Random Twitches

[Keaney27]

Hi all,

When I was first diagnosed with RLS a few years back, I was also sent on a sleep study which showed I suffer from PLMS in the night too.

However, over the last month or two, I have been getting random twitches in my hands, legs and arms (mostly on the left side). I always assumed that PLMS happened during the night. Is it possible this is now happening during the day too? Or could it be something else with which I need to speak with the Doc?

Thanks for your help

C

[Elffindoe]

Hi, I'm sorry to hear this.

Yes it is possible to experience what you describe.

Obviously it's not possible for anybody on this site to fully confirm that you have PLMA (PLM when Awake)

Something which might help is iof you can say if you take any nmedication for PLMS. If so what is it, what dose and does it work?

My personal experience is that originally I only suffered from PLMS, although I didn't know what it was at the time.

Later, for decades I suffered mild RLS symptoms as decribed in the diagnostic criteria. During that time my PLMS disappeared.

Just over a decade ago my RLS became severe and at one point I started to suffer twitching then suffered dopaminergic augmentation. The twitching did spread to my arms and torso as well as legs.

I always have thought of this as RLS rather than PLMD, mainly becasue I'm conscious when it happens.

I no longer suffer augmentation and only occasionally experience any symptoms at all. However, when I do they are as you describe.

So yes based on my experience I think it's very possible that your waking symptoms may be an extension of your PLMS or could be RLS.

In terms of treatment, there is little difference.

[Keaney27 in reply to Elffindoe]

This for sharing - is really useful to read about your experiences.

The only thing I take is Neupro 2mg patch. Ive tried numerous meds previously including gabepentin, pramipexole & ropinerole.

I’ve never had the twitches during the day until a few weeks back - it’s more annoying than an uncomfortable thing.

[Joolsg in reply to Keaney27]

Uh oh.As soon as you said Neupro patch and that you've been on Pramipexole and Ropinirole, the arm and hand twitching makes sense.

You need to read everything you can about Augmentation. Dopamine agonists are brilliant at first, then the D1 dopamine receptors start becoming over excited and screaming out for their share of the DA meds. They cause intense, increased RLS that starts earlier in the day and moves to other body parts like the hands and arms.

Increasing the dose is 'pouring gasoline on the fire'.

The only solution is to very slowly reduce the patch. Ask for the smallest dose patches. Put 2 x1mg on at night and then start cutting them and reduce by 0.25mg every 2 weeks.

Ask for pregabalin and start taking that 4 to 5 weeks before you stop using the patch completely.

It's tough as the withdrawal symptoms can be hellish but continuing will only make your daytime RLS worse and more intense.

[Keaney27 in reply to Joolsg]

Thanks for that - I did think of augmentation at first, as this happened with previous meds.

The neupro patch has been, by far, the best solution I have had. So I has hoping it wasn’t going to be augmentation as the only thing I’ve had is the twitching and not other of the ‘traditional’ rls symptoms.

I appreciate your advice, it is very helpful. I will consult my GP tomorrow.

[Joolsg in reply to Keaney27]

If you augmented on the other DAs you will inevitably augment on the patch. It's just a question of when, not if. If you're in the UK, your GP will have very little knowledge of DAs or Augmentation so the more you read and research, the better things will go for you.So many of us have been through augmentation and have received zero help from our doctors. RLS is not taught in the curriculum or during GP training so doctors have to do the same research that you will be doing.

The Mayo Clinic Algorithm is the latest RLS advice from the top RLS experts in the US. There are lots of articles on augmentation. Sadly, they don't include detailed withdrawal schedules so we have to listen to other RLS people who have been through it. The top US experts advise taking a minimum of 3 months to get off DAs.

You're very young so hopefully will deal with the sleepless nights and constant RLS better than us older members.

Alternative meds for RLS/PLMD include pregabalin and gabapentin or low dose opioids.

I presume your doctors did blood tests and ensured your serum ferritin was above 100? Did they check your other meds to ensure you're not on sedating anti histamines or anti depressants or statins or beta blockers or PPIs? So many meds can trigger or worsen RLS.

Spend a few hours reading posts on Pramipexole or Ropinirole and you'll see most people come on here because they're augmenting. All the advice and research articles are on here.

rls.org/treatment/managing-...

acpinternist.org/weekly/arc...

nice.org.uk/advice/esnm67/c...

[Keaney27 in reply to Joolsg]

Thank you this is really helpful. Luckily for me my GP is really good and has in the past read the research I sent over, as she didn’t know too much about. I was under the care of a neurologist who was the one that prescribed the neupro patch. I will talk to them also.

I do take other meds (tramodol, neproxen) for spondylitis and Acritretin for another issue. I always worry about the interactions between meds so always ask the docs to check… I was nearly prescribed amitriptyline a few months back but luckily I knew they could have triggered the rls.

Thanks for you help and the links - I will have a look at them

[Elffindoe in reply to Keaney27]

See what Jools says.

[Joolsg]

mayoclinicproceedings.org/a... forgot to include the Mayo Clinic algorithm.

[Madlegs1]

Acitretin may be part of your problem.If you Google search " acitretin and rls" you will come up with some quite interesting information.

[Keaney27 in reply to Madlegs1]

Thanks I will have a look.

[Maximus01]

I did a sleep study for insomnia and during that study they found that I have PLM. I had no idea I had it. The Doctor prescribed Pregabalin. I have been on it for two months and cannot say that it has helped me sleep better. I am not conscious at all of the PLM and do not have twiches during the day. It does have side effects like feeling a little off balance in the mornings and not being able to recall certain words. I have to think about whether I want to stay on this medication.