#dysautonimia

[100-yardstare]

Sucky thing about being chronically ill is my appetite is all over the place. Like, today I could hardly eat thanksgiving dinner and overall I am turned off by the traditional menu.

[thebibliosphere]

I know you aren’t a doctor, but is there anything else that, to your knowledge, tends to get diagnosed by alt-doctors as CIRS?

So this is probably going to piss some people off, but I genuinely believe that CIRS (which as I've talked about before as being... questionable as a diagnosis) is more likely to be a mast cell disorder.

The science and reasoning around CIRS and the obsession with "toxins" and mold is just too vague, and I say that as someone who was at one point diagnosed as CIRS and went through the whole process only to be met with HEAVY resistance from my alt doctors when I wanted to know WHY something was "toxic" and why I wasn't improving despite doing what they recommended.

They couldn't explain it. Thing Just Bad. And if I wasn't improving, it was my fault for not removing enough "toxins" from my environment.

Well, turns out some of those things weren't universally "toxic," I just have an immune disorder (MCAS) that makes them toxic to me, where my body thinks harmless things are a threat-- including my own hormonal cycle!

There was mold killing me, though, that was indeed making my mast cells unstable and sending me into anaphylaxis on a regular basis and causing all kinds of neurological problems. Mast cell stabilizers and removing the mold from my home did more good for me than any of the CIRS treatments.

(Important note: not everyone with MCAS experiences anaphylaxis as a symptom, and it is not a requisite of diagnosis.)

MCAS is not the only form of mast cell dysfunction either. There's also mastocytosis and Hereditary Alpha tryptasemia. You can read more about them at The Mast Cell Disease Society. (There are also different types of MCAS for anyone interested.)

Other things I've seen alt-doctors misdiagnose as CIRS over the years include:

Dysautonimia (high rates of comorbidity with MCAS)

Fibromyalgia (some recent research suggests that mast cells play a role in the onset of fibromyalgia)

ME/CFS (chronic fatigue syndrome)

ADHD

Autism

Celiac Disease

Multiple Chemical Sensitivity Disorder (which I also think is mast cell related, tbh.)

Pernicious Anemia (the other thing that was killing, because my untreated MCAS was stopping me from absorbing nutrients from my food)

Chronic migraines.

SIBO (which can lead to secondary MCAS)

Various different mood disorders

Interstitial Cystitis (also a common symptom of various mast cell disorders)

And I'm sure a couple more I'm just forgetting right now.

Basically, there are a lot of things CIRS could actually turn out to be. But my money is on some form of mast cell fuckery.

[2femme]

The dysautonomia is dysautonimia-ing

[thebookewyrme]

Got a wild hair to do some reading on POTS because it’s getting worse, even with the new med (Diltiazem). So read some stuff on John’s Hopkins website, but nothing new there. So hopped over to Dysautonimia International and started looking there. And it looks like the pain in my hands could be from THAT, instead of the beginning of carpal tunnel! That would explain why it’s both hands, worse in my left despite me being right handed, and has been going on for years without getting worse or better.

Anyway. I wish my doctors would talk to me more about it. I have one dr I haven’t talked to about it yet, and I’m going to see a orthopedist soon about the hand pain so I’ll mention it to them. I really hate having a poorly understood chronic condition though. It’s bullshit.

[take-one-last-breathxx]

And like a Phoenix, she rises from the ashes.

I feel weird speaking about what I’ve been through recently, because our world is hurting right now in so many ways and a lot of people are hurting as well. And my heart goes out to you. It truly does. I’m here to tell you there’s light through darkness.

