Hi, this is my first post here and I'm not too sure if I have the right place.
I was told by a specialist doctor after having tests done for OSA (Obstructive Sleep Apnoea) that I also suffer from "Moving Leg Syndrome", but nothing more as been said to me about it by any of my doctors or GP.
Now I am starting to have violent leg, arm, back and hip twitching which is starting to worry me, so I decided to Google search "MLS" and came across this "RLS". Most of the members symptoms here are similar to mine and so I thought I'd ask here just to be certain.
One minute dropping off to sleep and the next my arm will fling out or leg kicks out. I used to get just a restless feeling in my legs but now it seems to be all over me and I twitch like a dead frog being electrocuted.
I'm really becoming scared by this as I have no control over this movement and am beginning to feel that something is seriously wrong with me. I'm at my wits end with this and want to go to the doctors but am afraid I'll just be laughed at for getting the two definitions wrong..
Thanks for ready and any, any advice would be greatly appreciated as I no nothing about what's wrong with me.
Clive
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CliveD
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During a sleep study, you can be diagnosed with PLMD, Periodic Limb Movement, where you are kicking and waving arms about while you are asleep, never heard it called Moving Leg Syndrome. Do you have to get up and move the get relief from the symptoms you are describing in your post. Most of us cant just stay in bed. RLS stops you from sleeping.
It SOUNDS like RLS, but i am not completely sure. There are 4 critiera for RLS. which are posted on this site which tells whether you have RLS. i cant remember which post it is on right now, i posted it for someone else asking if they had RLS.
If I'm sitting or standing still for to long my legs get restless and I have to move about to relieve this. I did used to have this happen when I would lay down at night to go to sleep but it seems to have stopped that now and just affects me if motionless for too long. Laying down it does relieve this but after a while especially at night when I'm tired I get the kicking and waving as you described. I don't have to get out of bed to stop the twitching, which is why I'm confused, because I do eventually fall asleep. But, if I'm woken up at night/early morning for any reason I become restless and do have to get up for a few hours, then I feel relaxed enough to go back to sleep, if I get the chance
It sounds like your doctor is just calling RLS by the wring name, plus PLMD if you are moving in your sleep. I have never heard of "moving leg syndrome" For fun I will have to google it.
The 4 official criteria for helping to confirm
a restless legs syndrome diagnosis
These criteria were established by the National Institutes of Health in a workshop with members of the International Restless Legs Syndrome Study Group.
The four criteria are:
You have a strong and often overwhelming urge to move your legs. This urge is usually accompanied by the various unpleasant restless leg syndrome symptoms or sensations I mentioned above.
The urge to move or the symptoms of restless leg syndrome are triggered or worsen when you're inactive and resting...either lying down, sleeping, or just sitting.
Your restless leg syndrome sensations are relieved, either partly or totally, with movements. Activities such as stretching, walking, riding an exercise bike, or shaking the legs. This relief continues as long as the movement continues.
Your restless leg syndrome symptoms and urge to move are worse at night. Also, they are either gone in the morning or are very slight
Ok, these are the criteria for RLS, i just copied it for you. I hope it helps you...
I just typed a whole big response, and my cmputer hiccupped, and it all disappeared. grrr.....
What kind of doctor used the term "Moving Leg Syndrome"?? There is no such thing. I have oogled and searched, because I have been running support groups for RLS since 1997, and have had RLS for 42 yrs. sounds like you have RLS, but in all this time, I have never heard of movig Leg Syndrome, and think that your doctor may have just "called it that, like a nickname" for RLS. Otherwise, I cannot figure THAT one out at all. Write to the neurologist at rlshelp.org. He answers every email, and ask him about this Moving Leg Syndrome. As far as I know, and I have a lot of experience with 5 support groups online, almost 3,000 members from 29 different countries, there is no suc thing as Moving Leg Syndrome. I think your doctor thought he might be funn y by saying that, but obviously it was not funny. Read the treatment page, and scroll down to "Drugs and Foods to Avoid" an go from there. RLS is a sleep related movement disorder, and your brain is basically telling your legs and arms what to do. A sleep study is necessary to diagnose sleep apnea, as well as PLMD, kicking in your sleep. That will cause brain arousals, and you will not reach the right stages of sleep. Knowledge is power, so the more you know, the better the chance of a good visit with a doctor as opposed to a bad one. LOTS of doctors do not have a clue as to how to treat RLS, so what did the "specialist doctor" say about treating "Moving Leg Syndrome"? And, I am pretty sure we are talking about RLS here. RLS is a pain, it affects all aspects of our lives when it progresses as we get older. Some cases are genetic. You can ask all the questions that you want here, and we will do our best to help you figure this out. By "we" I mean your fellow RLSer's. what you describe is kind of like an electrical feeling, an urge to move that you cannot suppress. "URGE to move" or "have to move my legs or they feel like they will explode" is the basic way to figure out if you have it.
No reason to be scared of it, but you have to pay attention and leran about it, because, as you say, yours is getting worse, so the time to find a good doctor who knows what RLS is called is now, so you can be prepared. It can be a bit overwhelming, but lots of experience here.
