Please help.. do I have RLS? - Restless Legs Syn...

Restless Legs Syndrome

14,589 members9,284 posts

Please help.. do I have RLS?

sarah19902
sarah19902

Hi everyone,

I have started to twitch, not voluntarily twitches but small spasms all over my body.. legs, arms, back, lips ears etc. It then started in my feet, and now seems to be in my feet 24/7. Often I can see the little muscles in my feet twitch, othertimes I can just feel it.

I don't know if it's restless leg syndrome and was really hoping anyone could help me decided if it is...

It is in my feet 24/7 since it all began, it is not worse at night.

I don't feel an urge to move, I feel uncomfortable because my feet are vibrating and twitching but moving does not make it any better or take the sensation away. I can feel the twitching and buzzing while walking and standing.

Sometimes it feels like my foot is cramping from the twitches.

I am struggling to sleep.

There is no sensations in my legs, only my feet.

It does sometimes feel like there are ants in my feet but I am pretty sure it is because the muscles are vibrating.

Is this RLS? I am really struggling, I need to get some help or I'm afraid for my future

71 Replies
oldestnewest

Oh and I should say when it first started about 3 months ago I would get severe pins and needles all of the time, but that does seem to be subsiding a lot

This could be any one of a number of conditions affecting your nervous system , but it does not sound like RLS.

I suggest you see a doctor, quite soon.

sarah19902
sarah19902 in reply to Manerva

I've seen a number, including neurologist they are really stumped :( I've had to resort to trying to work out what might be happening. If it was RLS would I expect it to be worse in the evening/afternoon and not constant (24/7 since it began)?

Manerva
Manerva in reply to sarah19902

It's a crying shame that DRs appear unable to help you with this.

Classic signs/symptoms of RLS are -

Crawling sensations in legs

Irresistible urge to move, which can be experienced as involuntary "twitching"

Occurs in evening only or when trying to sleep

Is relieved by moving

RLS is "circadian" related, simply meaning it only happens at particular times of day.

Some people after having taken some of the medications prescribed for some time develop "augmentatiion". This is where the sensations and twitching spread to other parts of th body e.g. arms, torso and happen at earlier times during the day.

In my experience the "twitching" consist of quite large movements, not small , localised tics or tremors.

This is why I think yiou might agree you do not have RLS because your description does not fit.

Unfortunately there are quite a few conditions that might affect your nervosu system.

If you want to try and work it out for yourself, it seems you will have to identify all of them. Then look at your symptoms to see which match closest. Then look at what investigations will help disagnose them. Then go to your doctor and ask for the investigations.

It's a bit complicated since not all the conditions which affect the nervous system are primary nervous system conditions.

Since you now say that the tremors you describe are confined to the feet you could start by looking at "peripheral neuropathy" or circulatory problems i.e. noit enough blood getting into, or out of the feet.

If the latter then yoiu could eliminate this first as there will be other signs e.g. your feet will feel too hot or too cold, go blue or pale or swell up. You can check if (heart) pulses can be felt.

quora.com/What-are-pulse-po...

There are quite a few casues of peripherakl neuropathy. First see if the description fits.

Hiope this helps

sarah19902
sarah19902 in reply to Manerva

Thank you so much Manerva, you probably have put more effort into that reply than most doctors have bothered with.

Yes, the twitches are not large movements, rather the tiny muscles in my feet twitching, often I can see them moving when i look at my feet.

Thank you for helping me, I don't think it is RLS but I wanted to seek some help from real people to see If it matched their symptoms or whether to dig deeper

Manerva
Manerva in reply to sarah19902

Some more information for you.

Neuropathy can affect different nerves. Sometimes it’s sensory nerves, sometimes motor nerves and sometimes both.

Twitches are consistent with motor nerve neuropathy. If you have sensations as well e.g. pins and needles or numbness then it could be sensory as well.

Assuming you have no other symptoms you are worried about anywhere else

If this IS neuropathy, I’m NOT a doctor and cannot make diagnoses then it could possibly be caused by

Diabetes

Liver disease

Kidney disease

Low levels of B vitamins, especially Vit B12

Damage to nerves

There are other causes which might be less relevant.

I’d say damage to nerves is unlikely, because the problem would be quite localised and typically affect one side of the body, or one side more than the other. Additionally, it wouldn’t affect you all over as you said it started all over, not just your feet.

If you were suffering Diabetic neuropathy you would have other signs of Diabetes.

However, the first 4 causes I’ve listed can simply be tested by blood tests. Have any if your doctors carried any out?

