Can DAs like Sinemet cause restless arms when taken for restless legs and doesn't go away when the medication is stopped.
Edit: Just want to say thanks for all the help and advice. Feeling a bit like a zombie at the moment as I'm just so tired. It's nice to know that people care. This is a very lonely disease as others don't understand.
Are you taking or did you take sinemet? Restless arms is a sign of augmentation and can continue even after withdrawal for awhile but should go away once your RLS is under control.
Hi Sue, yes I took them for nearly 2 weeks. I went to see the neurologist and mentioned Buprenorphine and she said she wouldn't rule them out but wanted to try me on Sinemet CR. I slowly lowered my kratom dose while slowly upping the sinemet from 1/2 to 1 and 1/2 tablets. I slept quite well until 3-5am but then felt very fidgety and my right arm became restless. I couldn't stand it anymore. Will never go on a DA again. I'm back up to my usual kratom dose but now wake up after a few hours with restless arm and it's almost like the kratom isn't working. I have an appointment with a different neurlogist end of Feb. I feel like a zombie. I've been off the sinemet over a week. I don't want to up my kratom dosage as I don't want to have tolerance to it.
You haven't been off sinemet very long. It takes awhile for the withdrawal symptoms to stop especially if you stopped cold turkey. I would call the neurologist and tell her didn't work and ask for the buprenorphine.
I've got an appointment end of February with a doctor. Will ask for buprenorphine.
I am appalled that this female neurologist is even suggesting sinemet CR. She is dangerously outdated in knowledge and suggested treatment.As you've only been off sinemet for a week - you will be experiencing very, very severe RLS due to withdrawal symptoms.
They should slowly settle over the next month.
I only ever recommend kratom to get through withdrawal as tolerance seems to build up very quickly.
As this neurologist is open to Buprenorphine you should resist further DAs and ask for Buprenorphine. It will allow you to reduce/stop kratom.
Show your neurologist these studies. She really needs to follow the research studies.
Sinemet hasn't been used for RLS for years. This study is from 14 years ago!
pmc.ncbi.nlm.nih.gov/articl...
And this 2023 study confirms the extremely high rate of augmentation on levodopa.
Yes. Augmentation causes RLS to become more severe, start earlier and move to other body parts.When it moved to my face- I knew I was in trouble!
However, when you are completely off ALL dopamine agonists, the RLS severity does settle. But you may be left with RLS in your arms. Experts believe dopamine agonists cause permanent, irreversible damage.
What medications are you on now?
Hi Joolsg, I'm just back on the kratom. Please read my reply above to Sue. I'm wanting a break from kratom as ive been on it for nearly 10 years and need a break. Also unable to go on holiday as it's illegal in many countries.
You really need to get away from Dr Kirsty Anderson. She is extremely outdated in her treatment of RLS.To put you on sinemet is downright negligent after you have already augmented on other DAs. That's why it moved to your arms so quickly.
You may want to consider legal action. I'm sending a private message.
Hi Joolsg it wasn't Kirsty, it was an Indian neurologist at Sunderland, to be fair she was really nice. I asked her if she was a specialist in RLS and she said no but she said that there was plenty of options for me. My next appointment is with a different doctor and I'm guessing he's not a specialist either but I will ask about buprenorphine.
Do you have references for these irreversible damages? I am still in a severe DAWS 3 months after having completed my DA withdrawal, but I really hope to fully recover from my 3.5 years of pramipexole and 1 year of rotigotine use…
There are no research studies on this. But if you watch the many videos/ webcasts by the top US doctors ( Winkelman, Buchfuhrer, Berkowski) they all mention that some patients cannot recover from DAWS and often have to go back on DAs. They also say it could be the reason why iron infusions and certain classes of drugs do not work.
I hope that I won't have to go back on DAs. My neurologist says that it can take 1 or 2 years to fully recover from DAWS.
He's right. It took me at least 18 months to get through it.I had PTSD and couldn't sleep with the lights off.
But everything settled after around 2 years.
So you will get there.
The dopamine receptors can recover and heal.
You don't have to go back on DAs. You can take a low dose opioid.
I also have face twitches! I didn't like to talk about it as it was so scary. I don't believe I am educated enough even after a 20 year diagnosis to understand this condition and thought perhaps I was going mad! Thank you for sharing
Are you still on dopamine agonists?
