Does anyone here have dystonia? What can you tell me about it? Is it common with Lupus?
How do you know if you have it secondary to something else or if it is primary?
Any information that you can share would be great.
Hi Joanne has given you a very comprehensive site to look at as far as Dystonia goes.
There's not much else to say really, I have Generalised Dystonia attributed to my CNS Lupus. Included in that is prominent Torticollus (cervical dystonia) and a very mild Bleparospasm (spasms of the eyes). However by far the worst of it is spasming and abnormal postures I experience with my limbs when flaring.
It's incredibly rare to have Generalised Dystonia associated with Lupus, the movement disorders themselves are rare with Lupus and the usual one is Chorea.
Of course you can get Dystonia for other reasons too, it can be hereditary, from medications etc. and especially from suddenly going off certain cns drugs. There are many different forms of it some much more severe and troublesome than others. A Neurologist will be able to diagnose it.