It could be something else other than peripheral neuropathy and that would a central nervous system condition. But that’s a whole other area

sarah19902
sarah19902 in reply to Manerva

They have tested my large fibers and there is no damage. I was low in iron, but that is all corrected now. I am fine for vitamin B12 but am still supplementing. Blood sugars are fine and no sign of liver disease

Manerva
Manerva in reply to sarah19902

Then to eliminate neuropathy entirely you perhaps need a renal function blood test. An electrolyte imbalance can affect nerves. However in this case you might experience palpitations and difficulty breathing.

It's sounding like the fasciculation syndrome others have mentioned.

sarah19902
sarah19902 in reply to Manerva

Thank you Manerva, virtual hugs to you... like I said, you've been a better help than any doctor I've paid $$$ to see

Hidden
Hidden

Hi Sarah! The questions listed on the first website and the symptom checker on the second should help you determine if you have RLS or not:

sleepfoundation.org/restles...

rls-uk.org/diagnosis

sarah19902
sarah19902 in reply to Hidden

Thanks Sails, these questions have confused me in my research as I have some of the symptoms and then none of the others.... for example I have twitching and vibrating feeling in my feet but no urge to move them, I can lay still for hours with them twitching. They are not worse at night, they never stop

Hidden
Hidden in reply to sarah19902

Hi again! The primary criterion for RLS is the urge to move, so I think RLS is out (good news since it’s Hell to have, bad news since your mystery continues)

Hey Manerva: do you think Sarah’s symptoms sound like PLMW?

(Sarah, this stands for Periodic Limb Movement in Wakefulness. It is similar to, yet different from, RLS. )

Manerva
Manerva in reply to Hidden

Hi Sails, I don't think it's that either. Partly because about 80% of PLMD (Periodic Limb Movement Disorder), sufferers have RLS and it's rare to get PLMD without RLS. Either Wake or Sleep

Plus Sarah originally got the tremors in lips and mouth and they're tremors not the gross kind of limb movements you get with PLMD

Sarah's description of her symptoms are similar to those described in a post from another member, possibly the same problem.

sarah19902
sarah19902 in reply to Manerva

Hi again, would you suggest I start taking a RLS medication to see if it stops the sensations? That way I could confirm if the additional pin and needle type feeling in my feet only are RLS

Manerva
Manerva in reply to sarah19902

Hi Sarah, you've had lots of replies on this now and it must be getting confusing because some of the people responding have not read everything you've said or what others have said.

People's experiences of RLS do differ and the words they use to describe their experience is different and I feel you're trying to "fit" your experience into RLS.

As quite a few people have now said, your description does NOT fit the classic signs of RLS and I agree, you do not have RLS.

To try RLS medication you would need a doctors prescription. To get a doctors prescription you would need a doctor to diagnose RLS. You have already seen doctors and they haven't given that diagnosis. So I doubt if you could even get the medication anyway.

My suggestion is that you accept, you do not have RLS.

I'm sorry, this particular forum may not be of any help to you, we are not doctors only people who are here because we have RLS.

A couple of people have suggested you might have Fasciculation syndrome, which sounds more like your description. Perhaps you should explore that.

sarah19902
sarah19902 in reply to Manerva

Thankyou Manerva, you're correct in that I am getting quite confused with some people saying it does sound like it and others saying it doesn't. I really do appreciate your time. It has been a very rough time for me as I have not had a lot of support and nobody to turn to. One doctor even told me there was no point in returning to them as they were out of ideas.

Thanks again

Manerva
Manerva in reply to sarah19902

You might find this web site informative

medicalnewstoday.com/articl...

It seems your doctors have eliminated other possibilities. Since the condition is rare, they may have never encountered it before.

I have experienced this myself many times. For me it lasts, at most for 2 or 3 weeks.

sarah19902
sarah19902 in reply to Manerva

It does sound like it. It is constantly twitching in my feet. I wonder if you have any recommendations on sleep medication? I am really struggling to sleep

Manerva
Manerva in reply to sarah19902

Sorry, I'm not a doctor and I don't recommend medication as the first thing for sleep problems.

You might find this link helpful

sleepfoundation.org/article...

I've also read that the herbal remedy Valerian is quite good.

One more important question which could help me, does Rls develop instantly? I was fine one night, the next my feet started twitching and vibrating and since have never stopped, it's never a worse at night time problem

Manerva
Manerva in reply to sarah19902

Hi again, see my latest reply.

