What a bad pain day I'm having. We had a storm move in so of course I'm all torqued up.
I have a special request for info from everybody. My Mom also has fibro and lupus like me along with diabetes, bipolar disorder, etc. Lots of extra stuff.
She has the problem with fibro where her legs get weak and go out from under her without warning. There is no associated dizziness or fainting so it's just her legs crumble and then she falls and hurts herself. This has happened about once a month or so for over a year now. With the disc degeneration in her back I'm worried she'll break something they can't fix.
I know some of you have talked about a cane for added balance. Have you found anything else that seems to help? Are any of you on specific medication for the muscle weakness problem?
Any info would be greatly appreciated. It's hard because right now I'm in worse shape than her but since I'm the daughter and she's the Mom I wish I was better so I could help her more.
At the beginning of this flare up when I first got Dx'd, my legs were so weak I could hardly walk. I had to have my husband help me in and out of the tub. But, luckily I have never had them fall out from under me. I hope your mom gets better.
On another note: I also have bi-polar with severe depression right now. I did not know that you also have it.
"Torqued up" - man, is that ever the phrase for it! Happens to me when the weather changes, too.
I still have episodes - usually when I'm fightin some other bug or in a really bad flare - where my balance is off. I've fallen in the shower a number of times - fortunately, nothing more badly injured thus far than an incredibly painful elbow (nerve included). But before I was DX'd (but it had become apparent that something was terribly wrong), I had a much greater problem with ataxia. In my case, it usually manifested on the left side, feeling as though the entire left side of my body were dragging, although nothing was visible to others.
I've never been prescribed a drug or supplement that deals specifically with the balance problems, but I know they're out there - her rheumatologist should be able to offer some options. And if none of those is workable - contraindicated or whatever - the two things that *do* alleviate it somewhat for me are the two drugs that alleviate all of my symptoms to some degree: Ultracet and Adderall, preferably at the same time. They don't work on balance per se, but when the Ultracet has my pain under control and the Adderall has my fatigue under control, I find that I'm MUCH steadier all the way around.
Incidentally, I sympathize with the ill-parent problem. I moved here to take care of my parents six months ago - Dad, 80, severely advanced Parkinson's and heart disease, among a gazillion other problems; Mom, almost 75, triple bypass last November and now greatly heightened risk of stroke. Needless to say, she's no longer able to help him, and there are a great many days when I'm picking him up off the floor - full dead weight. And I'm still not as helpful as I'd like to be, because my own health so thoroughly sucks. So, now that I'm done venting ( ), feel free to use me to vent if you ever need it!
Thanks everbody, I'll pass that on to Mom. I think I had a confusing sentence up top. I have lupus and fibromyalgia. Mom has both of those too and diabetes, bipolar disorder, etc. Ugh my right side hurts today. I had some acupuncture last night and it really helped but I'm still dragging. I'm getting a haircut today though if it kills me.
The acupuncture fells really amazing when they get in some of those trigger points. The spot in my hip/buttock that everything seems to radiate from feels like a little electrical shock when the needle goes in. And then RELIEF.
Too bad I can't walk around all the time with needles sticking out of me.
I too have that leg thing giving out all of a sudden. It normally occurs in my right leg but can be either. The only thing I can recommend is using a cane like I do. I don't use it to much around the house, but if I go outside or to the store its always with me. I use it for falling and leg weakness, if I don't have something to grab onto, down I go! I had nerve conduction testing, EMG's and MRIs in the last few weeks, all normal. But I described all the other things, including numbness in the right side of my body and face, and the Doc. performing the nerve testing said it was probably a central nervous (brain) issue. I told him I was in the first Gulf War and said it was most likely some type of brain injury due to toxins. The only supplements I take are Vitamin A and OSCAL. "A" is supposed to boost immunities(just covering my bases there) and OSCAL is supposed to help with tremor/twitching. Besides its good for you anyway. Best of luck to you. Hope you have better days in front of you. Matt S.
You know a study I'd really like to see? One of all Gulf War vets (and I mean ALL, not just those presenting with GWS symptoms) specifically for fibromyalgia. Can you imagine what the results of such a study might tell us?
Hmmm . . . . I wonder who I can start bugging. Someone at NIH or Bethesda Naval, maybe?
It's really tailored to what your symptoms are. The best thing to do is go see someone and talk to them about what you want before they start sticking the needles in you. Most of the needles that I get I barely feel. I just have a few points that are like a big POW. But once the needles are in my headache or whatever other aches I have just melt away. I can feel the energy flowing through my body the way it's supposed to.
I have never fallen yet fortunately as with severe osteoporosis I would probably wind up in body cast. However, when I get to so many sleepless nights and contractions in arms and legs are full blown I wobble like a weevil. Today I would need to look like a porcupine if I had acupuncture. (TT)
Just to distinguish, acupuncture is compeltely different than "trigger point injections" which are done by a doctor. Trigger point injections acutally inject drugs into your trigger points. Acupuncture is done not by a doctor, with fine tiny needles that stimulate neural paths in the body. Nothing is injected and it doesn't feel like getting a shot.
Just wanted to make sure I wasn't confusing anybody. Your doctor would look at you like you have two heads if you asked them for acupuncture.