finally! have suspected for a long time

cookiebaker

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Jul 26, 2022
Messages
491
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DX FIBRO
Diagnosis
07/2022
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finally got a Fibro diagnosis last week... have suspected this was what was going on for a long time, so it is nice to finally have confirmation.

my journey with this started in about 1999 - and has progressed to the point where I can barely function anymore..
hoping to learn coping skills, info about treatments, and sharing empathy with my "fello" Fibro sufferers
 

Auriel

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Hello I'm glad youve been given a diagnosis (it's very annoying having a bunch of symptoms and not knowing what it is) we can let you know what's helped us and see if it can help you too (it might or might not) but any hints and tips are better than none imo, i don't know if your new (not seen your name before) but I like it (and we're all coming round to sample them : )) ☕🍪😄
 

sunkacola

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Hello Cookiebaker, and welcome.
For strategies on managing fibromyalgia, and possibly even improving your symptoms but definitely improving your life, please see my advice post. Once you have read it, try some things and get back to us with any questions or comments. We are here to inform, support, listen and advise as best we can.
 

sweetkamie20

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Joined
May 16, 2022
Messages
345
Hi cookiebaker 😁.

Happy to hear you’ve got a diagnosis to work off of. That was a tremendous blessing to me.

Sunkacolas info post is encouraging and informative so if you’re looking for some empowerment vibes you’ll find them there 😍

Laughter and commiserating are amazing as well. If you’re looking for those come check out the post called Memes: a Touch of Humor for Us Fibromites. It might make you laugh or show we are sharing this journey alongside you ❤️❤️❤️

Welcome!
 

JayCS

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1,956
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DX FIBRO
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02/2020
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GE
finally got a Fibro diagnosis last week... have suspected this was what was going on for a long time, so it is nice to finally have confirmation.
Hi there, cookiebaker: Hope it wasn't docs that were slowing the process down...
Thankfully researchers are trying to get newer criteria (like those of the ACR 2016) more accepted and read by docs and patients to accelerate the diagnosis, whilst not slackening on checking everything else it might be....
 

Auriel

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Exactly, that's what I was thinking 👍🏻
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Thank you all very much for the welcome. :)

I did read thru the welcome post, and yeah, lots of great ideas. I did cut gluten for a while (had bloating, gas, etc) but that did not seem to make any difference at all.

Not sure about giving up on the dairy, tho... I love cheese - nearly all varieties (cream, cottage, colby. cheddar and so on), ice cream, malts, sour cream, and so many other things, and I do live in the Dairy state, LOL - very hard to avoid the stuff.

I have also been in the memes thread as well.. lots of good ones in there! Thanks for those! Gotta at least try to laugh, or i would cry.

as for the Docs.. well... they are probably a bigger part of the long time to finally get that diagnoses, and the last couple of years have been really rough... Have had gobs and gobs of testing done... rheumatology & related, lyme (negative), thyroid function testing, you name it.. Have a whole bunch of diagnoses for other things now, in addition to finally getting the fibro diagnoses... The pain resulting from the fibro is nuts... my left knee is pretty bad right now.. all the tendons/ligaments are so painful it hurts to walk much. other areas hurt too, but the knee is really bad at this time..

Pretty much every joint in my body has some degree of osteoarthritis with my lumbar back and neck being the worst - have two subluxated vertebra as well - one in lumbar, one in neck... Hands are getting pretty bad with it... several joints have that lumpy look already
The lumbar region is so bad that I can not stand upright for more than maybe 10-15 minutes. Have had radio frequency ablation in that area once already (both sides of spine) back in October, and will be going in on Aug 4th to get the right side done again.

Also have carpal tunnel.. have had surgery on the right wrist for that and may be getting the left one done soon. I go tomorrow to see about that.

Have been battling a kidney stone for a couple of months - just had a procedure this morning (Wed 7/27) to remove it.. was told afterward they found FOUR stones.. Needless to say, i am feeling pretty poorly right now... thinking very hard about heading to bed soon.

sorry for the long winded whine... just one of those days, i guess...

Again, thank you all for the welcome... we can survive this, one day at a time!
 

JayCS

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Gotta at least try to laugh, or i would cry.
Quite often that my laughing turns to crying and then laughing again... 😥
Have had gobs and gobs of testing done
Is that a new English word for me or a typo? 🧐
my left knee is pretty bad right now.. all the tendons/ligaments
osteoarthritis with my lumbar back and neck being the worst -
have two subluxated vertebra as well - one in lumbar, one in neck...
Hands are getting pretty bad with it... several joints have that lumpy look already
The lumbar region is so bad that I can not stand upright for more than maybe 10-15 minutes.
Quite a bit of local pains with explanations - any PT / exercises possible?
we can survive this, one day at a time!
Yeah, sometimes it's a second at a time. And relishing one second where we for some reason don't seem to feel the pain. And then just holding on like a dog and taking care like a mum/baby.
Not sure about giving up on the dairy, tho... I love cheese - nearly all varieties (cream, cottage, colby. cheddar and so on), ice cream, malts, sour cream, and so many other things, and I do live in the Dairy state, LOL - very hard to avoid the stuff.
Well... there's lots (gobs? 🤠) more treatments to try than of all things your beloved dairy 🐮! 👐
And.... many of the things I try successfully apparently no one else even considers doing, so it wouldn't be at all fair asking specifically you if you're not suffering enough .... and haven't got any other foods you love, at least for a 3 week trial.... so I won't... 😏
But as a kid I said/thought my life wouldn't be worth living if I couldn't drink fizzy drinks. When I was about 30 I realized that these are acidic and are considerably worsening my stomach hyperacidity. Now I'm down to 50 foods (20 main ones) due to hyperacidity, IBS-D, various further additional intolerances, lipids & histamine.... Meaning I can hardly eat elsewhere. But I've learnt to enjoy what I can eat, to allow myself slivers of foods I don't tolerate or the smell (except onions or mint, there the smell has the same effect as eating).
That said as you've already tried things like gluten with no difference (I did it for several months, with no effect, and still go easy on it just in case) and I don't think dairy is a major one, I think alcohol, sugar, caffeine etc. probably have much more to account for. So sounds to me like you're doing well with trying out treatments already.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
I have also been in the memes thread as well.. lots of good ones in there! Thanks for those! Gotta at least try to laugh, or i would cry.
More memes are on the way because fibro owes us at least laughs!
Have a whole bunch of diagnoses for other things now, in addition to finally getting the fibro diagnoses...
You’re a soldier 😮.

