Hi all. After about 3 years of the gradual onset of symptoms and searching to find out what’s going on with my legs, I have been diagnosed with RLS although I’m not sure I agree yet. My problem is that I can’t sit down, which is very frustrating and it’s for all 24hours of the day. If I do sit I get pain and tingling in my legs that keeps intensifying until I am forced to stand up and thereby relieve the problem. I can get away with about 10 mins before I start to get uncomfortable and can last, depending on the type of chair, for up to an hour before it gets unbearable. I have ruled out lots of possible causes. I have had an MRI on my lower back which came back fine. My bloods are within or just above the normal range set by the NHS. So iron, ferritin, vitamin D and B12 magnesium are all ok. The only one negative thing that showed up was that my red blood cell count is just below the lower limit of the normal range. As the doctor didn’t contact me and the nhs receptionist said everything was fine, I am guessing it’s not a problem but I have passed on the results to the neurologist that diagnosed my RLS for his opinion on the red blood cell count. So far I have refused any medications as I want to try and exhaust all areas before I go down that route.
So I have one main question. Does anyone else suffer like this? as I can’t find anyone on the net complaining of exactly the same thing. The best I can see is that others have an urge to move their legs in the evenings if they sit. I don’t have any urge ever to move them for the sake of it. I only move them because I am forced to due to the pain intensifying. I basically have to spend my days standing or lying down, in which case I just get very mild tingling.
I would really welcome anyone’s thoughts and experience. Many thanks.
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jim32
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I must admit I wonder if the medical profession aren’t diagnosing people with RLS for anything to do with legs when they’ve run out of ideas. Having said that, your symptoms might hit home with someone else on here.
I don’t get pain, just the classic itchy/creeping sensations in my thighs. Most people get it in the evenings when relaxing and, of course, at night. However, when I was a child I would suffer with it at any time of the day and night, which made school extremely uncomfortable sometimes.
I’ve found Tramadol helps me, though this is such a strange condition that no two people seem to be helped the same way.
The need to move your legs with RLS isn’t involuntary, in case you were thinking that, but is more the only thing that stops the sensations, which build up to be so bad that it’s torture not to move so you’re compelled to.
Don’t know if any of this is of help, but I hope you find something that gives you relief.
Yes, I would say it's the urge to move to try to relieve the sensation which different folk describe and probably feel in different ways. I sometimes do puzzles standing, also knitting and reading.
..... and at least the medical profession now have RLS on their radar! They're kind of damned if they do and damned if they don't! The only thing they can do is tune into what is being described and try to see a pattern which fits a diagnosis. <edicine is an art as well as a science!
Thanks Alison. Yes its become clear to me now that its not simply an urge. I just needed clarity from someone with RLS. So I now feel that I do have RLS. Its taken 3 years to get a diagnosis so its good to know what club I am in!
Yes, I wish! Still a long way off it seems but being on the radar is a start. And sometimes after many years of thinking and lots of ideas there is a sudden light bulb moment. I've seen it in several other conditions when someone suddenly gets it. Fingers crossed!
Thanks MumofSam. Yes your reply helps and am very sorry to hear you had this as a child. The guy I saw is regarded as a specialist on RLS so there is every chance he is correct with the diagnosis plus he had all my history to look at to see where I have been and what was tested. One of the pains I get is mainly in my bum cheeks when I sit or, to a lesser extent, lie on my back! So my RLS is literally a pain in the ass. Its like a stinging pain that intensifies. To try give you an idea of what its like, imagine sitting down on a very skinny metal bar 1 or 2mm think. After a while it would start to hurt and would get more painful until you stand up. I also get the tingling in the legs which becomes unbearable if I dont stand up too. I have not taken any meds ever for this nor am I on any other meds. The RLS is very slowly and gradually getting worse so I am looking at exhausting other avenues before I have to throw in the towel and start taking meds.
