My Doctor has diagnosed me with RLS and said I need to start taking some medication called ropinirole. My symptoms are: for the last 4 months or so, when I sit in an armchair (usually with may legs folded and at my side) my buttock muscles keep tensing and untensing which causes my thighs to twitch. It does this at least once every 10 seconds. When I lie in bed, either on my back or front, my thighs, calfs and feet twitch constantly which makes it difficult to get off to sleep.
I get no pain at all or any other sensations, just the twitching.
When I look on the NHS website about RLS it says "The main symptom of restless legs syndrome is an overwhelming urge to move your legs. It can also cause an unpleasant crawling or creeping sensation in the feet, calves and thighs."
This definitely isn't how it feels to me, I get no urge or sensation, just the twitching.
One thing to note, in the daytime when I'm sat at my office desk I get no twitching at all.
Do my symptoms sounds like it could be RLS or maybe something else? Does anyone else have symptoms the same as mine?
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ljs007
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It seems to me, personally, that you don't meet any of those criteria. Much more likely to be a nerve/ muscle issue, especially if you are sitting on your legs and possibly trapping nerves or ligaments??
Do you get to sleep ok, without fizzy wizzies in the soles of your feet making you get up and walk/ stamp around to try stop that horrible feeling??
Secondly -- and more importantly, Ropinerol is not a good medication for RLS.
It is an outdated med for RLS ,ok, but the frontline medical knowledge has moved on a bit since those days!
Gabapentin and Lyrica would be first line, after having your iron levels checked, and possible triggers eliminated.
You could try taking magnesium citrate- about 100mg at first-- and see if that relaxes your muscle twitching. Don't exceed 400 mg in a day, unless you're happy to work from the loo!😝
Also, if taking magnesium, please check it isn't contraindicated for any other medications you may be on.
Your pharmacist should be able to advise on this. Or just Google it.
If it is RLS, don't take ropinirole. It is no longer the first line treatment for RLS since up to 70% of people taking it will eventually suffer from augmentation which believe me you don't want. Gabapentin is now the first line treatment for RLS. This is what is used to diagnose 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. If you don't meet the above, you don't have RLS. If you were having these in sleep, then I would say you have PLMD: Periodic limb movement disorder (PLMD) is a condition characterized by twitching, flexing, and jerking movements of the legs and arms during sleep. But since you don't, I would see a neurologist.
Looking at the comments, I don't think I have RLS, like Madlegs1 said it sounds more like a nerve issue. SueJohnson your number 3 point about symptoms are dormant in the morning, that definitely isn't me, as soon I wake up I start twitching again.
It may be Periodic Limb Movement Disorder. Generally the movements with this disorder occur in sleep but can most definitely occur when awake. I've never read of buttock muscles tensing being part of the disorder.
A sleep study could determine whether you have this but as other members suggest, it may be worth investigating other explanations.
It could be that you Periodic Limb Movement (PLM) which is sort of related to RLS. My husband has both and had PLM for decades before being diagnosed. He has Ropinirole to cover both.
As with the others I don’t think it’s clear that you have RLS but different people describe the same thing different ways. Firstly the need to move, if you can sit their happily while your muscles are twitching and don’t feel the urgent (irresistible) need to move then it’s probably not RLS. Secondly timing, “normal” RLS gets worse in the evening and at night and for many people only occurs at these times. Thirdly it’s relieved by movement so getting up and walking about. Fourth, position and chairs. If it only happens in certain chairs and could be alleviated by changing sitting position then starts to feel like something postural or nerve related. If your legs are beside you then your pelvis is probably quite tilted and your lower spine curved which could apply pressure to the nerves. Just sitting straight upright should fix that and if so it’s unlikely to be RLS. Lastly the twitching, if the muscles are just flipping or it’s like a tic then that sounds nerve, if the legs need to straighten and do bigger movements then it may be RLS. Whatever happens Ropinirole is not recommended as a treatment although it can be used as a test because initially it will completely remove RLS but won’t help with nerve issues.
Oh boy, here we go AGAIN! Did your Doctor do any test before prescribing that life changing medication? Seriously, the side effects of Ropinirole are beyond the pale. I know, I was one of them. Sit down and google “Ropinirole lawsuits” Now you know why Ropinirole is no longer used as a first line of treatment for RLS.
The fact that your Doctor would prescribe that medication without a morning fasted full iron panel leads me to believe you need a new doctor!
I have RLS (which is very different from what you describe) but I also have something similar to what you describe. Muscle spasming and twitching-which can build and lead to shaking or jerking (or sometimes the shaking and jerking occur by themselves). These symptoms are definitely aggravated by my positioning such as sitting on the couch in the same position as you describe-same with laying on my back (I don’t lay on my stomach so I can’t speak to that). Spinal problems are the case of this, for me. And may be the same for you- since sitting in your office chair, which is likely more ergonomic, isn’t problematic. Check your posture and protect your back and see if that helps things.
EDIT: I forgot the important part. I feel like I have a lot of different neurological things wrong with me, but the advice on this site, within this community, helps them all. So maybe treatment for RLS isn’t that different from treating many other neurological disorders. I don’t know. But I know this site saved me.
ive had restless leg syndrome for 30 years my previous doctor said it was nerves but I new it wasn't when we moved house I read an article about restless leg syndrome and the symptoms were the same as mine so I went the doctors and he agreed withei seen a neurologist and he recommended mirapexin I was put on one tablet a day and the relief was brilliant sleeping better no more anxiety with it after a few years your body gets used to the dosage so I'm now on 3 mirapexin a night 0.18mg each tablet and virtually no symptoms I get the odd nights were I'm pacing the floor but fingers crossed my symptoms were strange sensation. Running down my leg also I get it in my arms
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