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Eternal hot flashes (adrenal insufficiency): What helps?
Autoimmune Diseases | Last Active: Aug 24, 2023 | Replies (17)Comment receiving replies
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.
Replies to "Christine, I have never heard everything I feel put into words so perfectly as you just..."
@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?
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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!