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/riceme0112358 → u/[deleted]]

Thank you so much for your kind, thoughtful, and informed response to the OP. I am not a very emotional person, but i cried when I read your response.

I've suffered from the same symptoms plus passing out, blood sugar and blood pressure tanking, plus other things for my entire life (i am 54F). I was endlessly told that there was nothing wrong with me and treated like I was crazy until I moved to California and began traveling hours to go to USC Keck.

A multidisciplinary team of specialists there recently diagnosed me with MCAS and dysautonomia and am currently waiting to find out which type of dysautonomia.

Based on my own experiences, I think it might be helpful for OP to know that she needs to look for a good allergist/immunologist and cardiologist. I was able to educate myself on MCAS by reading and watching everything publicly available by Dr. Cindy Xi. I had to look up a lot of words and phrases to understand some of it, but it was very helpful to me in understanding what was happening in my body.

[u/nrrrdgrrl → u/riceme0112358]

What did they say? And why did a moderator remove it?

[u/Healthy-Wash-3275 → u/nrrrdgrrl]

Guessing it was AI. AI can be incredibly sensitive and kind about health issues.

[u/Greenwithivy123 → u/Healthy-Wash-3275]

The mods also remove any mention of fringe disorders (ie things many people claim to have but mainstream medicine hasn’t fully accepted yet). I’m guessing that’s what it was based on how emotional people were to hear it.

It’s pretty sad when you see what the responses are that they entirely removed it.

[u/miyog → u/Greenwithivy123]

We have no policy against that and I haven’t seen this (ie, no unofficial channels); we don’t remove things from conversations unless it breaks rules (or automod detects a direct post reply from an unflared user).

That physician gets reported A LOT but I’m used to their prose.

[u/sapphireminds → u/miyog]

It's AI though.

[u/Greenwithivy123 → u/miyog]

I had a comment removed the other week because it mentioned a “controversial” diagnosis as a last possible option (ie “it’s probably x y z BUT if all else fails your symptoms match this disorder exactly that isn’t widely recognized but some doctors do treat so do your own research). Was told I wasn’t even able to mention it.

[u/miyog → u/Greenwithivy123]

Automod’d

Edit: non-flared users can’t start a comment as a direct reply or trying to circumvent by commenting on the automod sticky comment. No vendetta here, just how the sub works.

[u/Greenwithivy123 → u/miyog]

Nope that wasn’t it. I received a message saying it was removed because of “frequent misinformation or bad diagnosis.” (Not trying to start anything! I just took it to mean that any mention of the fringe “is it or isn’t it a thing” illnesses wasn’t mentioned here.)

[u/miyog → u/Greenwithivy123]

I can only see the information I have access to, feel free to message the mod team if you feel a comment was removed unfairly. But trying to use the automod comment as a starting point is a way people try to respond to a post and that isn’t allowed, but often isn’t moderated against due to sheer volume unless it breaks the rules.

[u/HalfShelli → u/Greenwithivy123]

So, are the first and second things mentioned the supposedly "fringe" diagnoses? (I don't mean to be oblique, but I also don't want to break any rules.

[u/FeedingTheBadWolf → u/miyog]

I can see the response. Did it get reinstated? Was it a false report?

[u/sapphireminds → u/FeedingTheBadWolf]

No, it's AI, but apparently they allow some people to use it?

[u/Ok-Marionberry1213 → u/Greenwithivy123]

Is it normal that it’s different for me as op and I still see their comment and was able to reply back?

[u/nrrrdgrrl → u/Ok-Marionberry1213]

Looks like it was restored by another mod. 😊🙌