I've wondered for a while if RLS tends to affects people in specific body parts.
In my case, before medication, I could have RLS in my arms, back and right leg, but the left leg was without a doubt the crazy one. Since I've been under Pregabalin and Methadone, it's almost exclusively the left leg (let's say 95% left leg, 5% right leg). I don't have any other neurological issue with my left leg, no tingling, no problem moving it, normal reflexes, etc. It's been like that since I was a kid. If RLS is a brain and central nervous system problem, why is my left leg disproportionately affected?
Am I the only one experiencing that kind of situation? What about you?
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No, it's been much less troublesome since I started on Magnesium Citrate. If I was better at keeping sugars, sweeteners and other triggers out of my diet, and regularised my exercise, I'm sure that I could reduce it further. I would however like to discover why it affects one leg more than the other
Have you had your ferritin checked? Improving it to 100 helps 60% of people. Also have you thought about taking gabapentin? It completely controls my RLS.
My Ferritin levels are consistently between 200-300: iron supplementation was never helpful to me. And I prefer not to become dependent on Gabapentin or any other prescription drug while my symptoms are comparatively mild. RLS can still be annoying but generally so much better in the years since discovering C6H6MgO7.
Understood. Are you taking any medicines or over the counter supplements? Some can make RLS symptoms worse. If you are and they do I may be able to give you safe substitutes.
My left leg is affected far more than my right, I’d say 95%/5%. My left arm is affected, right arm is fine. The base of my spine and back of my neck are also affected, and sometimes it feels as though it’s coming from the area between my shoulder blades. Interesting that so many of us are more affected on the left when it comes to limbs.
Yeah I'm curious because I've read a ton of scientific papers on RLS and, to my knowledge, no papers has explored that aspect of RLS.
I know absolutely nothing about what's happening at the brain/nervous system level, but could we reasonably expect an equal distribution of 50% people more are more affected in the left leg and 50% in the right? If not, then is there something there?
I don't know either the brain/nervous systems either bit I if I had to choose a side I would definitely choose my right leg as the worst. I don't really know why we all suffer from RLS but I do know it causes us sufferers a great deal of anguish, well it does me anyway. I saw a consultant at the pain clinic and he suggested I take amitriptyline and you know I very rarely suffer from RLS now. So try that and see what happens, I take 30mg at night. I wish you well.
I do hope you are not a person who suffered from the side effects as it can have horrible side effects. I hope you have or when you find something that suits you. I wish you well.
Yes it works great for me. As I said before I take 30mg a night and I get RLS about once every 2-3 years. It can make you drowsy that's why I take it at night. Otherwise I have no symptoms. I take 3 x 10 mg tablets, they are blue in colour and quite small. I wish you sincere good luck if you are thinking about taking them and I hope they work for you.
Many people with RLS, like myself, don’t suffer pain. Mine’s more like my muscles are itching - leastways that’s the best I can describe it. I’m glad amitriptyline works for you, but it’s not something I’d want to take.
That's fair enough not everyone likes the drug. I think you described RLS very well as I find it ssoooo difficult to explain to anybody. You did very well. I wish you well.
My RLS is completely even on both sides, and that’s despite my left side having more nerve issues than my right. It’s almost always legs but very occasionally upper body and arms as well.
Mine switches on and off with no rhyme or reason. Sometimes it’s both legs. Sometimes it’s arms and the worst thing is when it’s my hands. I started when I was 10 also. It just gets progressively worse. But I’m on Neupro and Belbuca and it’s been much better. I was on methadone 5mgs. But it made me drowsy during the daytime so I switched and it’s better. Sometimes though, the meds just don’t work.
Just curious. Looking at your post from 3 years ago, you suffered augmentation and were reducing neupro. And now you are either still on it or back on it?
95% right leg, 5% left. The accepted literature says this is "rare" and apparently that's one more false assumption.
Sometimes there is a steady burning sensation in my right calf during the day. After a short experiment with ropinirole, both arms can be affected, and at times they bother me even when my leg is quiet. I have found no dietary trigger, but any kind of exercise make it worse. I think there must be a mechanical/structural issue in addition to a problem in the central nervous system. That crawling/wound-up sensation only happens at night, but the classic nerve pain symptom--burning--happens day and night.
Stretching helps--why? Why does walking help? And how about the member that got relief from sleeping with a pillow between her knees? Why would those things help if the problem was exclusively in the brain?
But in the end, maybe it doesn't matter if there's no way to find and cure the peripheral nerve that is causing the bad feedback loop. I wonder about acupuncture. I suspect that could be "hit and miss."
Thank you for posting this question. I am glad to read that I'm not the only one.
I too have the burning sensation on the right calf (the outside edge). It varies in intensity, but it can be so sensitive at times, I can't stand to cross legs over it. Is that really RLS? I don't have the urge to move it. Sometimes I just feel like it is on the verge of a massive cramp, like anything could trigger. It goes down into the ankle and I've had the ankle 'give way' when stepping on it.
Do you think that is RLS? I have had bothersome RLS at times, but nothing like what folks here report (except for a brief couple of days after two months on Pramipexole - devil's brew - when I suddenly augmented).
