Hello, anyone here notice sort of muscular or nerve twitching ongoing in their legs or foot along with RLS? I get this constantly in day though at very lighter intensity but it increases in evening, sort of bubbly, electric disturbance like feeling inside both foot and sometimes calf muscles as well. My doctor says its due to RLS only but my mind keeps deviating towards neuropathy, even though i don't have any reason or co-morbidities to have that.
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Twitching in RLS
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CutestDevil
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I have been referred to a neurologist because of tingling, burning pain in my feet and lower legs. I have also been experiencing what you have described, I have recently started to think that I may have RLS as well. My GP thinks mine may be toxic neuropathy.
Thanks for your reply, do let me know once you consult as to which tests your neurologist recommend or what he has to say on that tingling
Hello CutestDevil, I’m waiting for my appointment with the neurologist. My GP thought it may be peripheral neuropathy possibly caused by Methotrexate. The rheumatologist has told me to stop taking Methotrexate until I get the result of blood tests to find out levels of folate and vit.B12 which may also cause the symptoms. My appointment for the blood test is 18th August so I’m hoping for the result about a week later. If I’m deficient in vit. B12 I will ask my GP for vit. B12 injections.
in reply to Rachmaninov2
The link below is to the the diagnostic criteria for RLS. Visit this web page and compare your symptoms to the crtieria.
The principal defining criteria for RLS is the "urge to move", criteria 1. If you don't have this, then you don't have RLS.
Your symptoms must match ALL 5 criteria. There are other conditions which mimic RLS.
Neuropathy and vit B12 deficiency can make RLS worse, but they are not direct causes of it.
here's the link
irlssg.org/diagnostic-criteria
Rachmaninov2 in reply to
Thank you for your informative response and the link Manerva. I am going to monitor my symptoms.
Cowbsky in reply to
I liked this! Yet it took me so many years to realize I had RLS, I see today it is so easy and straithforward recognize clinically the problem. In particular, its consequences on poor night's sleep.
I’ll update you on what the neurologist says.
Lab tests????
I only have an appointment for blood tests so far, it’s very early days for me. I only saw my GP last week. 🙂
Neuropathy symptoms usually include a pins and needles sensation, sharp stabbing pains, burning or paraesthesia, ie, partial or total numbness.
Rarely twitching.
What you describe corresponds with my experience of RLS.
It doesn't seem 100% right that this happens also during the day.
What medication are you taking for your RLS?
If, as I suspect, you're taking a dopamine agonist, pramipexole, ropinirole or rotigotine, then you may be suffering from augmentation.
The twitching may be a sign of worsening RLS, (due to augmentation).
Symptoms during the day may also be a sign of augmentation.
Let me know.
CutestDevil in reply to
Hello there, i am taking Gabapentin for now, its been few months only of my diagnosis of rls without DA meds so no augmentation yet tried Pramipexole before but had to stop it due to debilitating side effects that lasted almost 3 days on just 1 lowest dose. I don't have any numbness per se but tingling sorts yes, slight noticeable in day but effectively increases in evening. I am struck between neuropathy and RLS due to this, i don't want to go for unnecessary tests but then i need to be sure that its related to RLS . Its such confusing symptom that I can't even figure out between twiching and tingling, seems both to me, lol 🤷
in reply to CutestDevil
If you're only currently taking gabapentin, then the risk of augmentation is low.
The symptoms you originally describe are typical of RLS. Some people also describe their symptoms as tingling.
If you'd said pins and needles, numbness or burning then I might think of neuropathy.
Twitching is not included in the RLS criteria, but if you read about other peoples experience of RLS it is quite common.
I experience twitching myself.
I also have neuropathy, and I'm quite clear which of my symptoms belong to each of my conditions.
Overall, I would tend to agree with your doctor.
Naturally, if you're really worried about this then discuss it with your doctor.
I will say that usually with neuropathy you'd expect there to be some indication of an underlying cause, e.g. back pain, diabetes, poor circulation etc.
