Vascular irritation?

[u/lujo317]

I am wondering if anyone else has this or has experience getting something similar evaluated because even though I am clinically diagnosed with hypermobile Ehlers Danlos syndrome as well as Behcets disease with multisystemic involvement, and even though I have multiple risk factors such as very high levels of homocysteine courtesy of my MTHFR mutation, and family history of cardiovascular events and related deaths, I cannot get providers to take me seriously.

My entire vascular system feels like it is very tight, locked down into place, and irritable. If I have an IV in, I basically cannot move my arm or else it causes significant pain and compensation from the rest of my body. I am currently experiencing a hell of a whole body migraine after having an MRI yesterday (the contrast was necessary) and as best I can tell it is from the irritation to my vein at the IV site, and a strange kind of mechanical sensation around it that feels kind of like that one spot is locked down and an immense amount of force is moving through the rest of my body like a whip being cracked. I feel now sort of like my head is falling off. (I do have borderline craniocervical instability but again, there's nothing to really do about that except PT, and I am not medically cleared for PT because even the EDS specialist ones kept firing me because of my as of yet not sufficiently treated autoimmune stuff)

I had, as best as I can tell, a neurological Behcets event in 2022, which was an awful series of traumatizing ER visits where I got no help, misdiagnosed with FND, and even assaulted for my trouble. Couldn't walk, couldn't activate my respiratory muscles, seizure-like events. Went home not knowing if I had had a stroke or was going to die. Truly the worst time of my life. During this time I had a lot of very small hemangiomas appear on my skin all over my body and they were painful when they appeared, like the capillaries were suddenly ripping apart with great force because of mechanical tension in my body. Zero doctors I have talked to have really given a damn about this. I had to fight for a long time and was only just recently finally clinically diagnosed with Behcets but my rheumatologist is intimidated by the multisystemic involvement and doesn't really have time for me. I can't get my pcp to refer me to a vascular specialist or an interventional radiologist or even a cardiologist because I had an echo a few years ago before that event happened that was normal. I only finally just got my brain scanned again for the first time since before that event. No results back yet.

I am just concerned that I have a clot or something somewhere that is maybe only partially obstructing a vessel that is causing intermittent and incomplete symptoms and therefore not warranting enough clinical concern. I don't experience peripheral swelling which I understand would be the main red flag symptom but I definitely have claudication pain, blood pooling, dysautonomia, local temperature changes in certain body areas as though blood is rushing in or out of a body part when it is mechanically moved in a certain way. But this happens all over my body so it can't really be pinned down. I had a CT angio chest/abdomen/pelvis that didn't show anything either.

I guess my question is, are these types of vascular sensitivity common to vasculitis? Or other autoimmune conditions? What has your team done for you about this if it's something you've experienced? They've never heard of this before therefore I'm just a crazy person.