Thanks Kaarina. I had seen this when searching on the net a while ago which seemed to say I dont have RLS. I mentioned this to the RLS specialist when I saw him and he said that the RLS umbrella is now much wider and I do have RLS but not the classic symptoms.
The fact you say the sensation becomes unbearable and then you relieve it by standing makes me think it is RLS. Standing/moving relieving symptoms is key.
Check your bloods again. Normal serum ferritin is around 15 but that's way too low for people with RLS. We need serum ferritin above 100. That could explain why you have started feeling the RLS.
What other meds are you on, as certain meds make RLS worse, like anti depressants and anti histamines.
have a good read on this site and you will find a lot of helpful info.
Hi Joolsg. Yes I have come round to believing I do have RLS. My serum ferritin was 89 a couple of weeks ago before I started any iron supplements. It would be good to get this up higher. As i mentioned above, my iron was just above the normal range at 32.4 but the red blood cell count was below the normal range at 4.46 so I am not sure yet if this is a sign of a problem so am waiting on feedback from the RLS specialist on this.
I am not on any meds of any kind, have never had reason to until now (the RLS specialist wants me to start on Gabapentin which scares the hell out of me). I just started a week ago with a detox as I want to rule everything out as a trigger. So no more alcohol, caffine, gluten, dairy, suger etc. I want to get back to basics and see what happens. I have just turned 50 and have always led a very health conscious lifestyle so if I just take meds now I will never know if I could have fixed it with diet and supplements etc. Everyone else around me is telling me to just take the meds but they are not in my shoes.
Have a look on here. Lots control RLS with low FODMAPS diet and supplements. Magnesium citrate taken at night & magnesium oil on legs is a good place to start.
Tramadol does help a lot of people. If there is one thing we have learned, and i have learned in 28 years of managing RLS groups, no one thing works for everyone. Having said that, Tramadol IS one of my meds, too.
89 is not a bad number for your ferritin. They do like it to be around 100 for people with RLS. For people without RLS the "normal" level is 12-15. So 89 is not awful. Make sure you get tested after you take it for a while. You do not want it too high either. iron overload can be dangerous, too.
I can identify with some of what you say. I often have to stand watching tv for example and can sit and eat but need to quickly get up. I stand on buses and trains and find car travel problematic. Coming away from last year’s holiday resort I lay on the back seat of the coach. Going I stood by the driver. I don’t think this will help you much but you are not alone!
Hi Martino. Really good to read your words as you are the first person I have found that cant sit and has to do the things I have to do too, like standing on trains, lying on a coach, standing at the loo areas on airplanes except for take off and landing etc. For some reason I can sit longer whilst driving, for about an hour and its probably the seat design that helps. Although I am getting signs that this timeframe is gradually reducing along with everything else with the RLS. For example I love going to the cinema but can no longer do this. The last time was about a year ago. Meals out are a thing of the past too, last one was only at Christmas but it was very hard - the alcohol seems to block the pain which helps prolong the sitting but then I pay the price for a few days afterwards.
So have none of your meds helped you sit? Or maybe you are not on any? I have stayed away from meds so far (see above) but my RLS neurologist wants me to take Gabapentin as he thinks it will help. Have you tried this drug?
Other than the side effects, heres my take on the why I dont want to take it. If it does help me sit, isn't it only because its blocking me feeling the pain. And if so, surely the pain (which I wont feel in theory) will keep intensifying if I remain sitting. After enough time/intensity I will start to feel the pain as the drug isnt strong enough to relieve that level. So then the doctor will look to increase the drug and so on it goes. At least by not having the drug I can feel the pain and I can stand up to stop it. I wont know the answer to this until I try it but I will cross that bridge at that time, but I am just interested in your experience.
Yes I am on meds. Quite a bit really but I also suffer Small Fibre Neuropathy . I take 2700mg of Gabapentin, 200mg of Tramulief and 200mg of Rotigotine. This combination
has my leg movements lessened. I still have a lot of pain but the Gabapentin does help with this.
