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Fibrofog
      #77334 - 06/08/04 06:17 PM
tuxedocat

Reged: 02/09/04
Posts: 279
Loc: Ithaca, NY

I started reading Starlanyl's book--OMG, everything she describes is me. I found myself thinking, hey I've felt this way for years! But it's a lot of info to take in all at once. I don't understand the diff between FMS and CMP yet (I'm getting there).

What I want to know is how in the world DID she manage to write this book in spite of her symptoms? Does she explain this later on (I just finished the chapter on Fibrofog)? I just want my brain back!! It is so very difficult to think straight and write good coherent sentences. I feel like I've permanently misplaced my brain. Gah! My problem is I'm ambitious and feel frustrated because every time I try to do something, the thought "I feel lousy, better lay down" overtakes my desire to work.

How do you get over this hump? That's what I want to know. How do you beat the Fibro frog??

My other question: how do I deal with doctors? I've had so many blood tests with no conclusive results. No one believes me when I say I'm tired and hurt everywhere and can't find my mind.

Does that make sense? any suggestions or just general support?

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--Julie

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Re: Fibrofog new
      #77341 - 06/08/04 06:33 PM
LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Hi, Julie, nice to hear from my favorite sweet potato queen!!

I have wondered that exact same thing about Devin. She must be an absolute powerhouse!! I know she's had it for years so she probably has figured out a strategy that works for her. I'm SURE though that she didn't write that book the first year she got it!! I also wouldn't be surprised if she hardly does anything else, no hobbies, no social life, etc. On the other hand, books can be written one sentence at a time whenever you feel well enough, so who knows. (My therapist told me that, she thinks I should write a book, actually!)

As far as the doctors, first go straight to a rheumatologist, don't bother with an internist. Second, go to someone relatively young so that they've heard enough about this. Third, start out by telling him or her that you think you might have fibro because... and then list the three biggest reasons. Fourth, cross your fingers!! And if the first one doesn't give you a good vibe, try someone else.

For now, listen to your body and when it wants to go lie down, OBEY IT. You have the rest of your life to accomplish things, but first you have to get your fibro managed down to a reasonable level. On a lighter note, I now joke with my hubby that I've turned into the ditz we always used to laugh at. And I'm discovering it's kinda fun being a ditz!! There are some definite advantages!!

Hang in there sweetie. Keep me posted on how you're doing, okay?!

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Laura
Keep it simple!

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Re: Fibrofog new
      #77395 - 06/09/04 04:58 AM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA



yeah, i don't know how she does it, either. well, actually i kinda do. like LS said- one sentence at a time. if she felt such a passion for it, then she'd be driven to do it no matter the cost. plus, you have to remember, so much of this is second nature to her - the explanations themselves and her coping mechanisms. she does say, though, that she has to budget her time which is why she can't reply to letters/emails from readers. she said as much as she wants to support others, she just can't do it! her book is her way of reaching out with the answers.

now, as far as the difference between fibro and CMP.... it took me probably 4 readings to "get it" and i'm fairly sure that's a better understanding than most doctors and therapists have. i said most, not all. most of the time in the things i've read, the two syndromes are lumped together if they're even called two different things at all!

when it comes to the frog, i have pushed past the worst of it. it seems like i got that at the beginning of this flare i'm in and i had it bad! after a while, the symptoms started to wane 'til i hardly noticed them. i still have trouble looking for words sometimes and i forget stuff at the store (when i have the energy to go!) but it's nowhere near as bad as it had been. i've said before, i had my times where a fashion magazine was "too complicated" and i couldn't make sense of anything. that was frustrating and scary. no one wants to feel they are losing their minds! i cope by writing everything down- i always have a list of stuff to do/buy with me on a sticky note. i put it on the desk while i work and in my wallet when i'm not here. when something crosses my mind ("pick up drycleaning" or "get tomatoes" or "send birthday card") i put it on the list. it's been invaluable! i tried a little notebook but it was too cumbersome. the note works better for me. i keep my purse near me all the time (not obsessively, but if i'm downstairs, so is it) so it's easy to go get the note- otherwise i'd just say "oh, i'll remember to add it later" and i won't! other than that i just put stuff in the same place all the time so i know where to find it. it's forced me to be organized- which i wasn't before! for the last year i "lost" my keys so many times i ended up buying a little (bright orange) "rapelling hook" and i actually clip my keys to my purse when i'm not using it! still, i actually forgot to bring lunch and my ever-present bottle of water to work the other day. guess i need a different note: bring lunch, get water, put on pants.

