Fibromuscular dysplasia (FMD): Want to connect

That is exactly my plight. I have told the innumerable pain docs over the years, "Look, the principle of cause and effect...I am in severe, chronic pain. That is the effect. There is a cause. Now, it's your job to find the cause.". Each doc just wants to put a band aid on the pain with injections, PT, and who knows what else. So, I say, "How about reaching out to the medical community? Surely someone has had experience with this". Oh, no, they say. I am the expert. I don't need any other doc chiming in. Bah, HUMBUG!

Welcome to Mayo Clinic Connect. Looks like you have already received comments on your post. Folks on this site are great to share their experiences. May you soon find answers.

I’m at my wits end with this… I have literally been checked for cardiac issues, kidney, stomach, neurological… the vascular doctor was a joke. But I will keep moving forward because this can’t be normal to live with.

Hello and welcome. I’m new myself just this week and have received replies to my questions almost immediately.
Your symptoms are being caused by something. Pain is a call from our body that something’s not right. If your doctor isn’t addressing these symptoms and getting to the underlying causes I’d seek another opinion. Sometimes we hesitate with our bodies but that hesitation could lead to other issues.

Hi, I’m QueenKEB
I believe my Doctor diagnosed me with FMD by way of CTA.
But she haven’t really heard of it!
So she is putting me on a statin and referring me to Vascular.
I am scared and symptoms are swooshing in ear and pain in neck laterally. Lots of aucilar migraines with blurred vision.
Does this sound like something anyone has had?

I hear you ! It’s frustrating to have something rare that is not being backed with funds for research to figure it out. It seems it’s a watch and see disease with a lot of unknowns. Thanks for responding as somehow it helps to feel less alone with this rare disease. Blessings to you on your search for answers and best approaches to your health journey 🙂

I just was diagnosed with FMD of renal artery after a CT for something else. Awaiting results of additional CT if head and neck. I live in Rochester and have a consult in Vascular Medicine in October. No symptoms other than my lifetime ones of fatigue, anxiety, tinnitus. I’ve researched everything I can online. Scary as it’s considered rare. It helps to talk with people who have it. Thanks for sharing h.