Anyone here with RLS in arms-torso an... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone here with RLS in arms-torso and mouth? Please reply!

Sandee007
Sandee007

My neurologist said I have RLS but I am getting restless feelings during the day in my mouth (like a restless tongue and a little tremor or shakyness) then my mouth goes numb. Same thing with my arms...I get cramps then numbness...

Mostly I need to move or stretch my hands and legs but I don't understand my mouth-problem...if I laugh and stretch my mouth it's shakes a bit every time.

Anyone here has this too...?

43 Replies
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Hi Sander, no, sorry, fortunately I have not.

I have seen and read you earlier post and was wondering, did anyone ask you about what medicines you take? That may be important as quite a few may induce RLS or make existing RLS worse.

I saw that you are from Belgium. If English is too complicated or demanding, please write me a pm in Dutch if you’re Flemish, or in French if you Wallon. I am from The Netherlands and I lived in France for a while and I can still read French (writing will be harder). Your English is fine and clear by the way.

Sandee007
Sandee007 in reply to LotteM

Any language will be oké..prefer english or dutch...

Ik neem geen medicijnen soms een zwakke pijnstiller om te slapen...

Begin stilletjes aan radeloos te worden omdat ik dit al 2 jaar heb en moet steeds 3 maanden wachten voor afspraak neuroloog of voetspecialist.

Mijn grootste angst is gewoon dat ik een andere ziekte heb en ik krijg steeds meer symptomen vandaar en ook gaat het niet weg. Heb meestal 3 maanden last en dan ben ik weer in orde en dan komt het terug. Lijkt op Ms of P maar neuroloog zegt geen MS of Parkinson vandaar...

Hij blijft bij RLS,de vraag is of dit het wel degelijk is omdat ik veel schouder-en rugklachten heb. Heb ook de diagnose chronische veneuze insuf. en vernauwing rug dus...

Mijn klachten zijn vooral:trillende handen na inspanning-interne vibraties,rusteloze armen en benen alsook vaak krampen,voeten wattengevoel en stappen voelt soms raar alhoewel ik dagelijks 1 uur wandel. Sinds vorige maand raar mond-tong gevoel:doofheid-licht trillen van tong...

Mijn linkerbeen altijd kuitproblemen alsof de spier te kort is waardoor klauwtenen.

De stress helpt natuurlijk ook niet,hé...

Als ik alles mag samenvaten heb ik vooral last van een ZWAAR ONRUSTIG GEVOEL van binnen dat hem zet op de armen-benen-tong-schouder...

Misschien heeft u wat tips?

Groeten en bedankt!

Sandee

Manerva
Manerva in reply to Sandee007

Hello again. I notice that you have posted before at least three times and are seeking an explanation for your various symptoms

With respect, myself and others have already told you that what you have doesn't sound like RLS and we have suggested you need to see a doctor.

There are no doctors on here so nobody can give you a diagnosis.

Sandee007
Sandee007 in reply to Manerva

With all the respect to you and everyone here...we always have to wait 3 to 6 months for an appointment so ...takes a long time to see a doctor here!!!

I am coming here because I just don't know it anymore...

And knowledge is power!!!

Manerva
Manerva in reply to Sandee007

I will send you a personal message as I think you are in danger.

Alison7
Alison7 in reply to Sandee007

I thought this site was for support & friendship & passing on information or advice & am happy for you to ask what you would like to. There seems to be a shortage of neuroligists throughout the world.

I am actually a retired dr but obviously not in the position to give you clinical advice.

I too would wonder if you are taking any other tablets which can cause this. I know of 1 type which can including tongue.

I have severe rls & it does affect my arms & torso sometimes & even my head but not my tongue.

I have a peripheral neuropathy though which is unrelated but can make rls worse. It affects some of my cranial nerves and does affect my tongue but just to make it numb at the front.

It is possible to have more than 1 condition at a time.

I would ask for another neurology appointment & some more investigations if you can & a review of tablets if relevant.

jennymsolo
jennymsolo in reply to Alison7

Hi, Doc. I read your reply to Sandee007. I have MS, trigeminal Neuralgia and RLS. Her symptoms sound familiar to me because I have myclonic tremor. I think what I've been thinking was RLS in my shoulder and arms has been the myclonus. I plan to discuss this with my neurologist. I agree she needs a workup but meanwhile I wondered if you have an opinion on this.

After living with MS for 30 I'm starting to think I need to make a health resume, I have so many symptoms haha!

Thanks in advance for your reply.