The other issue is that if you experience this at all, it suggests your RLS isn't particularly well controlled.
Perhaps then a review of your treatment would help.
As far as medical treatment is concerned, it's typical to need at least 900mg gabapentin for it be effective. Many need more than this. The recommended maximum is 2700mg
The treatment of RLS should include iron therapy if there is any evidence of iron deficiency, the main cause of RLS. Hopefully then you have had blood tests for serum iron, transferrin saturation and ferritin plus a full blood count.
A further medical consideration is that if you're taking any other medication this may be making your RLS worse. If it's prescribed medication then you'd need to discuss with your doctor either stopping the medication or switching to an alternative.
Also note that some over the counter medicines can make RLS worse, whether you take them regularly or as needed, e.g. antacids or cough medicine.
There are other non-medical factors that can worsen RLS, the main one being diet. There are quite a few comments about diet and RLS in this forum.
Hopefully you're aware that common triggers for RLS are alcohol, nicotine, sugar and caffeine.
Anxiety and sleep deprivation play a significant part in worsening RLS. Both are caused by RLS. This is vicious circle and if you suffer either then it would be good to explore ways of dealing with these two.
I hope this helps.
CutestDevil in reply to
Thanks Manerva for your such wonderful helpful information. Yes my doctor have told me before starting treatment that dosage will be increased eventually but he will be going to do that slowly since the medicine needs to taken for long time so we are not going to hurry. He have also put me on oral iron supplement eventhough i am not iron deficit, i am diagnosed having primary idiopathic RLS.
in reply to CutestDevil
Sorry if I'm giving you diffeent bits of information, all over the place.
I just hope I'm not contradicting myself!
Your doc, in my opinion is both right and not so right to "put" you (I hate that word!) on an iron supplement.
Right : there are different kinds of iron deficiency. Blood iron deficiency is only one kind. Brain iron deficiency causes RLS and can exist even in the absence of blood iron deficiency. The rceommended indicator for iron therapy in RLS is your "ferritin" level, which can be tested witha blood test.
Note that a ferritin level which is "normal" or "OK" for somebody who doesn't have RLS may not be enough forsomebody with RLS. In RLS ferritin is best at a level of 100 or more, ideally 200.
Not so good Prescription iron supplements are generally too strong. The idea behind this seems to be that the more mud you throw at a wall, the more will stick. In this case the more iron you take the more effective it will be.
The first issue with prescription iron is that it can cause serious gut problems.
The second is that how effective iron will be depends on how much of it is actually absorbed from the gut.
It has been found that how much iron is absorbed depends on a hormone called hepcidin. The main function of hepcidin in this case is to stop iron being absorbed.
The amount of iron you can absorb then is limited. So taking more doesn't necessarily mean getting more.
A popular supplement for RLS is non-prescription ferrous bisgylcinate (gentle iron).
The way to maximise how much you absorb is -
Take it in the evening
Take it 30 mins before or2 hours after eating
Take a glass of orange or vitC tablet at the same time
Avoid taking antacids or magnesium at the same time
Only take it once during any day and only every two days NOT daily. This can improve absorption by up to 50%.
Raising gabapentin dose: it doesn't make sense to say increasing the dose should be done slowly because it needs to be taken long term. This seems to be nonsense.
There is no set dose for gabapentin for RLS, it's not like a painkiller or an antibiotic. The point of taking gabapentin is for it to relieve your symptoms.
The starting dose is 300mg per day. You can then start increasing it immediately. You can keep increasing it until it works. THEN stop increasing it.
If the dose you're taking is not working, what's the point of taking it?
The typical minimum effective dose of gabapentin for RLS is 900mg a day.
"Primary" and "Idiopathic"RLS are the same thing.
