Is this autoimmune or just fibromyalgia?

Posted by lisamarie27 @lisamarie27, Jul 22 10:11am

I'm HLA-B27 positive ro antibody positive ana positive fluctuating crp level of 11,10,19,6,42,7 I wake up in agony every morning with backache and joint pains i get red bloodshot eyes that feel gritty I get a rash on my hands and arms that scars I have ibs ventricular ectopics hypertension the pains I get feel like I'm being stabbed with a knife through my bones on and off my balance is affected i have brain fog i forget everything my mind goes totally blank i drop things forget things I'm not sure if the drs have it wrong as something feels off

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Becky, Volunteer Mentor | @becsbuddy | Jul 22 3:15pm

@lisamarie27 Welcome to Mayo Clinic Connect! This is an online program that connects those with questions to those who have real-life experience to answer your questions! How long have you experienced this? Have you notified your physicians? Do you have other autoimmune disorders? Now we will wait for members, who have much more experience , to answer you.

gailcha | @gailcha | Jul 23 6:47am

It’s not just fibromyalgia. Doctors tend to use that diagnosis when they don’t know what it is. Been there. Good luck. Gentle hug 🤗

persistentc | @persistentc | Jul 23 6:53am

I am also HLA-B27 positive. My rheumatologist diagnosed me with Axial Spondyloarthritis (also know as ankylosing spondylitis). I have been getting biologics for treatment. Started with Simponi, then switched to Cimzia, and just started Cosentyx. Hope this one will be the one to work! So no, I think you have more than "just fibromyalgia". I was diagnosed with FMS before people even accepted it as a "real" condition. But I have experienced all the symptoms you speak of. Somebody knew enough to test you for HLA-B27, so follow their advice. They probably know what they are doing!

lisamarie27 | @lisamarie27 | Jul 23 8:02am

In reply to @becsbuddy "@lisamarie27 Welcome to Mayo Clinic Connect! This is an online program that connects those with questions..." + (show)

@becsbuddy I started with ibs 4 yrs ago 2 yrs ago my allover joint pains started 18 months ago hypertension started 12 months ago my ventricular ectopics started ive been back and forth to drs and rheumatology rheumatology say fibromyalgia as they can't find inflammation on scans or xrays but did show osteoarthritis my mri of my girdle and si joints showed bursitis in my hip I'm always worse in a morning i also get bloodshot eyes that feel gritty a rash that leaves a scar

joebeth | @joebeth | Sep 11 10:18am

In reply to @becsbuddy "@lisamarie27 Welcome to Mayo Clinic Connect! This is an online program that connects those with questions..." + (show)

@becsbuddy I was told there is a cite to look for canceled appts. Does anyone know where I can look? Thanks

sabrinamischele | @sabrinamischele | Sep 13 8:26am

In reply to @lisamarie27 "@becsbuddy I started with ibs 4 yrs ago 2 yrs ago my allover joint pains started..." + (show)

@lisamarie27 Be sure to have your eyes checked by an ophthalmologist. Not an optometrist. There is a difference. Your gritty eyes sound like you may have uvitis. An eye issue caused by inflammation.

joebeth | @joebeth | Sep 13 9:09am

In reply to @sabrinamischele "@lisamarie27 Be sure to have your eyes checked by an ophthalmologist. Not an optometrist. There is..." + (show)

@sabrinamischele I was dx with fibromyalgia probably ten years or more with it. When pcp could not pinpoint why I hurt so much she ran blood tests for several autoimmune diseases. One that was positive was autoimmune inflammatory disease. I guess this is why I have hurt so bad, all over, for all these years. I hope you find your answers and especially tx for them.

Becky, Volunteer Mentor | @becsbuddy | Sep 14 12:24am

In reply to @sabrinamischele "@lisamarie27 Be sure to have your eyes checked by an ophthalmologist. Not an optometrist. There is..." + (show)

@sabrinamischele Welcome to the support group! I know you’ve been on Mayo Clinic Connect since February, and have just now made yourself known. And that’s lucky for us! You mentioned the 2 eye doctors, so I thought to give definitions for those who would like them.
For those who might not be familiar with the eye doctors:
an ophthalmologist is a physician who specializes in care of the eye and eye diseases.
An optometrist is one who tests and fits people for glasses
You came to the Autoimmune Support group. Do you have a question or problem that you would like help with?

Becky, Volunteer Mentor | @becsbuddy | Sep 14 12:40am

In reply to @joebeth "@becsbuddy I was told there is a cite to look for canceled appts. Does anyone know..." + (show)

@joebeth I haven’t heard of a specific site. I am only aware of cancellation waiting lists at the doctor’s office. I’m sorry, I’m not being much help. Did you need a specific appointment?

joebeth | @joebeth | Sep 14 6:28am

In reply to @becsbuddy "@joebeth I haven’t heard of a specific site. I am only aware of cancellation waiting lists..." + (show)

@becsbuddy no I have an appt but I thought the woman who made it said there was a cite to look at. Guess my hearing was off that day.

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