Oh gee, what can we say.

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DizzyLizzy

New member
Joined
Feb 26, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
MO
Well, a lot, but ultimately that doesn't seem real useful. However, I'm going for it. I've been dealing
with fibro symptoms a lot longer than it first became an "accepted" diagnosis medically speaking.
I'm sure we've all gone through way too many frustrating appointments, trying to put in words how
we're feeling, and, being a woman, I have NO doubt that's why I was first prescribed Valium WAY back
when...like 1970s.

It's been a constant unwanted companion since then, intermittent, but my muscles always burn, and
ears ring, no matter if I am perfectly still or trying to walk. I think it actually improved when we moved
to Wilmington, N.C., for 4 years. Just returned to Columbia, Mo this past December, and it seems to
be getting worse, or more chronic.

I find the worst aspect of fibro is how it knocks me out physically and mentally. Ordinarily I can walk
at a decent pace for 4-5 miles on a flat surface, but when this manifests, I have to mostly sit and am
pretty inactive. Physicality has been essential for me, being able to move with coordination and
some grace, and being knocked down, well, you-all know how that is. I am also bipolar, which
makes it all the more interesting. Mostly manic, seldom depressed, reckon that's a blessing.

Too tired to go on for now, I hope I'll hear from you-all.

DizzyLizzy
 
Hi Lizzy - I am kinda new to this but suspect I have had signs I wasnt even aware of until a year and a half ago and since then its been exactly what you describe in dr visits and tests galore etc. And alot of misery mixed in. I am not a fan or Fibro for sure, but continue to try to find ways to make it tolerable. This thing can beat you down for sure. Having this forum helps emotionally for sure! :)
 
Hi, Sabrina, I'm so sorry you can relate, but thankful to hear from you. I guess it's just tough
reconciling ourselves to the reality of the condition and that it's mostly out of our control.
I've tried cutting out gluten and dairy, nothing really seems to help. I do appreciate the
times when it's not so debilitating. Duh, eh?! ;O)

Please keep in touch. Are you in any kind of support group that actually meets in person?
I just like seeing people I'm talking to, I guess, facial expressions and all that makes us us.

Would you mind sharing things you do to make it more tolerable? I'm outta ideas!

THANK YOU!

DizzyLizzy
 
I am newly diagnosed and still reeling from the "symptoms"! LOL No I do not go to an in person support group. I want to try to not have to take meds. But I dont ever get a good nights sleep anymore and fatigue is brutal!! Thats the roughest part of Fibro is the lack of control and trial and error in treatment. I like these forums because we can share, complain, or just "listen". For me these help at least emotionally :)

I have not yet found the magic anything to feel better, so I can't help there yet. I too had tried the no dairy gluten cut back on sugar etc and no change. I think that just adds to the stress LOL
 
Hi Dizzylizzy, I can relate very well to what you say about being active and how frustrating it can be when Fibro interferes with that. What I do is try to be active on the days I can, push myself to at least get something done around the house on days when I don't feel good enough to go out and do things, and occasionally when it is really too painful even to walk around much I give myself a special day of just hanging out, relaxing, reading or watching movie, and being with my furry companions. I find it really helps me just to maintain as well as I can a positive attitude, and to let myself feel really good about myself when I go out for a long hike or accomplish other things.
 
Hi everyone,
I am so glad there are people who can relate! It is so hard for "non-fibro" sufferers to understand!
 
I am so glad there are people who can relate! It is so hard for "non-fibro" sufferers to understand!
What I remind myself is that it is not only hard for them to understand, it is impossible. If you have not experienced it, you won't really get it. So if someone can handle it with compassion for the one in pain, that's a lot right there.
 
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