A google search reveals that the condition usually worsens with age however Andy Berkowski mentioned in the following video that it is still not known whether that's because the condition itself worsens or because other factors that exacerbate RLS worsen over time.
I wanted to understand how likely it is to keep getting worse and if so, by how much?
Are there things proven to keep its progression to a minimum?
I'm 64. I've had RLS since I was 37. Mine has improved dramatically with the right treatment.
So, I suspect it's difficult to know how RLS naturally progresses because most people will need meds at some stage.
Unless you're one of the lucky minority that has found a food or drink trigger and you can control it with diet.
My rls came back last week and suspected tomatoes so I've stopped eating them again,
Have you found any pain points,I found the movement in my foot the other night was caused
by trigger points at the top part of the leg🤔
Many people report trigger points and some can stop RLS by applying pressure.It's great that you have found a dietary trigger.
Mine definitely got worse as I got older. I didn't have it at all until I was older. Then I only had it once every few weeks and it was mild, then once every 2 weeks and as I got older I had it more frequently and it got worse until I had it every night and finally saw a doctor who of course prescribed a DA.
How many years roughly was it from when it started to when you felt like you needed treatment?
Did exercise, diet, better sleep etc. not even make a dent on your symptoms?
At least a decade. I had an exercise I did that stopped it when it happened.
What were the other factors that exacerbate RLS that worsen over time that he gave?
I didn't watch the video in its entirety: youtube.com/watch?v=iZUXsl4...
Just heard it being mentioned at 9:37
I did see some slides mention things like inflammation, obesity, sleep apnea, SIBO etc. that may increase the symptoms.
This is not related to RLS research per se but I’ve read that dopamine decreases as we grow older and so this could be the reason RLS tends to get worse as we age. At the same time, there seems to be an increase in serotonin (possibly because dopamine isn’t ’keeping it in check’), which again could contribute to RLS as we usually don’t tolerate this type of imbalance and serotonin in general. It was also said that the upwards trend for serotonin might come to an end at some point but it was not clear when or how. I’m sorry I don’t have a link to the research.
For me it’s clear that I have a dysfunction when it comes to both dopamine and serotonin metabolism so things got worse during menopause, and it was obvious that I became more sensitive to any medication that messes with these neurotransmitters. But hopefully there’s a plateau after a while. I’m not a doctor so don’t shoot me if I got any of this wrong!
I really wish we could find the research ! It certainly makes a huge amount of sense when you consider that antidepressants make rls so much worse -
Yeah, I had a really quick rummage through the internet and couldn’t find any good articles, but I’ll try and find one. It does look as if both dopamine and serotonin levels go down but neurochemistry is complex so there are likely to be other factors at play as well. But we all know older people become slower and that probably has a lot to do with lower dopamine levels. Of course ideally, there is some balance between the existing neurotransmitters rather than too much or too little of a few chemicals.
Yep..Neurotransmitters are interesting things to learn about
Indeed, I think we can safely assume that dopamine levels do go down so that would already have a real knock on effect on the well being of people like us who probably have low levels and/or dysfunctions to begin with! My feeling is that serotonin sort of takes over when dopamine is low, but you would think the problem would continue the same as always if both go down equally as you age. So there’s probably more to the story, e.g. choline is one of those chemicals that can effect us quite a bit.
There is research indicating that RLS may not be a dopamine issue but rather cause by a hyper-glutamatergic state. This causes the excess excitability of the nerves and manifests as RLS.
Hi Crow, I believe both dopamine and glutamatergic alterations in RLS are two sides of the same coin. It’s a brain iron deficient coin. ncbi.nlm.nih.gov/pmc/articl...
Right but if meds like dipyridamole are able to provide relief without affecting the dopamine system, maybe the more immediate cause of symptoms is the glutamatergic state. I wonder though if the issue of augmentation can happen with drugs affecting the glutamatergic state though. Because in the 80s/90s they got all excited when DAs were able to treat the condition so well but look where we are with that now.
We with RLS have lousy D2/D3 receptors. That’s the root, or close to the root, of all evil. There’s a Yin/Yang relationship between the excitatory D1s and the calming D2s. DAs are particularly evil because they not only down-regulate our calming D2s by agonizing them, but they make the excitatory D1s grow big and strong by blocking them.
