Mine is an irresistible sensation that causes me to keep fidgeting my legs in the evening when on the sofa watching tv; It drives my wife mad as she thinks she can get cross with me and I will stop doing it. I get no pain, sometimes a sensation in my leg bones and lately it is also affecting me sometimes when I go to bed. Sometimes I try really hard not to move them and tense my buttocks and that helps for the time I am tensing only. I am 60 years old and I first noticed this about 20-25 years ago and it is the last few years when it occurs almost daily
When I researched RLS, it described itching and other sensations I do not get, that is why I am querying it. However, on this site it seems more like it "an irresistible urge to move to stop uncomfortable or odd sensations". I am interested to hear from other people how to get it assessed and what may help me before I go insane with it
Thanks
Peter Bond
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peterbond
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Hi there i am from New Zealand my partner has RLS its worse when you lie down .magnesium helps a lot but he takes oxy sleeping pills. lorazepan. all drugs he doesnt really want to take but its hard to get relief from this terrible disease .Best you go to your doctor if he doesnt help get another opinion or specialist .Hes also a dialysis patient so hes hit hard .
i know oxy is not a sleeping pill but it will help you sleep and calm down RLS and neither is lorazepan its a calming pill .i dont know who you are but i think i have told you before about potassium and dialysis patients .we have tried and i know alot about medications for RLS its very hard to treat .
Sorry, you may have told me before. I do write to quite a few people and can't always remember who I've replied to and what I've said.
i always write with the intention of trying to be helpful.
I also try to tailor what I write to what people appear to already know. However what they know isnt always easy to judge.
I apologise if you thought I was correcting you as if I was a teacher, it stems from my professional background. I do think it's important that people are very clear, particularly about medications, i.e. actually what they are and what they do.
I do understand about dialysis and made a suggestion which I have read some research into. It was only that.
I appreciate that kidney failure is a complicated and scary situation and I would never suggest anything against a doctor's advice in such cases.
I do know that RLS is hard to treat and I hope your partner and his Drs manage to sort something out.
If you're satisfied that you and he are already sufficiently informed about RLS treatment, that's great. I'm happy that you don't need anything further help from me.
Okay sorry to sound grumpy its covid lockdown getting people in NewZealand . i thought you are the person who was allways answering everyone and has changed their name and come back .Thanks for your advice the real problem here is slack doctors in the dialysis centres .
I note you have been a member for a few years , but don't mention any treatment.
I'll therefore try to give you a brief summary of treatment.
Unfortuntately this rarely turns out brief because of the complexity of the condition.
FIRST note it's best to consult your GP about your RLS.
NOTE, however, and this is very important, your GP will be untrained about the management of RLS and will in all probability need to inform themselves. Be aware that they are obliged to do this by the Royal College of GPs.
Some attempt to by-pass this by referring people to a neurologist. There is no need for this, it may just waste time. Neurologists are generally no more knowledgeable about RLS than a GP.
There are basically two aspects to the management.
1) medical management. This aspect is well informed by medical evidence and authoritative recommendations.
2) non-medical management. Some of this is quite well informed but overall suffers from any real evidence.
Medical management consists of
1) Iron therapy
2) Eliminating aggravating factors
3) Drug therapy.
Drug therapy should be considered only if really necessary and after other options have been discussed.
IRON THERAPY Since Brain Iron Deficiency (BID) is a fundamental cause of RLS, iron can treat it.
Your GP therefore needs to carry out blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
If your GP says any of these are low then you have iron deficiency. If haemoglobin is low, then you have Iron Deficiency Anaemia, (IDA). This needs to be treated with iron. A tip on this later.
If your GP says that results are "normal". This is good, because it means that iron therapy may treat your RLS. You MUST find out what your ferritin level is and if it's less than 75 start an oral iron supplement. See tip on this later.
Iron therapy if effective can be successful for up to 60% of cases.
AGGRAVATING FACTORS are things that make RLS worse.
Alcohol, sugar, caffeine, nicotine and other stimulants can immediately trigger RLS.
The main factors that make RLS worse are other medications. Eliminating these may be all that's needed! They include
Antidepressants
Sedating antihistamines as found in neuroleptics, some cough medicines, anti-allergy remedies, sleeping aids and antnauseants.
Dopamine antagonists, e.g. some antinauseants.
Proton pump and H2 inhibitor antacids
Some meds for blood pressure, diuretics and beta blockers.
