Have suffered from RLS since my teens (I'm 50yo now). Sometimes it gets so bad, I get it in my arms & face as well. I had epilepsy until my late teens & also suffer from bipolar disorder. The only relief I get is to take codeine. It's the only thing that works.
All of these conditions are based on the brain. I was wondering if anyone has done research & /or suffered from other brain based conditions as well as RLS...?
Hi! It sounds strange that someone can suffer from Restless Legs Syndrome in their arms and face. Have you talked to your doctor about that?
I do suffer from fibromyalgia, another neurological disease that doesn't have the same symptoms as RLS. Fibro causes pain in a lot of places in the body. To be honest, I would rather have the pain, no matter how bad it is, than RLS. I'm sorry you have suffered from this horrible condition for such a long time. I've suffered from it for less than 2 years and it's a real nightmare.
You can have all over body RLS. I get it in my arms and back of shoulder on my left side sometimes, drives me nuts, as there is not much you can do to get relief in those area's. My RLS has progressed over the years and its only been in the last year or two its gone into my arms and shoulder blade., so its progressed again. Mostly its in the right leg, but also recently the last couple of weeks i am having it in my left leg more. I dont have any other brain conditions.
They should change the name then because it's misleading.
I'm not sure but I believe the "legal" name is Willis-Eckbom Disease.
(WED).
But I find that confusing too. It begs the question does WED refer to both primary and secondary RLS or just primary. Also whereas RLS classes it as a "syndrome", WED classes it as a "disease". Not the same thing.
The International Classification of Diseases (ICD) identifies it as "Restless Legs Syndrome".
This has been debated before.
Other possible names were suggested. However, RLS seems more inclusive, i.e. of all variants that could come under the label.
It's also 'compact! Restlegs legs, possibly arms or shoulders and maybe abdomen syndrome doesn't lend itself to a good acronym or abbreviation
I hope you take this in the spirit intended. I think I suffer Excessive Words in English Syndrome, (EWES) and I'm a bit sheepish about it!
Hi manerva, the legal name is Restless Legs Syndrome, when the RLSFoundation changed it to WED they found out they couldnt legally use it for their business so had to use RLS on business issues, Hence they changed it back to RLS . I think most of us agree that the name RLS doesnt really cover it, but its what we are stuck with. Have to blame Dr Karl Ekbom for the naming of it. 
I also have fibromyalgia along with RLS and PLMD.
Fibro came first about 4 years ago and then the RLS about 2 years ago and then more recently PLMD hit me.
I get this while awake, while relaxing or about to drop off.
I was wondering were you the same? Fibro first?
Yes, fibromyalgia was first, actually several years before. My RLS is relatively recent.
RLS is called Ekboms syndrome. I think the majority of sufferers do have it in there legs hence the simple name. I occasionally get it in my arms too. I find codeine works too but do take ropinerole I have had this condition for nearly 60 years. I do not have any other brain conditions.
Hi I’m sorry you are going through this and have been for so long . I started RLS at a young age - it started when I got over tired maybe on a Saturday night when I was allowed to stay up later . I was always told to stop fidgeting. It’s been on and off but got worse three years ago when I was diagnosed with breast cancer . I hat to stop my hrt that I had been taking since 32 due to bowel cancer . I then starting chemo radiotherapy and am on letrozole since for 10 years . I get RLS feelings in my legs arms and abdomen . I sometimes like yourself feel it’s in my neck shoulders - all over . It’s horrible. I have taken an anxiety drug on and off since my First cancer as my children were very young and I the consultants didn’t think I would live passed 2 years . I’m 53 now - 21 years later . I have had 6 major surgeries on my abdomen which resulted in a hole in my bowel 3 nearly 4 years ago so they upped my anxiety drug as I have fistulas and they were not sure how much I was actually absorbing . This along with taking letrozole which I have no choice but to take - horrible side effects but better than cancer returning sent my RLS haywire . It’s a vile thing to have and can ruin your life . No consultants , gp , oncologists specialists have any answers . I have iron infusions etc and have gone down all those ‘roads’ to try and help myself . 6 weeks ago it was really bad . Awful . I can’t explain how bad . I’d wanted to come down off my anxiety drug for a while - my mum has terminal cancer and the go thought it was best to stay in the dose . My huge surgery to try and fix my tummy has been postponed due to Covid . But when is it really the ‘right ‘ time ? So I gradually and very carefully reduced my drug as per my gp ‘s instructions and I’m now only in two thirds of what I was taking 6 weeks ago . It hasn’t been easy especially with my other health problems but I have done it . Can I stress that this is me and non one else and that nobody should up or reduce medicationS without medical advice .
