I am 81 and never had the advantage of a university education.
I feel I really need to try and understand some questions about my RLS and PLMD if I am ever to be able to manage this disease.
I read on this forum that experts think that a major cause of RLS is lack of sufficient iron in the blood circulating in our brains
Fine.
But on this forum I also read that there are many medicines and foods and drinks which can make RLS worse-however many different pills and potions I am taking.
A ll these medicines and food and drinks presumably go through the stomach
Does this mean the gut biome may be key to solving our RLS. problems?
Otherwise why should what is happening in my gut effect the amount of iron in the blood circulating in my brain?
I also find that the only way i can stop my legs and body jerking and twitching at night is by walking. In my case for about half an hour at a time
Why? How on earth can walking effect the amount of iron in the blood circulating in my brain
Finally, if I try and sit or lie quietly in the evening to read or watch TV, the twitches and the jerks start up.
But if i am doing something on which i have to concentrate, like sewing, then I dont twitch
W hy should my focus and concentration affect the amount of iron in the blood in my brain?
I would much appreciate any help anyone can give me which will help me understand this disease we all suffer from, better
Thank you
Written by
thorp
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Thorp, doctors have been to university and the majority know absolutely nothing about RLS.Lots of interesting questions. There are no definitive answers as there still is not enough research.However, Low brain iron is now believed to be the main cause of RLS. Lots of recent studies are showing this. There are also theories that damaged or poor dopamine receptors in the brain lead to poor uptake of iron. More research is needed to find all the causes of RLS.
Spinal cord injury and kidney disease can also lead to RLS.
The gut microbiome does have a link to RLS. Poor absorption of minerals in the gut can lead to iron deficiency.
Food and drink can trigger RLS for some people, but not all.
That's why it's useful to keep a food diary and to try exclusion diets.
But we don't all have food triggers. I don't. I actually find caffeine/coffee helps my RLS.
How are you getting on reducing the Neupro patch? You were on 2mg and SueJohnson gave you advice on getting down to zero.
Iron level in the brain is undoubtedly a major factor in RLS, but it is by no means the only factor: some of us with - *as far as this can be measured by having a full panel blood iron test*- perfectly adequate iron levels still have RLS. But some find that just taking an iron supplement is a cure.
Others will say that RLS is solely a function of inflammation and that this can be entirely addressed by changes in diet, but others have tried a range of diets without success. And yes, many medications can trigger RLS while others can help it.
For me blood tests have never shown that I needed more iron, and taking iron supplements never helped. My regime includes taking magnesium (citrate - although others prefer glycinate) daily; cutting out diet drinks and foods - the artificial sweeteners were triggers; reducing sugary foods and drinks; reducing caffeine (although others find caffeine helps them); trying to take regular moderate exercise; staying cool in bed (although others find that warmth helps); sleeping as much as possible on my side or front rather than on my back; avoiding statins. As a result I very rarely have RLS symptoms now. But others get no relief from any of these things: my brother for example gets no help from magnesium or anything else.
Apparently certain medications eg sedating Antihistamines block the Dopamine receptors in the brain so put simply anything that blocks or interferes with Dopamine receptors worsens RLS. Anything that improves Dopamine receptors eg Dopamine Agonist improves RLS-until augmentation sets in then things get worse but that's another story !
You have raised some very interesting points.Chris and jools have addressed some of them. Everyone will have their own particular opinion.
As Chris has pointed out, iron is certainly a factor for about half of patients. There may well be issues with how iron crosses the blood brain barrier, and what effect hepcidin has on the process.
The gut biome certainly seems a factor and inflammation within the gut setup seems to affect us.
So, diet then becomes important. This includes everything that goes in the mouth, including drinks (alcohol), food ( rising agents-- for me, also MSG) and medications (antihistamines, antidepressants, statins and some BP meds. This becomes a concern for us older bods, as most of us are on some or all of these. In some cases there are ok alternatives.
Distraction is a major relief for RLS. Keep the mind occupied. I never get RLS while watching "Dalziel and Pascoe" 😝. I'm too busy trying to figure out whodunnit.
I believe RLS is a nervous system failure and we simply don't know enough about it all.
Whatever we find in our particular lives, that works, then that is the answer.