I did have to do a home test, but that was for the Obstructive Sleep Apnoea, I think. I had to stick some pads on and connect wires to myself, plus put a band around my chest and stomach which all plugged in to a box also strapped to myself. It took me ages to remember how i was told to do it but I got there
It was quiet a while after this test that I got a copy of a letter the specialist sent to my doctor which confirmed the Obstructive Sleep Apnoea but also mentioned i was suffering from the "Moving leg syndrome". I think I'm going to write to the neurologist you've recommend to find out about it all. Thanks for your advice, it's good to have a better understanding of what's happening to me, and although this sounds bad, it's not meant to be, but I'm glad I've found others that suffer from the same problem as myself.
How will this all end up? I mean, what is the end result of RLS going to mean for me?
As yet, there isnt a cure Clive, but there are treatments to help, go to the website that nightdancer gave you you will see what meds there are, and what drugs and foods to avoid
Hi CliveD, it could be you have both RLS and PLMD, if you were asleep when you did the sleep study, then it would show that you kicked about while asleep. PLMD happens while you are asleep, RLS stops you sleeping.. So, your study could have shown PLMD, but for some stupid reason, you were told you had Movement Limb Syndrome. A sleep study doesnt diagnose RLS. Its only the criteria i posted that tells you, you have RLS.
I have only RLS, but many people with RLS also have PLMD aswell.
It is treatable with the right medication, finding the right med can be trial and error.
Also ask you doctor for a ferritin level test, its how your iron is stored, For RLSers our ferritin level should read 70 or above, under your doctors supervision you MIGHT benefit from taking iron pills if your ferritin is below 70, I put might in capitals, because taking iron does not work for many, but its worth getting that test done.
I wish the iron worked for me, but it doesnt, ive just had a letter from my neuro, my levels are low again !!!! excuse me i havent had a blood test !!! the last time i saw him was for the stroke, and he didnt want to know about the RLS....?
for my ferritin levels, it was almost 7 months ago, it was low...again... and i had a course of iron then from my neuro... and ive had another quiet recently from my gp, just finished them, didnt have a blood test then either, i think he just gave me them for they sake of giving me them, it was when i went for the result of my xrays for my hands feet and back (arthritis), im sure he think that will shut me up !!! but ive now had around 6 lots over the last 2 years, and what has it done for me...zilch.....if they give me any more ;/ lord knows what i will tell him to do with them...
Thank you all for your helpful advice and kind words of support, it all means a lot to me.
Not being able to see ahead of me because of being left in the dark was becoming a quagmire to my life. But now I've found this RLS community, beacons kindly guiding me to the light, I can start to work my life around it all.
Thank you all and I will heed the advice given and will seek proper medical help
I will keep you all up to date on my progress as I've found this RLS community rather helpful
Peace to you, too, and let us know. We always meet people when they are in crisis mode, and then some people just kind of disappear. It is nice to get updates, and we worry about our little community here.
i second Nightdancers comment there
The jolts just awaken me..that's about all..then I go back to sleep to
have it happen several more times.
My legs move around practically all night, I am told by my husband.
You are right that it's a really amplified Jolt (just once) and then
minutes or hours before another really big jolt takes place. .
Always when I am sleeping, never when I am awake.
PLM= periodic limb movements
PLMS= periodic limp movements during sleep
PLMD= periodic limp movements during daytime
All very common together with RLS/WED.
In Sweden we says that Ferritin level should be above 75, otherwise you need iron injections, it takes too long time to risen it with pills.
Hi Clive Speaking from my personal experience of RLS I don't think it is RSL. RLS gives us a very unpleasant feeling / sensation in our legs and the only way to stop this is by moving. So when it starts at night the only way to stop it is to get up and start walking around and hoping it will eventually die down. Strong painkillers can help. It doesn't cause involuntary movment of and limbs in my case.
In my case I would say it is a strong case of involuntary movement of legs and sometimes arms, as well as the creeping and unpleasant feelings................
Willis-Ekbom Disease (WED) is the new name for Restless Legs Syndrome. As someone pointed out today, EkbomSyndrome has nothing to so with Willis-EkbomDisease. Ekbom Syndrome is a psychotic delusion that people have bugs crawling on them. Be careful to use the term Willis-Ekbom Disease to accurately refer to Restless Legs Syndrome and not to consider Ekbom Syndrome as the same thing - nothing could be further from the truth, You may need to educate medical professionals and the public about this difference.
Restless Legs Syndrome is not about leg movement, but rather the very unpleasant and often indescribable sensations (except to other sufferers) people develop in their legs (arms and other places too as a natural progression of the disease), that make the sufferer move the affected area to relieve the sensation.
There are a number of other disorders that make people move their legs all the time, (twitches, nervousness, neurological disorders), etc. RLS/WED is all about the unpleasant sensation that drives people to move the affected area, This movement will temporarily reduce the unpleasant sensation although it begins to crescendo in intensity until the sufferer again needs to move again. The interval between movements can range from minutes to seconds. I have had it so bad that I needed to move every 5 seconds. No wonder we can not sleep!
They have moved from Restless Legs Syndrome to Willis-Ekbom Disease as we now know that it is in the brain having to do with defective iron and dopamine metabolism. It was termed a syndrome because it was a collection of symptoms before we discovered the cause. It has nothing to do with the affected area like the legs other than certain conditions such as warm legs or late day exercise can trigger the defective iron and dopamine metabolism to manifest itself.
This is my understanding of the disease. Comments always welcome.
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