PLMD (no RLS) symptoms during the day - Restless Legs Syn...

Restless Legs Syndrome

18,958 members12,535 posts

PLMD (no RLS) symptoms during the day

skunkape profile image
8 Replies

PLMD without RLS—jerk-like movements occur in different parts of the body at random throughout the day. I’m only 19, so I was diagnosed early and I’m treated fairly well, but I’ve heard people describe PLMD as somewhat predictable. The woman monitoring my sleep told me I was basically having seizures, and I’ve witnessed them first hand! They are most intense in my sleep, but I’ve kicked a classmate in a hiccup-like seize of my leg, I’ve hurt my back with a shoulder seize while carrying something, and my reading time is frequently interrupted by twitches in my torso—they usually stick to my limbs though. As far as I know, this isn’t exactly normal for PLMD, and I’m worrying that it’s not the right diagnosis. I’ve had to get accommodations at college, which aren’t cheap (especially the single room). I have anxiety and depression, but it is medicated and under control. Only illnesses in family history are a few rare cancers, though none in the brain.

Fell asleep on the train the other day—jerking awake next to a stranger is a bit embarrassing lol

8 Replies
RoadRunner44 profile image
RoadRunner44

My apologies to begin with but I'm new to this forum and am not familiar with the abbreviations that are used as yet. I have restless leg syndrome and will be seeing a neurologist in the new year. I am becoming more knowledgeable reading some of the posts of fellow sufferers here, which I find very helpful. Referring to your post could you tell me what PLMD stands for please? I certainly have sympathy for you and your wife after reading your post and hope you get some answers to your questions. With all good wishes to you both,

Kaarina profile image
KaarinaAdministrator in reply to RoadRunner44

Hi RoadRunner,

This link may help you regarding Periodic Limb Movement Disorder (PLMD) :

rls-uk.org/periodic-leg-mov...

RoadRunner44 profile image
RoadRunner44

I'm sorry I think I have replied to the wrong person. My apologies

Amrob profile image
Amrob

Hi there skunkape,

I have PLMD. I don't have RLS.

My limb movements are mainly at night but they also occur when I'm awake..mainly when trying to get to sleep and in the early hours of the morning (possibly when medication wearing off).

These movements occur infrequently in the daytime - generally when I lie down during the day. When I took pramipexole, there was augmentation of symptoms and the limb movement extended to my arms but generally it is contained to the legs.

The movements are clearly involuntary. I don't meet any of the criteria for RLS. I have had arguments with sleep specialists who are not aware that PLMs can occur in a wake state.

I would have thought that PLMs only occur in the limbs hence the name of the disorder however I know of at least one other person on this forum that has reported movement in the torso.

I'm wondering if the meds you're taking for anxiety/depression are contributing in any way to your atypical movements?

From what you write, i'm assuming you've had overnight sleep studies done? These studies can be done in the daytime too. Also, there are other straightforward tests that you can have if you're worried they're seizures.

skunkape profile image
skunkape in reply to Amrob

Nice to know I’m not alone! I was actually going to have a 24 hour sleep study for narcolepsy, but they discovered my PLMs. I’m being treated by my psychiatrist, so none of my meds should contradict anything. I feel much better knowing I’m not some odd case!

Hi Skuncage, RLS and PLMD overlap.considerably. I used to have PLMS, (PLMD when sleeping), years ago. Then it turned into RLS.

With RLS, I too have had daytime involuntary movements. They affect my legs, arms, shoulders, neck and torso. They could be quite violent. Like many RLS sufferers, I usually call this "twitching".

They were sometimes like seizures but I have observed tonic clonic seizures, and they're definitely not. This is because, although I can't stop them, I can delay them. AND I don't lose consciousness.

I did discuss these with a neurologist and we agreed that the movements ARE involuntary, (not usually identified with RLS), but the actual pattern of the movements is different.

In any event, what you call it isn't too vital because there is considerable overlap in the causes and treatments of the two, PLMD and RLS.

A psychiatrist is not the best person to deal with this, their knowledge of the pharmacology will be lacking.

If you're suffering depression and/or anxiety, note that the current standard treatments for these i.e. SSRI or tricyclic antidepressants can trigger RLS/PLMD and should be avoided.

The standard first line medications for RLS/PMD are either alpha 2 delta ligands or dopamine agonists. If you suffer anxiety, preferably the first of these 2.

Your psychiatrist may not know these two things, a neurologist would.

I appreciate that your RLS/LMD is unpleasant, but you're not alone or unusual. What you describe is quite common.

AubreyT profile image
AubreyT in reply to

Gabapentin is the first choice drug for RLS. The DA's will augment in time and can be used if the Gabapentin is not effective.

in reply to AubreyT

Hi Aubrey, I agree with you.

The alpha 2 delta ligands i.e Gabapentin or Pregabalin are a first line treatment for RLS as I mention above. I believe that some experts now try one of these first before a DA and that's why I mentioned them first.

Unfortunately there are many doctors out there who are not as enlightened as others and and are still prescribing a DA first despite the risk of augmentation.

If you were to read some of my posts you will see that having had RLS for several decades, taken a DA for many years, suffered augmentation and successfully switched to an alpha2 delta ligand i.e. gabapentin, I have now been consistently advising new members about the ligands for some time, warning of the risks of the DAs i.e. loss of efficacy, augmentation and Impulse Control Disorder and where I suspect a new member IS suffering augmentation due to a DA suggest they wean off the DA and give them some ideas on how to do this.

As you become more familiar with this forum you will see treatment options for RLS are very varied depending on how severe a person's RLS is, whether it's idiopathic or secondary RLS, what they have tried before, what their doctor is willing to prescribe, what other conditions they might also suffer from and what their personal choice is There is n o one size fits all, we are all different.

I also hope you discover the other regular members of the site who have been members for years and appreciate the expertise and experience they can offer. There is a wealth of information in the site

As someone wbo's recently been diagnosed with RLS, you might find this link helpful.

uptodate.com/contents/treat...

Enjoy.

You may also like...