Alison7
Alison7 in reply to jennymsolo

Hi jennymsolo,

You do have a lot to contend with don't you. In my experience neurological symptoms can be very hard to unravel and I was a GP and not used to unraveling them but just recognising when a referral to an expert neurologist was appropriate, so I'm sorry but I can't offer an opinion and also one doesn't actually come to mind.

I am more happy to offer opinions when I have personal experience of symptoms ie from a patient's perspective, maybe with a wee bit of knowledge thrown in though I have often observed that many on this site have more knowledge about RLS than I do and I have learnt from them.

But yes, I would ask for a neurology review or at least a specialist nurse practitioner review if you are in the UK. These specialist nurses are usually well trained in their field.

I'm sorry that you have MS and all these symptoms. It can't be easy.

jennymsolo
jennymsolo in reply to Alison7

Oh, no problem. I'm in the US. Our medical system here is an enormous mess. Tons of Americans are going to Mexico and Europe to have surgery and dental work because the prices are totally outrageous here. Most people have terribly inadequate care because the people in the system are corrupt, including the Giant Orange Buffoon in the White House and his administration.

That's another subject for another day. But do please tell your friends that most of us can't wait to be rid of him, and the majority of us are far more intelligent than the neanderthals who voted for him. We feel like a laughing stock to the people in countries outside the US.

Thank you so much for your reply 🙂

I totally agree with you regarding that lying, narcissistic evil orange man!

Sandee007
Sandee007 in reply to Alison7

I will do that,only thing I am taking is dafalgan Codeine for 3 years now,but only half of it...

Thanks! You are all so kind and I think it is fantastic to get new ideas and info...

Alison7
Alison7 in reply to Sandee007

I know what Codeine is but not dalfalgen codeine. Codeine itself as far as I know does not cause tongue symptoms. as we've said a neurology review would be wise.

One thing I would say, which shouldn't need to be said though sadly it somehow needs to be from my experience, is try to find a way of making sure whoever sees you actually listens to what you are describing and doesn't go along with preformed misconceptions of what is going on. I have seen Drs so often make assumptions that aren't correct. I have never understood why, as listening with an open mind is their best chance of getting it right and I've never understood why not all seem to want to. If you don't feel you're being listened to then try to find a way - though I don't find that easy even as 'one of them'!

Sandee007
Sandee007 in reply to Alison7

To be honest...a lot of doctors DO NOT LISTEN...because they need to check you in 10 minutes or so...and we have to wait 3-6 months when they can see us and we have to pay a lot! It's not fair. I only go to a doctor if I have a REAL problem so I am very grateful for the people here that give me some advice. I know I am not alone and some people here have even more problems then I...

Time will tell....have a nice day and thanks for the info!

Manerva
Manerva in reply to Alison7

I've found that doctors make assumptions based on the labels on things, like doors or badges for example. Go through a door labelled "Sexual health clinic" and describe your symptoms to a doctor labelled "Sexual health specialist" and you get diagnosed with " Non specific urethritis".

Go through a door labelled "Urology department" and see a doctor labelled "Urology specialist" and describe the same symptoms and you get diagnosed with "Prostatitis".

Go on an online community labelled "Restless legs syndrome", read someone's description of their symptoms and see them as suffering from RLS.

I don't think it's just a matter of preconceptions, it's also a matter of context.

RLS is one label, what if the label were "kidney disease" or even "mental health problem", how might this affect the diagnosis?

One way of deciding what's the right diagnosis is to treat it the most likely diagnosis and see if the treatment works. Then if it doesn't try the next treatment. Trouble with that is, what seems most likely to one, might differ from another. It needs a cross disciplinary approach. It could also waste months in mistreating a condition. No to mention the unnecessary iatrogenic effects of the mistreatment.

Best to get all possible information you can. Which in respect of this community probably means reading all a members posts on all their threads.

It's not just doctors though.

As for "listening" , how often do people say they're not being listened to, when really it's just that you don't agree with them or you don't do what they want you too.

Yes, it's good to be listened to, and it's good to listen but that doesn't mean you have to automatically agree with someone or just do what they want.

It's a tricky world we live in, smoke and mirrors.

Hidden
Hidden in reply to Manerva

Hi Manerva! I agree here. It is very complicated.

I have never heard of such a thing let us know what you find out that does not sound like restless leg syndrome

Sorry to hear you are dealing with this. I too have these symptoms. When I was first diagnosed, they were unbearable. I take Gentle Iron,magnesium up to 600 mg a day, Curcumin is also important for inflammation. You can search to see what supplements to take. You may want to have your Thyroid levels checked, as mine were hyper or too low.

