I need help identifying what is wrong with me, please. I've had this problem for a good 15 years. When I try to sleep, or sometimes when I'm watching a film at night, or sitting on a bus, one of my legs (usually the right) starts to feel 'charged'. I just feel this energy in my l leg. I can't describe it clearly. It just doesn't feel normal. It feels uncomfortable.
Sure enough, eventually, I get a spasm of what feels like electricity. It starts in the thigh and shoots down the leg to the foot, contracting the muscles as it goes. It can be violent - the leg visibly shakes and jerks. It last about a second then stops. In that second I reckon the muscles spasm about five times. Then it will happen all over again about 20 to 40 seconds later. It repeats like this for up to an hour. It's not painful but it is extremely uncomfortable - like a ticklish energy building up followed by the spasm - and stops me falling asleep.
As I said usually it's the right leg. But then after weeks or months it will switch to the other leg for a while. Then back to the right. Rarely I get it in both legs at the same time.
What the hell is this? Is it RLS? That seems to fit some of what I'm feeling aside from one thing. All Web pages about RLS describe an 'uncontrollable urge' to move one's leg. I do NOT have that. Moving the leg does not alleviate the sensations and, in any case, it moves entirely by itself when it spasms every 30 seconds. Standing or walking does help but I would not say I have an uncontrollable urge to stand or walk. Mostly I just lie there waiting for it to pass. For an hour.
I have had had two sleep studies done. They didn't detect it. Extremely frustrating given how regularly it normally occurs.
When I do finally get to sleep, the movements continue. My girlfriend says my legs spasm periodically for an hour, keeping her awake as well. Whether what she is experiencing is the same as what I am while trying to sleep, who knows. I don't know if it's two different things going on or the same thing happening while awake and then asleep.
Amy insight is gratefully appreciated.
Mark.
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magarlick
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Were there any periodic limb movements in your sleep study data? Because what you describe is similar to what I experience. I have periodic limb movement disorder.
Most periodic limb movement occurs in sleep however some people also have it while awake. I have never heard of it occurring solely in an awake state.
Do the movements keep you from sleeping? And are you generally tired?
Thanks for replying. No, as I said, no movements were detected in the study, which is very annoying. Yes, the movements keep me from falling asleep - but more so the horrible tingly creeping feeling that comes with them. I do wonder if it is PLMD or RLS.
Hi Mark,
sorry to hear this.
Your case does sound unusual., but not that unusual.
It seems to me you're suffering from RLS/PLMW
Let me explain.
The unpleasant sensations you experience sound typical of RLS. You may not actually experience, except momentarily, the urge to move, because the involuntary movements may mask it.
This seems to be worse at night, especially when trying to sleep - typical of RLS.
PLMD (Periodic Limb Movement Disorder) can occur either when you're sleeping PLMS and when you are awake PLMW.
80 to 90% of people with RLS also behave PLMD PLMS is very common. PLMW is quite rare.
If the sleep study detected nothing, then it seems you do not have PLMS.
Your involuntary movements occurring as you're falling asleep are also inconsistent with PLMS, which usually only occurs during deep sleep and you won't be aware of them.
It is important that the sleep study also showed you do not have sleep apnoea. This is a factor in RLS/PLMD.
The fifth diagnostic criteria is quite important. This states that RLS can only be confirmed if all other explanations for the symptoms have been eliminated.
I can tell you that I have a confirmed diagnosis of RLS. I have never been diagnosed as having PLMD at all. However, I do experience involuntary movements as you describe and I know many other RLS sufferers do.
To cut a along story short! To quote the World Health Organisation (WHO)
" Specifically, when periodic limb movements are associated with Restless legs syndrome, - - - a separate diagnosis of Periodic limb movement disorder is not warranted because the limb movements - - - are considered an expected part of - - - the disorder"
To put this a simpler way, it's irrelevant whether you have RLS, RLS/PLMW or PLMW, the treatments are the same.
Note that thyroid dysfunction is a factor in RLS.
I suggest you think very hard about your next step. There are several reasons for this.
One is that people with RLS can feel that they have no control over what's happening to them and their RLS can take over their lives.
