Is this RLS?

Hi everybody, my name is Margie and I would like some help please to confirm if I do in fact suffer from RLS.

I saw the Chanel 5 program on RLS this evening and I did not recognise many of the symptoms described except the gentleman who had involuntary spasms while asleep.

To explain, for as long as I can remember (I am 48) I have suffered what I call 'jitters'.

This is a sensation in one or the other foot/lower leg when I am tired of what I can only describe as a feeling like I have been poked by a cattle prod causing like an electric shock and a mild to sever involuntary spasm. However this happens mostly in the evening before I go to bed. Walking around will sometimes bring some relief. A mild attack will cause a spasm every few minutes. A sever attack can be every few seconds. Any attempt to stop a spasm only makes them worse.

This does not happen every night. I can go weeks without any attacks then days/weeks when it happens every night.

In all my life the only time I have not suffered is when I was pregnant and on high doses of iron for anaemia.

After being prescribed Gabapentin about 18 months ago for another condition I have also noticed a greatly reduced frequency in attacks.

Can anybody tell me if this is RLS or not?

Many thanks in advance x

20 Replies

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  • Sounds like leg cramps to me which are different to RLS

  • Hi Satsuma. I don't think it is cramp. I have suffered from cramp many times and the symptoms are very different.

  • Oh ok .. Was just an idea

  • Could it be periodic limb movement disorder?

  • Hi Katy. This is what I am unsure about. I have only recently found out about RLS and so that is why I am trying to confirm what I have exactly.

  • Hi Margie, my symptoms are very like yours. I've always considered them to be RLS. I've been prescribed Gabapentin, and also pramipexole, which more or less saved my quality of life. Before I was drained and mildly traumatised by the ordeal of the night most of the time. Don't quote me but I believe RLS and PLMD are medicated the same way. Your cattleprod image seems exactly right to me. The sensations are also like knocking your funnybone. Good luck.

  • Hi Rkatt. Thank you, I now know i am not alone in this. Growing up I always thought of my self as a freak for this. Sleep overs where a nightmare as friends used to get annoyed with me keeping them awake with my weird jumping legs.

  • It sounds like RLS, but RLS is a voluntary movement. A urge to move your legs. The involuntary movements if you are asleep is PLMD.

  • That sounds really upsetting Brandswife. Can I suggest you log in to RLS-UK and then follow the resources links at the bottom of the page on the left...(in blue writing). Here's a link to the particular page. rls-uk.org/professional-res... from there you will be able to download all sorts of helpful information to either take to your GP or even do the RLS test which should be able to give the answers you seek. I hope this helps. Kind regards Imogen x

  • Hi Brandswife

    You will find lots of information on the RLS-UK website: rls-uk.org This may help you in regards to whether you have RLS: rls-uk.org/diagnosis/

    Here is the RLS-UK link to PLMD: rls-uk.org/periodic-leg-mov...

    Gabapentin is prescribed to some patients suffering with RLS.

  • If you move the leg constantly or move about, does that relieve the spasms? It only relieves the spasms when you move. As soon as you sit/lie down/stop moving, they will start again which is why most of us are severely sleep deprived.

    If I force ( and that is the key word, force) myself not to move and stay still, then I get the exact spasms you describe. My big toe involuntarily jerks upwards as well and this is called dorsiflexion. It is a sign of RLS.

    I'm pretty sure what you are describing is RLS and the gabapentin will help.

  • My rls symptoms sound exactly as Joolsg is describing especially if I will myself not to move. My big toe also involuntarily moves.

    I also take gabapentin for both epilepsy and rls and am right now on a series of iron infusions. Hoping for help from this.

    However, as others have said, it's so important to see a Dr.

    Good luck and may you find some relief!

  • Hi this is Deblocklear... Only a neurologist can really determine if you have RLS for sure but Gabapentin does treat it and an iron definiency can make it worse. When I first started having symptoms .. they thought it was my heart .. spent a lot of money finding one that it was really RLS.My symptoms are a feeling of an adrenaline rush very uncomfortable... insomnia.its in my family..pacing helps..I have Akathesia..a central form of RLS not necessarily in my legs.

  • I would be surprised to find that only a neurologist can diagnose RLS. In many cases the symptoms are classic and I would have thought that a diagnosis by the individual sufferer or by a G.P. will be as accurate as one by a neurologist. In my own case, the condition was self-diagnosed and this was confirmed by my G.P. and a sleep consultant (not a neurologist). Moreover, two neurologists refused to see me on the grounds that they had insufficient experience with RLS.

    In your case, Brandswife, most of the symptoms you describe sound like RLS though there is some doubt. Much will turn on the nature of the movement you describe. As Jools says, if it is involuntary then it is maybe more like PLMS - with RLS the movement is theoretically voluntary in that in can be at least deferred - though only with great difficulty. If you responded well to having iron supplementation that also suggests RLS rather than cramps. If you were to try dopamine agonist type medication and found that you responded positively to it, that would point strongly to RLS/PLMS.

  • Sorry my bad. However my GP has RLS but referred me to the neurologist.

  • I can not confirm the RLS diagnosis but I can tell you what I take to deal with my symptoms for RLS

    I take with great success three times a day one gabapentin and on

  • Hi Margie, my experience of RLS is that it started with the urge to move (when I was a child) and progressed to involuntary leg movements, only sometimes now following the urge to move. I'm convinced that the involuntary movement is part of RLS because, as Joolsg says, if I manage to resist the urge to move, my leg jumps uncontrollably.

  • It sounds just like RLS to me. I describe mine, (which, by the way, is NOT bothering me much lately!!!,) as an Electric Tickle (Not a pleasant tickle tho.) It runs usually down my left thigh, but sometimes my right thigh, or in the front of the hip joint. It can come every few minutes, or every few seconds, if it is being particularly bad. I used to try to keep still, but that is so hard to do. I also get, according to my husband, jerking movements tho I am asleep and do not feel them. That is Periodic Limb Movements, or some such thing. One can have more than one thing going on.

    People seem to have variations on how they experience the feeling of RLS, tho no doubt there are other things like leg cramps (Charlie Horses, we call them in the US.) PLM, etc.

    Someone I knew a long time ago, when I thought I was the only one experiencing the Electric Tickle, called what she had the Heebee Geebees, and said that two other members of her family had it also. That's when I realized I was not the only one, and that it must run in families. (Tho no one else in my family had it, until one of my sons had it.)

    Perhaps you did not experience it during pregnancy because of the iron you were taking. Several of us have used Iron Bisglycinate, 25 mg. (plus a few other things) to help cut down on the frequency or severity of our RLS.

    And isn't it funny (in a sadistic sort of way) that once one stands up it goes away, but when one lays down again it soon comes back? I seem to remember some people on here discussing the possibility of sleeping standing up.

  • Thank you everyone for your replies. I think I am quite sure now that it is RLS. Thankfully the Gabapentin seems to be keeping it under control so I am happy with that.

  • I'm glad you were started on gabapentin and not Ropinerole. Ropinerole augments which mine is doing now slowly. My RLS is however under control on low carb diet, moderate exercise, Ropinerole, Zanex,maybe CPAP is helping a little,iron and multivitamin and light exercise... But when I am severely stressed my symptoms are worse.

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