Thread: Fibromyalgia
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Old 07-03-2006, 04:36 AM
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Originally Posted by janet
Elizabeth, sounds like you have a great schedule to work around your fibro...I was able to work for a few years..then the fibro started to stay with me..on a daily basis. Which I always thought Fibro was to come and go?
Yes, mine is "with me" all the time, too. Some days are better than others, but not a day goes by without major pain somewhere. I just deal with it through coping mechanisms I've developed over the years. I've had symptomatic fibro for nearly 30 years now (probably had it all my life), so I've had lots of time to "practice" which things help and which don't!

Originally Posted by janet
My doctors do not believe in pain meds of any I take alot of Aleve. To me it allows me to get the edge off of pain...and then I can get to sleep at night, for a few hours.
I have gone through all the NSAIDS. It is interesting that, just like rheumatoid arthritis and other "recognized" autoimmune diseases, there comes a point when a particular NSAID no longer works and you have to switch to another one. I've gone through Butazoladine, Indocin, Ibuprophen, Naprosyn, Voltaren, Celebrex, and Vioxx. Vioxx lasted the longest, and made me feel better than any of the others. I was really torqued out when it was removed from the market. I hoarded my remaining Vioxx, and used it to get me "through" stressful times until I finally ran out. Now, I'm struggling without an NSAID until the next one comes down the pike. No fun!

Originally Posted by janet
I think the worse part of this illness is how it affects all aspects of your life...for me, not working, is the worse.
For me, not being able to predict how I'll feel on a particular day is the worst. It makes planning for the work I do very difficult. There are days I have to work from bed (Praise God for laptops!) in "spurts" of 15 - 30 minutes with 30 - 60 minute naps between. I take Flylady's philosophy to heart: "you can do anything for 10 minutes." That's how I get through many days - 10 minute blocks at a time with however much rest I need between.

The fatigue is also miserable. I think the fatigue component is often worse than the pain component.

Originally Posted by janet
Do you take megadoses of vitamins? Just curious..for I am currently trying that, under doctors care.
No, I just take a "Senior formula" vitamin everyday. But I add a few things - 1000 mg Lysine (I have had shingles); 50 mg Zinc twice a day (I have geographic tongue and have taste problems); Omega3 with Flax and Borage; and a super B complex supplement. I'm considering adding mega-dose niacin to see it that will help me deal with the osteoarthritis I'm developing in my fingers and thumbs - interferes with typing. I read that 500mg every 3 hours (day and night) for several days and then 500 mg 4 times a day thereafter makes all the pain and lumps go away. I've tried Glucosamine Chondroitin, but it didn't help noticeably - I took it for a year and decided it wasn't worth the $$$.

Everyone is different, and everyone's experience with fibro is different. Guai has been the most help for me, but certainly isn't a "cure" for all the effects of fibro.

I wish you much success in finding medications and coping methods that work for you. Have a great 4th of July! And make the decision that fibro won't "rule" you - you will "rule" your fibro!! Yeah!

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