Yeah but a quarter of what I was taking
Once you're completely off them, the RLS should revert to what it was like before you started DAs.Good luck.
There's a withdrawal schedule on RLS-UK website under Useful Resources which sets out what to expect.
While NICE/NHS guidelines are not up-to-date with the latest research and practice, even so they do *NOT* suggest co-careldopa (Sinemet) to treat RLS - only Parkinson's! (RLS UK do mention it as potentially useful for occasional intermittent use, but not suitable for treatment of chronic or persistent RLS: see medical treatment link below).
NICE/NHS DO still list DA's pramipexole, ropinirole and rotigotine for RLS but do at least now warn about the possibility of augmentation and impulse control disorders. As you know about these issues you are right to refuse them.
The NICE/NHS guidelines then go on to mention possible treatment with gabapentin and pregabalin and a 'mild opiate-based painkiller, such as codeine'.
I expect you've read the section on medical treatments - including iron therapy - on RLS UK:
Hopefully your neurologist IS prepared to go with a low dose opioid such as buprenorphine, and that you don't have to wait much longer for this!
I see mention of Kirstie Anderson above. When I had correspondence with her she was very reluctant to prescribe either pregabalin or opioids because she felt there was too much abuse of these drugs on Tyneside. I did write to her again giving more information about current reeearch and the case for low dose opioids for RLS (like buprenorphine) but didn't see her reaction (if any)
I refused to see her again and it took over a year to see another neurologist as no one would see me since I had Kirsty and she is supposed to be the main RLS specialist.
What did she eventually prescribe?
I wasn't a patient of hers: I wrote to c. 50 UK sleep centres and clinics asking about their RLS treatment and followed up with a summary of latest research and best practice. The majority didn't reply: Dr Anderson did at least respond to the first contact, I didn't see her reply to the second.
Is it in one arm more than another? I often notice many of my restless arm episodes are triggered by overuse of one or both arms. Or, often I will sleep in a funky position pinching my neck on one side which will trigger restlessness in the arm on the same side. Tight upper back has also been a known trigger. Of course restless arms can be caused by medication augmentation. They can also just develop as a natural progession of RLS as symptoms tend to worsen with age and can spread to the arms and other parts of the body.
As you mentioned. The arm sensations are aweful. My own opinion is they are more disruptive than leg episodes. I find it hard to get relief through arm movement like I can with the legs.
I hope you find some relief.
It's always been my right leg, but when I take DA meds my right arm starts. My leg doesn't bother me.
My rls spread to my arms and I would agree the sensations are more disruptive than the sensations in my legs. I was on ropinerole for only 8–10 months and started to augment before coming off the and onto gabapentin. I didn’t have rls in my arms before the ropinerole treatment although it might have just been a natural progression of the rls. The arm sensations never settled down, I do find they can be worse if I’ve been to the gym or some heavy use with work etc. gabapentin was not successful for me despite a number of years trying and switching to pregabalin. I have a buprenorphine patch now and have complete relief, I’ve only been using the patch for about 4 months but 🙏🙏🙏 it continues to work… I wouldn’t have known about any of these treatments without the extremely helpful people on this group 🫶🫶🫶
YES!! I have had arm twitching to the extreme. I once had a gp prescribe 4mg roprinerole but got augmentation +++. So untrained gp told me to stop taking it immediately and was prescribed pramiprexole to start immediately. I was walking round my local supermarket in 1 of the days in the next week and even walking I had extreme arms and legs twitching to the point my partner could see them! That's 20 years ago, and some GP's have less knowledge now than they did back then!
Sorry to hear that. It's so frustrating how little doctors know and can give wrong advice.
Restless arms is just a part of RLS for some people. RLS can affect any part of the body. RLS affects my feet, legs, arms and face. When it hits the arms it really hurts and drives me up the freaking wall. I can't go out because I might hit someone accidentally when my arms go wacky without notice. I've hit people on an airplane, in a grocery store and in line at the post office. Fortunately they all accepted my profound apologies. My arm involvement is not related to DA use. Unless there is a delayed onset of 30 years.
I doubt Sinemet will help. I looked back in my record to find the time I was given this stuff. Notes say it was completely ineffective. I hope you get the Buprenorphine you requested. It will stop RLS wherever it currently occurs in your body. Best of luck.
Restless Feet
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Newbie. Restless arms and legs and Ropinerole. 
Restless Thighs
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