I have been woken up over the past month almost nightly with these tingles that fill up my legs. It is not quite pins and needles but I would say it is comparable. It hurts. It is more like when you start to get pins and needles tingling but it sort of moves quickly through my legs. while I describe it like pins and needles it never reaches that numb stage you get if you leave pins and needles too long. Once I wake up and roll over it goes away but I get so stressed about it that I can't get back to sleep for hours.
My legs also twitch ( the little tiny muscles in the legs twitch).
I have been so stressed and obsessed about this I have developed a jerking like motion during the day. It is uncontrollable, I don't have any conscious control over the jerking.
I also get these shivers or tingles in my legs all during the day but not as powerfully as at night. I do fidget all freaking day because of this, I have become very anxious about it.
I also have it in my hands and scalp but not as powerfully. I can generally ignore them. I also get the overpowering sensation of tingling in my arms occassionally.
I have been to many doctors, including a neurologist, who has diagnosed me with RLS. I have been taking Sifrol (Pramipexole, 0.125 mg three times a day) and I don't find it very helpful so I went to a sleep doctor who said he didn't agree I had RLS but rather mycolonous but that doesn't explain being woken up in the night with all my legs tingling.
I stopped staking sifrol at the sleep doctors request but now I am thinking I need to take it again to stop waking up as I am dreading going to sleep.
Can you guys help me, in your experience, decide whether this presents as RLS?
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lily11
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Hi Lily feel your pain, I was reading your post and the symptoms are identical to mine! I have been going through this for several years not realising what exactly was going on due to a back injury.
Can’t recall the exact name but had a nerve test study done and found I have two trapped nerves in my leg! Did a nerve block to find the area and they dived in and cut my skin open and cut away where the first nerve was catching literally the next couple of days it was great no more “buzzing” in my leg, unfortunately it’s still there as I have another block (impingement) a couple of inches up that I’m getting released in a couple of weeks then hopefully all will be well!
Anyway what I’m blabbering about is it RLS we have or nerve impingement? Certainly worth looking at, I think mine was from a bad football tackle in 2000! And just getting sorted now as went private and made them look at other options as all they’ve done is pump me full of pain meds currently nefopam Oxycodone, lyrica, the lyrica I find helps calm the buzzing? ( mouse inside my leg trying to get out )? herbal sleep tea at night also helps get me to sleep before it kicks in and I’m awake all night
Hey Minden, I have had this for some time but recently I've started waking with a sore lower back!!
I can feel the tingling when I am standing up doing the dishes etc, in the morning, all day. The tingling often originates from my buttocks and sends waves down my legs but not always. I can also get it in my calf, but I rarely get it in my arm.
I have no day/night variation really. Is that the same with you, symptoms all the time?
I do notice it much more when I am sitting at any point during the day.
My neurologist didnt even think to test for the nerves in my bac and doesn't want too see me again for a year.
The reason I thought it could be RLS is that I notice the tingling more when I am sitting and now, it is starting to physcially wake me up at night, albeit I have no trouble getting to sleep.
I do move around a lot, like a person with pins and needles moves, but I wouldn't call it an urge or compulsion, just a movement due to the discomfort? It is also 24/7, I mean not a second of the day of the entire year have I not felt something in my legs.... IS THAT REALLY RLS? because that would seem like a bloody bad case of it!!
I also get buzzing in my feet, like a cell phone is in my foot.
Do you have an urge to move? I can sit through it but I don't like it. I often lay in bed for hours feeling to the white noise of my legs, sometimes i jerk (uncontrollably not consciously).
I forgot to mention that when at rest, I can feel my heart beat throbbing through my legs. It's so so strong
Hi Lily, this is not RLS.
Myoclonus is just a name for the jerking, it's a symptom, not a condition.
It sounds like some form of neuropathy. The pins and needles, jerking and pain sound like a compressed nerve, most likely in your spine.. The symptoms will vary according to your position e.g. they may be worse when lying flat on your back.
If you've not had an MRI perhaps your GP could arrange one for you if there are signs of a compressed nerve following a physical exam.
The small muscle movements could be due to "fasciculations".
