Eternal hot flashes (adrenal insufficiency): What helps?

That has been my experience. Peoole get “tired” of your illness. If it doesn’t run its course in 14 days like a cold whether they believe you or not they discount you as a complainer and write you off. Chronic illness is a debilitating disease of the psyche too.

Your observation on human behavior is so true. If there is a crisis of perhaps someone needing surgery... that is a 'short term' crisis; friends rally very well to help during these crisis, knowing (at least expecting) Life will soon return to "normal".
I reflect on my own response when I was "a normal"; did I respond and assist in the way that showed understanding to someone with longterm disabilities or chronic demands? I was a nurse, so did know 'how', but did I or could I have grasped the whole impact of how chronic disease utterly and completely alters, changes, stands life on its ear?... No!...
......how can they?
Of course, we lean on those who, we may think, are with us in life's struggles, but that can turn to dust, in tragic ways, and at a time when we need support the most. This is the Downside' of human nature. If we, ourselves could walk away from this journey, wouldn't we? 'Others' have the option !
It is our job to carefully consider who we 'tell all ' to. And, to re-think our expectations of others.
This is OUR journey after all.
Now that I am an 'old ewe' I simply do not tell my closest supporters 'all things'. If/when they ask, I respond according to their 'grasp quotient'.... is this a question based on politeness? - then this requires a polite answer. If it is a more private time between friends, then this maybe a time to 'spill'.
But, most people, I have found, are not in the least medical! And therefore have no clue what you may be saying! (I am amazed at how little folks, in general, know of their own bodies!) So answers have to be tailored in ways that they will understand, without overloading!
It is a reality that as illness continues, and then begins to worsen over time, that 'friends' fade. This makes sense.... I do not belong in their world.
The friends - true friends - that will stay the course, who can listen, assist, and at times, give you that needed 'kick in the pants' are few and far between - I can count them on one hand. These are my Gem People- and i am so grateful to have these people in my life ... they choose to be in my life! with all its misery. BUT, they need to be cared for too... and that's our job!
Every question is an opportunity to 'teach', but I must also 'weigh up' against - what do they want/able to hear?' .. and most of all do not over burden them with what is my problem/ journey - both, with the listening and with the physical jobs I need done.
How do you balance that.. well, we need the wisdom of Solomon!
The journey of chronic illness is a personal one. One that belongs only to us... it is me who walks this road Finding the right supports and supporters is vital to our physical and - more importantly - our mental health and well-being, even in the deepest times. 💔
Finding those who truly 'know' and who are able to understand, and still care through it all, is so important..... that's why this 'Connect' is so wonderful. You are talking to folks who do 'know' in the core of our being!
We can supply those vital bits of knowledge with complete understanding of our battle and cheer one another on! Plus, give us up-to-date, solid, reliable medical information that is so foundational to us!
Your comment, " chronic disease is a debilitating disease of the psyche" is so true -- it's vital to keep our 'foundation' intact ! Getting therapy from time to time is a great idea, when we need that help on clarifying our situation - easing the burden. Your medical people should have good referrals to suggest! Face-to-face is the best. I have found group therapy to be so helpful.
Sending you my sincere hope that you will surround yourself with all the love, care and support you
need!

Christine, I have never heard everything I feel put into words so perfectly as you just did. Especially, the "I don't belong in this world" part. I've been on this very unwanted journey since 1994. I'd never been sick, other than gynecological problems and migraines, til then. It all started with fatigue, skin problems and pain. Now, many doctors, therapists, specialists, tests and surgeries later, I'm no further ahead than I was back in 1994. Except, looking and sounding more crazy and seeming like a hypochondriac. I've only been with my"newest" doctor since June, and I'm already getting those "I wish I'd never seen you" vibes from her. I'm so very tired of all of this.

Oh Brenny!
I am so sorry ... I, and I'm sure, most of the folks on this site know exactly what you are feeling and talking about.
IT IS NOT YOU! Its not even the doctors... really... it is simply that a lot of our symptom presentations were not in their medical books, yet!
Thankfully, there is research all the time. I know from my journey, since 1974, there has been so much discovered, new diagnosis, new types of bloodwork, genetic studies, medications, diagnostic tools, treatments... but there is so much that remains unknown. From 1974 until, 2004, they just did not know what was going on with me.... I was given many titles! and yes, all of the nasty, insulting comments from doctors and 'friends' to boot; but .... you know there is something wrong.
There are many suggestions on this site for 'how to live despite it all'. If I lived in the U.S., I would be going to the Mayo Clinic. Don't be afraid to get someone to talk to during these dark days... I did, it was comforting to know that someone would listen and be understanding in this struggle -- no answers, but the support was great! They may even help you 'plot your course' in going forward.
I assume you have a dermatologist or a rheumatologist? Autoimmune problems come in so many disguises. Even with or without a diagnosis, finding the comfort measures that help you are very important.
Yes, we may not 'belong in this world', but we belong in ours!! There are so many of us who will understand this difficult and seemingly endless journey we are on.
We are the "Connect Buddies".
All the best to you Brenny! The fight is real!

@brenny1960 and @thisoldewe This free conference may interest you. I know that it’s help in the US but it’s a webinar so is available everywhere.
https://www.accelevents.com/e/aicommunitysummit2023
Just go on the site and sign up and I’ll virtually see you there!

@brenny1960 I can’t believe you’ve been dealing with all of this since 1994! Sounds like you haven’t found a good doctor yet. Well, try the Genetic and Rare Disease website.
https://rarediseases.info.nih.gov/contact
You should have success. Will you let me know?

Like wise. Thank you so very much.

Ladies, I know this is an old post but I just found you. If you are peri or menopausal please see someone online who takes your insurance. I have never known an endocrinologist nor a traditional gynecologist who knows anything about the symptoms you are describing. I figured this out on my own. There are boutique hormone clinics but they make you pay out of pocket. Go online. I suggest MIDI. You will tell them your symptoms and not only will they explain it, they will get you the meds you need. I am also 2nd Adrenal Insufficient and I don’t have a thyroid. I am now taking progesterone at night to help me sleep. Testosterone cream because I was in the negative. And Estrogen patches. The latter helps with nighttime sweating. I sleep all night usually. This morning however I woke up hot and thirsty. I needed salt. I have homemade electrolyte mix with pink salt (or sea), potassium cloride and lime a little cherry juice and tad of honey. I feel better. I probably need to take thyroid med and then later my first dose of hydrocortisone. Yes steroids can cause thirst but most likely (due to small dose) it’s the aldosterone that is out of whack and you may need salt. Ask yourself if you are craving chips and salsa, popcorn or salty nuts.
I hope y’all see this!

See if you can switch from gabapentin to pregabalin. Also try to take it at night, if you can. Progesterone helps with sleep if you need it.

Taking Estrodiol prescription has saved my life ! Hot flashes are cut in half!

I have been living with chronic pain for 30 years. I have had chronic fatigue for 20 years. I just found out I have Epstein Barr virus ( which is common.) I attended the Mayo Clinic Pain Rehabilitation Clinic. It is a very wonderFul program, but you must commit to it!!!!
It teaches you how to accept that you have a chronic illness and it’s not going away, but you can live with it, with lots of modifications that you have to accept. Not saying to give up hope on your illness but learning how to turn people off that don’t want to accept you. 😃