← Return to Tired of the gaslighting


Tired of the gaslighting

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

Comment receiving replies

Hey there, @cwitton1. I'm with you and believe 100% wholeheartedly that your pain exists. I believe what you feel and how entirely frustrated you are with your circumstances and the cards you've been dealt. And, I believe you are exhausted, drained and in physical and emotional distress as a whole. What I don't believe however is that you are a quitter. Yes, I believe you want to quit, I believe you feel hopeless and at the end of your rope for the umpteenth thousandth time, BUT I believe that you've got moxie and the tenacity to look deeper into how might you be your best self-advocate.

You say, "No more visits. No more medications." Pulling back, honestly, may not be such a bad thing, providing certain meds and visits aren't medically necessary. I understand and felt the same way after realizing my reliance on doctors to intervene and find ways of helping my chronic pain and all that spiraled from it was just making symptoms worse. Once I began the healing process of grief and loss, and worked on acceptance of chronic pain conditions, I was able to see that it was more my responsibility of learning lifestyle changes which included stress-management, physical conditioning, behavioral and emotional therapies and how to be an active participant in my own pain-management plan. I want hope for you because I remember how bad it sucked to not feel hopeful.

What are your thoughts? Am I off the mark? Do you still feel there are stones left unturned medically, as in acute issues that are being overlooked, or chronic issues that you believe have been misdiagnosed? What do you think still needs to be done to improve your quality of life?

The sad reality is that even the best doctors in the world may not be able to reinvent the wheel and help us any more than their specialty lane allows. Process of elimination, try this med, that procedure or treatment. I agree with some of your points and held my own resentment and disappointment for a while based on failed treatments and ineffective meds, even for Mayo denying me to be evaluated. Rejection is disheartening and lonely. Some doctors lack of bedside manor and don't go the extra mile for their patients, but there are those that do. Here's one doc that I think is exceptional - Mayo's Dr. Sletten. His video on chronic pain may be worth a watch. I'm hoping that you find some validation.

Dr. Christopher Sletten - Central Sensitization Syndrome -

Finding Connect to vent your innermost frustrations and get it off your chest, hopefully proved therapeutic. We all need to do that once in a while. I read that you are only 50, work and have a hubby and kids! All wonderful reasons to keep hope alive and not give up despite your obstacles. Connect is here to support, encourage, share and problem-solve together. Hoping tomorrow is a better day for you. Will you get back to me with thoughts on the video or what you see your next steps to be?

Jump to this post

Replies to "Hey there, @cwitton1. I'm with you and believe 100% wholeheartedly that your pain exists. I believe..."

I am thinking of switching to a functional medicine doctor and diving deep into a diet to relieve inflammation and lose weight. I'm also thinking of HRT to help with my CV health and energy levels.

Will it solve all my problems? No. But I, too, am sick of the abuse.

It does not matter how many labs are significantly off. It does not matter how many diagnosed symptoms you accumulate. Doctors do not listen.

Heck, I have my whole genome sequenced and HLA-B is mess, with many feameshift, stop-gained, insertion, & deletion variants, including several known pathological variants for Behcet's. I have a 5.1 cm ascending aortic aneurysm, diagnosed dry eye, mouth lesions (having biopsy this year), joint pain, ANA repeatedly 1:1280, etc. etc.

I've been through 4 rheumatologists and they were all lazy and condescending.

My aneurysm doc is sending me to a rheumatologist who specializes in vasculitis, appt. is in April. That's my last hurrah with rheumatology. That is a specialty that really wants a diagnosis handed to them on a silver platter.