I just got out of a two year toxic relationship. There were so many red flags from the beginning, but I was so blinded and naive, I didn’t see them. My relationship with this man was hectic from the beginning. It was emotionally abusive. He was very manipulative and narcissistic. And being the person I am, I saw his broken parts and I chose to love them. I gave him a chance. I tried to balance the relationship out for so long, but I ended up filling an empty cup into his, and having nothing for myself. He wanted every ounce of my attention. Whenever I wanted to go out with my friends or family, it became a problem or a huge fight. He constantly thought my family was turning me against him. This relationship took a toll on my health as well. I was running around so much I became very drained. Every time I had a flare up from my Dysautonimia or Gastroparesis I was told it was, “All in my head.” That I “bring it on myself.” There was one time where I fainted in his hallway in the middle of the night and he told me to be quiet because I called out for him, that I was going to wake everyone up. He left me laying there because I didn’t get up quick enough, in fear of fainting again. When I would put a little bit of makeup on when we would go somewhere I was told it made me look like a “clown.” I stopped dressing up. I stopped doing my hair. I stopped wearing makeup. I stopped caring about everything. All I did was care about him and put him first, which was my first mistake. Now, I’m not saying he’s a terrible person, or evil. Everyone has trauma. Everyone has things they need to get through. Our last encounter got a little physical, which scared me a lot. No, he didn’t hit me. He had come over a couple weeks ago and asked if I could spend the night. He wanted to spend “one last night with me,” because I didn’t want to see him anymore. After about 45 minutes of telling him I just wanted to go inside my house over and over, he grabbed my arm and walked me to the passenger door to get it. I held onto the door and said no. He got pissed off and drove away. That is NOT LOVE. If you truly love someone, you RESPECT them. And I truly did see him on a deeper level most people didn’t. He is very misunderstood in a lot of aspects. BUT, that is no excuse to stick around in toxicity. We all have our own toxic traits. Don’t let love blind you from the truth. If you are going through something like this, I’m so sorry. But there is light at the end of the tunnel. Choose you. Love YOU.

[thehugwizard]

Hi, did you know that October was dysautonimia awareness month. It is one of the more unknown cronic illnesses and some doctors don't even belive in it, leading to people being told it's in their heads.

It takes up to five years for some of us to get diagnosed and even then there is little research and medication for it. I myself have POTS (Postral orthastatic tactocardia syndrome) and am always glad when people help get the word out. I was wondering if you could help?

Sure!!!!

[tinypaperbutterflies]

Author Introduction

Hello my friends, it’s anna (@evelizard) I made this account to have collect and publish all my poetry and writing in one place.

I’m 18 years old, currently a senior in high school. I’ve been writing more or less for ten years. Nowadays I mostly write essays, both personal and for school as well as free form poetry. I have a few longer WIPs but they probably will never see the light of day.

I’ve published a lot of my poems elsewhere, so if you recognize them that’s probably why (though I doubt you will). I went by evelizard and madamecareless on Wattpad and Books Amino and I believe many of my works are still there but I haven’t used either for a long time.

A little more about me: I’m a Sagittarius, INTP, and a type 8. I’m half black (so my writing has with POC tags), and chronically ill (dysautonimia). I also happen to be a straight A student which doesn’t mean much but does make me very happy.

I tag most common triggers.

[aslsuzyq]

Ready, set, go!! I’m here for a nuclear medicine Lexi-scan #crps #womenshearthealth #chf #mvp #tvp #pvp #iv #Dysautonimia #POTS #spoontheory #heart #eds 4 #ra #gastroparesisis #chiari #pacemakerclub #pacemakerpatient #lexiscan #hearttests #hoh https://www.instagram.com/p/Bqtb2u6nTq5i0d8eTNbmdtmViqFykLRZkgkMo00/?utm_source=ig_tumblr_share&igshid=1wahumxjlth9

[raseforcrps]

Ready, set, go!! I’m here for a nuclear medicine Lexi-scan #crps #womenshearthealth #chf #mvp #tvp #pvp #iv #Dysautonimia #POTS #spoontheory #heart #pacemakerclub #pacemakerpatient #lexiscan #hearttests https://www.instagram.com/p/BqsWS45HB81/?utm_source=ig_tumblr_share&igshid=1fdsgkmabysuv

[chronicillnessproblems]

My body today:

Congrats! You have reached a new high score in Tachycardia! 

You scored a 180 bpm after simply walking up some stairs- well done! 

[aslsuzyq]

Ready, set, go!! I’m here for a nuclear medicine Lexi-scan #crps #womenshearthealth #chf #mvp #tvp #pvp #iv #Dysautonimia #POTS #spoontheory #heart #eds 4 #ra #gastroparesisis #chiari #pacemakerclub #pacemakerpatient #lexiscan #hearttests #hoh https://www.instagram.com/p/BqsWdybndif/?utm_source=ig_tumblr_share&igshid=184f7h8l1b0cv

[aslsuzyq]

These are my #invisibleillnesses and more #chronicpainwarrior #rsd #crps #gastroparesis #eds4 #ehlersdanlossyndrome type4 #rawarrior #rheumatoidarthritiswarrior #dysautonimia #potswarrior #pots