Two is that there's a lot of good literature about RLS, but this is limited to the causes, symptoms and medical treatment of RLS and barely anything about how to cope with RLS and its consequences. As the WHO also state
"The symptoms are sufficiently severe to result in significant distress or impairment in personal, family, social, educational, occupational or other important areas of functioning".
Three is that you can rely on health professionals, GPs or even specialists to be up to date with treatments for RLS/PLMD.
I believe it is therefore very important that you find about as much as you possibly can about the different options for the treatment of the symptoms in the first instance and make no sudden decisions.
I'm sorry to say RLS/PLMD is an incurable lifetime condition so at some time you need to be aware of its consequences and discover coping strategies.
Being informed helps you to make better decisions and may give you a better sense of control over what's happening.
You do need to see a GP.
1) Hopefully they will agree the diagnosis with you.
2) They should carry out tests for iron deficiency
3) They should discuss if there are other medications you're taking that may be making your symptoms worse. Also any other conditions you may possibly have that can make RLS worse, e.g. anaemia, diabetes, kidney disease, peripheral neuropathy, poor circulation or hypothyroidism.
NOTE: Drugs are not the first treatment that should be offered to you. In addition, if it is jointly decided between you and the GP that you need medication, then there are options, it is not solely up to the GP to decide which is best.
In most cases you may find the GP hasn't a clue!
In which case, the first information worth familiarising yourself with can be accessed through the following link.
Thank you so much for taking an interest in my case, and for writing so exhaustively. To clarify: the study did not detect movements while sleeping, no, but I can guarantee that they are there virtually every time otherwise. They are sleep-study shy. My girlfriend says that from about 4 am onwards my leg is jerking with the same period - 30-40 seconds - that it does when I am trying to fall asleep. I do not notice it.
In addition, I DO have apnoea. Quite severe too, although virtually all of the events measured were hypopneas (shallow breathing rather than no breathing).
I also have REM sleep behavior disorder.
And I occasionally have massive limb movements where I act out dreams. I dream I'm being attacked, for example, and kick out in my dream as well as in real life. I've nearly broken my toes doing this.
My sleep doctor prescribed agomelatine, which is very difficult to get on the NHS. My GP refused to give it to me even though it was recommended by a neuro specialist, as NICE has not approved it. Too expensive. Luckily the sleep doctor was able to dispense it instead. Since then, the movements during sleep have virtually gone, but the horrible sensations and involuntary movements while trying to fall asleep persist.
REM sleep behaviour disorder is separate and, as you describe, is where you act out your dreams.
However, that obviously only happens during REM sleep which doesn't actually last that long and only about every 90mins.
So yes, I still think you have RLS.
The agomelatine I see is classed as an "atypical" anti-depressant. It can help with sleep because one of the ways it works is as a melatonin agonist. Melatonin is a hormone that promotes sleep and an agonist will boost melatonin activity.
Traditionally clonazepam is prescribed forREM SBD, but melatonin creates less issues than clonazepam.
A melatonin agonist is not the same as melatonin so I'm not 100% sure if the side effects for agomelatine as they are for melatonin itself.
Melatonin in high doses, can lower dopamine levels. In addition I see agomelatine can increase serotonin levels This latter may explain it's anti-depressant properties.
Because of these two factors, it's possible that agomelatine may actually make RLS worse! I don't know, but it may be soemthing you'll have to look out for.
Clonazepam, on the other hand can help with both REM SBD and RLS.
Your first two paragraphs perfectly describe symptoms I have as well. The charged build-up of energy which results in involuntary spasm or shaking that can happen when awake but mostly seems to prevent/disturb sleep. Consider yourself lucky that you don’t have the more direct “urge to move” sensation. For me, the urge/requirement to move sensation doesn’t usually happen in conjunction with the building energy which ends in involuntary spasm, but is more annoying because it usually happens when I’m awake, trying to do something (that involves sitting), and the sensation you describe usually only happens in the first few hours of the night when I’m trying to sleep. A very low dose of gabapentin and full spectrum THC has mostly eliminated my symptoms (for now). Hope you can find something that helps you too. Thank you for so accurately describing something I never even would have tried to put into words.
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