Hey, y’all! First of all, thanks for letting me join this group, I am so glad to finally have a support group to turn to when no one else seems to understand!
I have a question about something I have been experiencing recently. A few months after my initial symptom (easy in sun exposure) started I started noticing twitches. These were generally in my hanfs6,and we’re very mild.
However, recently they are much more noticeable. They also seem to come and go with my flare ups. The more tired and worn down I’m feeling, the worse they are. They have progressed to the point that they are in my arms, my head/neck, and occasionally even my legs (if I’m laying down).
I’m just wondering if anyone else has ever has issues similar to this? I haven’t been able to find anything about it online, but when I mentioned it to my PCP, he told me “Well, Lupus does what Lupus wants. So who knows.” Such a frustrating answer!
Hi there, Brittani! I definitely have fibro and am questionable about lupus but I can tell you that this family of illness does include twitching or shaking of the arms, etc. At first it seems to happen inside of you but then it gets stronger and you notice it more. Very unpleasant. I never thought of it as being neurological, but you may be right.
I also wouldn't rule out it being a side effect of the meds you are on. And the best person in the world to.ask your questions about side effects of meds is your phamacist. They know all there is to know about meds. It might not be a bad idea to ask him/her if your doctor has ruled out other things.
One last thought...many people with fibro end up with Restless Leg Sydrome, which sometimes morphs into Restless Arm Syndrome. Do you notice any twitching of your limbs at night? It's just a thought...
I do think that they are tied in with the flares. Basically just about everything seems to be tied in with those darned flares.
Glad to know I’m not alone in this! It has been so frustrating to me not to be able to find anything about it online. I’m SO happy I finally found people to talk to and get answers from! Thanks, y’all!
I have cns lupus and that is one of the symptoms I have. Now with medication it is primarily just in my right arm, but I will still get the occasional twitches other places as well. It does get worse, as all my symptoms do when I get tired. When I am moving my arm the involuntary movement stops. It only happens when the arm is at rest. If lupus is effecting your nervous system there are only a couple of meds that will help that. From my experience and speaking with my doc their are not a lot of experienced docs who know how to diagnose or treat cns lupus. If you have any more questions, just ask. Take care.