The reason I am saying this is - things for myself with RLS have improved . I still get it but not as bad as it was . I felt like I was being pumped with chemicals ( which I still am ) that my body couldn’t cope with . RLS is hereditary in my family on both sides unfortunately. Due to the state of my tummy - I get in terrible pain at night so have co codomol 2 x 30 mg before bed . Only if it’s really bad pain . I try not to take it as it messes up my bowel . I’d I have taken it the RLS goes and I sleep 💤 😴 Bliss . But I will only take it if I need it .
Out of interest - I know distraction has helped me - I’ve got up , done the usual walking around , got some milk , everything but it only lasts for that period that you are actually doing it . I get sick a lot due to my tummy and suffer from migraines . Whenever I have anything ‘else ‘ wrong with me like the horrible pain of migraine which I had last night I don’t get RLS . It’s like my body can only cope with one thing ! I must admit and this is awful but I prefer pain to the feeling of RLS . I wish you and all you other lovely people suffering the best . X
Nerves have two ends, the brain is one and the peripheral nervous system is the other. Chronic inflammation can cause the peripheral nervous system to send spurious messages to the brain which then reacts causing rls. It can also be a driver of epilepsy. The chronic inflammation is probably caused by high insulin levels due to ingesting too much carbohydrate. If you don't believe me about the epilepsy just google 'carbs and epilepsy'.
Hi sorry to hear you have RLS and bipolar, either one bad enough, but the combination!
As others say you can get RLS in other parts of the body than the legs Some people get this as a result of augmentation, some get it anyway.
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RLS symptoms in the arms, shoulders, neck and abdomen seem common and I've had symptoms there. (Augmentation).
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To have symptoms in the face though, seems a little unusual.
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Since the principal defining characteristic of RLS is "the urge to move" I can't imagine it in my face.
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It sounds more like dyskinesia. Especially if you take an anti-psychotic.
Do you think the facial symptom may be a tremor? Especially if you're taking anything like Lithium orDivalproex.
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It's possible that ths particular symptom is something else. Can you describe it?
I also note you had epilepsy until your teens. There are different kinds of epilepsy, can you recall if it was given a specific name and were you given an explanation for it? It's possible the face symptom is related.
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I suffer Aspergers which, I suppose could be called a brain condition, but it's not really a condition as such, just that my brain is "wired" differently. It doesn't affect me physically.
There are quite a few brain conditions and to have any externally observable effect the condition would have to intefere somehow with signals coming from the brain to the muscles and organs. (motor nerves)
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There are other brain conditions which affect sensory signals coming from sensory organs to the brain. (sensory nerves)
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There are conditions which affect both e.g. RLS (although RLS is more to do with motor nerves than sensory). Multiple Sclerosis, Huntington's Chorea etc.
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There are brain conditions which only occur actually within the brain with their own unique consequences including the various cognitive disorders (ASD, ADHD) and mental health problems (bipolar, schizophrenia) that can only be inferred from a person's behaviour.
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ALTERNATIVELY
There are some conditions that might appear to be brain conditions, but aren't e.g. peripheral neuropathy.
Yeah codeine is all that helps me too ... I have just purchased a far infrared head set and nose clip ... and have been researching far infrared, frequency medicine and veda pulse that reads the heart pulse. I have also found an app that reads heart pulse and am communicating with the makers. After 30 years of this I have decided it's do or die. I am researching all I can and if I find any relief I will post to this forum in capital letters. I haven't yet tried the far infrared but there is a lot on the net about it helping loads of brain disorders and hormone disorders. I hope to open my home to sufferers who want to come and stay and access machines for relief eventually. I am in Gin Gin Qld if anyone is passing through and wants to stop in.
The Brick Wall Divide On RLS Philosophy
Deep Brain Stimulation
For those who would like to go the non-med route for RLS
Buzzy brain on bad rls nights
