Hi. I'm new to this group and wondered if i can get some advise please? I started getting restless arms a few years ago but 18 months ago it became much worse. I was referred to a neurologist because of other symptoms during the day such as loss of sensation and tingling in hands and feet to name a few. ( brain and spine scans were clear) My major problem was the restless arms which then spread to my legs causing me to survive on 3 hours sleep a night. I also then started getting involuntary arm and leg jerks and twitching. I was put on 1mg of Ropinerole in December and responded well for 3 months, it was then upped to 2 mg a night. I've started having some bad nights again. My problem is since upping to 2mg a night my weight has literally piled on! 3 stone in 4 months! I'm finding this so depressing and have just started a strict diet to try and combat this. I'm so worried that I will have to have my dose upped again soon.
Has anyone else had this problem or does anyone know of a good medication that does not cause rapid weight gain please?
Thank you.
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Elsie85
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For me, the only medication that works is Oxycodone. I have been taking it around the clock because my RLS is severe. There are no side effects, aside from occasIonal drowsiness and constipation
I also have severe Osteoarthritis in all my joints, neck and lower back, as well as Carpal Tunnel in both wrists, so the medication also lessens the pain.
Hi Debbie, thank you for your reply and the link to the leaflet, I will take a look!
Hello and welcome to this forum, I hope you find it helpful.
Unfortunately weight gain is one of the side effects of ropinirole. In addition, ropinirole, a dopamine agonist (DA) like other DAs used for RLS is prone to losing efficacy, i .e. it fails. This however usually take years to happen. For it to happen so fast seems unsual.
There are also a lot of other things you say that sound unusual. RLS usually starts in the legs, hence its name. it can happen in the arms but usually this is at the same time as legs. it can start in the legs and spread to the arms and sometimes this is due to a DA. however, again this usually takes years and is usually not from arms to legs.
Tingling in hands and feet and loss of sensation aren't usual for RLS either. I don't know what the few you've not named are, but they may be unusual for RLS too.
Putting all this together, I do have a suspicion that your symptoms are not due to RLS at all.
I see you have had scans of brain and spine, but this will not detect peripheral neuropathy, (PN).
PN could explain your symptoms.
One suggestion then is that you pursue the idea that RLS is a misdiagnosis. and you need tests for PN.
Even if you are happy to accept the RLS diagnosis then ropinirol;e failed, you increased the dose and it failed again. There is apparently no good reason for increasing it again a) because of the weight gain and b) it will probably keep failing and addition c) if the dose gets any higher other complications can occur.
There are other medications for RLS which however aren't quite as effective (not that ropinirole is for you), but they're even more known for causing weight gain.
I see another member has suggested an opiate. oxycodone This can be effective forRLS when other medications fail. However, it's not particularly easy to get a prescription for an opiate for RLS and depending on where you live not even for chronic pain.
I think your best option is to consult a neurologist again and re-look at your diagnosis.
In the meantime cocodamol might help your symptoms if it is actually RLS (paracetamol [UK] acetaminophen [US} AND codeine.)
I wouldn't increase the ropinriole, in fact you might consider reducing it and possibly stopping it since it's causing more problems than benefit.
You must NOT do this suddenly, it's dangerous. Reducing and stopping ropinirole causes withdrawal effects which can be severe and the slower you reduce it, the less these will be. It you do decide to reduce it then I suggest cutting it down by as little as 0.5mg or even 0.25mg every 3-4 weeks. You have to cut the tablets.
If you're not sleeping you could ask your primary doctor for a benzodiazepine e.g. clonazepam. This can aid sleep, but it's also a muscle relaxant.
There are other non-pharmacological remedies for RLS if you have it, but perhaps the first thing to establish is, do you really have RLS?
Thank you very much for your reply! It's funny you should say this. My family have been encouraging me to change my neurologist for a while now which I intend to do. She has been very thorough in her testing but is happy to put me on medication without really knowing what's wrong. For the last year I've been paranoid about MS but my scans have been clear. I also suffer from awful rib pain but this has now been diagnosed as costochondritis.
