Can myoclonic Jerking be Lupus related?

[CBShirley]

With a history of Lupus I struggle with infrequent, yet sometimes severe, myoclonic jerks. We have yet to Identify a trigger but a full body jerk can bring me down as was the case last year when I broke my ankle. When active, minor to sever jerking can sometimes last a few days before they subside. The worst part is that I never know when it can happen.

[EOLHPC]

I’m not sure whether my myclonic jerks are more related to my hypermobility (Hypermobile Ehlers Danlose Syndrome) or my lupus...but at our first big appt when she spent nearly 2 hours getting my full history etc, my rheumatologist seemed v interested in my myclonic jerks. So far these v seldom hit me when i’m up and about, though. like you, i can’t anticipate their occurence. My jerks do throw my limbs or body about, but they tend to happen when i’m sitting or lying down. Are you on the hypermobility spectrum?

🍀🍀🍀🍀 coco

[sunshine16 in reply to EOLHPC]

Hi Coco

as you know I have got hypermobility syndrome and similar conditions to you and that sometimes happens to me I can just be sitting down and it's like an in voluntary jerk and I said to my husband did you see that ?..

it's really quite odd I may mention it to my rheumatologist when I next go I never realised it was connected to hypermobility syndrome thank you once again for enlightening me

🤗🤗🤗🤗🤗very Best wishes take care 💐💐💐💐

[EOLHPC in reply to sunshine16]

😍🌞It’s an interesting subject isn’t it?!

There are many types of Myclonic jerks..these have many causes, as this official website explains:

rarediseases.org/rare-disea...

And there are also myclonic jerks, which, as i understand it, can relate to hEDS-type autonomic dysfunction:

ehlers-danlos.org/informati...

Because my lupus features a chronic set of neuro-cerebral symptoms, i’m not sure whether these are responsible for my myclonic jerks, or my hEDS...or maybe both. But so long as my jerks remain at a tolerable level, i’m trying to find more about them.

Hope you’ll let us know what you find out

🍀😘🍀😘🍀😘🍀

[sunshine16 in reply to EOLHPC]

Thank you Coco for including those links had a quick look at them so interesting will look at them later on in greater detail have a good day Best wishes😘🌻🌻🌻

[EOLHPC in reply to sunshine16]

👍👍👍👍🍀💐😘

[MsAndyIvy]

Hi, I’m undiagnosed but have periods of jerking too, not as seveee as yours though. Mine tend to be triggered through tiredness

[Chanpreet_Walia LUPUS UK]

Hi CBShirley,

According to The Lupus Encyclopedia, “lupus can cause seizures in several different ways”. Seizures can occur as a result of immune-medicated inflammation, steroids, other immunosuppressant medications, antiphospholipid antibodies and other factors. Seizures can result in jerking movements, loss of consciousness, twitching and hallucinations.

The encyclopedia further states that “seizures are one of the criteria used to help diagnose SLE”.

It is advised that you speak to your doctor about this symptom. It is important to remember that people with lupus can experience periods of remission whereby their lupus is controlled; reducing their signs and symptoms. Periods of remission vary from person to person; it is rare for two people to share the exact same experience.