CutestDevil in reply to
Thanks Manerva, your information makes sense and definitely helpful. I am surprised to see doctors don't really know much about RLS or its effective management. Will try to increase dosage and see if that helps in alleviating symptoms completely, the last time i got my dose increased resulted in brain fog so keeping fingers crossed this time.
in reply to CutestDevil
It does need to be fairly slow, so you get used to it. Decreases the brain fog.
Cowbsky in reply to
Yes, indeed, those are the culprits for me, in this decreasing order:_alchool;
_caffeine;
- sleep deprivation (vicious circle);
_ not sure about sugar and dairy products yet;
good luck
in reply to Cowbsky
Sugar is definitely a trigger.
Some people are sensitive to lactose,but not everybody.
Since around late June I've had similar feeling in legs......tingling / goosebump type sensations......which after about a month now turned into more twitching / tightness, becoming more consistent during the night......spoke 3 diff docs so far , had bloods which normal and waiting on another blood test now to check for muscle wasting.......as you can imagine my anxiety has gone thru roof thinking the worst, eg MND.......but so far docs just don't seem that bothered, doesn't help all this done over the phone......got follow up Tel appointment Friday following bloods yday so not much can do apart from wait.........I have been on Omeprazole for acid reflux for over a year which I've always been dubious about so I'm now trying to wean myself off that hoping it's something to with it......also not felt same since my CV jabs
in reply to AlexMac83
Although, obviously I'm in no position to make a definitive judgment, it doesn't sound as if the symptoms you describe are inconsistent with RLS.
It is important that you do have tests however to meet the fifth diagnostic criteria for RLS, i.e that symptoms cannot be explained by any other condition.
Assuming your additional symptoms are due to RLS then you perhaps need to teview your RLS treatment.
Blood tests were "normal". That is reassuring. However hopefully they included serum iron, transferrin daturation and ferritin.
Be aware that if your ferritin is below 100 it's possible that your RLS symptoms are being made worse by an iron deficiency. This is the main cause of RLS.
Your RLS may also be made worse by a variety of aggravating factors. The main ones are medicatoon. I note you take Omeprazole which is a proton pump inhibitor which is known to worsen RLS. It blocks iron absorption.
Let us know how your further investigations go.
AlexMac83 in reply to
Thanks for the reply.
Well bloods came back & wasn't until I spoke to 3rd Doc that she said "your iron level could be improved" as my ferritin is at 66......shame the previous two docs didnt mention that......that was only on Friday so I've started taking a multi vitamin with 80% daily allowance of iron in it since then and started the withdrawal from PPI as Acid been fine for good few months now, more I read about long term ppi use the worse info I find!
I have a lot more pins / needles , dead hands during night since I started Omeprazole right back in Sept 20 but not until late June this year have I started having problems in my legs.
Hoping it is just the PPI but we shall see, as symptoms changing all the time, like yesterday & today my left arm feels "dead" right down to my small finger, but grip and strength ok, all very very odd and dealing with the NHS a laugh as usual!
in reply to AlexMac83
OK that's promising.
Ferrous bisglycinate (gentle iron) seems to be the most popular for RLS.
Take it in the evening
Take it 30 mins before or2 hours after eating
Take a glass of orange or vitC tablet at the same time
Avoid taking antacids or magnesium at the same time
Only take it once during any day and only every two days NOT daily. This can improve absorption by up to 50%.
It sounds very much like you have peripheral neuropathy. Your GP can start to investigate this.
I appreciate your view of the NHS, but in most respects, overall, I think the NHS is quite amazing, especially in current cirumstances.
Half empty/half full glass?
I do think that since it's inception people have been misled into expecting too much of it and we should do more to care for ourselves and our "others". It's been said to me that without this, the NHS will collapse.
We are very lucky to have a National publicly funded service. If you look at (even wealthy) nations where none exist, it's a very different matter.
AlexMac83 in reply to
Thanks for the advice, I'll get some ordered and be careful with my dosage as I've started on a few tabs at the moment to try & help, magnesium been one.