I have a feeling that my Ropinerole may not be as effective on some nights is because I've got out of routine due to lockdown. On the bad nights I have taken it late and gone straight to bed. If I take it at 9:30 and give it an hour it's usually fine.
Cocodamol have been good when it's bad, they also help me to sleep. It's strange as the neurologist said she didn't think these were helping.
Thank you for your advise, I will definitely look into changing my neurologist and starting again.
If any RLS medication is going to be effective you have to take it the same time every day, quite strictly. I have an akarm set on my smartphone.
If you DO have RLS, then apart from medication you should consider iron deficiency and aggravating factors.
I assume, that if you were tested for iron deficiency your neurologist didn't appreciate the significance of the results. I asdume thry slsondidn't discuss aggravating factors.
Basically your neurologist appears rubbish at diagnosing RLS correctly and rubbish at treating it.
I'm guessing you live in the US in which case you may be lucky. There aren't many neurologists that have any expertise in diagnosing and treating RLS. Often, it seems they do all their "tests" and if they can't pin a label on what's wrong with you from the tests they stick on the RLS label if it's remotely RLS like.
In the US there are some renowned RLS experts who could at least say whether you have RLS or not..If you have then they can offer better treatment options.
If you have the option of choosing a neurologist, I suggest you at least check what their particular expertise is.
Incidentally, if it's correct as Jools says and you've developed an Impulse Control.Disorder (ICD) because of ropinirole, i.e. you feel compelled to eat, you have cravings, then you really must stop the ropinirole, BUT, you need to be very careful as someone with an ICD can have very severe withdrawal symptoms.
I should also say that my neurologist wanted to put me on medcation for my tingling and loss of sensation on my feet and hands. She was supposed to call to talk to me about this but never did. I was going to refuse it as I don't want to be on medication when I don't know what's wrong!
The only ones I can think of would be gabapentin or pregabalin. Which in some ways may he a "catch all" since these are also used for RLS. They also can cause wright gain.
Pretty irresponsible to prescribe anything if you don't really have a clue what the cause is.
Your symptoms might be caused by a deficiency or electrolyte imbalance or hormone dysfunction. What tests did she do?
Hi. I actually live in Kent in the UK. I'm able to change my neurologist as we have private health care. So when I change I'll get alot more info about the neurologist!
I've had lots of bloods including vitamin B12 and iron and all was fine. Having more this week.
My neurologist definitely didn't talk about aggravating factors and was quite happy to say it is probably from my dad who suffered badly with it as he had parkinson's.
I pretty sure I don't have a compulsive need to eat as I am able to control it and don't get cravings.
The only medication she mentioned was Amatryptaline (excuse spelling) which she'd already tried me on for RLS and made it so much worse! She never mentioned anymore but I was assuming the same meds as you've mentioned. But totally agree with you, I'm not happy to go on something when I don't know what's causing the problems.
I've had two MRI brain scans. Which were clear. And two MRI scans of my spine, again were clear. A Ct scan 18 months ago showed a possible neo plastic lesion on the left side of my brain stem but she thinks this is an incidental find and sitting there quite happily not causing my symptoms. I hope she is right!!
I've also had an electric shock test (sorry can't remember name) to test my nerves and this was clear!
She was going to do a lumbar puncture but as scans were clear decided against it.
Dr Simon Merritt, Sleep Specialist at Benenden Health Hospital has been recommended by a forum member in the past. He may be working at a different hospital now.
"Iron was fine" isn't good rnough. You needed to know the numbers. If yiu have RLS your brain iron levels will be less than levels for a normal persokn if your ferritin is less than 200ug/L.
I think at first I was overeating but put it down to lockdown! I then started to cut down and go back to my normal eating pattern and watched it carefully. Sadly it made no difference. Now I'm completely changing my diet and will start writing down what I eat.
I think it's time to change my neurologist as I do feel I'm being put on medication when she doesn't really know what's wrong.
