How do you know that you have RLS. - Restless Legs Syn...

Restless Legs Syndrome

21,297 members14,932 posts

How do you know that you have RLS.

legpain profile image
17 Replies
Written by
legpain profile image
legpain
To view profiles and participate in discussions please or .
17 Replies

The International Restless Legs Syndrome Study Group (IRLSSG) has proposed a set of diagnostic criteria for RLS. If you suffer from all four of these symptoms, you may have RLS. We recommend you visit your GP should you have any health concerns.

Diagnosis of restless legs syndrome (RLS) can be made if all of the following four criteria are met:

1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" or "burning" to "Elvis legs". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.

2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.

3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.

4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night

eileen49 profile image
eileen49

your GP should send you to see a neurologist who will do tests to see which neurological illness you have ie RLS, Parkinsons Disease, MS, etc etc and mine recommended medications to my GP.

m2db profile image
m2db

Hi, my GP sent me for a sleep study at Papworth Hospital because I was constantly tired. The findings were I have RLS and PLMI (periodic limb movements). PLMI happens while I am asleep, my leg's kick on average 43 times an hour. I am not aware of this happening, but it stops me going into the deep restfull stage of sleep, which is why i am always tired. I now take 2mg of Ropinirole one hour before i go to bed which seems t help. My legs were constantly on the go while I was trying to get to sleep, but i didn't know it was an actual condition, I just thought I was fidgety. I'm so relieved to have a diagnosis.

evianfan profile image
evianfan

does anybody else get RLS in their arms? I've started to get the same sensations in my arms, and it's driving me mad....the sensation is worse than having it in my legs

harecatcher profile image
harecatcher in reply to evianfan

Hi - yes we have discussed this in other threads including the person whose Doctor thought it was a joke having RLS in your arms (prat!) When I get it in my arms, its worse than in my legs. A few of us favour Restless Limb Disorder rather than Legs but then others get it in torso, neck etc

I'm on 3mg roprinole every evening for it

Simon - Halifax Yorkshire UK

CathyS profile image
CathyS in reply to evianfan

Absolutely! Sometimes in my arms, back, and even hands. It's so different than any other sensation that you KNOW it's RLS, regardless of where it turns up.

Doversoul profile image
Doversoul

Yes - generally on the right side - my RLs typically starts in the LL and when that calms down the RL starts - and often RA chips in just to ensure I am suffering. I was recently admitted to casualty with all three going at once . The first episode started in the mid afternoon, calmed down and then started again, that's when my wife called the ambulence as I was having a panic attack as well. Got to hospital left alone for a couple of hours while more important patients were seen , then got another attack - which medical staff witnessed. However, they were unable to offer any assistance and as soon as the attack had finished I was told to go home, and see GP.

£45 taxi ride back home - with recurring symptoms - felt like shit !

in reply to Doversoul

I'm a 45 yr old woman..I started crying when I read your words

here because I have that exactly..in that order. RA, RLS, and Panic

Attacks. I am on meds for all 3 and I have never gone to the hospital

but I have wanted to go when that happens.

The less sleep that I have, the more the panic sets in. I was in the hospital

for one surgery and the post drugs allowed me to sleep very well.

I think those nights there were the best in my life. I can't remember

better nights than those when I was on Morphine in the hospital.

Only nights that I slept in many many years.

nightdancer profile image
nightdancer

Elisse's answer pretty much covers it. I will just throw this in. There ae several levels of severity of RLS- from a mild annoyance, which usually progresses over the years, to severe, unrelenting, torture all night long and during the day, too. You have to have that "urge to move"; such an urge that cannot possible be ignored. and, remember, I always say this to new people- RLS is not leg cramps. leg cramps are muscular, RLS is neurological. I have had RLS for 42 yrs. there are several good web sites to read about it, the best being rlshelp.org.

If you cannot sit still in cars, planes, theatres, school recitals, without having to get up and pace after a few minutes, that is RLS. If you to to bed and your legs still want to move and will not keet you sleep, that is RLS. do you kick in your sleep? That is PLMD, and your bed partner would be more disturbed by it than you would. PLMD happens when you are asleep, and while you may not be aware of the movements at the time, your brain is getting arousals every time your legs move, so you do not reach the right stages of sleep, in order to feel rested in the morning. RLS can run in families, or can have several underlying causes. The web site above, plus health.com (search Restless legs in their box) There are videos of me and other members of my yahoo support groups, telling their stories in video and in print. Time magazine started that section of the website 4 yrs ago.If you do look at the videos, remember I weighed 60 lbs more then than I do now, becase of severe weight gain side effects of my meds plus night eating, ( which, thankfully has stopped) YOu can see all the water weight in my face. YUCK. :o) rls.org is the RLS Foundation. Their site has great info, just harder to find it on there sometimes. On rlshelp.org there is ONE treatment page, with a list of foods and drugs to avoid. All in one spot. :o)'

so, legpain, do you think you have RLS after reading our answers? Feedback would be good here, so we can see if we helped you at all. Knowledge is power, so we have to keep up on all the news and new things out there to help us cope. support is key, since severe sleep deprivation can kill, cause all kinds of issues.