Last time I had ferritin checked was Feb 20 which is when my Acid Reflux started kicking off it, so pre long term.PPI use, my ferritin was 131 then , so it's basically half that now at 66!!! Guess I just stuck on Omeprazole as acid has gone but really should try & come off drugs if not required.
Yeah I do agree re NHS , it's a magnificent thing, think my frustration is aimed incorrectly at them & not the govt that has destroyed the funding etc over the past 10 years, but hey ho less politics the better!
Again thanks for your advice & I hope I start to feel normal soon!!
in reply to AlexMac83
Wish you the best!
Yes I have that - it looks like small implosions at random places across my calves. Fascinating to watch but doesn't irritate me.
in reply to joepublic
This sounds like "fasciculations", another matter entirely.
healthline.com/health/benig...
joepublic in reply to
That's it - well done.
I used to get a twitching cheek muscle occasionally, but haven't noticed it recently since I've eliminated my rls with an anti inflammatory diet.
Wow, what's that,? never heard of it before. Did it really helped you get off the medication as well?
I discovered the cause before I even got as far as taking medication.
Lucky you, here in my case doctors including me can't figure out the cause. I am stuck with this crap syndrome. 😪
Google 'anti inflammatory diet'. They are invariably low carb and many include oxidative foods like refined seed oils.
in reply to CutestDevil
The type of RLS most people suffer from used to be called "idiopathic" which means "no known cause"
However it's usually called "primary" RSL now, as more is known about the causes. So if anybody now says to you, "we don't know what's causing it" it means they're ignorant!
There is a quite a lot of evidence now that RLS is due to a genetic susceptibilty to the condition. Apart from going to your mum and dad and handing your genes back, there's nothing you can do about it. You're stuck.
However, it isn't inevitable that everybody with the susceptibility will actually get RLS.
You're one of the unlucky ones.
It's now been shown that the most common cause of RLS is Brain Iron Deficiency, (BID).
There's also strong evidence that inflammation is a major mediating factor in RLS.
Inflammation, for example interferes with iron metabolism and can contribute to BID. It can have other effects.
Hence a major and well recommended treatment for RLS is iron therapy.
Another strategy is to reduce inflammation.
The main source of inflammation in people who apparently have no detectable inflammatory condition is possibly diet. The inflammation is often "sub-clinical" i.e. has no signs or symptoms.
The most common dietary factor in inflammation is exess carbohydrates in the diet.
In additon there may be specific proteins that different people are sensitive to, thus causing inflammation. Examples include gluten and lactose.
Any substance that causes "oxidative stress" can cause inflammation.
Hence, in terms of remedies for RLS, a low carbohydrate, an anti-inflammatory diet, avoiding food sensitivities and/or foods rich in anti-oxidants can all help.
I would add however, that diet alone is unlikely to completely control severe RLS. This does not mean it should be excluded.
Cowbsky in reply to
Great, Manerva!
My experience thus far:
_ RLS since kid (now 68). More systematic approching only after retirenment, some 6 year ago. Main drawback used to be disturbed sleep, waking me up several times at night, and preventing from back to sleep. I also have UARS (well handled these days with Bilevel CPAP);
_ along my life and career, even without knowing, benzo's (clonazepam, in special, maximum dose 0.6), in certain way, saved them both;
_ last 6 year treatmente wise: random results by/with (not at same time): (a) boosting ferritine (currently trying again; not sure if ever worked; it looks not); (b) taking pregabaline (worked out somehow, but unbearable side effects); (c) primapexole (controlled RLS, but kept me pretty much wake all night; crazy thing, never more); (d) CBD oil (great hope at the beginning, however it looks nobody knows what would be the correct dose, if it they exist at all; gave up forever);
_ today: I am doing well and able to manage RLS crysis at night, with: (1) EFT (emotion freedom technique), and other weird Psycology Energy Tecnhiques; (2) controlling diet; (3) taking 0.4 mg Clonazepam at bed time, and (4) sleeping in two phases (midnight to some 3:00 - 4:00 am; awake for some 60-90min or so, applying EFT, meditating, and backing to sleep until some 9:00 am). No continuous sleep at all, but enough to return rather good shape during the day, with no side effects. Intend to stop clonazepam 0.4 (interesting here: 0.3 does not work, nor 0.5/0.6, which prevent/disturb me from the two sleep stages - crucial strategy);
all the best and good luck to all
in reply to Cowbsky
Thanks for sharing this. That's very interesting and well done!
