I've just switched to pregabalin after 1800mg gabapentin per day didn't have much effect on my symptoms, currently on 75mg in the morning and 150mg at night and will increase gradually.
Jury is still out on whether I actually have rls or not, fits the criteria apart from not worse at night, legs just crap all the time really whenever I'm not moving. I managed to see a neurologist who suggested the gabapentin rather than DA, but gp has suggested trying pramipexole until the pregab has an effect. (Hospital suggested switch to pregab from gabapentin). Ferritin 110 at moment.
So - I tried the pramipexole, just low dose, for a couple of nights, but no effect on symptoms. Does this rule out rls?
Also-what dose of pregabalin are people on who find it works for daytime symptoms as well as night-time?
Thanks everyone x
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Nottsali
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I believe it's usually accepted that if your symptoms match ALL the 4 criteria for RLS, then you have RLS. However more recently it seems that a fifth criteria has been added which says something like you have RLS if your symptoms match all the 4 criteria PLUS all other explanations have been ruled out.
In your case, as you point out, your symptoms do not match ALL 4 criteria. Additionally what has been done to rule out other explanations for your symptoms? If nothing, then that's 2 out of five criteria that don't add up.
RLS is particularly a "circadian" disorder and if symptoms don't vary according to the time of day, then the symptoms are not circadian, this is is a significant mismatch.
I'm not sure that the success of a DA in controlling symptoms is diagnostic of RLS but taken along with the missing matched criteria and possibly not ruling out other explanations seems to cast doubt on you having RLS. Pramipexole IS usually very effective at relieving RLS symptoms almost immediately.
In my experience, doctors often ask you to describe your symptoms, then give you very little time to do it. The other thing they do, (I have suffered at least two major misdiagnoses causing me considerable inconvenience) if your symptoms vaguely fit the criteria for a particular condition they very quickly jump into assuming they're right. They very much rely on snap intuitive decisions. This is particularly true if your description of your symptoms is vague.
Sorry, I just remembered a third misdiagnosis.
The judgments doctors make also depend on context. For example if you see a doctor in a sexual health clinic with a given set of symptoms they will diagnose a sexually transmitted infection. If you see a urologist with the same set if symptoms their diagnosis could be completely diffetent! (It was for me!). So, if you see a neurologist, they'll probably diagnose you with a neurological disorder.
In short, they make mistakes.
Perhaps if you described your symptoms here, in detail, and took your time about it, RLS sufferers on this site might be able to say, yes or no, that sounds like what I experience. Or they may be able to say, yes, I have symptoms like that, but it's not my RLS.
Detail is important, for example saying your legs feel "bad" isn't sufficient, it needs to be more descriptive of the qualities of the feeling.
The other thing is you might like to say if and what other health conditions you have as RLS sufferers on here also have other health conditions that are similar to, but differentiable from RLS.
Overall, rather than looking for reasons to rule out RLS it may be better to look for other explanations for your symptoms that can be tested. There is no single test for RLS.
You mentioned in your original post that your legs were really bad 24/7 and that your arms were affected ( the MRI showed degenerative disc issues) and you say above that your legs are not worse at night.
Do you manage to sleep? Do your legs wake you up at night several times? Does walking around instantly stop the tingling/pulling sensation?
Most people with RLS will find the condition worsens at night and sleep becomes troublesome/impossible.
My arms are ok most of the time now. Yes walking about does relieve the pulling/tingling sensations, and when I'm sitting I feel the need to flex and circle my ankles/rub my knees and thighs. I'm sleeping better on the pregabalin, but have had trouble sleeping prior to that, worse since my earlier posts, constantly trying to get comfy, finding a cool spot in the bed. Saw a spinal specialist who said they couldn't attribute the symptoms to anything on the mri.
Manerva-symptoms are throbbing and heavy feeling in thighs, especially first thing in the morning, and bubbly/prickling/tingling in both legs but worse in left, continues pretty much all day, especially when sitting/lying down. Much better when walking/exercising.
Thanks both for replies, am considering paying for another neuro visit.
I wish I could advise further, as it's clear a lot of your symptoms fit the RLS diagnostic criteria, but some seem to be counter indicative, like your legs being worse first thing in the morning. Have you ever been given painkillers containing opioids, like codeine or oxycodone? Pregabalin can help nerve related pain, but the opioids work on both nerve & muscular related pain. Pregabalin has a sedating effect which is why you are sleeping better. How many times a night are you woken, and how many times a week does it happen?
Maybe a sleep study would help? If the neurologist could refer you to a specialist sleep centre, it may shed more light on the symptoms you have been experiencing.
Thanks-gp reluctant to try opiods, but will ask for that next if no joy with pregabalin.
I'm affected all the time, but wakung probably 3/4 times a week with it, but not for long. I find it hard to stay in bed once I wake, used to love lie-ins with a book!
I am on 300mg a day spilt into morning afternoon and evening they do help my RLS make sure your not on anything that triggers rls like amytryptiline I am on 50 mg of that as well for bursitis but I make sure I take that early afternoon so it doesnt start at night time.. xx
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