DRUGS
This is a minefield of contradictions and ignorance
The three main classes of drugs for RLS are -
Gabapentinoids - gabapentin or pregabalin.
Opioids, low potency or high potency.
Dopamine agonists - pramipexole, ropinirole or ritigotine.
PLEASE read the following links THOROUGHLY!
This could potentially prevent you being mistreated.
There is a consensus that the following promotes the effectiveness of iron for RLS..
An over the counter supplement, ferrous bisglycinate. Less than 60mg
Take in the evening 2 hours after eating.
It's widely accepted that acid can help absorb iron, hence take vitamin C or folc acid at the same time. Do NOT take an antacid or magnesium at the same time.
Some research suggests it's better to take iron every OTHER day, not daily. This is your choice.
Excellent guide-summary of what RLS disease is, its treatment and tips to cope with this chronic disease. My congratulations for the great help that your collaboration and wisdom represents for all of us. Thank you Elffindoe
Can I ask why an evening dose of iron is recommended, rather than morning? I’m less likely to remember in the evening, and also less likely to have an empty stomach, so have been taking morning iron alt days with Vit C.
The reason for this is circadian rhythms, that is daily cyclical changes in various biochemicals and metabolism.
The main issue with oral iron supplementation is that very little of what you swallow actually gets absorbed. Hence it's better if you take it in such a way that promotes, rather than prevents it being absorbed.
Iron metabolism favours absorption at night. So if you take it in the morning you will absorb less.
If you wait only 2 hours after eating, then your stomach should have emptied. You could therefore take iron last thing before bedtime.
As a general thing it's not such a good idea to eat too close to bedtime. If you mean evening snacks, not advisable either.
It needs logistics to manage RLS, it can take over your day!
If you have anything else in your stomach at the time you take iron you will absorb less. Acid helps absorption, hence the vit C.
Like myself you probably "attach" taking things to the same time as doing something else. This helps me remember. Taking SOME things with a meal works and in some cases is best.
However, this doesn't work for everything. This includes iron. I also take thyroxine which has to be taken on an empty stomach.
I also take gabapentin quite late, too late to eat.
In these cases, I have alarms set on my smartphone to remind me.
As well as waiting 2 hours after eating, hence giving the stomach time to empty, you can take something ONE hour BEFORE eating. This allows one hour for the iron (or medicine) to be absorbed.
This does depend on leaving at least a 3 hour gap between each meal. As I recently found in hospital, this can be tricky because they impose their own routine on you in oblivion to what your individual needs might be. Breakfast at eight thirty, ready or not. Given thyroxine at 10, ( 3 hours too late/30 mins too early) Lunch at 12.
This is my (sad) routine. I usually wake early, so take thyroxine 1 hour before breakfast. (Of I wake later, I have breakfast later, so no problem, I'm retired. I take some meds and supplements with breakfast. Other meds I take with an evening meal or take at 10pm with my gabapentin, reminded by my smartphone.
If you're on a lot of meds/supplements a pill organiser helps. Mine has two rows of 7 boxes. Two per day AM/PM.
You can get one's with 3 rows. I've not descended into pill purgatory that far yet.
As a fantasy, I'd like an e-pill box. You set alarms and at the right times the alarm goes off, a red light flashes on the relevant box. Then an electronic voice (stephen hawkins) says, Take your medicine now".
Honestly, I'm astonished at the amount of time and care you express on this website. Thanking you seems woefully inadequate. You listen, and are so professional, when most would not accept rudeness. I cannot take my hat off to you, enough. Thank you from us all.
I'm going to guess, based on the other group you're a member of, that you might be having a large evening meal. Hmmmm? I can't explain it, the same thing that happens to you every night while watching TV, happens to me when I have a large evening meal, especially if it's delicious, like when I eat out. My legs act up as I'm driving home from the restaurant actually, but they calm down after about two hours, maybe less. My cooking stinks, even I don't care for it, so this "large and delicious" meal effect doesn't happen that much. However, ANYTHING eaten after 10pm will give me symptoms. It doesn't matter because before I go to bed I take iron which provides me with complete relief within an hour. Lately I've been having to take more iron, but that's neither here nor there. See my profile page for more info on this treatment. Plus, numerous people on here have gotten near complete relief from the symptoms of RLS by doing a nightly fast of anywhere from 12 to 16 hours - night after night after night. One woman commented that when she stops doing this then the RLS returns in a few days. People can be different, but not by much. Maybe you can try doing this a couple times a week. Good luck and follow what other people on here say. I'm the outlier.