I'm a newbie too and just posted my first post. I found ropinirole worked brilliantly but it did seem to need to be increased regularly. It gave me a serious shopping addiction so off it now and changed meds. Sadly feeling like right back at beginning as they are starting on a low dose. I haven't found weight an issue but I think drugs really impact differently on individuals. I'd love to give you some brilliant advice but sort of same place as you so I'm sending hope, a really big dollop of hope 👍😊
Careldopa and Clonozapan, seems like the shopping thing likely to exist with Careldopa, so feel like I'm a hamster on a wheel right now🙁will get back in touch with neurologist. Hope things improve for you, strangely helps to know others suffer with this. It's really hard to even explain it to those that don't. Thank you and very best with it.
Hello, It's so nice to hear someone else suffering from a medication induced shopping addiction. I too had this problem, to the extent that I am now in debt. Who would believe it was caused by the Ropinerole, I only found that out by chance when reading the enclosed leaflet. It does say that this is a possible side effect. I have suffered from this inherited illness for many, many years now. I have it very severely, and sometimes it's just hell. I also suffer from depression. I wondering how easy it is for other sufferers, who are taking Ropinerole, to work. It causes me to have severe drowsiness. I can no longer watch a film, read a book or travel on public transport. Although I didn't want t go down the road of claiming benefits. Does anyone know if you can claim a disability benefit for R LS please?.
It's really not great. I won't bore you with too much as it's on my blurb and previous posts but I have been switched from Ropinirole to another drug that is likely to cause/continue the same issue. Also the nightmares currently are revolting. I'm not sure, after being so desperate to sleep, I want to at all if I have see some of the awful things that I have lately.
On the plus side I still work full time, kept some humour and refuse to let this destroy the one life I have. Shopping? I have the problem and still shop as bad however I restrict myself to small purchases, it's the best I can do.
This isn't the best news but my hope is I'm in the middle of the story, as you probably are. I'm stubborn and will keep on until I get the ending that's good enough for me and will be there for anyone in the same position.
I wish you all the best, please keep persevering, we have to hang in there. Tired, low and often grumpy I know those around me still want me around. I won't be my RLS and will keep trying, trying again and likely again.
I've received such warmth, support and advice on this site in just a week it has renewed my resolve and perhaps reignited the rebel in me. I wholeheartedly wish you well.
I'm a lifelong sufferer so I do speak from experience. Ropinerole is Clonazepam by another name. I was on Clonazepam for many years but was on holiday last year and ran out of Clonazepam. I thought nothing of it as I didn't feel it was very effective. However, I suffered terrible withdrawal symptoms and as I was in France at the time my daughter managed to persuade a local pharmacy to give me some and the brand they had was Rivotril. They were wonderful and I slept for the first time in 8 days. Unfortunately when I got back to the UK I had forgotten the name other than that it began with the letter 'R'. My local pharmacy gave me Ropinerole thinking that was what it was but it was no better than the original Clonazepam. Through some detective work I found out that it was actually Rivotril but my pharmacy couldn't supply them. I did find a pharmacy that could and haven't looked back! Give them a try if you can. I'm on 2mg and don't feel the need to increase this. I'm in my70's and have had RLS virtually all my life. It has never been so in control. Good luck! Don't go down the Oxycontin route. I was on those for 10 years for Osteo Arthritis and managed to wean myself off them as they no longer worked for me and there is an epidemic of Oxy related deaths in the USA.
Hi Mike, thank you for your reply. I will definitely look into this!! I ran out of Ropinerole once when there was a problem getting my prescription from the neurologist, by day two I was back to normal with arms flying all over the place and walking around the house at silly o'clock.
Thank you for the advice and so pleased you are getting some relief. Having gathered lots of great advice today I think I've got a bit of a way to go yet but I am determined to get this under control.
I completely underestimated Clonozapan too, definitely not a drug to run out of. Sometimes I start to wonder if fixing the problem causes more issues than RLS but then they creep up on you and another night's sleep is lost followed by another grumpy day. A rock and a hard place springs to mind. Thank you for sharing.
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