I did read some research I think about a year ago that said that human's sleep cycle is not monophasic as previously assumed. It's bi-phasic. i.e. two sleep periods a day, not one.
Supposedly, in the long nights of winter we can experience the two periods separately but in the short nights of summer they merge together.
However, like you, I too experience two periods, even in the summer.
Lucky I don't live in the arctic circle.
Eryl in reply to
On the point of "sub-clinical" inflammation I would say that if you're carrying an extra pound or two, and it's mainly on your tummy then the reason for that is inflammation of your gut.
in reply to Eryl
Lets not be too hasty in blaming everything on inflammation.
Eryl in reply to
Without eliminating inflammation, how can you possibly discount it as a possible cause?
in reply to Eryl
That's an interesting point. In which case you could say inflammation is the cause of every thing. Is that what you're saying?
Eryl in reply to
No, not everything, but if you don't eliminate it you can't discount it, especially in the absence of a known cause.
in reply to Eryl
That's easier to accept when you say "in the absence of a known cause".
However, it still leaves the question is everything for which there is no known cause due to inflammation?
JUST IN CASE
I have just read the comment by joepublic.
It may be that I have misinterpreted what you mean by twitching.
This is the wod rI use to describe my symptom. In my case the twitching is more o less the whole of a leg (or arm).
If in your cae the twitching only applies to a small area or the twitches are very small AND visible. Then this is more likely to be "fasciculations".
Look up fasciculation on Wikipedia. Sounds like it could be this. I had mild nerve issues/neuropathy and I also had a bit of this. Not sure if it was the RLS or nerves or maintenance the combination. However it seem to go away as my nerve problems reduced even though I still have RLS so to me it feels more like nerve related. In general doesn’t seem to be something you need to worry about too much though.
en.m.wikipedia.org/wiki/Fas...
In my case, doctor said its due to RLS only. Since they couldn't figure any reason for nerve damage in my case, they are not suspecting that with neuropathy for now but i have my doubts, i feel there is indeed some nerve issue ongoing in my legs, if this continues like this i am thinking of getting a nerve conduction test but you might be right about fasciculation as well, all these symptoms are so common in different diagnosis that even doctors remain confused.
Twitching is sent me to a neurologist. I would be sitting or lying down and I could just watch the muscles twitching bumping up and down. I described it as soda bubbles in my legs. As you can imagine I googled every horrible thing that could be causing this. Since I’ve been on medication and I would say mostly due to the iron supplements, the twitching has subsided considerably. Do you take iron? Are you on any medication?
Yes you have exactly described my kinda feeling, i am on oral iron eventhough i don't have deficiency but neurologist recommended it to take oral iron supplement once every 3-4 days, so far i am yet to observe any difference on soda bubbles sensations. I am on gabapentin for RLS for now, it does work for me.
I've had what I would describe as trembling in my legs and face when I lie down rather than twitching, although possibly that's the same thing. It's like my muscles are constantly making small movements.
Exactly that's the thing, Sue. Did you ever consulted that with your doctor? what he/she has to say?
It's a side effect of the gabapentin I was taking and of the pregabalin I am now taking.
I asked my doctor same thing, whether medicine is causing it instead, his reply was that it will go away with time, now its been months for me and i am still waiting for that time thing, not sure when it will come because this is frustrating. i feel doctors have less knowledge on RLS
This sounds somewhat like periodic limb movement disorder (PLMD) which often accompanies RLS and appears to have similar causes and treatments.
might be, but then in PLMD you usually get involuntary leg jerks which is not there in my case.