*EDIT: Thanks Peter, who ever you are. Your story inspired me to do my 6,251th hour of research into RLS. I think this is why my legs go crazy after a large evening meal
Sounds exactly like the “classic” RLS symptoms. As above there are plenty of things to try to help manage or avoid it. The RLS-uk.org site mentions moderate exercise and I’ve found it helpful to do something like 60 minutes walking a day. If I don’t do anything I get twitchier later. Too much exercise or too strenuous also makes it worse.
If it's any consolation, I suffer from PLMS (Passive Leg movement). Now everybody laugh, one of these days I'm going to say PMSL), I've nearly done it a few times, .....so close
PERIODIC Limb Movement when Sleeping, (PLMS), is present in up to 90% of people with RLS. Since you're asleep this is involuntary movement.
Peterbond - you may have PLMS as well as RLS, the treatment is the same, so generally there are no separate recommendations for it.
PLMS usually occurs when sleeping, so many people aren't aware they have it, unless a bruised partner tells them. Yes, you can kick them!
Sometimes, as in my case you can also get some involuntary movements with RLS when still awake. This may indicate severe RLS.
In the case of PLMS diagnosis this may only be made possible by referral to a sleep clinic. A sleep clinic can monitor various things during sleep, this is called polysomnography (PSG).
This is a good idea if there is any suspicion of any other sleep problem.
A typical sleep issue strongly associated with RLS/PLMS is sleep apnoea. This is usually Obstructive Sleep Apnoea (OSA).
A connection between OSA and RLS is hypoxia, i.e. low oxygen levels. In OSA this can be a general hypoxia detected by pulse oximetry.
OSA can lead to other health problems!
Of interest you can now get smartwatches which can monitor your sleep and oxygen levels.
Whilst on a roller.
When it comes to non-drug remedies, some people with poor circulation and possibly local hypoxia in the legs find compression stockings/devices helpful. You must make sure these are to a medical standard.
Vibration pads and some vibrators can help. one such device is approved by the US FDA, a good recomnendation then.
Otherwise, be careful, there are a lot of devices advertised with claims of being effective for RLS, Some obviously aren't. Some sound plausible. Some of these are pain relieving devices which may be successful for pain, but this doesn't mean they help RLS.
TENS is one such. any advert which claims a TENS type mechanism is unlikely to help RLS.
Hi i get this in my arms mainly right its not a pain but a sensation that makes you have a uncontrollable urge to move it. The docs and physio think its repetative limb syndrome but i get it all the time with no break unless im asleep. Im waiting for a neurology appointment to confirm or reject rls but when that will be is anyones guess. I am being treated by my doc for the symptoms not the cause so i take amitryptaline and clonazepan which reduce the sensation . I would suggest you see your doctor as there are treatments but different things work for different people and to get a proper diagnosis .
What you refer to as "repetitive limb syndrome" is probably PLMD (Periodic Limb Movement Disorder).
This could be confused with repetitive stress injury. Another matter entirely!
Up to 90% of people with RLS also have PLMS (PLMD when Sleeping). PLM when Awake is rare.
The urge to move is a classic symptom of RLS and may or may not be accompanied by a sensation. This is often described as "crawling", "ants", electric currents" etc.
PAIN is not a diagnostic criteria for RLS.
Many people experience RLS without suffering any actual INvoluntary movements. In fact, again, involuntary movements are not a diagnostic criteria for RLS.
PLMS can actually be observed. You kick!
However, in a lot of cases, as this happens when you're asleep, only others can observe it.
Since RLS as defined by the validated diagnostic criteria does not include involuntary limb movements, then it is possible to have RLS with an urge to move only.
On the other hand.
The main feature of the limb movements in PLMD is that the movements are PERIODIC. This is NOT the same as "repetitive". This means that movements occur intermittently e.g. every 20 seconds or so. There may be several movements during an episode, but between episodes, no movement.
To apply the term "repetitive" to either RLS or PLMD is not applicable.
Hence anybody who tells you have "repetitive limb syndrome" is misinforning you. As far as I know there's no such thing!
In addition, I have to warn you that this is typical of the ignorance there is about RLS by health professionals.
This includes GPs/PCPS and even most neurologists.
A GP/PCP can help manage RLS without referral to a neurologist. This commonly turns out to be an absolute waste of time.
If your GP/PCP knows little about RLS then they are obliged to inform themselves.
YOU need to inform yourself to insure yourself against their ignorance.