In terms of needing more I am sure you are right. Having said that I am nearly 70 so perhaps I am less bothered than a younger person might be
But the bottom line is Martino that you still cannot sit for more than a 10 mins or so even with those drugs. Is that right???
If so can I ask did the Gabapentin help initially in allowing you to sit for a reasonably longer period? and are you having any bad side effects from it? many thanks
It’s a difficult question to answer. I have initially been on clonazepam then moved through dopamine agonists settling on Rotigotine and Gabapentin then the Tramulief was added. I think the Tramulief was very helpful in controlling the leg movements. Thankfully I have not suffered very much from side effects barring a bit of brain fog. I can sit sometimes for as long as an hour without the urge to move but at other times I just have to stand
Hi Twiggster. Yes standing and lying down is okay, just minor discomfort. What you say is something I say to the various medical people I visit i.e. that it must be something I am compressing. But no one has anything to say about that. I did have a varicose vein laser procedure 3 months ago as it was the only clue I had that might be the cause. The surgeon said my symptoms were not due to the vein so didnt think it would help. I had the procedure and it didnt solve the problem, although I think that leg is now not as bad as the other but its hard to separate the feelings in each leg. I intend to visit a physiotherapist soon to see if he has anything to add along the compression theory. The vascular theory has never left my mind as a possible cause.
It does not sound like RLS, because you would have an undeniable urge to move your legs when lying down as well as sitting. It seems like you are experiencing a pinched nerve when your legs are bent. Just doesn't match with RLS symptoms. The dopamine agonists make me ache all over.
Hi RLSBOGEY. Not a pinched nerve as I have had that kind of thing before, I do have just mild tingling/creeping feeling when I lie down or remain standing still. Its not the bending of the legs either because if I can sit and get someone to drop the chair backwards to the floor so I am looking at the ceiling then there is just a mild discomfort same as lying or standing. Maybe the lying down is coming soon as it is very gradually getting worse
Seems like everyone is affected differently and the people who find relief use a combination of drugs rather than one drug. We keep searching for answers.
I wish that worked for me. I get the RLS when I lie down to sleep and sometimes when sitting in the late evening. Mirapex made me ache all over, Requip was similar but not quite as bad. Neupro patch was better but ceased working so now I am back on the Requip, 1 mg, in the late evening. I have tried taking half a percocet 5 tab with the Requip and found relief and better sleep. My doctor doesn't want to prescribe opiods so I am frustrated and suffer through each night with RLS shakes in my legs the first hour or two and the body, feet pain as well. RLS is always worse when I am lying down versus sitting. No one seems to have identical symptoms.
This is sooooo common to RLS. Odd you cannot find anything like this on the internet. Everyone who has RLS has this "sitting issue" at one time or another. Hence the name Restless Legs Syndrome.
I see no point in continuing to suffer if medication can help. If it is RLS it will only get worse probably. Medication and various foods can exacerbate the condition. so many people have this problem and it is different for everyone.I do not know a single sufferer who does not have to try to deal with it without resorting to medication plus eliminating items which seem to worsen the symptoms. As we speak I personally have had two attacks since yesterday and inadvertently had soup which must have contained gluten. So thank goodness despite being up all night with medication I can at least read. I have been coping with this from the age of 10 and am now 81 it is not a condition I would wish on anyone.but it is better than some other things.
This describes me jim32. Can't sit for more than 5 minutes. Can lie down. Can also sit with legs up on a high stool or up on sofa. Other symptoms electoral pulsating through body. Neurologist strongly suspects RLS but having scan this week to confirm. I NEED a solution to sitting down soon. Can't socialiseI have a standing desk now but can't go out to socialise and will miss 2 events this month through not being able to sit.
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Make sure you get tested after you take it for a while. You do not want it too high either. iron overload can be dangerous, too. 
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