RLS doesn't start suddenly and your symptoms do not match.

nightdancer
nightdancer in reply to Manerva

The only time it CAN start suddenly is if you start a new med and it is one that will trigger RLS, even if you never had it before. That is why I said that we can tell in 5 mins from someone's med list and 90% of the time, we can see it right away, if we know the list, and I can recite in my sleep. :) But that is the only way RLS can start suddenly.

Manerva
Manerva in reply to nightdancer

Thanks for that

NOPE, see my other replies. I gave you alot of info. :)

Hi sounds like Fasciculation Syndrome x

Jelbea
Jelbea in reply to Pippins2

Hi Sarah19902. I agree with Pippins 2 about fasciculation syndrome. For years I have had this in my calf muscles, eyes, lips and scalp. It first started with numbness in my jaw and I became quite upset by this because the doctors did not seem able to diagnose this. They thought I had trigeminal neuralgia and gave me gabapentin which triggered migraines which I had never had before. Unfortunately all the worry can make the fasciculations worse. The more I worried the more my muscles twitched. I have had restless legs all my life as well and there is quite a difference between the two conditions. I am going through a difficult patch in my life at present and the muscle twitches are back with a vengeance! During last night I was lying feeling the twitching muscles down my legs for ages and eventually they improved only to be replaced by RLS. What a night!!! Three hours sleep towards morning so it could have been worse.

I hope you can find out what is the matter as not knowing is difficult. I will be thinking of you and hoping you get help.

sarah19902
sarah19902 in reply to Jelbea

Dear Jelbea, thank you so much. Have you found the fasculations to ever subside? They can hurt quite a bit when they don't stop. They started after a very stressful part of my life. I cannot say.how much I appreciate every one in their help.

Jelbea
Jelbea in reply to sarah19902

With me the fasciculations go completely from time to time - perhaps months - but always return mostly at a time I am stressed. The feeling is not unlike RLS and can feel "creepy crawly" but standing up and walking around does not help like it does with restless legs. When it affected my scalp I was imagining all sorts of terrible things!

Perhaps you could explain all this to your doctor now that everyone here has made suggestions. I have never had any treatment for it as once I had an explanation I stopped being so wound up by it and was able to relax more.

All the Best and let us know how you progress

Manerva
Manerva in reply to Pippins2

It does!

You say it only started 3 months ago. When RLS starts suddenly, we would normally look at the med list you are on, since if you start a new med, that can suddenly trigger it if it is on a long list of meds that can make existing RLS worse. So, if you started a med , from one of several categories, that could be why. That is our first place to go. RLS is the URGE to move that you cannot ignore. The 5 steps of diagnosis all include the URGE to move and believe me you will know it. RLS is not pins and needles. Did any of the doctors say anything about taking meds that might exacerbate it? OH and you said you can see muscles twitching? RLS is not muscular, it is movement related neurological sleep disorder. The reason why symptoms are worse in the evening and night is because our dopamine levels drop. Here is the diagnostic criteria- rlssg.org, which is a group of doctor who ONLY deal with RLS and I know some of them. You have to have the five steps that they list. If you can actually see your muscles twitching, THAT is not RLS. But, it can be many other things. Are you on ANY meds for the RLS?

Hi! I take no medications at all. Not even birth control. I can often see the muscles twitching, not always but a lot of the time. It is largely either a feeling of pins and needles, twitching and maybe crawling in my feel but again, I don't feel an urge to move and there is no worsening during parts of the day night. IT also started instantly and has never stopped since, it is not something I've noticed for years.

Well sometimes I want to move my legs because I get sick of the feeling but moving them does not make it any better, for example I can feel the twitching and vibrating while I am walking.

Hi Sarah. I would say 'no' not RLS.. RLS is diagnosed by the uncontrollable urge to

Move your legs, the sensation for me feels like a million ants crawling under my skin, up and down my legs. The most horrible feeling ever!! I'm not sure what you have but would definitely see your Doc. Good luck x

HI Jodelights, I mean you could describe it as ants crawling in one of my feet, but it's never in the legs. I would say it feels more like a cell phone vibrating. While I can't always see the twitching of the little muscles in the feet often I can but the vibrating sensation is always there. It also feels like pins and needles often. Would this match your description of RLS? It also came on instantly about 3 months ago and has never stopped. I had nothing prior to that and I have started no medication

Elisse2
Elisse2 in reply to sarah19902

sarah does this sound anything like you are experiencing click on the link. medicalnewstoday.com/articl...