Your GP/PCP can diagnose your RLS. They can do this by comparing your symptoms to the validated RLS criteria. This is simple enough.
There is a link to the criteria, above.
This is your Drs first sign of ignorance.
It does sound to me you do have Restless Legs Syndrome, but no sign of PLMD. More ignorance.
When it comes to treating RLS there are first some general considerations.
One immediately obvious thing is that there are things which are well known to make RLS worse. These are called aggravating factors.
The main ones are medications given for other health conditions.
The two main classes of med that make RLS are sedating antihistamines, but especially ANTIDEPRESSANTS.
Example - amitripyline.
NOTE whatever you think now, taking amitriptyline will at some point make your RLS WORSE. More ignorance.
It's probably only the clonazepam that's holding it off. Clonazepam is neither a good long term or particularly effective med for RLS on its own.
If your Dr knew enough to properly diagnose your RLS, then they would also know that the first treatment for RLS is iron therapy.
Overall my thoughts about your case are that you are potentially heading for a total disaster with one apparently ignorant doctor relying on the judgment of a neurologist who may also be just as ignorant.
I strongly suggest you arm yourself against harm by learning as much as you can about RLS before seeing a Dr.
You can do this in 3 ways.
Read other comments in THIS POST. Follow the links to get the latest recommendations for the management of RLS. It's all there!
More than apparently your Dr knows.
Familiarise yourself with information and check your understanding.
Read OTHER posts in this forum. There is a wealth of information on here and support from people who have gone before you, have been managing RLS, sometimes for decades and have many experiences to share.
PLEASE read ALL the links that are given above and below in replies from other members.
READ, READ, READ.
Do not be angry or accusative about your Drs ignorance, this is the result of a lack of training and support for them. As I say, when they recognise their ignorance they should do something about it. Help them!
Just to reassure you. Yesterday I had to see a GP urgently. He used to be my regular doctor, but got promoted!!!
I would trust my life to this doctor and I cannot praise him enough. His personal approach, his thoughtfulnness and obvious motivation are outstanding. I would say he is profoundly ignorant about RLS!
He listens, I listen, we inform each other and make a shared decision. This is the very best I'd expect. You cannot expect a Dr to know everything.
First practical steps I suggest.
Ask a Dr for blood tests for serum iron, transferrin saturation (TSAT) ferritin and haemoglobin. Get the actual results, numbers.
If they are all reported to you as "normal". BUT ferritin is less than 75 ng/mL, then strart takung an oral iron supplement.
Unless you suffer depression or chronic pain/nerve pain, then wean off the amitriptyline, slowly, not suddenly.
For depression/pain there are alternatives.
IF You have any questions, dont hesitate to ask.
Let us know how you get on.
A final caution.
If you do have "repetitive" limb movements that are continuous for any length of time, this may be due to some OTHER neurological condition. See the fifth RLS criteria. It sounds unlikely in your case.
You MUST take control of your situation. It doesn't sound to me that you can tely on any effective help from your health professionals.
One of the great difficulties that patients with RLS face is actually getting a diagnosis for their seemingly strange symptoms.
The time taken to be diagnosed with RLS can be very slow, and usually requires seeing several different doctors. One survey of 900 patients revealed that it took about 13 years for RLS to be diagnosed; for instance the average age of onset of RLS symptoms was 40, but the average age for a diagnosis to be made was 53.
This study of a large number of patients by Professor David Dickoff, a neurologist in New York, was interesting for pulling together several other important points about RLS and the difficulty that patients have in getting a diagnosis.
He points out that perhaps we should be talking of Restless Limbs Syndrome. Focusing on the Legs is misleading when 40% of patients have arm symptoms as well at the time their symptoms start, and for 13% of patients the symptoms can begin in the arms.
72% of his patients recorded pain which included burning, throbbing, electric shocks, hot and cold sensations, crawling, aching, and other types of disturbed sensation. Most studies of RLS state that pain is not a common feature.
Professor Dickoff emphasises that although movement does relieve the symptoms, either partially or completely, this may not be immediate. More than half of his patients described pain and stiffness in the morning which took more than an hour to improve.
The survey showed a strong association of RLS symptoms with migraine and teeth grinding (bruxism); 75% of the group also suffered from migraines and 61% reported bruxism (52% had all three together).
The symptoms could be misleading enough to lead to surgery to try to relieve them; for instance, in this group of 900 patients, more than two hundred patients had knee or other joint surgeries, 65 had back surgery. Unfortunately, for most the surgery was not effective in producing relief.