Hi Sandee007- Ive never heard of it as being in the mouth or arms

Sara, yes many people experience RLS in their arms and sometimes also their torso.

Ok Well I've learnt something there maybe called R.A.A.T (Restless Arms and Torso) (as opposed to RLS

Have you spoken to your doctor to see if there is anything he can do

I am not a doctor but I definitely would have my B12 levels checked. It is easy to become B12 deficient. Even if you only eat grass-fed organic meat you may not be able to absorb the B12 attached to animal protein. ... The Framingham Offspring study found that 39 percent of the general population may be in the low normal and deficient B12 blood level range, and it was not just vegetarians or older people. Numbness in the body is a symptom and it may effect your tongue.

"Additionally, some people with a B12 deficiency may experience other oral symptoms, such as mouth ulcers, feelings of pins and needles in the tongue or a burning and itching sensation in the mouth (15, 17)."

strange sensations, numbness, or tingling in the hands, legs, or feet

difficulty walking (staggering, balance problems)

anemia

a swollen, inflamed tongue

difficulty thinking and reasoning (cognitive difficulties), or memory loss

weakness

fatigue.

Not saying you have B12 deficiency - just worth getting that eliminated as a cause.

healthline.com/nutrition/vi...

Sandee007
Sandee007 in reply to Goldy700

Thanks for the reply...

I have RLS in my arms and legs. I've never heard of it affecting the mouth tho. I hope you find relief.

Hi, l totally agree with the other posters that you ought to see a doctor as soon as you can. I had a period a few years ago when my RLS which normally only affects my legs changed it’s normal pattern following my doctor changing my medication following augmentation.

I developed symptoms in my arms and torso which were both distressing and frightening. Also on occasion l would get the same symptoms present as a sensation in my face and head. It was not constant, more of a sudden rush that would eventually subside, but l definitely experienced it.

I cannot say l noticed it in my tounge, but definitely across my cheeks and inside my head, if that makes any sense. The head/facial thing did stop in time, but the RLS in my torso and arms has remained.

The one thing we know about RLS and it’s treatment, is that no two people are the same.

I hope this helps ease your worries a little, but please do seek further medical assessment.

We are experts by experience only and cannot diagnose, but as far as l am concerned, if you need to post on this forum for support and most importantly the understanding of those who know what it’s like to live with this debilitating and misunderstood condition, please feel that you can.

Regards

Thanks for the help and advice, I am seeing several doctors but keep in mind please that every time I have to wait 3-6 months that is why it takes so long to be exact sure of what is going on...Also for MRI-SCANS etc we have to wait again a few weeks...

Do you sometimes feel spastic in legs when walking because that is my biggest problem at the moment....

Hi Sandee07 my heart goes out to you I have it my legs and arms !!! When my legs start it helps me a lot when I go on my exercise bike but when the arms start( which is to often for my liking ) there is nothing I can do about it,so the thought of what is happening with your tongue on top of that is terrible I really hope you get some help please keep us all posted on your progress

I too have whole body symptoms. Legs, torso, arms, neck, face, and sometimes tongue. I am currently in the care of one of the top neurologists in the world and who specializes in Restless legs and has a movement/sleep disorder specialty practice in Houston with two other neurologists. His name is William Ondo. He co-authored an article along with several other top neurologists that was published recently through Mayo Clinic. A link to this fabulous article was given recently on this site. The article was concerning the administration and potential for long term management of Restless Leg with a low dose of Methadone. Please research. It is very promising to those of us who suffer so severely. You are not alone and there are neurologists who are knowledgable and helpful. And yes, it may be that your current combination of meds may be aggravating your symptoms. Dr. Ondo currently has me on a large dose (400 mg.) of pregabalin. It is giving me 5-6 hours of uninterruped sleep so far but he has said the next step would be the low dose methadone. I’m trying to hold off on that because it is the last option available. But I'm praying that when/if I get on the Methadone it will be a long term management for me. Blessings to you. You are not alone.

Sandee007
Sandee007 in reply to Lolly53

Thank you very much for the advice..keep me posted about your situation please!

Sandee007
Sandee007 in reply to Sandee007

Do you sometimes feel spastic in legs when walking because that is my biggest problem at the moment....

Yes! I was told that the mouth problem was anxiety. I have had the restless arm and shoulder but both those seem to have died down now that my neck problem had healed.

Thank you very much for the reply!