It doesn’t sound like RLS to me. I advise that you see a GP & explain your symptoms & ask to be referred to a neurologist.

It may be. You need to see a doctor to be sure

sarah19902
sarah19902 in reply to slim1953

Hi, I have seen two neurologists already, hence why reaching out to the kind people here

Sounds like it to me- perhaps have a chat with your GP see what he/she says

sarah19902
sarah19902 in reply to Sara_2611

I tend to agree with the other replies, since it came on suddenly, and has never stopped, and I've not started any other medication. I clearly have some neurological issue going on but two neurologists are unsure :(

Hi Sarah - your body may be short of Magnesium I swear by It when my twitches start I take a 375 Mg Magnesium Tablet and 20 mins later I am fine, definitely worth a try. :))

Sounds like you need to see a GP and be referred to a neurologist, if possible. It could be that you have a deficiency that can be addressed, and you could be put on supplements that will relieve the problem.

I have RLS that feels like an electrical current is running through my legs and an electrical charge is building up in my leg muscles, and only kicking my legs around can relieve the discomfort as it builds to unbearable until I do. It doesn't sound like you have the same thing as me, but you do seem to have a neurological problem.

I have found that a daily, massive dose of magnesium has made a world of difference to me, not only in relieving the restless legs but other involuntary muscle spasms I have such as in my jaw. All of my front teeth are cracked and/or chipped, because of this. I used to wake in the night with chips of tooth enamel on my tongue.

Others here seem to have an iron deficiency, which has been treated with supplements. You won't know for sure until you have seen some medical professionals who can, hopefully, diagnosed and treat the problem.

Good luck with getting the help you need.

PS: you mention 'pins and needles'. Is there any numbness? Balance problems? Vision problems? New problems with thinking and cognitive function? If any of these things, get to a GP NOW! I don't want to say any more at this stage, as I don't want to alarm you.

I know, it's pretty scary and the neurologist are quite concerned. I've already seen a lot of doctors may I ask how much is the massive does of magnesium hat you are taking?

There is occasional numbness. My feet can go completely numb now, which didn't happen before all this started :/

Please see a neurologist, and get some tests done for neuro conductivity. The reason why I'm so alarmed on hearing this is because you are displaying the classic early signs of multiple sclerosis. I'm sorry to be so alarmist, but you must have this checked out and start any treatment program there might be, if I'm right. My sister had an aggressive form of primary-progressive MS, so I have learned a bit about it. I so hope I'm wrong :'(

PS: I don't know if this will help under the circumstances, but I take 1.5 grams of magnesium daily.

I may be wrong, and I hope I am, but you need to have tests at least to rule out MS. Here's a link that might be helpful: mssociety.org.uk/about-ms/s...

Sandee007
Sandee007 in reply to sarah19902

How are you...? I have the same things going on. Fasciculations all over the body.

Already 2 years and numbness foot and balance problems...

Also been diagnosed with restless arm and legs syndrome.

I have no MS-ALS or Parkinson. Did also lots of blood test-hormones-ruled out all cancers etc...

At the moment I have cramping off the tongue a lot and sometimes my speech is a little bit strange...SOMETIMES letters are missing,but only sometimes...maybe B12 problem,I don't know it anymore...

Anyone here who has this ...a restless tongue???

Thanks and take care!!!

sarah19902
sarah19902 in reply to Sandee007

Hey, I don't think the twitching is RlS, which I've gathered from the kind people on this forum. I can see the majority of my twitches which is more bfs than rls. I often get pins and needles. Have you found anything to help? Did the twitching improve with time?

Sandee007
Sandee007 in reply to sarah19902

It's more like hotspots...one day it's all in the face-then the other day in the legs-then arms and some days are soso...

Also alcohol makes it sometimes better but the next day worse???

I never drank alcohol but since I have this I drink one wine a day, not at the weekends ,only during the week...

My biggest fear is just that I have the FEELING that something WORSE is yet to come because I have a lot of trembling on my lips when laughing... (tension feeling face)

Also I have a BIG problem when I stretch my muscles...(holding hands up and laughing) that's when they tremble most.

Do you have a lot of muscle pain or strain?

