Help leg flutters all day long

[Nikki609]

I keep getting these feeling

Ike butterflies are trapped under my lower legs. My neurologist did say that I have rls. But no meds were given how do I control the flutters it’s driving me nuts

[Hidden]

Firstly, it's worthwhile confirming that you do have RLS. The neurologist saying you have RLS, I'm afraid might not mean a lot.

You can see if they got the diagnosis right by comparing your symptoms to the internationally recognised RLS diagnostic crtiteria.

I can't say you have RLS because although you mention the fluttering, there are other things this could be. In addition you don't mention the principal defining symptom of RLS which, if you don't have it, then you don't have RLS. This the "urge to move".

Below is a link to the criteria, there are 5. If your symptoms match ALL 5 criteria then you may have RLS. If they don't match ALL 5 then you probably don't have RLS.

irlssg.org/diagnostic-criteria

If you DO have RLS then the neurologist may be justified in not prescribing any medication. Medication should be seen as a last resort. So it depends how severe the RLS is.

However, they should have advised you about non-pharmacological remedies for RLS.

You will read lots of members of this forum saying how ignorant many doctors are, including neurologists, about RLS, in treating it and even, in some cases diagnosing it correctly.

I suggest you look at the criteria and come back here after to see what you think. This forum can offer you a lot of help with RLS, but not if your symptoms are due to something else.

You may get other members offering advice about how to manage RLS, assuming you have it, but I think it's important first to establish that you do have it.

Let us know.

[Nikki609 in reply to Hidden]

Yes when I’m

Acing in bed I feel like I have to keep moving my legs also when I walk the bubbling feeling goes away but comes back even when sitting. It comes and goes my neurologist did start me on b12 shots I also have ddd in my lumbar spine. And cervical spine issues

[Hidden in reply to Nikki609]

Hello again

I still can't say you have RLS for sure.

You have the main symptom the urge to move, you say it's worse when lying or sitting and it's relieved by moving. Is this anytime of day?

These symptoms could also be related to your lumbar spine issue, in other words this could be "secondary" RLS. i.e. RLS caused by another underlying condition.

If you had "primary" RLS you may have these symptoms before you had a spinal issue however mild and/or you might have close relatives with the condition.

Whether you have primary or secondary RLS is of some signficance because if you have primary RLS iron deficiency is a major factor. I wonder if the neurologist said you had "primary" RLS or "idiopathic". - the same thing. If he/she thought that you had RLS secondary to your spinal issue then they might not have thought about iron. It's possible however that they just neglected to do this.

People with primary RLS need a blood test for "ferritin" which will indicate if iron therapy will help them.

Vitamin B12 can be a factor in RLS if you have a deficiency. It seems a little excessive to give B12 injections without first doing a blood test if this is what was done.

B12 only really works if you have a deficiency, it's not a treatment as such.

The same goes for vitamin D, which you are more likely to have a deficiency in.

A magnesium deficiency can also be a factor in the symptoms.

It may be worthwhile finding out if you had blood tests for ferritin, magnesium, vitamin B12 and D and what the results were. In the case of ferritin, you need to know what the result was, not just that it was "normal" .

If you've not had them you could ask your primary doctor for these.

The other thing that the neurologist should have discussed with you is if there is any other underlying condition and/or aggravating factor making your RLS worse. This could apply even if your RLS is primary rather than secondary.

Aggravating factors may include any medications you take for any reason. Diet could also be a factor in RLS. It may be worthwhile keeping a food diary recording what you eat on each day and what your RLS symptoms are like that day or the next.

Added sugar and alcohol are a major trigger for RLS.

Additonally, there are various remedies which others may tell you about that help relieve the symptoms when they occur.

When it comes to medications there are as yet only medicines that relieve symptoms, no cure. They all have side effects and risks. It's not worth taking a medicine for RLS if the side effects and risks are worse than the RLS itself.

Medications really should only be resorted to if you cannot manage using other means. Also if your RLS is having a significant impact on your life causing daily sleeplessness and preventing you from doing the things you want to do.

There are two main classes of drugs that can be used as a "first line" treatment for RLS. These are called "alpha 2 delta ligands" and "dopamine agonists" .

If desperate, your primary doctor could prescribe one of these, you don't need a neurologist. Major RLS organisations now recommend that a ligand be tried first i.e. gabapentin or pregabalin. These are also used for nerve problems e.g. neuropathic pain.

Dopamine agonists, pramipexole, rotigotine or ropinirole are NOT recommended.

If you're convinced you have RLS and need medication then you need to find out more about these.

[Nikki609 in reply to Hidden]

Yes my primary doctor has me n vitamin d pills. Also she said my colorstrol was a little high so I’m taking red yeast rice every day thanks

[Hidden in reply to Nikki609]

High cholesterol is irrelevant to RLS, but if you do have a vitamin D deficiency, that will help.

[Nikki609 in reply to Hidden]

I went to er last month with chest pains had all kinds of blood work every thing was in normal range as far as the chest pains it was something called costochondritis. I also have cervical spine issues that I’m in physical therapy for now

[Hidden in reply to Nikki609]

Yes I sometimes have chest pains due to intercostal muscles. Worrying, but harmless.

The symptoms in your legs aren't related to your cervical spine. That would affect your arms.

You need to be wary when you're told that blood tests are in the "normal" range. It means for "normal" people. I regularly have a blood test and the result is always "normal", but actually for me it should be zero.

If you had a test for ferritin, which is NOT carried out for chest pain, and it was at least 15ug/L then they'd say it's in the "normal range". In the case of somebody with primary RLS, however a ferritin level of less than 200ug/L probably means they have brain iron deficiency, i.e. lower brain iron than a normal person.

Only a few tests are carried out for chest pain, cholesterol might be one, cardiac enzymes another, but not iron levels usually.

[Hidden in reply to Nikki609]

Incidentally, I note you say that you have symptoms all day long which doesn't fit the RLS criteria., although it's still possible you have RLS secondary to your spinal problem.

An alpha 2 delta ligand may still be appropriate as they are also used for nerve problems.

The other possibility is - criteria 5, that you have "fasciculations". You're description of flutterings sounds like this. If this is the case you may be able to see small movements in your legs.

[Nikki609 in reply to Hidden]

Also today I noticed when I sit I get cramps in my lower legs and see one of them throb

[Hidden in reply to Nikki609]

I'm sorry I don't really know what that is.

It doesn't seem that you have RLS, or if you do, you may have something else as well.

I suggest you write down all your symptoms and go back to your doctor to discuss them.

[Nikki609 in reply to Hidden]

I have recently had a ultrasound on my legs it came back good also a d Demeter blood test it was all normal ugg this is so frustrating I do have disc that are getting compressed in my lumbar spine I’m thinking it’s some kind of nerve damage

[Nikki609 in reply to Nikki609]

Also a bone spur in my right hip

[Hidden in reply to Nikki609]

You may be right.