There is a possibility that you have a magnesium deficiency..
These are just possibilities, you need to see your GP in the first instance who could refer you to a neurologist.
In the meantime Pramipexole isn't going to work. Furthermore if. you start taking it regularly you will become dependent on it.
Your best bet is to get the correct diagnosis for these symptoms.
Why I am considering RLS is I dont really feel the symptoms when moving about. As above, I wake up from the tingling and twitching (fasculations) filling my legs.
I also get the symptoms when standing still, can feel the skin prickling.
Is this not consistent with RLS?
Or do other conditions present equally as bad when at rest
but I mean there are sensations in my legs every second of every day when I am relaxing. I don't think this how RLS presents and maybe why the sifrol is not helping me?
There are other neurological conditions that produce symptoms that are similar to RLS. Sometimes the descriptions of RLS you might read sound similar because of how you interpret the descriptions.
RLS is confirmed if your symptoms match 5 criteria, the diagnostic criteria. Your symptoms have to match ALL 5. If they don't match even 1 of them then it's not RLS.
From the description of your symptoms you've given so far, your symptoms do not match.
You don't mention any "urge to move". This is THE defining symptom of RLS, which gives the syndrome its name, "restless". Fidgeting is not the same as urge to move.
The unpleasant sensation that RLS may be described as "crawling", "electric currents" etc NOT pins and needles. Pins and needles is associated with a pinched sensory nerve, not RLS. I have both RLS and a neuropathy, the two are quite different.
You say you get your symptoms when standing, RLS symptoms occur when relaxing i.e. sitting or lying down and especially when trying to fall asleep.
Falling asleep is usually the worst time, so much so that RLS sufferers can't actually get to sleep. You say it wakes you up, which means it doesn't seem to prevent you getting to sleep.
RLS happens mainly in the evening. It can happen earlier, but generally does not happen anytime of day.
The symptoms occur in the legs, hence the name restless "legs". In some circumstances it can spread to other parts of the body, but usually the arms, shoulders, neck. Not hands or scalp.
RLS doesn't cause fasciculations.
RLS can cause myoclonus, jerking, but so can other conditions.
You therefore don't have some of the symptoms of RLS and you do have symptoms that don't occur with RLS so it's not a match.
Pramipexole is a dopamine agonist. It is quite a strong drug. RLS is associated with a fault in cells in certain parts of the brain. Simply put , because of this fault dopamine doesn't work properly. A dopamine agonist helps to correct this fault. It is very effective.
Typically, even with severe RLS, the first time ever someone takes Pramipexole, the symptoms !disappear. It works immediately, first night.
The fact that you've taken it several weeks and it's not really worked suggests that it's never going to work. It does generally work for RLS and because it's not working for your symptoms, I'd say you don't have RLS.
I'd say the neurologist misdiagnosed your condition. There are several reasons why that might happen. They're not infallible. Doctors are not infallible, I have been misdiagnosed several times.
Not being a doctor, I can only hazard a guess at what's causing your symptoms. Your descriptions in part sound like neuropathy. This could be partly due to a compressed nerve. Your description sounds like my experience of this problem as confirmed by an MRI scan of my spine.
Your descriptions of other symptoms sounds like fasciculations. These are small movements of local. muscle groups, they can even be visible. I quite often get them round my eyes or in my wrists.
There are many reasons for fasciculations.
Your symotoms, in some respects sound like anxiety. Anxiety can lead to physical symptoms which can be varied and might not be normally associated with anxiety. E.g. tingling, being aware of your heart beat, tremors. (similar to fasciculations).
You don't necessarily have to be anxious about something specific. GAD, General Anxiety Disorder is where you suffer anxiety which isn't associated with anything. I tend to suffer this and at its worst, I get tremors and even shakes and have to take medication to stop them, usually a beta blocker.
There is also Health Anxiety, an over attention to physical sensations which are interpreted as symptoms of a physical condition. People suffering health anxiety tend to read up about symptoms and convince themselves they have a particular disease. It's quite easy to interpret anxiety symptoms as a "nervous" condition.
Sometimes, the "sumptoms" as experienced can subtly change to fit a condition.