Unfortunately many of us have been severely damaged by ill advised medical advice, (dopamine agonist augmentation upsetting the various receptors permanently ) and that complicates any attempt at getting relief.
For myself, iron wasn't helpful, I did discover some triggers, but finally got relief from opioids. These were prescribed for back pain after spinal reconstruction, but the doctors recognise their efficacy in relieving the RLS, and continue the prescription.
I hope this helps a little bit in understanding the bewildering array of advice given out here, - but everyone has their own individual journey of discovery.
My own suspicion - and it is only a suspicion, based on hearsay not evidence - is that once one has been on a dopamine agonist (pramipexole, ropinirole, rotigotine) for any length of time it becomes more difficult to cope with RLS without a gabapentinoid or low dose opioid. I'm not suggesting 'impossible' just more difficult. I'm very pleased that I never took ANY drugs to relieve RLS. (Doesn't help those who were prescribed drugs I know)
I think you’re absolutely right about being on a dopamine agonist. I was on ropinirole and pramipexole (did not try the neupro patch). I augmented on both and since then, I’ve never been the same. I now require a high dose of gabapentin and a low dose of oxycodone to cope with my RLS. I wish I never was on these drugs!
I’m determined to warn people on this and other forums to never try these and if they’re on them to get off ASAP.
I agree with you Nikos64. I was on pramixepole. Then neupro patches. Back on pramixepole & then onneupro again.Now like you I am on high dose gapapentin & low dose buprenorphine.
I would LOVE to be on no drugs whatsoever.
I was on 2,100 gabapentin but have lowered the dose (very slowly) along with buprenorphine.
I am now on 800mg gabapentin but am now finding I get really restless at about 8pm.
Should I up my dose of gabapentin again do you think, along with my buprenorphine?
Obviously, I’m not a medical doctor, but having said that I would first opt to raise the gabapentin because it’s not an opiate and the risk of dependence and addiction is significant less.
I am in a similar predicament right now with the oxycodone. It has become less effective and after 4-5 h it stops working and I’m awaken by RLS. I’m on 1400mg of gabapentin and even though I’m on a low dose of 5mg oxycodone I do not want to go any higher because it’s easy to go up but hard to go down. I am not worried about addiction but I don’t like being dependent on such a powerful opiate.
So, for me .. I’ve made the conscious decision to never increase the oxycodone dose - period. At this point, I’ll take whatever relief the oxycodone gives me. If it entirely stops working I can always consider medical marijuana and stop the opiate since going down to 0 from 5mg is a lot easier than going down from higher doses.
Thanks Nikos64. I think you are right as it is since I have dropped to 800mg of gabapentin that I can't sit still in the evenings, so I think I need to go back up a bit.I am also on 200 microgram sublingual tablets (buprenorphine) and as it is an opiod I certainly don't want a stronger dose of that if at all possible.
I take the opiod tablet at 10pm at night and I have to say it keeps me going through the night.
I do wake up at night but that is just habit but I do not have RLS.
I will see how I get on going back up a dose or 2 of gabapentin.
Speaking of buprenorphine I considered it for a couple of reasons: a) it’s schedule 3 and easier to get than oxycodone which is schedule 2. b) it has a longer half life and it is likely to get me thru the night which oxycodone can’t.
But the reason I hesitate to ask the doctor to switch me is because I’ve heard it’s way harder to detox from it … presumably due to the fact it sits on the receptors longer due to the longer half life (that’s my guess). But I may ask about it next time I see the doctor because most of my knowledge on this topic is anecdotal.
Are you in the US or UK? I am in the UK & my GP was absolutely fine about me going on oxycodone but as you say it only lasted a few hours.Joolsg recommended I ask to switch to buprenorphine as it will get me through the night and I have read up a lot about it being one of the first lines of defence nowadays.
I was dreading asking my doctor for a prescription but again he was fully supportive having read (at Joolsg & Sue's suggestion) all the Mayo Clinic algorithms.
So I would give it a go, unless you have an addictive personality. But see what your doctor says.
I’m in the US and due to the opioid crisis here, the DEA has really cracked down on prescription opioids. I travel often for work and even though prescriptions are nationwide, most pharmacists will not honor out of state prescriptions for schedule 2 narcotics. So before I go on a trip, I must ensure I will not run out.
