07-18-2005, 10:33 AM
Hi Everyone,
I have been diagnosed with SLE for about 3 months now and mixed connective tissue disease. I am now on plaquenil.
My question is I have daily muscle twitches all over my body from head to toe all day long. My dr. put me on klonopin and that has helped alot but i still have them throughout the day but not nearly as bad. Do any of you have muscle twitching? If so, how bad is it and is it wide spread? My rheumatologist said that everyone is effected differently with SLE but twitching is not to common. So now I am worried that I have something else. I had a m.r.i done and the doc said it looked great.
Please if you can give me any info you would really be helping me relax a little.

07-20-2005, 12:02 AM
Hi Faleisha;
Muscle weakness is a common symptom for Lupus, and for some things that are not *disease* in origin. One of the most common ways to determine if the twitching is due to your disease is through blood tests. A rise in certain muscle enzymes is common when the twitching is disease related - doesn't happen in cases other than disease related.

If the muscle enzymes are elevated, then it might be necessary to perform more invasive tests, such as muscle biopsy and nerve conduction tests. But these usually are only performed if blood work indicates a problem.

The most common *disease-related* causes for muscle weakness and twitching include: lupus, polymyositis, myasthenia gravis (auto-immune diseases). Common *non-disease-related* causes include: medication effects (steroids and Plaquenil, for example), electrolyte imbalances, being *out of shape*.

So, there are several different possibilities and the only way you're going to know what the cause is, is through thorough examination. It certainly wouldn't hurt for you to call your doctor now and explain the problem so that you can get an answer and perhaps treatment!!
Peace and Blessings

08-23-2005, 08:31 PM

Thank you!!!!! It's been bothering me for years and now you've sorted it out for me without knowing :)

My mum phoned me a few years ago after a long period of illness where her legs kept giving in under her and she generally felt like pants. Now bear in mind, my mum has a habit of mixing up words, she's not old, just on a ton if pain meds that could muddle even the sanest of us.

She told me the consultant at the hospital had told her she had poliomyelitis. Now, I'm a nurse, so I thought it was very odd that my vaccinated and almost housebound mum had polio and kept collapsing because of it, but hey, I thought nothing more of it.

I'm meeting the Lupus specialist in a couple of weeks, so today, I was going through symptoms and family history with my mum so I could have everything at hand (my own memory has a habit of failing at times due to fatigue/maybe overuse, lol). Going through the symptoms, my mum said, ooh, don't forget that time I kept collapsing when I had poliomyelitis, so I dutifully put it on the horrendous looking family history I have.

By accident, I read this post and thought "hmm polymyositis, now that would make more sense" and looked it up, low and behold, its exactly what my mum has, she's been misnaming it for the last few years and confusing the heck out of me

So you've done two fabulous things for me today, firstly, you've added the fourth, yes fourth autoimmune disease to my parents history, but also, after reviewing some medical sites for a while and realising it is chronic, it explains why my mum is still finding her legs going out from under her - she was only medicated for a few months.

It's 5.30am and I'm gagging at the bit to call my mum, I'm on night shifts tonight, so I've stayed up late/early and I keep forgetting about other people sleeping, but I'm soooo wanting to let my mum know that her symptoms are explainable.

Geez, when do people wake up? I can't wait to tell my mum she's not going mad, but being woken up by her daughter at 5.30am with her telling her that might not be the best call, lol.

Anyhow, thanks for subconsciously helping both me and my mum, I owe you tons :D

Claire xxxx

08-08-2006, 01:22 PM
I have muscle twitches ever so often and the only way I can describe it is little tremors from earthquakes. It moves from place to place and it shakes ever so slightly. I told the doctor that and his response was "that's weird."

08-08-2006, 01:54 PM
Don't you LOVE that response??? That , and "That's interesting..."

Grr... I get both spasms and tremors... I was also told I have neuropathy...

If that helps...

08-09-2006, 05:12 AM
Hi Claire :lol:
So, how did the conversation with you mother go? I am happy that I was helpful (albeit inadvertantly) :lol:
I hope that you and your mom are feeling ok!!

Peace and Blessings

08-09-2006, 09:59 AM
I get muscle twitches that you can see - they are very annoying! When my problems get bad I get horrible cramping pains in my thighs and upper arms. They tested me for poly and dermatomyositis because my cousin has dermatomyositis, but my tests came back negative. Even a muscle biopsy came back negative, but I had profound weakness Ė had to be carried to the bathroom. They said it can be patchy and it is possible they didnít get a piece of affected muscle. They put me on prednisone and the twitching, painful cramps, and weakness went away. Not everyone with myositis will have positive blood tests (muscle enzymes). My cousinís blood work comes back normal every time and her biopsy definitely proved she has dermatomyositis. Doctors never believe this so I always have to bring a copy of her blood work and biopsy to prove it - they are always shocked.