs for everyone yet. Lots more studies to be done.
jitterbabe to magggzzz
I read this in the press some years ago, It seems that the brain cells producing the chemical Dopamine die off in some people, possible age related. It can be treated with drugs including Ropinirole, this is a medicine used also to treat Parkinsons disease, at my request my doctor prescribed this for me. It has been a mixed blessing, the improvment in the severe RLS has been a miracle, the amount I take has increased over two years to 2mg per day , I need the tablets spread over 24hours, if I forget to take one at the right time the RSL shows shows me no mercy. When I go on long journeys, the theatre, or flights I take an extra 0.5 tablet and I am fine. you have to persevere until you find the amount for you, hopefully this is of help to you.
There are also time released forms of Mirapex and Ropinerole, which may work better. You never know. 
My ferritin levels are quite low and I get very restless legs in the evening. I don't know if it is rls but definitely rl. I also have an underactive thyroid and my legs improve when I up my medication Liothyronine.
Jo xx
What do you mean, you do not "know if it is RLS or RL???? Explain RL, please, since i have never heard of that one ever.
The only way I can describe it is restless legs which I have to keep moving but when I have read of other people here with rls they seem to be a lot worse than me...It seems to keep a lot of people awake at night and they also have legs that jump involuntarily but I don't have that . I don't know what else I can say other than that when my thyroid medicine is upped when needed the restless legs go away.
Jo xx
Plus I only get restless legs in the evening.
Jo xx
that is the milder form, so far. How old are you, can I ask?
mine started at 14 as a small restlessness, and over theb years it has become the most severe case my neruo has seen. It is progressive, I hate to say.
Hi I am 60 and was diagnosed hypothyroid 6 years ago. I didn't have restless legs before the buildup to hypo. Thanks for setting me straight about the rls I thought I just had restless legs without it being the "syndrome". The thought of it getting worse is dreadful after reading other peoples stories.
RLS can only happen in the evening hours for a lot of people. you defibitely sound like you have RLS, no such thing as RL, unless that is just your abbreviation for being restless. RLS worsens with age, and I only used to have it in the evenings. RLs is any time you are awake and you have that URGE to move. As it gets worse, it starts disrupting your ability to fall asleep. But, RLS always starts out in the beginning for most of us as restlessnes in the evening and then it grows from there, remebering we all are differnt, but you are describiong RLS to a T, Mild RLS, but it is RLS, I would bet any money on it. There are all different levels of severity of RLS, from mild to mind altering misery.
RLS, is neurological thats seems to be what all the experts say. RLS, is inherited for most of us, including me. A defective gene, that is passed down from either both parents, or one parent. After a study was done recently in Australia, by scanning brains of people with RLS and without, they found the movement part of the brain of RLSers was different.
The defective gene seems to be triggered off by a trauma of some sort. For some of us with RLS the dopamine meds are helpful, which probably means that is what we are lacking in.
Other people the dopamine meds dont help them at all, so does that mean they are not lacking in dopamine...?
There are underlying causes for RLS, lack of iron has been noted, some seem to find relief by taking iron, tho i am not sure that seems to help most.
Diabetics can develope RLS, but not all do.
People who have had back surgery find thats when their RLS started.
Certain medications seem to start it off for some people.
The list seems to be growing, on the hows and whys of this disease.
Its sooooo complicated, and not enough research is being done for us. So when we can we need to be proactive and do what we can when we can to help ourselves when asked to take part in anything which is asked of us, as someone else has already stated.
DITTO. Could not have said it better myself. If we REALLY knew what caused RLS, there would be no reason for this group or any other. WE only WISH we knew. ALL we can do is to stay educated, read all we can, help others, support others, and maybe some day there will be an answer. The experts are really sliding away from the dopamine meds, FYI. Including doctors on the medical advisory board in the US. will blog about it in a minute. 
Hi , it's all strange really as my iron levels are great always have been, I started very mild with RLS then I went on antidepressants for 5 years when I came off them my RLS become every night, when I damaged my back I got RLS 24/7 and my back is much worse now and even with medication that works when my back plays up my legs slightly twitch! So me personally I think it's to do with my back and the nerves .
AND, the depending onwhat natidepressnats you were on, they can trigger or even cause RLS. SSRI's and tricyclics. rlshelp.org
My doctor told me not to take iron tablets as my ferritin levels were ok.To much iron is as bad as not enough.
I started having RLS symptoms in my 20,s it was at its worst when i turned 60,it became unbearable.I now take ropnorole. I have always had poor circulation and i am sure it is connected to RLS. cumoneillen.
I am a suffer of RLS 24/7 without meds. From what I have read there seems to be a number of theories. Final kidney disease causes RLS, Diabetes increases the chances, low iron levels, pregnancy both can cause RLS, but then there are the theoties. Some believe it emanates from the spine or the dopamine system or from genetics, and even meds can cause it. It's a rotten illness and causes a lot of distress to people and it is so mis understood or under rated. There are too few neurologists with an interest in it and many GP's don't know much about it or the treatments that can be tried. Knowledge is increasing. You have had it for a very long time. It must be very difficult for you at times.