Health anxiety can wind up. Anxiety leads to symptoms which are interpreted as a disease. This causes anxiety, which worsens the symptoms and so on.
The fifth criteria for RLS is that all other possible explanations have been eliminated. It doesn't sound as if this has been done in your case.
I f it's the case that you are suffering health anxiety then firstly I suggest YOU stop trying to find an explanation for your symptoms, because that can make you worse. Discuss ALL your symptoms with your doctor.
If you're suffering health anxiety, being on this site may be doing you more harm than good.
You might want to.print out the RLS diagnostic criteria and show your doctor. Point out that if you have RLS, Pramipexole should have worked.T
If you have been taking Pramipexole for a while, it's possible you may have developed a dependency. Pramipexole causes dependency.
If that's the case then if and when you stop taking it, you may suffer withdrawal effects. These could be RLS-like symptoms. Getting RLS symptoms when you stop taking Pramipexole does not mean you have RLS.
If symptoms disappear when you START taking it, means you probably have RLS.
Morning, I don’t have RLS but similar symptoms. I would advise going for a CT SPEC doctor will push back but I went to a clinic in London and was sent for one, small injection of isotope that makes your nerves glow? Basically if you have nerve damage it shines like a beacon, several colours in it and it’s far better than a standard CT scan! I sat and suffered with this whilst being in the military for the last 20+ years and only finally getting answers now after seeing a lot of doctors and specialists
Have you ever woken up with your thigh muscles rock hard, harder than you could ever flex them on your own? Just curious. I have that happen periodically. I also, occassionally, experience all over body weakness and pain for no apparent reason, which three times in the past 5 years has left me unable to lift my arms or hold onto small objects like a pencil. Usually passes within a few days. Went to ER twice, but was dismissed by ER doctors both times. The time it became so bad that I could barely walk my primary care doctor put me on Prednisone. I had absolutely no RLS while on the Prednisone and felt better than I can remember ever feeling my entire adult life; I was dancing and doing high kicks like a New York City Rockette! I use to be a cross country runner until age 42 when I quit after multiple herniated disc; I then switched to mountain bicycling. Had to quit that three years ago after suffering a severe, displaced trimalleolar fracture. I was also a competitive swimmer during my middle school years -- always been very athletic, but I never felt as good as I did those two weeks I was on Prednisone.
I get painful muscle twitches but nothing like what you describe. I don't even know that I have RLS as the medications I have been taking for about 2 weeks do nothing (sifrol).
Sometimes my legs/feet feel like they are going to jerk outside of their skin, is this myocolnous or RLS? I have stopped the sifrol today and the jerking feeling in my left leg is worse today. I don't know where to go from this.
When I was on sifrol I still had the jerking sensation but not nearly as bad
Hi while on mirapex 0.375 er I developed crawling and shivering sensations in my hands that I never had before taking the medication. I noticed it most exactly before falling asleep. They have not really gone away since stopping the medication. I only took it for three days.
I'm so scared about this new symptom. My body is out of control
Stretch your legs 2-3 times everyday. Stretch your calves, stand on tippy toes. Excerise daily just don’t overdo it. Too much can aggravate conditions. Use heat and ice packs when needed. I put icepacks on my feet at bedtime. It’s cold but it helps.
Keep working at it til you find some relief. I did. Best of luck.
I see two things operating. One is your tingling sensations and the other is your reaction to them. You only have control over the later and a fearful, angry, or disturbed reaction to them will worsen them.
Therefore I recommend you find ways of thinking about them that reduce your alarm. Something like thinking of them as just physical sensations that in time will pass, and as something you can endure until they do. You might also try relaxing while you do this.
Fear and distress result in over arousal and activation of the nervous system such that the likeliness of having uncontrolled movements increases.
Try slow, diaphramatic breathing wherein you lift your belly to breathe taking 4 seconds to inhale and six seconds to exhale. Do this for three to five minutes. Think about pleasant things as you do this. It's a marvelous way to decrease anxiety and the physical sensations that accompany it.
This may not remove the occurance of the tingling sensations but it will reduce the degree that you are disturbed by them.
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