So that is what I have?

TobysMom

New member
Joined
Jul 21, 2022
Messages
5
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
NM
Hello,
I was just diagnosed yesterday and oddly enough, I am so glad. It has been years of wondering what in the heck is wrong with me, at least I now know what I have and how I can manage my life from now on. Thank you for having this forum. I spent most of last night reading and seeing answers to "oh, yeah, I have that too" and feeling that now I can understand my diagnosis. As many of you, I have spent so much time trying to find "cures" and getting nowhere. Finally, after a disastrous trip to visit our family in the Pacific Northwest where I was sicker than I had ever been, my doctor had me write down all my symptoms while I was gone, and when I returned from vacation she said ...well, here it is! Did any of you feel the same once you got the diagnosis?
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Did any of you feel the same once you got the diagnosis?
Hi there, and a warm welcome to you!
Vacations/holidays were what made my wife and I more and more suspicious too, I can very much relate to that. In hindsight it was and still is esp. the wind, the irregularity of the environment and everyday life, plus the hardship travelling itself. At the moment even short trips send me into week-long flares.
I think getting a diagnosis is very ambivalent. But firstly it's a step of progress which gives a sense of direction and orientation, praps also a gist to grapple with and see what it is, whether it is really that, what is something else etc. So yes, I definitely was glad.
At the same time, it was a dismay for the hope that it might go away and knowing that it won't get much easier. And that is actually where I've now progressed to: Learning that the most part of alleviating my symptoms is to look at them individually.
But to improve my symptoms the diagnosis was helpful: It pointed me to many many ideas on the web, on the forums. The ideas for other diagnoses wouldn't have helped for that at all.
So I'm glad you've found this forum so quickly! It took me 7-8 months to realize that docs will not be able to help, that I need other people with this diagnosis.
It would have saved me a quite a bit of suffering if I'd've read here, like @sunkacola's Big Advice Post. But I spose I'd still have had to go thru all the ordeals of harmful doc treatments... like many of us.
And of course we usually have to go thru a grieving and then accepting process.

But all of that is what we can support each other with, so it's brilliant how much of a help the diagnosis is for you and that you've us so quickly!
 
Last edited:

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Hello,
I was just diagnosed yesterday and oddly enough, I am so glad. It has been years of wondering what in the heck is wrong with me, at least I now know what I have and how I can manage my life from now on.
I was relieved, too! For 18 years I could tell people what I was feeling (lead in my veins, a fever on steroids, etc.) but it's not as helpful as saying, Hey, I have this. It helped me get the message across, and helped them understand the message.

The biggest blessing is that I now give myself permission to say no to various things that I always felt I had to say yes, too. Boy, is that nice! 😍
Thank you for having this forum. I spent most of last night reading and seeing answers to "oh, yeah, I have that too" and feeling that now I can understand my diagnosis.
Happy to know you're finding confirmation and help here ❤️
As many of you, I have spent so much time trying to find "cures" and getting nowhere. Finally, after a disastrous trip to visit our family in the Pacific Northwest where I was sicker than I had ever been,
I am so sorry you ended up in that position on a trip.

My issues took a huge turn for the worse the beginning of this year (18 years after it all started). A huge shock, but the silver lining is it got me desperately seeking for answers.
my doctor had me write down all my symptoms while I was gone, and when I returned from vacation she said ...well, here it is! Did any of you feel the same once you got the diagnosis?
It's funny how we each have shared a lot of the same emotional healing, too. We are all different, but I also see here that my guilt for not doing what "I am supposed to" (social commitments, working sun up to sun down), my fear that everything is all in my head, etc. are feelings a lot of us shared. Guilt has been the hardest thing for me to lay to rest...

All that to say: here is one place where fibro's effects on me are widely understood and that has been a treasure ❤️❤️❤️ and I believe you will find the same here 😁. Welcome to the forum 🥳
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
216
I was glad at the time at least there was a diagnosis but had already had a frustrating time with doctors. My own attitude through depression made things more difficult than they needed to be. Making a good friend at a pain clinic and being in contact with other sufferers online has made a big difference. It's not the same when speaking to someone who doesn't know what it feels like, although compassion and patience are always welcome. @TobysMom it sounds like you are approaching things in the right spirit which will be very helpful. There's a lot of good info onsite such as the advice post linked above. It can help to build a bigger picture and path to set out on in discovering how best to manage your Fibro. Fair play to you for trying to take a trip, it's a shame about the flare up and must have really knocked you, but at least you tried and there are still things to learn from it. Atb
 

TobysMom

New member
Joined
Jul 21, 2022
Messages
5
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
NM
thank you for responding. It is so great to know that I have a place to go, to people who will understand. I think one of the hardest parts will be understanding from family and friends. I am so happy that I found this forum. Take care.
 

TobysMom

New member
Joined
Jul 21, 2022
Messages
5
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
NM
thank you for responding. It was so awful having that flare up at my families home. I am from New Mexico and am used to heat. When we got up to the NW, it was cold and rainy. This was when my body said "I don't like it here" and showed me who was boss. All these years I have wondered what was wrong with me when different flare ups happened. I spent years going from doctor to doctor, taking so many medications and finally I found a nurse practitioner (I call her my doctor) found the answer. Knowing I have a place to come to, people who understand, I am so grateful..
 

TobysMom

New member
Joined
Jul 21, 2022
Messages
5
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
NM
Thank you so much. I am working on understanding why I feel as I do, mentally as well a physically. Knowing I have a place to come to when I need support is priceless.
 

TobysMom

New member
Joined
Jul 21, 2022
Messages
5
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
NM
Sweet Kamie...Ha Ha....Halleluiah
 
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