Lupus Forum - Lupus Tics Or "vibrations"

Conditions and Diseases > Lupus Forum > Lupus Tics Or "vibrations"

Q: Lupus Tics Or "vibrations"

asked by: lwyswright on June 18th, 2004

New User

I was diagnosed almost a year ago. Since my diagnosis it seems that I go from one symptom to the next. And there are days when I feel like I don't even want to get out of bed. Now my rhuematologist has diagnosed that I also have fibromyalgia.

I wanted to let the person know who has tics or twitches that I also have them and they seem to be getting more frequent and stronger. I am wondering if there is any kind of medication that can be given to control them or if this is just one of the many things I have to live with. They can be somewhat embarrassing if you are around a lot of people and all of a sudden your leg twitches out straight in front of you. And then again it can be somewhat humorous as well.

Also, I am wondering if anyone has any ideas on how to keep life as normal as possible for kids especially on those days when I feel real poorly. Between my hubby and I we have 9 kids. 5 of them are under 18 and live with us. They are all great kids and know about my illness. But sometimes it is hard for them to understand that I cannot always be the perky mom they want me to be. Then I find myself over doing to try to keep things normal. Any suggestions?

Lori

Replies(3)

LadyBrannon

replied on June 18th, 2004

Active User, very eHealthy

Hi lori! Welcome!

A thought on the twitches...Have you had your magnesium levels checked? I know I talked to my immunologist and she said it was quite common amongst those of us with auto-immune diseases. My come and go...I usually laugh when they happen. Smile

wish I could be of more help...

As for the kids, I know in our (clarebear and me) old support group, we had several people that made the kids a part of the day...If you know you are going to have a bad day in bed, let them join you (this, of course, depends on their ages.) you can also allow them to feel important and involved by letting them help you. I know many parents that I have spoke with have a hard time with that one, but it helps the kids to feel like they are a part of the solution. It makes them feel that they are important, not only to you, but to your feeling better. Smile

i do hope you feel better soon! Hugs,
ladybrannon Smile

lwyswright

replied on June 18th, 2004

New User

Thanks For the Welcome

Thank you for the reply. I have had my mag. Levels checked, and like everything else it is totally out of whack. So, I am on supplements for that.

As for the kids, they are a part of the day. But, their ages range from 9 through 17 so it is difficult to spend a day in bed without interruption or having to run some sort of errand or whatever. They are pretty good at helping out, however they don't really understand the disease yet, and they don't get how one minute I can feel great and less then five min. Later that all changes and I feel like crud. And the fatigue hits me like a ton of bricks at the oddest times. So, I am trying to help them understand but at the same time trying to be the mom I was before all of this. Sort of a hard balancing act.

Thanks again for the reply.

clarebear

replied on June 23rd, 2004

Experienced User

Tics N Twitches

Hello ladies...
Welcome to the forum and yes ladybrannon, I do remember some of the ladies (and gentlemen) in our old support group who had *great* kids as far as the lupus went.

I had tics too, but my legs didn't suddenly straighten out or whatever; I had what were akin to muscle spasms. My fingers would suddenly jump and it reminded me of when people get the occasional eye spasm.

Anyway, when I mentioned it to my doctor he said that exercise would take care of the twitches.

...Needless to say for some of us exercise is currently out of the question but even a walk around the block will help.

Hope it helps some.

Clarebear

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