Hi Sandee

I am sorry you have to wait up to 6 months to see another neurologist.

I had RLS everywhere including my face during withdrawal from dopamine agonists but once through withdrawal I now only get it in my legs and very rarely my left arm.

As I have said to your previous posts, it doesn’t sound like RLS. I have MS as well and some of your symptoms sound like MS spasms or clonus but the other symptoms are not familiar.

I would say it does sound neurological and you need to see a movement disorder specialist, as there is clearly something other than RLS going on.

Keep a daily list of symptoms ( and times) and also list all your meds. Note if any food or drink make a difference.

I note you have had an MRI- that is sure to be repeated.

I hope your specialist can answer your questions but I honestly don’t think it’s RLS.

Sandee007
Sandee007 in reply to Joolsg

I had 2 mri's brain and 2 scan and ct-scan also brains and spine. Neurologist said no MS for sure and no ALS or Parkinson.

However you only know if you have Parkinson after a Datscan and some rigidity-slow movement and resting tremors...

I also do not have Lyme disease-cortisol is good and pituitary is also not the problem.

Been checked also for ovarian cancer and everything was okido.

As you can see I did a lot already (B12 is normally also good)

Only thing that I can see on blood-test is that my electrolyte's aren't good.

Calcium high,6. And prolactine very high,that was about ,130.

Thanks again and I really hope you are getting better.

Just one question: What is your future with MS? Do you have a good life for a long time or do you suffer a lot?

Beste wishes to you and your family...

Joolsg
Joolsg in reply to Sandee007

My MS is controlled by excellent drugs and I can honestly say my MS is nothing compared to my RLS. I can’t walk far, have numbness all over my body and fatigue etc but MS research is so brilliant these days that the aggressive drugs stop disease progression.

Hopefully RLS research will improve in the same way.

Neurological disorders are incredibly difficult to diagnose but I am sure you will find a neurologist who will identify what is causing your complex symptoms.

If they have ruled out MS, ALS then at least they are doing all the necessary tests.

Good luck.

I have RLS in my legs, shoulders and upper arms. The only relief is to try and place my body weight on my shoulder - which can only be accomplished one side at a time. Valium is helping somewhat.

Hidden
Hidden

Hi Sandee!

I also have it RLS in my right arm, back, and sometimes my face. My attack of the arm looks pretty painful to an outsider (but then again, when are RLS attacks not painful-looking, right?). I stretch the arm in ways that one is probably not supposed to stretch it and, if my husband is with me, I tell him to take my hand and pull me towards him as hard as he can. If I am in a car I have to put my wrist through one of those hand rests on the ceiling and really pull so that it stretches to the maximum. It’s really exhausting, so I’m glad that my arm movements rarely get to flailing point (my arm moves quite frequently, but the movements are seldom strong enough to be seen by others).

The back and face movements feel like strong vibrations that last for short periods at a time. I sometimes get numbness in the cheeks and the nose. The way I describe the nose numbness is that of the affect of novicane from the dentist that has never worn off.

Sandee007
Sandee007 in reply to Hidden

Thank you so much for your reply!!! Get well soon...

RLS...is a strange thing. Why do doctors know so little about it and act as if it does not exist? I know the feeling, when it hit my arms I am stretching a lot. Sometimes it happens in a bus or train and then I really need to keep calm not to get crazy.

I just except the feeling and then let it go,that's the best you can do. ACCEPT THE FEELING...and let it go...

LotteM
LotteM in reply to Sandee007

Strange thing is, with RLS, and for me, trying to that just makes it worse. I jist HAVE to move.

Hidden
Hidden in reply to LotteM

I know what you mean! It is impossible to «accept the feeling and let it go». Your body is losing control, for Heaven’s sake! and that is SO hard to accept. (No offense Sandee; I know you’re trying to help🙂). I would love for any tips on how to accept it. Lord knows that our negative thinking pattern during an attack (this is awful, this shouldn’t be happening, etc.) makes it worse, but therein lies the irony. Out-of-control limbs don’t exactly foster the right environment for trying to «psychologize» things (practice CBT, etc.).

This syndrome is so awful!!!

BTW, hi there👋. Sorry about the mini rant! My «push-shove» with my psychiatrist is over. I was «discharged» from his care last week (no hard feelings went with it; it was just time to end the treatment), Weird thing is I kinda miss him. Painful as it was, he challenged me to think in new ways.

My hands and arms are a big problem but not my mouth.

Sandee007
Sandee007 in reply to marsha2306

Thanks for the reply!

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