Restless Leg Syndrome (RLS)

I’m also pretty sure that changing to an automatic car means I am much less likely to get symptoms after a day of driving where I could have been otherwise constantly on and off the clutch pedal
Could be but I find it's worse when I'm idle, moving seems to help, horses for courses I suppose, either way it's a shitty disease.
 
It’s shit, sympathies OP. I was on Ropinirole for a good few years but eventually came off it as I got tired of the side effects, worried about the long term effects and also had rebound symptoms.

Nowadys I think I’ve got better at managing it by being mindful of my diet. No caffeine after lunchtime, reduced alcohol or basically be prepared to suffer if I do want a drink, not too much sugary food before bedtime. Also baths with Epsom salts and I believe that foods containing tryptophan before bedtime can help.

I have an apparent ability to store iron so take a supplement as well as magnesium. It’s under control but I struggle with it after a night shift, probably due to the amount of caffeine and sugary food I consume to keep me going.
Hate ropinirole! No way did they tell me they were that bad when they prescribed it to me. I've reduced them to 1mg at night now, though....as I build up the dose of Gabapentin. So I'm kind of in-between and the last week has been hell. Apparently, withdrawal from Ropinirole is the same as cocaine withdrawal, as they're both dopamine agonists.

"Dopamine agonist withdrawal syndrome (DAWS)

DAWS has been reported with dopamine agonists, including ropinirole (see section 4.8). To discontinue treatment in patients, ropinirole should be tapered off (see section 4.2). Limited data suggests that patients with impulse control disorders and those receiving high daily dose and/or high cumulative doses of dopamine agonists may be at higher risk for developing DAWS. Withdrawal symptoms may include apathy, anxiety, depression, fatigue, sweating and pain and do not respond to levodopa. Prior to tapering off and discontinuing ropinirole, patients should be informed about potential withdrawal symptoms. Patients should be closely monitored during tapering and discontinuation. In case of severe and/or persistent withdrawal symptoms, temporary re-administration of ropinirole at the lowest effective dose may be considered."

I never got told about any of that.
 
I have suffered with this for years - recently found a herbal substance called “Kratom” which does really kill that urge to tense all the muscles in my legs, it’s in the opioid family so you have to be careful with it and some people can become dependent but, having said that - when you have 3 nights of insomnia in a row… well I feel literally insane so I do use it. Do your research first of you go down this route, but for me it’s worked wonders. You can buy it online pretty easily.

Hopefully this isn’t against the rules as it’s legally a grey area - but just thought I’d add my 2 cents if it can help someone with this awful condition.
 
Hate ropinirole! No way did they tell me they were that bad when they prescribed it to me. I've reduced them to 1mg at night now, though....as I build up the dose of Gabapentin. So I'm kind of in-between and the last week has been hell. Apparently, withdrawal from Ropinirole is the same as cocaine withdrawal, as they're both dopamine agonists.

"Dopamine agonist withdrawal syndrome (DAWS)

DAWS has been reported with dopamine agonists, including ropinirole (see section 4.8). To discontinue treatment in patients, ropinirole should be tapered off (see section 4.2). Limited data suggests that patients with impulse control disorders and those receiving high daily dose and/or high cumulative doses of dopamine agonists may be at higher risk for developing DAWS. Withdrawal symptoms may include apathy, anxiety, depression, fatigue, sweating and pain and do not respond to levodopa. Prior to tapering off and discontinuing ropinirole, patients should be informed about potential withdrawal symptoms. Patients should be closely monitored during tapering and discontinuation. In case of severe and/or persistent withdrawal symptoms, temporary re-administration of ropinirole at the lowest effective dose may be considered."

I never got told about any of that.
This is the sort of stuff I read when I was prescribed it, was enough to put me off taking it after about 10 days, could feel the changes occurring even at that early stage. I also read quite a bit more and there were tales of people gambling away life savings, that's what frightened me most I think, I'm weak willed enough under normal circumstances without having a drug to encourage me.



Ropinirole side effects​

Get emergency medical help if you have signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Some people taking ropinirole have fallen asleep during normal daytime activities such as working, talking, eating, or driving. Tell your doctor if you have any problems with daytime sleepiness or drowsiness.
You may have increased sexual urges, unusual urges to gamble, or other intense urges while taking this medicine. Talk with your doctor if this occurs.
Call your doctor at once if you have:
  • extreme drowsiness, falling asleep suddenly (even after feeling alert);
  • worsening or no improvement in your symptoms;
  • a light-headed feeling, like you might pass out;
  • unusual changes in mood or behavior;
  • tremors, twitching uncontrollable muscle movements; or
  • hallucinations (seeing or hearing things that are not real).
 
My heart goes our to anyone with this. I get it usually before bed and thankfully once I go to sleep it generally goes. Normally sat watching telly at night my legs just can’t stop moving and I’m Stamping my feet hard on the floor all the time, it’s a really unpleasant feeling. Few times I do wake up in the night with it I have to get up and go downstairs for a few hours as you just cannot fight the urge to move, bend your legs and generally just feel horrible.
 
Had it for years.
It’s like insects moving around inside my calves.
Sometimes it’s ok sometimes it’s unbearable.
I take magnesium supplements and eat bananas for potassium.
I sit with my feet on a footstool and continually stretch my calves. Every night I do a set of calf and thigh stretching exercises.
When it’s really bad I wear surgical socks. I find the pressure on my calves gets rid of it, but I am told it’s dangerous to sleep with them on.
These strategies allow me to sleep 90% of the time.
I won’t take meds for it after having a nightmare getting off tramadol a few years ago.

Those reporting suffering from it , have you ever had lower back trauma of any sort?
 
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Had it for years and it's horrible. My Mum and sister both have it as well.
The wife says it's like sleeping with a windmill.
Stretching out the calves and hamstrings before going to bed seems to help.
My Mum and sister both take medication for it but I don't mind kicking the wife and getting away with it.
 
Had it for years and it's horrible. My Mum and sister both have it as well.
The wife says it's like sleeping with a windmill.
Stretching out the calves and hamstrings before going to bed seems to help.
My Mum and sister both take medication for it but I don't mind kicking the wife and getting away with it.
Drives my wife mad when I get it. Start banging my calves on the bed and stretching to get rid of it.
 
Had it for years.
It’s like insects moving around inside my calves.
Sometimes it’s ok sometimes it’s unbearable.
I take magnesium supplements and eat bananas for potassium.
I sit with my feet on a footstool and continually stretch my calves. Every night I do a set of calf and thigh stretching exercises.
When it’s really bad I wear surgical socks. I find the pressure on my calves gets rid of it, but I am told it’s dangerous to sleep with them on.
These strategies allow me to sleep 90% of the time.

Those reporting suffering from it , have you ever had lower back trauma of any sort?
Not me but I did have a sub-arachnoid haemorrhage in 2010, the connection being that it occurred in the Circle of Willis, so named due to the research done by Sir Thomas Willis in the 17th century. RLS is otherwise known as Willis Ekbom disease, Thomas Willis was also the first to describe RLS in people, here is the translation of what he wrote in Latin in 1672,

"Wherefore to some, when being abed they betake themselves to sleep, presently in the arms and legs, leapings and contractions on the tendons, and so great a restlessness and tossings of other members ensue, that the diseased are no more able to sleep, than if they were in a place of the greatest torture."

Probably no connection whatsoever to my brain bleed as I suffered RLS before it but it's intrigued me since I read he had a hand in both my medical issues.
 

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