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Health seems to be deteriorating: CSS? Fibro related?

Chronic Pain | Last Active: Jun 15, 2023 | Replies (34)

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@fightingfibro0505

Left atrial enlargement? Fibromyalgia related?
Hello all! I was diagnosed with Fibromyalgia, Central Sensitization Syndrome, Chronic Fatigue, Chronic Fatigue, and a few other diagnoses similar to these in January 2021 at Mayo Clinic, with addition to a suspected autoimmune disease but none diagnosed at the time. I went to Mayo Clinic for these diagnoses due to being misdiagnosed in my local city with Ankylosing Spondylitis- I had lost nearly 30 pounds and was severely underweight weighing almost 115 pounds (I’m in my mid 20’s).

Over the past 9 months I’ve experienced: double my chronic pain levels from head to toe, hypertension, skin discoloration that looks like livedo reticulitis from the top of my legs to my feet, odd weakening episodes of my right side of my body, additional weight gain, severe migraines, carpal tunnel right hand (now getting it on my left I believe), eye pain, facial pain, right chest pain, SEVERE fatigue, etc.

All of my tests are coming back normal besides this one ECG which shows left atrial enlargement and an ALMOST abnormal sinus tachycardia. My body feels like it’s falling apart. I know I need another trip to Mayo Clinic but I know we can understand how expensive the trips can be. My local doctors point everything back to fibromyalgia but I know there is more to it.

Any suggestions, ideas, or has anyone gone through something similar where I could get an idea of what direction to go in? I’m so stuck with what to do! Thank you in advanced!

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Replies to "Left atrial enlargement? Fibromyalgia related? Hello all! I was diagnosed with Fibromyalgia, Central Sensitization Syndrome, Chronic..."

Can you do a video Zoom with the Mayo doctors?
They have your records and you could call and ask if all the new symptoms can only be treated in person.

Ugh!! Where to begin. I’m sorry you’re going through this so early. Mid twenties is when life starts getting more interesting. If it was me I would be calling the back of the insurance card for a list of local doctors in that field. Even some non local. Did you ask your PCP for a referral to a fresh doctor to just see. How old were you when they gave the diagnosis? If I may ask?