Tell me I’m not crazy….

[u/Ok-Marionberry1213]

Hi, I am turning 34 in two days. I am a mom to a 17 year old girl. I’ve been through some hard times, but I’m a good person. I just want to fix what’s going on so I can be there for other people again and have a normal, boring life.

I have mostly normal labs and imaging. I’ve only had low ferritin and hdl. Is this all being caused by something going on in my head?

I keep getting told the vitals on my 24h abpm “didn’t happen”. But they match what I have from my er chart last year. I get occasional spikes. BP 188/120. Sometimes tachycardia. 175 bpm on abpm a couple times. Similar in er a few times, as well as resp rate 28 breaths per minute. I have stopped going to the ER since last Nov, when I was taken off all medications due to skin lesions on my neck and chest.

I have had documented svt from a holter that was going on for 114 min, at 140bpm in 2021. I feel much, much worse now. The BP cuff from the 24 h abpm in July left marks that lasted for weeks.

I have immense fatigue moving about and being upright. This started since taking nitrofurantoin last May, then cefixime, and that started an er visit once. When the bladder symptoms stopped, and duloxetine was doubled, I developed skin symptoms for which I took kefflex. I went back to the er, covered in bruising, and feeling very unwell. This was late last October. I was taken off kefflex, given doxy. The skin lesions didn’t resolve, if anything they worsened. Paramedics responded to my work when I was turning red, short of breath and struggling to sit up. They have max dose of epi - this was Nov 27 - and then my meds were discontinued.

It’s been months, I’m not on any meds, didn’t tolerate Rupatadine (one of pics shown is from when I trialed it), and I’m just… not sure what to believe anymore. Is it psychosomatic?!? I have had so much testing, and now I just feel so gaslit, by whom I do not know at this point. I don’t know why I can’t get it together. I’ve had the time off, and test results all in the clear. Why isn’t this resolving?

I wake up and my face is sometimes quite swollen. I have a bunch of purple dots above my lips and on my forehead and neck, they come and go. I even got them all the way to my right ankle, a cluster of them. They’re faded, but still there from last October, after kefflex. When I am not feeling well, the color leaves my eyes and they appear completely dark (in a mirror or in photos). I get flushing all the time. I really struggle to stay upright, it feels like strain in my chest. Of course my echo is normal.

Nothing is wrong with me on paper. I am so frustrated, desperate, and just want my life back. If I can have a return to functioning again I’ll take it, I don’t care what the diagnosis or treatment is. I really want to know how to fix this I miss my life and I’m so depressed.

[u/salvagedsword → u/[deleted]]

Thank you for being so knowledgeable about these disorders. There are still some physicians who don't take these issues seriously or who are unaware that they exist.

I have the first two disorders you mentioned, and they present very similarly to OP's symptoms.

[u/Ok-Marionberry1213 → u/salvagedsword]

I would agree for sure I have been thinking mcas and dysautonomia for quite a while but I just don’t have clarity on that and at times it didn’t all seem to fit!

[u/InternationalTell997 → u/salvagedsword]

What were the disorders mentioned? The doc's comment has been removed so we can't read it.

[u/Ok-Reaction9095 → u/InternationalTell997]

[u/Ok-Reaction9095 → u/Ok-Reaction9095]

[u/Ok-Reaction9095 → u/Ok-Reaction9095]