New to forum / Struggling with Fibro DX

[Carmen]

Hey all!

Hoping to learn new information and techniques on how to cope, support and symptoms, etc....

 

[Forgetmenot]

Welcome to the family.i do hope we can help u alittle.jump in tell us your story .

 

[Carmen]

Diagnosed in March of this year. However it probably started back in 2012 ish. Was playing soccer and thought I had terrible shin splints, could barely walk. One evening after practice went to emergency couldn't handle the pain anymore. My WBC was super high, so the rest of the blood worked that followed. Placed on intervenous antibiotics every 6 hours. All the test came back I had no infection anywhere. So they began to explore, why. I have gastroscopy (GERDS), colonoscopy (IBS), more and more blood work, still couldn't find anything, inflammation and my platelets started to climb as well, so off I went to a hemotologist, more blood work (probably anemic at this point- lol). He diagnosed me with essential thrombocythemia (chronic form of blood cancer). My migraines, fatigue, pain, etc... getting worse. He indicated he was 95% sure this is what I have, but can't confirm 100% without a bone marrow biopsy. So had one of those. Nope didn't have ET. At this point living everyday with a migraine, fatigue, Concentration issues, pain (feels like bone pain). Things I could have done with ease now are exhausting me and increasing my pain. Weight was steadily increasing. Close to 50 lbs since 2014. Hematologist refered me to a rheumatologist and neurologist. Rheumatologist told me I had fibromyalgia and working with my gp, to find meds that helped. First off amitriptyline - amazing helped with sleep, migraines and eventually the pain. I had more energy, but I started to faint. So then on to cymbalta - did not work, lyrica - gave me insomnia. All the while getting worse and worse. Trying notriptyline that seems to be helping with the sleep. Not the pain or migraines. My job does not provide me routine or consistency, travel ALOT!! And things that I did with easy before exhaust me. So frustrated and don't know what to do career wise. I fake that I am ok around a lot people. Nobody really understands how bad it is. Been taking tramadol just to help with some of the pain tyincoom or do laundry for my family. It has taken a while for me to accept this. My symptoms all seem to corolate, just didn't believe it for a while because my blood is still messed up.

 

[moe1959]

Your in a good place. Encouragement was/is sooooo important to me, my family did not understand, still dont. But.....I have been through the gauntlent of tests and stress, and never ending Dr. Appoitments. After 3 yrs I think my Husband beleaves me. Ive had him listen to a u tube medical symptoms about fibromyalgia. One of the more prominate for me is sensativity to noise and smell. Ive been laughed at for yrs because my nose is that of a houndog. Now some of my fam perk up and pay attention should I smell burning rubber, a skunk, animal secreations, polite way to put it. Oh and certian noise drives me nutts, exspecially if its repetitive, I have to retreat to a quite place in my home.
There really should be a taylored Job for me, it has to be out there somewhere, maybe a perfume smeller, or Coffee.
Hang in there and take care of YOURSELF. R

 

[Carmen]

Thank you for the words of encouragement. I am super sensitive to sounds, smells and lights. I can walk past someone in the hall and tell you what kind of gum they are chewing. My boyfriend believes me, but doesn't truly understand how bad it is. 2 of my friends really listen and try to understand. The one has really noticed the fibro fog at work, but is quick to tell me even in severe fibro fog, I am smarter then most. Which helps make me feel better. Just hard for me, to feel the decrease. I have always been very career driven and able to manage fast paced work environment. I intruct courses and some days really hard for me to people and pretend I feel great for 9 hours.

 

[diamond]

Welcome Carmen....you can make good friends here and we will help in any way we can with advice or tales of our experiences...please join in as we understand what most friends and family dont. I too an super sensitive to smells noise and light....haha i can smell my son using mouthwash even if i am downstairs 3 rooms away and if my partner approaches the back door with something out of the shed i react to the smell of 'shed' and my throat starts to swell instantly....they laugh and think i'm weird!

 

[Carmen]

Thank you for the welcome.

 

[southernveg]

Hi, Carmen, I'm new, too, and also struggling. I'm sending you positive energy from here! My husband kind of gets it but I guess when you look okay on the outside, it's not so easy to know what's going on. Hopefully we can get some help here!