would this be RLS: Hi all, Can you... - Restless Legs Syn...

Restless Legs Syndrome

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would this be RLS

Russell1975 profile image
15 Replies

Hi all,

Can you please assist in helping me understand what I am feeling.

I have this sensation in my leg which is there all day long.

It is like a pulsing. It feels like my leg would jerk if I didn't squeeze it. It happens pretty consistently every few seconds. I don't move my legs as such, rather I clench them to stop them from what I would imagine would be a jerk if I didn't.

It is almost like the muscle is contracting and then releasing, but also it's not. It seems more like it's in my head than the actual muscle is contracting.

I am on no medications. My ferritin level is high (130ish). I eat and exercise regularly.

Is this RLS? I have been to a few doctors and they are stumped.

Cheers

Russell

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Russell1975
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Russell1975 profile image
Russell1975

To assist, it does not build up over time while relaxing. It is there from the moment I sit down, any time of day.

I can't feel it when I walk around because the muscle in my calf is obviously contracted.

Oh and it is only in one leg, the right calf.

Sometimes it feels like my whole heartbeat is going through my legs

solticeart profile image
solticeart

That’s sounds similar to what mine feels like at times, when I first got it I’d also clench my legs too and I still can feel like a pulse it at times. Sometimes I’ll shake my foot/leg if I’m on the couch. I have it mostly now I’m just my right leg but it starts in my foot. If I take some kratom before it gets in my leg it stops but if I don’t do anything it gets into my leg and will go to my other leg and I’ll have full blown rls, but now I can tell when it’s coming , well except in the middle of the night. I take some kratom before bed but it only lasts 4 to 6 hours so I wake up most nights around 3 or 4 with it in both feet and sometimes in my legs but it’s usually my foot or both feet that wake me up. It’s not like full blown rls in the feet at first. When it starts I say they feel nervey? I need to love them yes, they will get tingly and really irritated.its so hard to describe. Yours sounds like yes it could be. If you have to move them or clench them for it to stop then that sounds like it. It may change over time, mine sure has. I also get this weird feeling like my legs are filling up and sometimes I’ll get bad leg aches with it. If I take kratom( it’s a ground leaf from trees in Indonesia I buy finely ground and put in capsules and it also stops pain. I also have fibromyalgia) but since I started taking it it’s pretty much under control so I can sleep at least 4 hours at a time. The drugs won’t work on me and make it 100x worse.

It doesn't sound like RLS as it doesn't fit the diagnostic criteria.

You can test this for yourself. Here is a link to the criteria.

irlssg.org/diagnostic-criteria

Since you've had a Ferritin test, I guess a doctor has already considered RLS and dismissed it.

I've no real idea what this might be. It could be a local condition i.e. affecting just part of your body and originating IN that part of the body or it could be more "systemic" i.e. originating in one of the body systems.

If it were local, it could be muscular, if systemic it could be the nervous system. In addition, it could be a circulatory condition, locally or more generally.

It's hard to judge as your description is a bit contradictory since you mention legS then you mention just your right calf.

Does the "pulse" happen only in your right calf, does the whole heartbeat go only into your right calf? Hence neither your upper right leg or the whole of your left leg is affected.

If this is the case have any of the doctors tested the circulation to your right calf i.e. is the calf different to your other calf in colour, temperature or size? If they're the same, then it's unlikely to be circulatory.

Sometimes when a sensation coincides with the heartbeat, you'd say it was "throbbing". If you think that fits, it's usually a sign of inflammation, but in that case then you may have had some trauma or a wound to the leg.

I don't think it is a nervous system problem as I'd expect you'd have other symptoms e.g. pins and needles, numbness or back pain.

One last possible explanation is that this is a localised neuromuscular condition i.e. a "fasciculation".

Otherwise, sorry, I'm stumped too.

Russell1975 profile image
Russell1975 in reply to

Sorry Manerva, it is only in my left calf that I feel this tensing and releasing sensations. If I were to move my leg I dont think it would help as it is over within a second, and then might occur again ten seconds later. It honestly feels like my calf muscle wants to jerk and then it releases. Then it does it again. It also feels really tight, like my left leg cannot relax the muscle.

I get some weird sensations occasionally in my legs but I think that might be related to a bad back (tingling sciatica type pain).

The pulse is mainly in the calf but in moments of anxiety I can feel my pulse throughout my body.

Does this sound like RLS?

Russell1975 profile image
Russell1975 in reply toRussell1975

It is also unrelenting, and is not related at all to day/night. It makes no difference whether it is morning or night

in reply toRussell1975

Since you mention sciatica, that suggests it's nerve related.

It's almost certainly not RLS.

sarah19902 profile image
sarah19902

Can someone comment on this, from experience whether RLS is generally experienced in the night or if it can be never ending during the day and night.

I think this will assist with the person who posted

TheDoDahMan profile image
TheDoDahMan

I think it's fair to say that in the beginning stages of RLS, the leg tingling mainly occurs when lying down, eventually progressing to the point where sleep is disrupted, or even prevented. Getting up and walking usually ameliorates the tingling, only for it to resume after lying down again. In later stages, the tingling may be felt even when sedentary. From what you write, my personal opinion is that your problem is something else. Good luck in arriving at a diagnosis.

Russell1975 profile image
Russell1975

For me this feeling occurs all of the time, it does appear less obvious when walking around.

I do get tingling in my feet, similar to pins and needles but that comes and goes and it probably is more prevalent during the day. I thought tingling was different to RLS?

My left calf just feels like it is tight and sort and like a jolt is going through it, encouraging it to jerk but I don't jerk it as I the jolt leaves as quickly as it arises.

Russell1975 profile image
Russell1975

Any response would be appreciated. It is distressing. I don't know how to continue to go on much more when this feeling never ever goes away.

If it was RLS would I expect to feel it from the moment I wake up through to the moment I sleep?

Oldcolner profile image
Oldcolner

RussellSorry to hear your situation.

This covers muscle pains and may offer some ideas for what you have.

painscience.com/articles/cr...

This review talks of illusory muscle cramps

msdmanuals.com/en-gb/home/b....

What have you tried - Rubifacient Deep Heat type creams, mineral supplements?

Russell1975 profile image
Russell1975

My doctor has diagnosed with me RLS and started me on sifrol.

Can anyone please advise on whether this is wise?

It feels like my left leg is clenching and then releasing.

It happens all the time. It will clench for a few seconds then release, a couple of seconds later do it again. It is mainly in the left calf but I can feel the clenching up into my thigh sometimes, again on the left side

Is this consistent with RLS before I take the medication

Oldcolner profile image
Oldcolner

Just checking this is correct.

It feels like it’s clenching but it isn’t actually doing anything physically, this is a mental perception?

sarah19902 profile image
sarah19902 in reply toOldcolner

I think that is definitely what they are trying to say, is that consistent with RLS?

Russell1975 profile image
Russell1975 in reply toOldcolner

I get a sort of clenching motion in my calf. It feels like it is going to jerk. It is all the time. It is worse when sitting because I can concentrate on it. I stop it by clenching my calf and then I don't feel the jerking motion

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