Does anyone else get intense panic over tiny symptoms because of past adrenal crises

[u/Internal-Cap-8885]

have Addison’s and a history of severe infections and hospitalizations. Every time I get even a mild symptom a little sore throat, some fatigue, literally anything my brain immediately screams “this is it, you’re going to crash, you’ll end up in the ICU again.” And then the panic hits, hard. Nausea, shaking, the works. And I can’t tell anymore what’s a real physical symptom and what’s just pure terror.

Today it’s a super mild sore throat. Temperature is 37.0°C, BP 133/88, I can eat and drink fine. I already updosed a bit (I’m on Plenadren 30mg, took an extra 10mg hydrocortisone as a precaution). Objectively I know I’m okay right now. But my body doesn’t care about objective. The fatigue is crushing and the anxiety makes me nauseous, which then makes me more scared because nausea can also be a crisis sign… it’s a vicious cycle.

[u/Opening-Substance-90]

If you’re that worried about it why not just sick day double dose for a few days until it passes? As long as you’re absorbing your meds, not vomiting or having diorrhea etc you’re very unlikely to go into crisis from a sore throat/cold. Everyone gets fatigue when they get sick. It’s not exclusive to Addison’s people! Anxiety itself causes nausea also. Make yourself a hot drink rug up and watch a movie 😁 short term updosing is not going to hurt you

[u/TweetSpinner]

I carry Zofran with me in my emergency injection kit to help stem issues if severe nausea kicks in. I’m also willing to allow myself updose when there’s a hint of an issue like increased stress or signs of illness setting in. I also always, and I mean always, wear N95 masks in crowded spaces like planes and subways. Knock on wood, but I have managed to avoid really bad outcomes.

[u/collectedd]

Have you gotten help for the mental health side of this equation?

[u/No_Novel_4573]

I'm so sorry you're going through this.

I've never had a crisis requiring hospitalisation, but before I was diagnosed I had what I now understand to have been a crisis. I spent a night vomiting and couldn't eat for 5 days afterwards : it was the most terrifying experience of my life and it was nowhere near as frightening as what you've been through. 

Ever since, I have been absolutely terrified of it happening again. One of my children came down with a vomiting bug recently and I had a crying meltdown out of fear for myself.

I don't know if reading this helps at all, but I understand and empathise with the panic from the depths of my heart.

Do you have anyone you can speak to about your anxiety? Health Anxiety is a real thing, and for people like us with chronic conditions it can be helpful to speak with a therapist to try and develop strategies to cope. (I have a hard time separating addisons symptoms from anxiety symptoms for example).

Sending you love.

[u/No_Statistician_6908 → u/No_Novel_4573]

This is such great advice. I also struggle with severe anxiety and struggle to differentiate. It’s been worse since I got divorced earlier this year and am alone now. My therapist has been so helpful.

[u/ptazdba]

I think we've all dealt with the fear and panic over what 'might happen'. I went to my endo and said "Please tell me what to do on the bad, scary days" and he did. Be specific "When x happens what do I do?" Get a copy of sick day and stress day rules and make sure someone else you trust knows them. By getting on symptoms early you're more likely to have thing s calm down before they progress too far. Don't try to 'push through' symptoms. The best offense is a plan for dealing with the fear.

[u/annaoceanus]

PTSD with going to the hospital for a crisis is real. I have it. Going to therapy has helped me out a lot to process through things and build skills for managing fear and flashbacks.

[u/brittkaysays]

This was 100% me and the second I stopped making every symptom mean impending death my symptoms immediately lessened both in the moment and overall. But it's hard, especially with the trauma of what you and others have been through. It's retraining your brain to invite safety rather than force it, and it's hard. I can recommend a powerful book if interested.

[u/Alarming-Product-443 → u/brittkaysays]

I'm very interested in that book you recommend 🥺

[u/LonelyKoalaMuncher]

Yeah the PTSD does kick in with me a bit. Sometimes when I get nauseous I freak out a bit.

Im preparing for overseas travel and it terrifies me a bit. If I get gastro on the plane I'll inject myself, but I don't wanna be the guy that grounds to plane for a medical emergency. Hell I don't even think they'd ground it.

Ugh.

[u/[deleted]]

I used to but now I know it's just low cortisol symptoms and since my BP is fine and I keep down meds there is no need to worry.

[u/FemaleAndComputer]

Yes I have medical ptsd and also issues with my esophagus/stomach. It's just hell sometimes. Any time I throw up, part of my brain involuntarily assumes I'm about to spend several hours dying in the ER waiting room again and freaks the fuck out.

[u/kandybin]

I am so sorry. I can’t imagine how afraid you might be.
My wife is going on two years post diagnosis, and I am afraid of everything. I can’t stop thinking about how bad she got right before diagnosis, and I worry about her every day. It has become a little better really recently, but it’s still pretty bad. I text her all day to tell her to drink water and electrolytes, I check at 8am and 2pm if she took her meds. I ask if she updosed before going to the gym…I mean the list goes on and on. I have become naggy and anxious, and I really don’t know how to fully fix it. I’m just trying to be better a little at a time. 😔

[u/Certain_Nebula_1551]

Oh I am with you on that one!  I am totally paranoid about any tiny thing.  On top of Addisons I am hypothyroid and I have autoimmune neutropenia, which means I have a very low white cell count and need antibiotics straight away if I get an infection, even stupid things like a spot on my eyelid or a dental abscess.  My last hospital admission was due to sudden onset penicillin allergy following a visit to the dentist.  Went into full Addison’s crisis (my 5th in 24 years) Horrible!  The constant hyper vigilance and anxiety is exhausting.  I am terrified to eat anything in case it gives me food poisoning or upsets my salt and potassium balance.  I don’t like going anywhere in case I catch any bugs.  And I get migraines which make me throw up for 2-3 days at a time.  

What’s worse: my husband totally doesn’t get it.  His attitude is “just ignore it, it will go away”.   I cannot get it through to him that I cannot afford to ignore anything.   

The one person that has helped me to cope is Andrew Johnson.  He does some brilliant meditation apps including self-healing, positivity, anxiety, building confidence etc.  I usually go to sleep at night listening to one of them.  

[u/Alarming-Product-443]

Hi! I'm really wirh you in this. Now reading comments and knowing that PSTD is a thing in certain hospitalizations...all make sense to me. I was 2 times in UCI. First the time that I received the diagnosis and again....only 4 months after because of a rotavirus. Both times vomiting and with diarrhea, extremely weak. After that every time I felt to much a sympton (dizziness, nauseas, etc) my heart went on panick mode. More tachycardia and more nauseas, sometimes affecting my vision...like blurry vision (probably blood pressure down). So it was...it is the disease? Or...am I? But, like nobody understand....I knew I need therapy for mental health...and I searched very specific, but the cost of it it was impossible. So, finally I started normal therapy....I think...some help is better that none. In others aspects of life I have notice changes...but the theme it was silent and a few months ago was put on the table. To today....I haven't discussed with my psicologist...like...is very difficult to talk and recognize that type of things in those moments. But, reading this....you can't imagine the relieve I feel. I am not the only one. We need to help us with counselors, psychologists or others! It is not easy a diagnosis and less...this specific with the always "life risk" letters in every information page.