Dipyridamole, on the other hand, inhibits the uptake of that somewhat excitatory neurotransmitter, adenosine. Caffeine does the same. I think that unless there’s some connection between adenosine, and either the D1 or D2 receptors; meaning inhibiting adenosine somehow down-regulates the D2s, or up-regulates the D1s, it’s hard to see how Dipyridamole causes true augmentation?
Is it that RLS patients have lousy D2/D3 receptor to begin with or is that something that you get when you use DAs long term?
If you want to know more about the adenosine, glutamate, dopamine and various receptor types, read RLS papers by Sergi Ferré. I warn you, they are very interesting but not an easy read. Not only from the content, as also his writing style is not the most clear and comprehensible.
True but it doesn’t have to be an either-or scenario. No one really knows. People may also have it due to different reasons, for instance spinal lesions rather than iron deficiency, and so on.
Well that makes sense ig. Hence it's a syndrome/ symptom.
Well, I know for a fact that I have really entangled neurological problems, I know this simply from experimenting with various supplements and also observing what effect drugs have had on me. So there’s a little bit of ‘everything’ in there but I don’t know what the core issues are. I have other health problems as well. I did a genetic test and found that I have the gene for poor iron metabolism, but iron doesn’t help me. I do have spinal issues and believe that’s the main reason I have RLS, but there’s an awful lot going on neurologically in the spine. It’s frustrating not to have answers.
Yes. I have some spinal issues as in stenosis, torn disc and osteoarthritis. Before I developed those, my rls was sort of typical as in it was my lower legs. Now, however, the 'cattle prod' feeling and the overwhelming urge to move is in my hips and I literally need to flex my legs at the hip joint (both sides). I am on 300 mg of pregabalin for it, so it doesn't happen nearly as much as it did. But I had previously been on all classes of antidepressants (tricyclics, MAO, ssri, snri) for 43 years, and I absolutely believe that they either were the cause, or greatly enhanced my rls..stopped taking them over a year ago now.
Ah, I see, I also have osteoarthritis, in my case it comes with hypermobility . I’m convinced my insomnia started because I started on an antidepressant year 2000. The timing is uncanny. And that was probably first and foremost a symptom of RLS although I also now have insomnia in a general sense. Everything just started to fall apart. I think the restlessness I had as a teen was also a symptom of RLS. Poor sleeping after some wine was RLS and so on. I have fibromyalgia and have found that RLS is often co-morbid. ironically they always push serotonin agonists on people with pain and insomnia so whatever I tried also made matters worse, no doubt, but it was difficult to tell it from fibro symptoms.
All these fibro aches in my legs may well be RLS at the root. Nowadays anything that raises serotonin makes me very ill so I seem to suffer from serotonin toxicity (or serotonin syndrome as it’s also called). I hope you continue to manage on just the pregabalin. I’m taking Buprenorphine at this stage but it’s tricky because it’s black listed for serotonin syndrome. It means that I have to be careful what I combine it with, even loperamide and such can cause bad problems.
Everything is just so hard.I can't even get over the counter paracetamol combined with codeine - the doctors think I will 'divert' it or else get 'addicted'...
I am not coping with breakthrough pain at present, so will probably need to have pregabalin in the morning as well. I just hope I can cope with it.
I have always had trouble sleeping and had 'growing pains' as a child that were very painful as I recall - but I now know that they were likely a manifestation if rls.
Sometimes I think I will donate my brain to science for rls research and panic disorder... !
Oh, seriously, health ‘professionals’ are so patronising 😢. I’m sorry you’ve been struggling since childhood, and I’m guessing those antidepressants have not done you any real favours since sleep is the one thing that can really make a difference to depression and anxiety! 😬 But I totally appreciate that it’s difficult to know when everything is painful and muddy and doctors don’t have a clue about the drugs they dish out. It’s terrifying.
They are related. As typicallygaslit put it: “ neurochemistry is so complex”. It is. And it is far from understood, even by those who specialise in it
Yep, that’s why it’s so hard to get any kind of clarity even when you really try and dig into it and accept all the paradoxes and complexities. No one really seems to know what they’re talking about.
Most people can halt or even reverse the progression by changing what they eat as sytemic inflammation brought on by foods makes the nerves hypersensitive leading to RLS. Google 'foods that cause inflammation'
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