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Old 05-25-2004, 11:56 PM   #1
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Join Date: Jan 2004
Location: Pacific Northwest
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sadeeanne HB User
Question How independant can we expect to be?

I was diagnosed with FMS about 10 years ago, and right about that time I went to a very poplular arthritis doctor who told me I would be in a wheelchair within 2 years. I'm still able to get around without a wheelchair, but I seem to be getting worse. My husband finally got me a cane to help me because I fell and sprained my ankle pretty bad about a month ago, and was having trouble getting around. I am continuing to use it because I feel more comfortable in being able to keep my balance. My mother-in-law has rheumatoid arthritis and tells me that she doesn't think I should use a cane until I absolutely "have" to because I can grow dependant on it and have to use it all the time. Although we share similar symptoms, she does not understand that FMS is much worse that RA in that RA has specific meds and treatments which target the problem. FMS is just hit-and-miss. I know doctors have the idea that FMS is not progressive, but I know that it is because I am experiencing it. Are any of you in a wheelchair directly because of your FMS?

 
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Old 05-26-2004, 05:23 AM   #2
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Join Date: May 2004
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Dee74 HB User
Re: How independant can we expect to be?

I haven't been FIRMLY diagnosed with Fibro as of yet.. my new PCP is still trying to rule other things out. One of my old doctors dx me with it a little over 3 years ago.

I'm not in a wheelchair, but I DEFINATELY understand the need for use of a cane or other walking assisted device - at least at times. There are days that I can't walk across the room without holding onto the wall or someone else holding me up. I literally have to crawl up the stairs some days. I have fallen numerous times.. once in the bathroom - hit my head on the side of the tub and got knocked out for about 5 minutes or so until my kids found me on the floor. It's a VERY scary thought that something like that can happen when no one is around. I'm home alone for about 6 hours every day.

I would buy myself a cane for those days, but I think it's my pride that gets in the way for me. I keep feeling like if I give in to needing something like that, I'll end up giving up. But that's just me.

As far as Fibro being progressive, I don't know. I've read that it's not, but I do have a theory. I think that over time, during flares, alot of us tend to just stop moving around.. eventually our muscles get weaker, making it harder for us to bounce back from a bad flare.. therefore every flare seems to get worse and worse because we're still trying to recover from the last one.

I had an EMG (I think that's what it's called - the electronic needle thing) a while back that did show that I had muscle deterioration in my legs. UNLESS it's not Fibro (which is a possibility), I honestly attribute that to my many many days of lying in bed all day because it hurt to walk so much. My muscles were just so weak.

No matter how bad the pain is, I make it a point to stretch my muscles every day. It really does help me out alot. I'm no where near as weak as I was 3 years ago.

Sorry I got to rambling there!!

 
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Old 05-26-2004, 07:21 AM   #3
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Join Date: May 2004
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taurus3 HB User
Re: How independant can we expect to be?

Hi There, No wheelchair or cane here but I can relate to the problem. I've had many times when I couldn't walk and my husband would have to come get me off of the toilet because I was stuck. I agree with the theory about stretching and muscle weakening. Even if I'm stuck in bed I do my stretching and yoga.

Rather than viewing exercise as something that's fun and all that happy stuff healthy people get to have, I look at it as physical therapy which is very painful. Even if it hurts the whole time I'm doing it, I know I am fighting to keep the old tin man body lubed up. Christopher Reeve's book about his recovery changed my attitude about this. He talked about how he spent weeks and months just trying to move his finger and how much it hurt but that he fought anyway.

I started this a year ago and it has helped but what's also helped is proper medication which for me is daily flexaril and tylenol 3. Not a lot but small doses. I don't take as much as I'm allowed because I like to be concious and I don't want it to stop working from developing a tolerance.

Right now though I am 6 months pregnant and haven't had meds all that time so last week I had my first crippling flare in a long time. So it's not just the exercise because I have been doing yoga, therapy ball workouts and swimming for that whole time. Without something to relieve the pain and muscle spasms you can't completely avoid flares. I wish I could just exercise it away. I would become the disabled Jane Fonda.

Good luck to you and if you need the cane, use it. Do you also have any dizziness which can come from fibro as well? That has made me unstable at times too. You can take meclazzine (generic dramamine) for that. It comes from an inner ear problem.

 
Old 05-26-2004, 08:25 AM   #4
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Join Date: Apr 2004
Location: Fond du Lac, WI
Posts: 250
typingterror HB User
Re: How independant can we expect to be?

I know they say that fibro supposedly does not get worse, but I totally disagree with this as my muscles have severely atrophied which makes balance very difficult on some days and there is no way I would attempt driving a car as I do not feel like I would have adequate control. It always makes you suspicious that something other is definitely going on that is indeed more serious than what you had originally thought. I too force myself to do in-home walking daily in order to keep moving in spite of pain this causes. I never think about tomorrow or I would be terrified as it takes everything just to get through present day. My main fear is that I will lose all independence and be residing in a nursing home and just waiting for the grim reaper! (TT)

 
Old 05-27-2004, 09:04 AM   #5
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Join Date: May 2004
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Baroness1961 HB User
Re: How independant can we expect to be?

Fibro is multi faceted in it's symtoms and each patient. There are no iron clad rules. They are daily, finding new facts about Fibro. Some people have severe cases and are totally disabled and others are still capable to hold down a job and have a fairly normal life, meaning that the pain is not as dibilatating. Some have actually gotten a good bit better and some the opposite. That's why allot of Doctors won't deal with FMS. There is no set rules to work with and treatment is of the hit and miss variety. As far as using any help aids in getting around, do what you have to do. Some days I need my cane, because I'm not steady enough and sure don't want to fall and break a hip or something, and then there are times I'm O. K. without it. You know your body, listen to it, not someone else who does not know what is going on inside of you.
Baroness

 
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