A proper introduction: DX Fibro

RLG

Active member
Joined
Aug 2, 2020
Messages
65
Reason
DX FIBRO
Diagnosis
07/2020
Country
US
State
MI
Hi. I've been following this forum for a short time and thought it was important to properly introduce myself. I am a female in her early 50's, officially diagnosed with fibromyalgia July 2020. The diagnosis was no surprise, I've known it my deepest heart for months. My history is a long one, but I am relieved and comforted to learn it is not unique. I am verbose, so will try to keep it short and succinct...

ME:
I have had pain since I was a child..."growing pains', cramps, hands-back-feet-knee pain since adolescence etc.
DX and treated for TMJ at university of Michigan TMJ Center in my teens
car accident in teens, minor but onset of shoulder/clavicle pain
DX Epstein-Barr Virus (EBV) early 20's
DX CFS early 20's
DX ilio-tibular band issues late 20's
DX ocular migraines late 20's
C-section early 30's, pre-eclempsia
DX EBV re-infection (mononucleoisis) Dec. 2015
H1N1 Feb 2016
Acute Respiratory Distress Syndrome (ARDS) March 2016--intubated on ventilator in coma for one week, hospitalized one month, un-DX Post ICU Syndrome (PICS) for...2 years?

FAMILY:
both parents DX PsA, mother DX fibromyalgia
child DX Mast Cell Activation Disorder, Celiac Disease, Hashimoto's

That is where my story turns. The plot really thickens after the ICU. It has been a horror show since the ARDS, but I am who I am--resilient, accepting. I am a glutton for punishment, in that I am too stubborn to give up, even when it could save my life. I didn't know such as thing as PICS existed. No one warned me of the physical/mental/emotional after effects, I figured it out on my own. It was a ****show. Pain, fatigue, memory loss, dizziness, bumping my head all the time, terror, flashbacks, PAIN PAIN PAIN and more exhaustion. I finally started researching ARDS side effects and eventually figured it out and self treated with exercise, mindfulness, self soothing techniques, hobbies, self reflection, note taking, list making, and laughter. Simplified for sensitive readers? Yes. Trust me, it wasn't-isn't easy...

I knew it was more than that about a year and half ago. It wasn't going away or getting better. Pain worsening. Fatigue never resolved. I am an insomniac. And a very hard worker. I crochet. I was a very involved parent when my child was growing up (now a young adult). I like camping, dogs, cooking for my family, taking care of others, and being outdoors. I LOVE CARDIO KICKBOXING! 2020 has been a downhill slide in to unbearable pain, stiffness, vertigo, jaw pain, and CFS like fatigue. Finally found a new Internal Medicine doctor, was DX Fibromyalgia July 23, 2020.

Phew!

I have a sense of humor that is my saving grace. I have a critical mind that insists on following a hunch or idea all the way to it's conclusion (often a huge challenge when faced with the memory loss and fog of war ie. brain fog of fibro and post-ICU syndrome.) I have learned these past 4 years to fully embrace and insist on participating in the joys of life. TO LIVE THE LIFE I HAVE BEEN GIVEN. I have made it a way of life to find gratitude every single day. It heals me and fulfills me to nurture and comfort others on a deep and profound level. It is absolutely necessary for someone suffering, hurting to find people to share with and learn from. It is absolutely necessary for medical providers to hear us and understand/value our issues and concerns with compassion and trust.

Thank you for being here. Thank you for reading. And please, if anyone has a question about anything I have or will be sharing, I am appraochable and kind. I do not ever wish to "dump" the baggage of it all on others, but I really do believe someone out there can benefit from my own awful experiences.

It's going to be OKAY!!!

In Gratitude,
RLG
 

JayCS

Active member
Joined
Sep 5, 2020
Messages
89
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
car accident in teens, minor but onset of shoulder/clavicle pain
self treated with exercise, mindfulness, self soothing techniques, hobbies, self reflection, note taking, list making, and laughter.
vertigo, ... jaw pain, ... I have a sense of humor that is my saving grace. ... I have a critical mind that insists on following a hunch or idea all the way to it's conclusion ... I have learned these past 4 years to fully embrace and insist on participating in the joys of life.
TO LIVE THE LIFE I HAVE BEEN GIVEN. I have made it a way of life to find gratitude every single day. ... It's going to be OKAY!!!
RLG, I can deeply relate to all of this, tho my 30 diagnoses are mostly different...! :)
clavicle: I broke it in a bike accident 14 years ago, but fibro made it flare up, esp. at night. Osteopathy and acupressure got rid of it again.
vertigo: I get nausea with certain PT-exercises which seems to me to be myofascial, I'll be asking about that sometime soon.
jaw pain: I thought it was trigeminus for 3 years, which I thought I had 20 years ago, got on the other side too with the fibro, but asked my other dentist a second time, to be sure. He X-rayed the whole jaw and found 2 root inflammations. Gone!(?)
The rest I just left in to especially emphasize: ditto, ditto, ditto! :)
 
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