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Tired of the gaslighting

Autoimmune Diseases | Last Active: Apr 30 10:33pm | Replies (189)

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@johnbishop

Welcome @cwitton1, You are not alone when it comes to your feelings. I have been fortunate that most of my primary care doctors have listened to me. I have several autoimmune conditions but I don't have the chronic pain that you experience. What gives me hope is a new breed of doctors that are listening to their patients. I have experienced this both in my local Mayo family health clinic and when referred to specialists at Rochester Mayo Clinic when it's out of their expertise. My primary care docs change pretty much every two years at the local health clinic and I have had a few that were not very good with their listening skills. One thing that has helped me immensely is a new website started by Dr. Victor Montori and his associates. The website gave me some helpful suggestions on planning my conversation with the doctors which I think has improved my communications with my doctors, as well as helping them listen a little better.

The Patient Revolution: https://www.patientrevolution.org/tools

What is great about Connect is being able to share experiences and learn from others what has helped them. You might find the Autoimmune Diseases Support Group helpful. Here's a link to the list of discussions: https://connect.mayoclinic.org/group/autoimmune-diseases/.

Do you mind sharing what condition or symptoms cause you the most pain?

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Replies to "Welcome @cwitton1, You are not alone when it comes to your feelings. I have been fortunate..."

Hey John. Thanks for the welcome. I’ve been to Mayo three separate times and each time they’ve let me down. You get to a point when you have to walk away to save your mental health. I have a myriad of painful conditions- from lupus to migraines to arthritis to Sjogrens. I don’t like to include fibromyalgia in there because there are still people who believe fibromyalgia is not real and when you mention it you can see the eye rolls and disassociation. I have spinal stenosis, multiple bulging discs, scoliosis, trochanteric bursitis, sciatica. I could go on but you get the gist. I am a member of the chronic pain and autoimmune discussions. I just thought this vent would be more appropriate here since it encompasses a lot of symptoms.