On reflection after reading many many posts on here and HAVING been a RLS sufferer I think you COULD be barking up the wrong tree . Almost every post I read talks of drugs , supplements or methods of easing your suffering but I think it possible there's another way .
I Had RLS because I started doing something that caused it , it's not hereditary it's caused by something . I started taking an anti depressant and for months had RLS until a freind told me anti depressants can cause my problem . I stopped taking them and days later it was gone forever . Can I suggest you look back to the onset of your RLS and look what changed in your life that week , probably an intake of SOMETHING maybe not medication but something that sparked this neurological response . I don't know , it worked for me just maybe it can work for you . Look closely and maybe something changed for you around the time you got RLS , sorry if this sounds bunkum just a suggestion for all you peeps that have my deepest understanding and sympathy .
John
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Mememe1962
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I think , if you have been following my own answers, you will see that triggers have been a major component of my analyses of people's problems.
Personally, I can remember having rls from five years old. It took me many years to figure out that the raising agents in biscuits was a primary trigger. And later,that sulphites in alcohol and processed meats were another.
I also know that it must have a genetic component. My father and sister also suffered. However, only one daughter ,out of four, has experienced it,( during pregnancy.)
So, you are absolutely correct in your analysis- for some people. Though for many, they find themselves where they are,and sometimes it's just easier to reach for a seemingly simple answer, rather than look more deeply into the matter.
Madlegs because of your info you have posted so patiently and diligently I have been able to steer clear of many triggers. One being flonase for my hayfever. It's been a catch 22. We are in the thick pollen season right now and I had to get off the flonase bc it was causing spasm breakthrough at night. My allegra can barely keep up but if I get sleep.. that golden treasure we all crave, it sure makes a difference. You all have been my go to and the first group I ever joined. Thanks
Hi Madlegs, thanks so much for your help to people. I’ve noticed that when you give background to new people, you mention that some get help from gluten/sugar free vegan. I wanted to suggest that you might mention personal elimination diets too. I got that idea from Carl at Relaxis who seems to be in close contact with Dr. B at Stanford. He told me that they have noticed a connection in people calling for help around the holidays with worse symptoms and he thinks it’s good triggers. He said some people can eat a sleeve of Oreos but one bite of a chocolate chip cookie will send them into RLS. I created my own journal and have identified a list of foods that when I eat those, I’m fine (plus iron and progressive relaxation before bed). Anyway, I just think it’s so important for new people to know that they might have to figure out what their own triggers are, which may be beyond wheat and sugar (although BTW, wheat and sugar ARE among some of the foods I have to stay away from). Thanks for all you do for people on this forum.
You're funny. At 64 I can honestly look back and say, 'No ... I was taking absolutely no medication whatsoever, no antidepressants, no supplements, and definitely no heavy drugs. You see, at the ripe old age of 5, RLS was just part of my everyday living. It IS hereditary .... mother, 3 other siblings, and my two children ALL have RLS, however not to the extreme degree that I have been tortured with. They maybe get it about 4 times a year, brought on by drinking to excess or from being overtired. Side Bar: yet they still can't have the empathy to understand the absolute cruelty that I've been forced to endure my whole life.
Accepted and understood. Restless legs is different for everybody, different backgrounds, different severity, but the bottom line is we all know what it is. And we're all still learning. No harm no foul
Me too Grany, from my mother. I have only one sibling who does not have it, lucky him.
They have identified at least half-a-dozen genes in Primary WED that are altered, and suspect several more. The science is soldiering on, which is good to know.
They have also recently identified a specific dopamine receptor ( there are a few) that is whacked-out in us. LIke a lot of other whacked-out-ness.
Well. ...... Maybe for some but of course RLS occurs for different reasons too ie low iron, bad circulation, low salt, or in my case miss firing dopamine. I was 13 went mine started. ..... puberty is the only marker I could possibly blame but probably unlikely 😢
I think we inherit the ability to have RLS as many don't get it at all whatever the circumstances or potential triggers. Some only get it with specific triggers and others, maybe with a different gene get it whatever they do but still worse with whatever their triggers are which could be many so hard to identify.
And then the other odd thing is that even with the same inheritance some get it while others don't or in different degrees of severity. What we inherit is so odd. The genes can be present but the result not expressed as in many other conditions. Folk can inherit specific eg cancer genes but still never develop it. These results can vary even in identical twins.
It's all very odd but makes research even more of a challenge.
Hi John - I remember getting "growing pains as child" and later getting intermittent restless legs in my 20's. One thing that does come to mind is living next to an apple orchard and they would regularly spray with lead arsenate which these days is banned. I somehow think it could be linked as pesticide use is linked to Parkinson disease and we know we have problems with our dopamine. I have never taken any drugs and still don't. I eat a healthy diet and have tried fasting, cleansing, anti-inflammatory diet - everything but nothing makes it go away - but it has held to a manageable level doing this. I can get to sleep if I have a hot bath, shower or walk on cold wet grass barefoot. I am determined not to take medication though sometimes it is tempting -seems it only works short term. My point is that I feel it is something that is hard wired for me not something I am or not doing. However I agree that for some people they could be triggered by medication and it can go away when they stop. These are the lucky ones. Cheers.
When a health condition manifests it's self among members of a family it does not necessarily imply the reason is genetic. All members of a family may have some underlying genetic weakness for heart disease that can be triggered by diet, stress, smoking, etc. The field of epigenetics has shown that genetics is not always destiny. Environmental factors, lifestyle, etc. play a role is the expression of genetic misfortune. For RLS that trigger may just be reaching a certain age, or exposure over time to unknown triggers. Or just the result of a faulty dopamine system. Hence the need for more research while those who suffer do their own experimention with triggers, medications, and lifestyle changes.
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