I’ve really had it with the restrictions and may just deal with the RLS and stop the opioid and just sleep in the morning when the symptoms subside anyway.
The restrictions for buprenorphine are less onerous and is easier to refill.
Ah yes I can see that is tricky. One of the members of our RLS Society (UK) said she is awake all night and sleeps all day.Not good for your social life!
But now in my 70s I try to always have an hour's sleep in the afternoon so I can cope with night wanderings.
Indeed, this disease has been a curse most of my life starting childhood. But now that I’m fast approaching retirement age I will get away with staying up until dawn and sleeping until noon and that doesn’t require medication. Like yourself, lately I’ve started taking “power naps” (<15m) in the afternoon which get me through the evening without RLS. But around 12:30AM the daemon awakens.
But I digress… good luck taming your daemon and I hope a stronger gabapentin dose does the trick for you!
Oh thanks Nikos64. Same to you. Starting in childhood. Poor you.Mine started aged 36. It's a comfort to know there are others out there in the same position.
As far as I’m aware, dopamine is the key to understanding RLS. Dopamine levels fall at night which is when most people start to get symptoms. Iron is very important in maintaining dopamine levels in the brain - post mortem examination of RLS sufferers has shown low iron. The iron in your brain will ultimately come from the food you eat via your gut so what happens in the gut is important. However to get your brain it has to get through the blood brain barrier and it’s likely that different people have slightly different abilities here in the same way that some people are anamic and struggle to get iron from food. That may explain why iron supplementation and infusions help some people but not others. Also some people see instant benefit from iron supplementation which seems strange if the iron has to get to the brain but we all work slightly differently. Dopamine levels are linked to the fact that dopamine agonists are effective treatments for a period of time, however longer term many people find the body adapts to them and you need to keep taking more to have the same effect which can lead to augmentation. Again we are all different and some people manage with DA’s at low doses for many years without issue. Walking works as far as I’m aware because dopamine is involved in movement and walking involves many more muscles to maintain balance so I suspect dopamine levels rise during exercise. No idea why opioids work. I suspect pregabalin and gabapentin work by addressing the symptoms e.g. the muscle movements they are generally used to manage nerve pain and epilepsy where they moderate neuro transmission. Lastly when it comes to triggers such as alcohol, coffee, MSG etc. it gets complicated because people vary wildly in what does or doesn’t have an effect e.g. coffee helps some and makes it worse for others. However it’s probably not surprising as we all vary significantly in most things e.g. physical ability, allergies, iron levels, tastes in food, susceptibility to diabetes, cancer, auto immune disease etc.. the list is endless. There probably is no such thing as normal. This is my personal understanding, hope it helps.
Good morning Thorp. It has always been known that the main thing that stops RLS is walking.So the majority of us resort to pills because we end up walking most of the night & wanting to sleep most of the day.
The question everyone asks me is "why do you (me personally) get RLS only at night" and no-one yet has the answer.
By no-one I mean neurologists.
One neurologist said to me "RLS is caused by a neuron/receptor being slightly off kilter but we don't know why the urge to move comes on as soon as your head touches the pillow".
And yes keeping your brain occupied certainly works. I do all my emailing etc at night to distract myself.
Diet has no effect on me whatsoever. I have done every diet under the sun.
Only walking helps (or strong pills).
But everyone is different.
If we had all the answers we would know how to cure RLS.
When I broke my foot and was in plaster I had no RLS, as though my body was too busy trying to heal myself.
Ditto when I was in bed with 6 week covid.
Why, why,why? I have given up asking but the Mayo Clinic are busy trying to find the answers.
That is why drugs used for Parkinsons seem to help RLS.
We will get all the answers one day perhaps ........
Btw.. there is a strong correlation with RLS and drowsiness. People mostly feel sleepy in the evening and thus sleepiness causes RLS to happen then. In fact, people with obstructive sleep apnea OSA like myself tend to have more severe RLS because when their oxygen levels drop too low their brains wake them up repeatedly and since their quality of sleep is so bad, they are drowsier hence have more RLS.
Now as to why drowsiness triggers RLS I am not sure I understand and probably even specialists don’t full understand it.
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