Hi, i'm new to this forum. i've been suffering from RSL for many years now. I was prescribed ropinerol about 6 years ago if not more. I had a problem with this at first as it made me drowsie, not a good thing when i was driving a 44 ton truck. I had to phone my doctor and we agreed i should only take it when i have parked up for the day.
I am a 56 nearly 57 year old male.
I first got RSL when i was in my 20's, and on a few occasions between then and when i was in my late 40's when it got regular and i sought treatment. now if i forget to take my medication i get PLM straight away.
Madlegs, my RLS also first appeared when I was in my 20s. 'Triggered' by being overtired. It came back in phases later on (no obvious triggers) and now accompanies me daily (nightly). Just because the RLS didn't present itself in my or Jimbob's childhood, doesn't mean it is RLS in response to triggers. Mine is idiopathic. All my nephews and nieces on my fathers side have it, I learned recently. Triggers may be a factor, but simply time, as in ageing, is the biggest one. And one we can't control or stop.
That doesn't mean that I think that looking for triggers isn't useful. It is. Very. It may help to reduce the RLS. But will not stop or cure it.
I have inherited my RLS and I have just about got it under control by diet. Its pretty close to stopped and cured. I'm not happy with my food restrictions but very much happier to sleep most nights without a problem. I'm just sorry that it doesn't help everyone.
I did start the on going suffering during my 20s, at the time I was carrying my second child, I have had it ever since, the symptoms have got progressively worse. I have tried many drugs of various strengths, at the moment I am taking Gabapentin, it has just kicked in and I have had 4 full nights in bed, sleep deprivation is the worst!
Generally, third trimester rls is due to iron depletion by baby.
Have you had ferritin levels checked.
There is a body of chatting on this site concerning iron supplementation.
Good luck.
Hi and welcome to this forum, I hope you find it useful.
I see you've been taking a dopamine agonist, Ropinirole, for some years now. Unfortunately one of the problems with dopamine agonists is that you become dependent on them,
A typical result of such dependence is that if you miss a dose for some reason, you fairly quickly begin to experience RLS symptoms. This is what I found when I was taking another dopamine agonist, Pramipexole.
I also found that once the symptoms had kicked in, taking the Pramipexole belatedly didn't stop the twitching. I did debate this with a neurologist who agreed that this twitching was RLS rather than PLM. PLM more often only happens when you're asleep and the movements for me, were not typical of the movements you see in PLM.
Notwithstanding, the end result is the same!
I got very nervous about making sure I never went without my daily dose and set an alarm on my phone to remind me.
As Madlegs suggests it might be worthwhile exploring if there is some underlying cause or trigger for your symptoms. Keeping a diary of what you do and what you ingest each day and how your symptons are might help identify some factors. However, the dependence on the Ropinirole tends to confuse things a little
I hope your doctor warned you of the other longer term consequences of taking a dopamine agonist. When I was first prescribed one, I wasn't warned. It was only through this forum that I became aware of these.
Thank you so much for the wonderful advice you have given me. My RLS is only on my feet. My back is so bad that I need surgery, which requires two 5 hours days of surgery to put rods and screws in my back. I opted for a spinal stimulator implant even though my surgeon said that te. Anyway, my point is that I had an EMG and the results were that everything that is gong on with my legs is due to my back problem? I don't get it, I've had the RLS feet for many years and the back pain for three year,
I am 72 years old and have had RLS for about 30 years. I have taken ropinirole for most of those years and it has been fairly effective though I have had to raise the dosage to 3 mg. I went from having RLS at night to having the symptoms during the day as well. Though I do believe it is hereditary, I have found triggers. Pizza and beer means a night without sleep. A lack of sleep make the RLS symptoms much worse. My triggers have been found to be sugar and alcohol. I have recently found compression socks to be effective in reducing my symptoms during the day with some residual effect lasting into the night. Eating small meals also seems to help. Good luck!!
Hi, alcohol is a trigger for me too. Luckily pizza isn't.
I do note that you've been taking a dopamine agonist (DA) for many years and more or less got away with. I wasn't so lucky in that.
The fact that you've had to increase the dose of Ropinirole AND started getting symptoms during the day suggests you might be suffering augmentation. One of the possible long term consequences of taking a DA that doctors seem to forget to warn you about is augmentation.
You already have 2 signs of augmentation, symptoms getting worse ( having to increase the dose) and symptoms during the day.
The two other signs are symptoms spreading to other parts of the body and symptoms occurring more quickly when you try to relax.
I had all those signs for a few years before I discovered it was augmentation, thanks to this site. I took the advice and have stopped taking the DA and switched to Gabapentin. This is so much better for me. I didn't realise how much of a problem the DA and augmentation was causing me.
I don't know if you were aware of augmentation, but if your RLS gets any worse, spreads to other parts of your body or occurs more quickly, then it would be a good idea to look up augmentation and how you can deal with it.
I've suffered with RLS for 11 years. In that time I've drank alcohol only 3 times and it's never brought on an episode once. From the first time I got RLS it didn't stop and come back years later. I've had it consistently since the start. I've also had family members who had it as well. I have worked out what's causing mine and it definitely isn't alcohol.
Hi hidden, i would not wish this on my worst enemy either. It is a nightmare disease. I am on roprinilol and it makes me drowsy, but i don't drive a 44 ton truck, lol. Unfortunately so many meds have that side effect. If your symptoms are bad while driving, try compression calf sleeves. You can get them on amazon. If im traveling long distances they do help. Also maybe try some of the vitamin supplements like magnesium, potassium, vitamin B12, or mayb look up CBD oil for restless legs. That is what im going to try to find. Good luck. I hope some of these suggestions help.
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