If you take gabapentin or pregabalin it would have gone away in a few weeks if it was going to. I am afraid you just have to live with it.
You are right Sue, all we can hope a permanent cure comes up for RLS in future and more solid research takes place on it. This is a very debilitating syndrome.
Benign Fasiculation Syndrome (bfs). As I've learned is what I have. Constant muscle twitching from my knees down. Primarily in my calves and feet. There's many things that can cause it. There are also cases where people have no other symptoms and have lived with the twitching for several years. Just be careful what you read online about twitching.
Been going on for approx 2 years. Been through several test. If i put pressure against them or standup and walk around, it goes away. The name is a bit misleading (Benign). Most Doctors hear that word and excuse you out their door and say nothings wrong with you. But the reality is that it often times has something underlying that's causing it. Finding out what it is, is the hard part.My symptoms have now turned to my feet burning. I also have rls but that has taken a backseat until I figure out what else is going on.
Current theory is circulation based on some recent test. We will know sooner or later I'm hoping.
Thanks for your reply, did your doctor ever hinted towards neuropathy? You are right about the online read part, that's one of the reason keeping me anxious as to what exactly is happening with with me, since i don't see anywhere written as twiching being part of RLS, it's difficult to live with something like this when you don't know exactly what's causing it
I don't think twitching has anything to do with rls, even though my Nuero once tried to tell me it was. Sadly-many Doctors don't understand rls and they especially don't understand bfs.Neuropathy was brought up as a possibility until we did an ultra sound on my feet and discovered the blood flow issues. Neuropathy could still be present but not confirmed. Either way I deal with intense pain daily until its resolved.
How long have you been experiencing the twitching?
several months like 4-5 months now, i guess its been there since before even RLS got diagnosed , but at that time sensations usually weren't that worse to bother me or just i couldn't feel them enough, but eventually symptoms started getting increased in evening and much worse in night during sleep, that's when i consulted neurologist and got diagnosed. It happens only in my both foot.
You might discuss getting an EMG from your Neurologist for the twitching if you haven't done so. I've read that rls is also under lying issue to something else? Blood test can also rule out anything like deficiency's. Neuropathy could also be causing the twitching.
And for what its worth-the 3 letter word A-- that you probably came across online is a very rare thing and requires several other symptoms that generally come before the twitching. So based on your items, I would not worry about it and move on from that. Trust me...I went down that hole like most people.
You may notice day time jerks. Please note, these motr frequently come as you recline after a meal and hypagoglic state (pre sleep) sets in. Get up or sitting with the feet on the floor tells the brain you are waking up and the jerks will go away. You may need to connvince your brain you are awake by walking or focusing on a puzzle, etc Look to iron or B-12 problems. I have this and it may be related to Fractured Myoclonic disorders. Unfortunately, little research has been done in day time jerks because the sleep specialist only want to deal with night time issues. You need to become a well informed self caregiver. Watch the tendency fo docs to load you up on opiates or another med if you have augmented.etc when they are just guessing.
I have the twitching and have been to multiple specialists. Unsure of cause, but it may be damage from statin intolerance. The bottom line is, it really doesn't matter what you call it once you've eliminated serious illness. The important thing is to try to make it the best scenario possible and get the best regimen you can for your quality of life. So, let's not get hung up on the name. Regardless, it's a miserable, horrible thing that we unfortunately have to contend with and we are all here to help each other through it!
I have restless leg syndrome some nights but constant calf twitching. Also vibrations like buzzing feeling. I started taking some b12 today to see if it might help. But twitching can be caused by anxiety and I do have an anxiety disorder.
You have same pathogenesis and symptoms like me. Even one of the neurologist i consulted did told me that anxiety can too cause similar symptoms of RLS, but i haven't personally found any data that suggest it but it might be a thing definitely
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