Thread: Fibromyalgia
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Old 06-26-2006, 02:27 AM
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ewriggs ewriggs is offline
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Originally Posted by janet
Elizabeth, I tried actually made me feel worse, maybe due to the fact that I have other overlapping illnesses.. early on in my Fibro..I was able to go into remission for months at a time..with minimal pain, and fatigue..not any is with me every single day..I try not to focus on it..and try to not let it rule my day.

Are you able to hold a job?
If so, what type of work do you do?

I've had Fibro for over 30 years - diagnosed about 20 years ago. Guai will make you feel worse for about 6 weeks. You may have been taking too much. Some people can only tolerate up to 300mg a day! As another Guai user says, "Guai ain't fer the faint of heart!" There are a few people who can't tolerate it at all, and you may be among those.

No, I can't hold a "traditional" job, but thanks to FedX, UPS, the US Mail and the Internet, I am able to work as a legal nurse consultant. Attorneys send me the medical records of people who have personal injury claims or think they may be the victims of malpractice. I analyze, review, summarize, and explain the meaning of the medicals. I'd say about 85% of the cases I review turn out to NOT be malpractice, but that 15% - Hoooo boy! Now this is after the initial screening the attorney gives the records - he's already rejected about 1/2 of the records that have come to him, so medical and nursing malpractice aren't as frequent as some people think they are.

I've fond that I have to give myself about an hour in the mornings (sometimes more) before I can accurately assess what that day will be like. Thunderstorms and major weather changes, especially when it's cool, will throw me into a "flare." I have a "window of opportunity" that usually lasts from about 10AM to about 3PM during which I can get things done. On "good" days, that may start at 8:30 instead of 10 and last until about 4:30 or 5pm. On "bad" days, I may not even have that window.

I have found some things to "distract" me when I'm having up to moderate pain (6/10 on "the scale"). When it gets higher than that, however, nothing seems to help except taking pain meds and being "dopey" for a day. After I come out of the "drug fog," I usually have several "good" days in a row. So, if I have a major effort ahead of me (like presenting a n all-day workshop, which I have in October) I'll often take pain meds over a weekend and just fog out for a couple of days. I use Ultram, Skelaxin and Percogesic (OTC pain med) at night to "break" a pain cycle. Otherwise, I take little but Tylenol. I just don't have the time to be "dopey." (I spent a year on daily doses of Ultram and Skelaxin along with Desaryl (trazodone). I was in a "haze" the whole time, and couldn't even drive. My business went into the trashcan. So I decided to taper off of all of it - and did over a 6 month period of time. Not fun!)

Most of the time, however, I just use my tried and true distraction techniques! These include using classical music (especially Mozart and Bach), taking 5 min breaks every 30 min (I set a timer), taking a 2 hour nap every morning and every afternoon - I'm up at 4:30am, make coffee, get hubby up and out, then nap from about 6-8, exercise for 10 - 20 min, work from 9 or 10 to 12, take a 30 min lunch break, work until I "give out" (usually about 2pm) and nap from then until about 4pm - then DH comes home and wakes me up. I do a little more exercise when I get up - usually just walking around the house swinging my arms. He and I take turns making supper. I also use computer games (Freecell, Mahjongg, minesweeper), letter writing, reading, etc to concentrate on something other than any pain I may be having.

Everyone with fibro has a somewhat different experience with it. Some have more pain and less fatigue, some have less pain and more fatigue, and some have serious pain with serious fatigue. Some don't have much "fibro fog" but others have a lot. The main thing all of us experience, however, is a restricted lifestyle. Those who can still work usually can't get much else done in their lives. And those who are married often have difficulty getting their husbands to understand the "real" nature of this waxing and waning condition, and its unpredictability. I know of a number of divorces that resulted from one spouse having fibro and the other spouse being unable to understand, accept and believe what was going on. I'm very, very fortunate that the ol' curmudgeon accepts my "bad" days as "real" and not some made up story to avoid doing things!!

I work on not letting fibro "rule" my day, also. That said, I accept the fact that I have it and that I will always need to adjust my activities to what is "realistic" for how I'm doing that particular day. So to that extent I suppose one could say that my fibro "rules" my life - it's a reality and it affects most of my waking moments - and most of the time I'm trying to sleep.

Do all these things "work?" Not all the time. But I'm able to continue to work at my little business and to have a pretty good relationship with my family. (3 adult, married kids and 11 grandkids.

Probably TMI (too much info)! LOL!

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