Fibro question--LS, Jen, Linz
#74859 - 05/30/04 08:59 PM
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tuxedocat
Reged: 02/09/04
Posts: 279
Loc: Ithaca, NY
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Ok, so I've recovered from the move and the flight. I'm sleeping well (thanks to 2 Ambien I pilfered off my mom), about 8-9hrs. But I'm still feeling iffy. I woke up this morning and wanted to scream. I was so stiff! My muscles are still twitchy and kinda achy, esp. elbows, hips, knees. It was a beautiful sunny day and I began to tell my mom, "I want to go out and ????" A total blank. Sunbathe was what I meant, but the word was not there.
How long should this go on before I start to worry? I notice the websites say 3mos. of pain for a diagnosis, but does that mean 3mos with a flare up or 3mos with flare ups off and on?
I started to exercise again on Friday and feel a little better for it. But how much is too much? How much rest should I get? I've got no sense of my limits, since this is only the third time I've this whole achy/severly fatigued thing.
I'm still hoping this will just go away as suddenly as it came on, but I think I may keep a journal of symptoms just in case.
Any recommendations on what to read (since you guys have probably read everything!)? I've looked at the FMAware, Arthritis foundations, and Mayo Clinic websites, but I was browsing in the bookstore yesterday and there are so many books, I didn't even know where to start.
Sorry to whine, but I'm just SICK of feeling like this and want to feel well enough for my summer course in Indiana.
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--Julie
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Oh honey! I'm so sorry you're still feeling bad.
I think the 3 months thing is on-and-off, but regular. Like, when I'm going through a good patch, my knees still twinge most days. A 3-month flare-up would DEFINITELY qualify.  Having said that, I had a couple of months last fall when it seems to be ALL the time. Sounds like you and Jen are going through that now.
Learning your own limits wil just take time. I find with exercise that I have to make myself stop BEFORE I get tired, cos I know that if I only stop when I feel tired, 5 minutes later I won't be able to move. Also, if you only do a bit of exercise and don't have pay-back, you can always do some more later, but if you do too much, you might be in bed for the next 2 days doing nothing. Rest as much as possible - corpse pose in yoga kicks ass for this. Conserve your energy - you'll need it later! 
A journal of symptoms is a great idea. I'm just crap at remembering to do that. Book wise, LS and Jen will know more - but I know Deven Starlanyl's (sp?) survival manual is recommended - I've just ordered it.
Good luck hon! And you're NOT whining - this sucks!
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Hi, Julie, good to see you around again. Sorry you're feeling so bad. The approach I take with exercise is to do 5 min at a time, then do a reality check and ask myself if I can do another 5 min without ending up feeling worse. Sometimes all I can do is 5 min, sometimes I can actually keep walking for 30 min, although I would NOT advise you to try that yet! Baby steps please!
You don't have to wait three months to go to a doctor and say I feel lousy. Mine made the diagnosis pretty quickly just based on my history and symptoms, and prescribed Elavil to help me sleep immediately.
As far as books, Devin Starlanyl's is known as the fibro bible. Claudia Craig Marek's First Year book is good although I disagree with her about the hypoglycemia diet and the guafenisin protocal (no scientific studies support either one). But she has great ideas on coping. The best book I've read yet is from the Arthritis Foundation, Making Sense of Fibromyalgia by Daniel Wallace, MD. It was just updated and really explains the medical aspects well.
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Laura
Keep it simple!
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Oh Julie, you've had such great advise for me, with the headaches and all, and now I don't have the right answers for you. It makes me feel so helpless!!
I think LS and Jen and Linz will have better answers than me since they KNOW they are fibro, and I, well, I don't know if this is the thyroid thing or something else.
My only advise, something I've had to FORCE myself to do, is to rest whenever you can or feel tired. If not things get worse.
A jounal is good. A pain I'm sure, but good nonetheless.
You will get to the bottom of this, I know for sure........I just wish it all suddenly goes away for you......and NEVER comes back.........
As I wish the same for all of us suffering right now........
Kandee
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thank you all ladies for you sympathy and advice! i haven't been around much because I'm at my parents' and so feel obligated to spend lots of time with my family and less time on the computer. I've been lurking about once a day, just to keep up on everything that's going on. My computer is packed away in Ithaca, so it's kinda touch and go with email for most of the summer.
Today was better--slow but steady improvement, though I just have a general ache. I couldn't do any walking, but I could do weight machines (very light). Strange that that was easier. I don't get it. Tonight I'm just going to watch the Laker game and chill out! But maybe tomorrow I can look into getting some of those books and start figuring out what might be wrong with me!
Kandee: how are you feeling lately? are the headaches any better?
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--Julie
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Hi Julie, I'm so glad to hear today was a bit better. Amazing when you reduce the stress how the body reacts.
I have no doubt you will figure out how to best treat yourself so that you can function at the best level possible.
(I can see you now, pouring over those new books you're going to get!!)
Thanks for asking about the head aches. They are considerably better, but yesterday had a doozy all afternoon. Meds and rest and the cold on the top of the head, as you suggested, helped and today was almost headache free. The neck and shoulder pain has been reduced too..I feel they were connected with the headaches. Maybe I'm on the mend, but the fatique level is still on the ceiling...........I hate it.
Keep us posted............
we're wishing you good days, every day......
Kandee
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