anyway, the upside is this: for me, at least, the frog gets less powerful as i work through my flare. this was the worst flare i've had (in retrospect i can identify other flares- didn't know what they were at the time!) and the worst frog i've had. as i went through the days of the flare, i got "smarter." also: SLEEP HELPS FIGHT THE FROG! at least, it does for me! (all hail Ambien)

when it comes to doctors, i was lucky and had switched to a new doctor for other reasons and on my very first appointment she called it. she sent me to a rhumatologist who confirmed. then again, maybe that's not so "lucky" 'cause i've had it for years and years and was really fighting it the last year and a half and my previous doctors never made the connections... LS gave you some good advice- get a referral to a rhumatologist (i've heard neurologists can be helpful, too, though when i went to one years ago for debilitating migraines he just wanted me to journal for weeks at a time without medicating me. i think he was doing a study. i came close to sticking the journal somewhere unpleasant! so i'm a bit soured on neurologists! )


and LS is the best fibro-guide ever! REST. definitely rest. and then rest some more. if you're not sleeping well, get some meds that can help. try heat (or ice- your preference) on your achies. i'm addicted to my heating pad (kinda literally!). and my next best advice is take a walk and do some stretching. ok, ok, you're exhausted. i know! believe me i know! i am still really exhausted, too. but i promise you this, if you stretch just a tiny bit every few hours and take even a 2 minute walk, you'll feel a little more limber and that really, really helps. i don't know if you read my post the other day, but i walked all of a block and a half on Monday. that's all i could do. but my back felt a little better for it! i am a lazy, lazy, non-active, non-physical person. add the fibro- exhaustion to that and i kept thinking "you're nuts! go for a walk!? there's NO WAY." well, i wish i had dragged my butt up earlier 'cause it's made a huge difference. just even go walk around the house... do whatever you can and build it up. it's good for your psyche, too- you feel like you've really accomplished something. (and you totally have!) i loathe the idea of walking and stretching, but boy am i glad i force myself. now my longer-term goal is to get back to the gym. i may not get there before the end of the summer, but i'm going to do it! (lazy as i am, i always did enjoy the circuit training. mostly it's cardio that makes me groan- a lot! i dread it!)

anyway, i hope i didn't write too much for your frog to comprehend! keep posting. and reread that book as often as you need to- i'm glad she wrote it but she's not the world's best writer. she could simplify a bit more and make us all sweat less!

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Re: Fibrofog new
      #77407 - 06/09/04 06:18 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

I'm like Jen, when I get a flare-up, my froggie attacks, but then I can gradually fight back. I get bad spells, bad days and then good spells. Some days I can do physics, some days I can't write a shopping list. But notes are good! I remember nothing without my notes.

You're still new to this - it took me months to work out what was going on and how to cope.

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HEE HEE! i just LOVE that big stupid grinning frog! -nt- new
      #77427 - 06/09/04 07:24 AM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA



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Jen you absolute sweetie!!! new
      #77504 - 06/09/04 09:30 AM
LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

"and LS is the best fibro-guide ever!" Sweetie pie, you made my day, maybe my month!!!!!!! Thank you so much! I'm always concerned that I'm giving too much advice and being too "bossy" so that really means a lot to me.

SMOOCHES!!!!!!!!!!!!!!!!!!

--------------------
Laura
Keep it simple!

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i speak only the truth! (edited) new
      #77511 - 06/09/04 09:39 AM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

actually, i wanted to say this:

LS, i don't know where i'd be without you. you will never know how much your help and support has meant (and continues to mean). i really have thought i was going crazy a few times and you've been a calming and sensible and informative voice in the insanity that is the initial fibro diagnosis. (and for me, there is never TOO MUCH information!)

i really really couldn't do it without you! so thank you!



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Edited by jenX (06/09/04 09:44 AM)

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LauraSue new
      #77536 - 06/09/04 10:17 AM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Honey are you mad! What would we do without your advice and support? Never, ever stop telling us what's what.

Love ya!

Linz

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I'm jealous of "grinning frog's" great looking teeth!!!!! Does he floss every day? -nt- new
      #77581 - 06/09/04 11:40 AM
barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas



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Re: LauraSue new
      #77613 - 06/09/04 12:56 PM
LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

LOL! Okay, Linz, but you'll be ssssoooorrrryyyyyy!

And Barbie! "Does he floss?" ROTFL!!!!

--------------------
Laura
Keep it simple!

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