Not sure if this will help but my mom has had carpal tunnel for a long time. She got the surgery but what actually fixed it is an orthobionomist. Strange title I know. My mother in law went to see the same person due to long term trouble with walking post hip surgery. She was so excited about the results. Just something I threw out here because what if it could help and I didn’t share it?

You’re right - we’ve got this.

If there’s 1 thing fibro is good for it’s for finding amazing people full of empathy, humility and with generous hearts. We are pretty amazing people ❤️
 

Auriel

Very helpful member
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Joined
Jun 8, 2021
Messages
851
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Thank you all very much for the welcome. :)

I did read thru the welcome post, and yeah, lots of great ideas. I did cut gluten for a while (had bloating, gas, etc) but that did not seem to make any difference at all.

Not sure about giving up on the dairy, tho... I love cheese - nearly all varieties (cream, cottage, colby. cheddar and so on), ice cream, malts, sour cream, and so many other things, and I do live in the Dairy state, LOL - very hard to avoid the stuff.

I have also been in the memes thread as well.. lots of good ones in there! Thanks for those! Gotta at least try to laugh, or i would cry.

as for the Docs.. well... they are probably a bigger part of the long time to finally get that diagnoses, and the last couple of years have been really rough... Have had gobs and gobs of testing done... rheumatology & related, lyme (negative), thyroid function testing, you name it.. Have a whole bunch of diagnoses for other things now, in addition to finally getting the fibro diagnoses... The pain resulting from the fibro is nuts... my left knee is pretty bad right now.. all the tendons/ligaments are so painful it hurts to walk much. other areas hurt too, but the knee is really bad at this time..

Pretty much every joint in my body has some degree of osteoarthritis with my lumbar back and neck being the worst - have two subluxated vertebra as well - one in lumbar, one in neck... Hands are getting pretty bad with it... several joints have that lumpy look already
The lumbar region is so bad that I can not stand upright for more than maybe 10-15 minutes. Have had radio frequency ablation in that area once already (both sides of spine) back in October, and will be going in on Aug 4th to get the right side done again.

Also have carpal tunnel.. have had surgery on the right wrist for that and may be getting the left one done soon. I go tomorrow to see about that.

Have been battling a kidney stone for a couple of months - just had a procedure this morning (Wed 7/27) to remove it.. was told afterward they found FOUR stones.. Needless to say, i am feeling pretty poorly right now... thinking very hard about heading to bed soon.

sorry for the long winded whine... just one of those days, i guess...

Again, thank you all for the welcome... we can survive this, one day at a time!
Get better soon 💙💜💙
 

Auriel

Very helpful member
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Joined
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Messages
851
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DX FIBRO
Diagnosis
08/2006
Country
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State
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Quite often that my laughing turns to crying and then laughing again... 😥

Is that a new English word for me or a typo? 🧐

Quite a bit of local pains with explanations - any PT / exercises possible?

Yeah, sometimes it's a second at a time. And relishing one second where we for some reason don't seem to feel the pain. And then just holding on like a dog and taking care like a mum/baby.

Well... there's lots (gobs? 🤠) more treatments to try than of all things your beloved dairy 🐮! 👐
And.... many of the things I try successfully apparently no one else even considers doing, so it wouldn't be at all fair asking specifically you if you're not suffering enough .... and haven't got any other foods you love, at least for a 3 week trial.... so I won't... 😏
But as a kid I said/thought my life wouldn't be worth living if I couldn't drink fizzy drinks. When I was about 30 I realized that these are acidic and are considerably worsening my stomach hyperacidity. Now I'm down to 50 foods (20 main ones) due to hyperacidity, IBS-D, various further additional intolerances, lipids & histamine.... Meaning I can hardly eat elsewhere. But I've learnt to enjoy what I can eat, to allow myself slivers of foods I don't tolerate or the smell (except onions or mint, there the smell has the same effect as eating).
That said as you've already tried things like gluten with no difference (I did it for several months, with no effect, and still go easy on it just in case) and I don't think dairy is a major one, I think alcohol, sugar, caffeine etc. probably have much more to account for. So sounds to me like you're doing well with trying out treatments already.
I think gobs is a typo for lots 👍🏻
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
LOL "gobs" is a synonym for "lots" - not a typo
so yes, JayCS, this is a new "American English" word for you. ;)

Sugar and caffeine will be the hardest to let go of for me... I totally love my big mug of coffee w/sweetened creamer in the morning and tend to be a bit crabby without it. I can most definitely cut back... and have a fair bit.. used to refill that big mug of coffee, now it is just the one.. and sugar, I have a dark chocolate M&M habit.. but i am doing pretty well on cutting back on that.. used to have them every day.. now it is once every few days

feeling a bit better this morning after yesterday's procedure... not great, but a little better..

One day, minute, second at a time...
 

Auriel

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Messages
851
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State
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Well I've learned something new today! might start using the term from now on!😃😎
 

Auriel

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Messages
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The only one what? 🧐
 
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