The main barrier to reaching the diagnosis may be that the words used by patients to describe their seemingly bizarre symptoms do not match those that doctors are taught to associate with RLS.
This was highlighted in another research article which examined how patients tried to describe the sensations they experienced. There was no common language or experience. Patients used 62 different words and 39 phrases to describe what they felt, and a substantial number of these did not match the words and descriptions used by doctors. More common descriptions used were “tingling, burning, jittery, prickling” but other patients used terms such as “ants or coca-cola in the bones and veins”.
With this gap in communication between patient and doctor, it’s small wonder that it can take so long for the diagnosis of RLS to be made.
Pain can be a feature of RLS, although not a necessary one.
I have lost references unfortunately, but I recently read of research showing an association between musculo-skeletal pain and RLS. The pain can precede the RLS symptoms.
Note the phenomenon of "growing pains"
I also read that "somatisation" is a feature of RLS.
This needs to be discussed sensitively.
Somatisation means the experience of symptoms in the absence of any apparent physical cause. An older term for this may have been psychosomatic.
(Note some so called psychosomatic conditions have been found to be autoimmune conditions).
Hopefully the negative connotations of this don't escape you!
The dreaded "all in your mind" (accusation?) stems from this.
However quickly qualifying, a somatisation symptom does not mean there is NO problem, just the opposite.
The usual somatisation symptom is pain perhaps. However I have seen other examples, some of which can be quite bizarre. It further convinces me that RLS is a condition that needs to be approached "holistically" i.e. taking into account ALL aspects of a person's experience.
It does frustrate me that RLS is apparently isolated as a sharply defined condition with rigidly defined medical treatment criteria and now, a failure perhaps to recognise the limitations of the diagnostic criteria.
However, I recognise that in the interests of getting more immediate help to sufferers, I often make the same failure.
Elffindoe has given you an excellent response and all the info you need. Most GPs and neurologists know very little about RLS which is why members on here research so much and advise new members to do the same.
Let me give you a heads up. RLS people deal omly with sleep disorders. My symptoms started at night . Clinic definition is a start of symptoms in the lower leg to move the leg in response to those sensations. Uou do not actualy move but there is a desire to. The next is PLMD periodic leg disorder. You move in our sleeo the are leg kicks that wake your partner and not you. NO DEFINITION admit to awaken movements that also happen in the day. All this is monoclonic leg motion. Some forms of Dystonia happen duringthe day. BUT NONE start is pre-sleep dosing during the day and are confined to the lower leg jerk. Only one dose this. It is called hypic jerk and happenes just before sleep...(Like a cat leg jerk). So this in between group is calll RARE MOVEMENT DISORDERS. Advice--control thid with getting awake by waking if it occurs during the day. At night, prevent it by rubbing nd massaing and kneading the top of the foot, stroke the lower leg and press on tender points, massage and streth above and below the kne sitting andk massage the thigh. reach over head in the clapping position, trunk and neck roate and go back and repesat the lower leg routine. Then, sleep 8 hrs free of symptoms. I use Gabipentin that is not a narcotic to heal back pain nerves but it also inhibites nerves and helps seizures and RLS. I use 300 Capsules 2 at night and a TYLENOL for making the gabipinetin more effective. I a a 91 year old who was a physical /Therapist. Trust me, your docs are guessing. You have to be educated and be your own care giver. Seek knowledgeable movement specialist and then question their suggestions for any new research. THINK BRAIN BARRIER and google. Drugs like ropinrole will eventually cause augmentation(worsing_It did me). Relieve pain in the foot naturally and not as a HOP HEAD. I stand by my advice and wecome disagreements based on FACTS and this includes irrate physicians who are parrots.
sorry i answered the wrong person the only thing that calms my partners legs and body are oxy 5 mils slow release lorazepan and zopamine sleeping pills .Its a terrible disease very hard to control .i broughta book called Restless legs syndrome by Robert HEpidemic ordered on line .its full of very interesting imformation .Goodluck i am from New Zealand and my partner has Dialysis Iits an iron thing with him and fluid .
Zopamine is a common sleeping pill precribed to a lot of people in NewZealand so my chemist tells me it doesnt really work just helps you sleep a little bit . But not much you can do for RLS . He has to take a lot of pills and even a bourbon to get some relief .
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Why does my doctor not believe I have rls? Or perhaps I don't ? What do you think?
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Do I have RLS?