I’m not sure at all. But I think your regular doctor would be able to give you guidance on what to pursue next. The one hallmark sign of RLS is the urge to move your legs. I suppose it could be RLS plus impingement of a peripheral nerve, and it may not be easy to parse those two things apart. Weakness and burning are indicators of nerve involvement, and I would guess that muscle cramps are more metabolic. It may involve trying different things to get a diagnosis. I hope you get some answers.
Thanks. I am going to find a neurologist. I was diagnosed with migraines, got an Rx that for the most stops one in progress and then my Internal Medicine Dr. just writes for refills. It has been about 10 years since I went to a neurologist about them, so time I guess to get caught up on that and the leg issues. I'll report back.
Yes, please do. The RLS Foundation (RLS.org) has a search engine that will find doctors in your area on their “approved” list for treating RLS. If it’s not RLS, he or she will know what to do next. Good luck!
Have you been diagnosed as having RLS? All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Do you think you might be suffering from sciatica as well? I do, and that can definitely cause pain, like cramp or burning, in my right calf and buttock area.
I don’t have RLS “pain”. The only pain I suffer from is sciatica, which is on the right as is most typical for sciatica. I had major surgery for spinal stenosis a few years ago, which greatly helped the sciatica pain I was suffering from, but still get some pain.
I’ve suffered from RLS my entire life. For me it’s like my muscles are itching, or the sensation you get when you need to stretch a muscle multiplied hundreds of times. Funnily enough, inflicting mild pain on my legs actually eases the symptoms, albeit temporarily, so quite often I thump my thigh muscles to alleviate the sensations.
Until my brain was messed up by Tramadol and Pregabalin, which I was prescribed for the sciatica pre-surgery, my RLS was evenly in both legs only. As I weaned off said drugs I found it had suddenly spread to my left arm, the base of my spine, back of my neck and sometimes feels as though it’s coming from the area between my shoulder blades. And now it’s more in my left leg than right.
Yes, though thankfully I don’t always get them all at the same time. The neck is the worst as it’s really difficult to relieve the sensations, but none of it’s great of course. However, I’ve found that since I stopped eating bananas I’m not suffering as much, though it’s still not gone away. The sciatica pain can occur at any time but, like everything, you notice and feel it more when in bed and trying to go to sleep.
I tend to tell the doctor, rather than the other way round to be honest, as doctors know next to nothing about RLS. It’s definitely RLS though as the sensations are the same, make staying still impossible and torture, and are relieved temporarily by movement or stretching the muscles. There are quite a few people on here who also have RLS in the base of their spine and arms, and other places too. Don’t know if anyone has mentioned their neck, but that’s basically the top of the spine really. Never had these additional problems until I started reducing Tramadol and Pregabalin to wean off them. Some three years later and I’m stuck like it. There was a GP who posted on here some time ago about experiencing the same thing, saying she thought Tramadol had caused permanent damage to her dopamine receptors.
I’m more right leg than left prob 80/20 and I’d say my right arm is also prob worse when the arms get going but I do feel like the arms end up being more equally upset together than my legs.
Both legs bug me, but it’s probably more frequent and stronger on the left (I’m talking the PLMS aspect). However the constant tingling up the leg and RLS is much worse on the right. My arms are now so infrequent I can’t remember if one was worse than the other.
I suffer with restless leg syndrome and I take amitriptyline 30mg at night and I very rarely get it. I too suffer with both my legs and arms and it is so awful. I have to keep moving my arms and legs and I used to just dread it coming back. The pain clinic consultant suggested that I take amitriptyline. I hope this is a wee bit of information for you.
Ferritin is checked with a blood test. Improving it to 100 or more helps 60% of people with RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferritin saturation to be over 20% but less than 45%. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.
Thankyou that was a great explanation of ferriton in the blood. It was very easy to understand. I have made an appointment with my GP. and discuss this with him. Thankyou so much.
In the 10 years I’ve had RLS it has evolved over the years.
It first began mainly in my left calf, occasionally affecting my right calf. Then the right calf became more problematic.
As time went on the sensations would alternate between legs. Bad nights would see it go back and forth. There was generally always a brief 10/20 min pause (like the storm in the movie A Perfect Storm) before moving to the other leg.
In time the sensations would begin in the heels of my feet before moving up to include my calves.
The sensations would also vary over the years from the usual crawly, wound up feelings to tingling, cramping, tugging or electric jolt sensations. The worst periods were getting off siffrol in 2020 or when I had eaten trigger foods such as alcohol, soft drinks and sweets (which was pretty much all the time before April 2021)
These days the heels continue to be problematic with sensations eventually moving up the leg. I’ll have periods where the sensations have a pattern, (ie left heel/leg will start before the right or it will only be in the left leg) then the pattern will change to the right heel/leg first and so on.
Lately I’ve been concerned that my right forearm has begun to get RLS but it may be the tendonitis from the mouse of my computer. The jury is still out on that one.
My right leg . Lately seems to be in lower back, but I just can’t pinpoint it. I’ve named it ‘leg migraines’, since it’s around the same time most nights. When the episode is over I just feel drained. Does anyone else feel that way?
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