Google "iron overload" and you will see it can actually kill you. That is why I say repeatedly, NEVER, EVER just start taking iron on your own. It may not be the cause of your problem, and too much iron is way worse than not enough, since death is a side effect of overload. So, your doctor is correct. many people have "normal" ferritin and iron levels and still have raging RLS. Iron is not the answer for too many people, as are not most treatments. Trial and error. I had iron infusions done, and got my ferritin way up there, but it never helped my RLS.
He's right to say that too much iron is a very bad thing but normal people need to take a hell of a lot of iron to get to the stage where it would be harmful. The body in general is very clever and in the case of iron it only absorbs what it needs. However just be careful your doctor isn't saying that your ferritin levels are OK because what is OK for a person without RLS is just not enough for us poor sufferers. We need in general to keep our ferritin above 70 whereas it only starts getting dangerous at levels above 200 where the body can't store it as ferritin and starts laying iron deposits down in the liver.
Hi just reading your blog my iron levells have always been low think its prob because im a vegetarian even though i now take spatone iron every day my rls doesent seem to settle down at all think i have poor circulation in my legs and ankles to im in my 50s been suffering since the birth of my second son
Trying to bring up ferritin levels with dietary iron is next to impossible. It takes months to bring it up a few points wth supplments, FYI.
RLS is nerological. not trying to be asrgumentative here, but RLS really has nothing to do with circulation, another long standing rumor, it has to do what is physically going on in yor brain. That much we do know. And, getting irt-ron levels up does ceratinly not help everyone. I had iron ifusions, and still no help with the RLS. Iron overload can kill you, so it is very necessary tgo consult with your doctor. I studied some slep disorders in college when I was majoring in psychology. Tings happened and ai did not get my degree, but it is stil all up in ther iny head (the info, that is )
There is no proof at all that RLS has to do with anything in the circulatory system. It is a neurological disease, one thing we are sure of. Underlying causes are different fro one person to the other. The circulatiobn rumor has been out to sleep by the experts, and web sites and people claiming that fixing varicose veins, or schlerotherapy (sp) That is very old information that has been spread around the internet sinc ethe beginnig of time (well in internet time) and like I said circulation is not neurolgical. rlshelp.org treatment page.
so, to answer the question, there are many theories, some long time theories being shot down into dust lately, so nobody knows what causes RLS, just lots of conjecture, and most studies for RLS are done by drug companies. We can only wish we will find out the cause in our lifetime. AS Elisse said RLS is genetic, and that is in 66% of all RLS cases. Both my sisters, my nieces, and my nieces kids all have RLS and PLMD. Sometimes there is no other answer than you were born with it. Neither of my parents ever showed any signs of RLS, and my Mom is still alive, but one of themn was carrying the recessive gene and passed it to us. RLS`does not skip generations like` lots of genetic diseases.
i phoned up about my blood test results today told my iron was 6 i asked about my ferriting level got told iron and ferriting are the same thing ....
Hi gypsy i had a blood test earlier this year and was told my iron levells were 12 the average is 15 i cant seem to get mine up no matter what i eat or take
There is the iron serum level test, and the ferritin level test. Iron serum will tell you if you are anemic. Ferritn shows hw your body stores theb iron, and that is in the iver and skeletal system, so two differnt tests and ceratinly not the same. Very easy to google ferritin level for RLS. If you look at the lab slips, Ferritin and iron serum are two totally differnet tests. They have differnt billing codes, etc, so that is the first clue that your doc may need to catch up on iron info, if he cares to, That is pretty basic information in RLs Land,.
Hi there as far as I know being one with the syndrome, I have read somewhere that research shows that there is an imbalance of dopamine which is a chemical that controls muscle movements. Also I am told that you get a gene or two from your parents with rls. Then there is iron deficiency and I have heard one doctor maintain that's magnesium deficiency and lastly I know a woman who suffered quite a bit and she stopped consuming all milk products she became much better after awhile. I am still thinking about give the stop milk products a try. But I love cheese and Greek yoghurt , but it is worth the try. After Xmas
Happy holidays
Kolla
could it possibly be the lactose in the milk or does she use soya milk im thinking of changing over to that
I have used soy milk for years because I am lactose intolerant. In mY case`it makes no difference with RLS, and in many other people I have talked to and delat with.
i don't have milk and not used milk since i was 13yrs old i'm 49 now so stopping milk won't change things in my opinion but then not everyone's the same ,
yup, we are ALL different except in the fact that we are` all miserable. 
DITTO!!!!!! If we do not help ourselves, as in anything and ask questions from experienced people, we will get no where waiting for research these days. non new meds are being investigated right now,. just different forms of old meds right now. Useless in my book. We need to look past the current meds and figure out why they are mostly all such a problem.
It doesn`t cheer me up at all to read that it`s genetic, it`s just another nasty thing that my parent`s handed down to me! some people should not be allowed to have children!
Studies have shown that RLS is thought be due to the Substantia Nigra cells in the brain not producing sufficient dopamine and hence the symptoms. Medication is aimed at stimulating these cells to produce dopamine and hence symptom relief.
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