I do..., I have to stretch a lot...

arms -lips, back & ears? Ive not heard of it being in those parts of the body. Going by similar symptoms of my fellow friends who are also sufferers it seems that way. But as I'm not a doctor perhaps I could suggest going to see your doctor & talk to him in detail about your symptons & see what he diagnoses

Hope it helps -regards sara_2611

Hidden
Hidden

Hi Sarah, I scrolled through all the replies to see if anyone left you a link to patientslikeme- patientslikeme.com/ This is an interesting site you might consider joining if you can't find answers on your own. They are keeping a database of members and their symptoms. It's an interesting concept- people input their symptoms and what they've tried for treatments, then what actually works for them. Might be worth a shot to join (it's free) and see if your symptoms are common to anyone else on there, then how they've been diagnosed and what works for them. I joined for awhile just to see how the site works. It takes some time to input all your info, but it might be worth it for you. It might be a neat way to work around the medical system which is often pretty much clueless, particularly as their database grows. Hope you find your answers!

Hidden
Hidden

Another thought- if it is indeed muscle twitching and even cramping there could be a calcium and/or magnesium deficiency in play. I'm coming to the conclusion that diet should be the first line of defense and offense for any condition. I saw in a book by Ted Morter MD quite some time ago that everything your body does is a reaction to what you've put in it. A low carb high fat (LCHF) diet (Keto, low carb) is proving to help a lot of people with a lot of conditions, and all the carbs we've been eating all our lives is being shown to be at the root of most of our chronic disease trouble. Not that you have chronic disease, but carbs are pretty much slow poison, since they keep your blood sugar and insulin levels elevated full time, and they are both hard on your body, and destructive over time. I know changing how you eat is drastic to most people, but it all boils down to how desperate you get!!

If there's any way you can find either a functional or integrative medicine office, they can run nutrition panels to find out where you're deficient and you'd have a better shot at actually getting answers. If you decide to try calcium and magnesium supplements, use the citrate form since they are more absorbable than that other stuff.

I have severe RLS and this description does not sound like RLS. Not sure what it is. My RLS is really the urge to move my legs. It can get in the arms and trunk when really bad. But its always an urge. Upon exercising the urge it is relieved during the movement and returns shortly after the movement stops.

Hello everyone, so it's been about 9 months now. The physical fasculations have stopped but there is still a constant vibrating feeling in my feet all day everyday.

Now I notice sort of surges of electricity/energy in my legs. It will only last a second, stop and then maybe start again an hour later.

No doctor yet knows what to do.

Is RLS described as small surges of electricity in focal parts of the leg? Or again is this more likely nerve irritation?

Guys another thing it feels like is my hair on my legs is standing up. Is this a rls symptom? I will mention again that it is 24/7 since it began. There is no improvement or increase in symptoms at night, ever. I honestly have no idea what I'm dealing with nor do three neurologists I've been too...

This is not a feature of RLS sarah19902

My neurologist based on the symtoms presented has diagnosed me with restless leg syndrome and prescribed a dopamine drug

As everyone is debating my diagnosis of RLS, which I too am, can someone comment on how quickly I would expect mirapex to provide relief if it is RLS?

Should it be days after taking the tablets or should it be hours after the first tablet etc?

Would appreciate as many responses as people as willing to give. So much thanks in advance

When I took it, first dose.

Do you mean you had instant relief? I've had no relief after 2 hours.. 0.375 extended release

Mine wasn’t extended release, but I took it in the evening and had a good night from 1st dose (until I augmented 😬)

I'm very worried about augmentation. This is more an experiment to see if I do respond. Then I plan to try gabapentin if it does respond. I'm not sure how long to give it before I can expect a response though? Is mirapex expected to be an instant medication or more like gabapentin which takes a few weeks to work? Thanks for replying

It shouldn’t take weeks, when she prescribed it and I asked the question she confidently said “1st night “ for me she was right.

Your symptoms don’t sound like RLS and if you don’t get a quick response to a dopamine agonist I guess that would prove it

Thank you - yes, this is the best way to rule it out for me.

Good luck, sounds more like peripheral neuropathy of some kind to me. I don’t have time to wade through all the previous responses...I’m sure someone else will have mentioned this

Elisse2
Elisse2 in reply to sarah19902

Mirapex works straight away, you should get a good nights sleep from the first dose, It doesnt take weeks to work. You can augment after a several weeks or months or years of taking it. Give it a week of taking it just for your own satisfaction on your experiment.

sarah19902
sarah19902 in reply to Elisse2

Thanks Elisse2, so youd suspect mirapex to work after a few hours of taking mirapex? Thanks for your advice, hopefully this will put it to bed once and for all so the neurologist can persue another line of investigation.

So it's been six hours and no effect. All sensations remain, maybe even stronger than normal. I also am not able to get to sleep. Dost people respond to mirapex?

You may also like...