If you seriously think you have RLS, ask your doctor if he/she has treaated anyone with RLS, and how he did it. This is why you should read up and ask as many questions as possible. It would also help YOU more if you gave us more details on what your symptoms are and WHY you think you might have RLS?? We are all just guessing here until you give us more info. :o)

Donna/USA

in reply to nightdancer

Donna. I have RLS and have never been given information about

diet. I appreciate the information. I'm at my worst tonight so that's

how I stumbled upon this community. This really helps me.

evianfan profile image
evianfan

OK, I'm 42 and have type 1 diabetes and diabetic neuropathy. About 18 months about I had symptoms starting whilst I was in hospital after a sever episode of diabeticketoacidosis where I started to get a sort of electric impulse feeling in my legs which is only "eased" by moving....my endocrinologist has agreed - after about 8 months that RLS is another complication that ties in with the DN. I've had a neurologist agree that it is RLS and I've been left under the care of the endo for treatment. At the moment drugs are being discussed between the 2 of them as whatever I'm prescribed needs not to clash with the ones for DN - as the pain I suffer from that is currently worse than the symptoms of RLS - I'm on Gabapentin, codeine & Tramadol along with Domperidone for Diabetic Gastroparesis & obviously insulin

nightdancer profile image
nightdancer in reply to evianfan

42 is HARDLY too young to take those Parkinson's meds that are approved for RLS in the UK. I hate to say it, but your doctor is so behind the times on his RLS info, it is really sad.

ANY RLS web site has postings from people that are 16 to 93 yrs old. Nerve pain can really suck big time. I have had operations on my neck and back, all to do with the nerves and broken vertebrae. my RLS started when I was 14 after that. gabapentin is for nerve pain- one of it's uses, also helps with RLS in SOME people. I suspect since you are taking Tramadol and codeine and gaba. Those are all meds used for RLS anyway, off label, but they are more effective than the PD meds for a lot of people. I have gastroparesis, which for those of you who do not know, it is when your stomach does not digest everything (simple explanation) and it eventually comes back up instead of going the right direction. :o( It is a pain, so I eat very small meals 5 times a day, so as not to overload it. I have a feeling that your RLS would be much worse of you were not taking the tramadol and gabapentin. and, those meds are used in conjunction with the Parkinson's meds, too, when someone needs more than one drug to calm it down. many, many, people who have RLS have to take more than one med, a "cocktail" if you will. :o) I would say that if you have 2 or 3 doctors telling you that you have RLs, then you do, but the Amitriptyline has to be at ;least discussed as a major trigger of RLS. many other meds can be used besides that to help control pain. I was first given it t help prevent migraines, but that did not help that problenm, plus it kicked my RLS into high gear. RLS is tied to diabetic neuropathy somehow, they just do not know how yet. My endo also tells me that my body does not use insulin very well, so looks like more testing for me, too.

I hope we are helping. :o)

Donna/USA

evianfan profile image
evianfan in reply to nightdancer

thanks Donna - yes, it's suspected that the RLS was triggered by the neuropathy.

Thanks for your detailed replies x

I am getting confused with this thread, the original question from Legpain was...how do you know that you have RLS.

We seem to be deviating from that question.

Would like to hear back from Legpain as he/she put the original question up. I think we would all like to know if any of what has been posted has answered the question.

nightdancer profile image
nightdancer

Yes, we are wandering here. If you have a question that you want to make sure it is answered, put it up as a new question. We will not see all the comments hidden in here when the thread starts to get off topic. :o) anyway, I am sending this link in, also. webmd.com/sleep-disorders/r... This may help answer the question, too, and it would be great to get a response from the asker, so we know if we have helped you at all, or confused you more! lol I would like to know if you are asking for yourself, or a family member, or friend? it is not clear at all why you are asking this in the first place. The more details the better to help you with.

"To be ale to ask a question clearly is two thirds of the way to getting it answered right." :o) (John Ruskin)

legpain profile image
legpain

Hi, sorry i haven't replied before now. I'm laying in bed at the moment on my back and i've got this odd sensation in my left leg and i have this sudden urge to move my leg. I'm female for those who were wandering. I've had this for a few months but seems to be getting worse just lately. anyway its driving me mad so i'm logging off to try to get rid of it. nite all

legpain profile image
legpain in reply to legpain

Still suffering with the damn condition, my right leg is driving me mad, last night it was my right ankle today its the whole thing.

You may also like...