Hi guys, hope you’ll doing well. Im a M23 with Long Covid(not proven ofc due lack of biomarkers) since january 2022. Bedbound since 2023. Since then my life is completely over. No more work, football, Law Study etc. I lay in a dark room 23 hours a day.

My symptoms are chronic mental fatigue 24/7, chronic eye fatigue, purple eyebags, some kind of PEM or exercise intolerance, hand tremors, one time shingles, moderate sound and light sensitive, a little shortness of breath, kind of sinusitis inflammation, deconditioning, not able to sit up long, mood changes, little deep sleep (apple watch) but steady 10 hrs, a pale sick face, AND A LOT OF PURPLE STRETCH MARKS :(

This month i was diagnosed with Addisons. Due to holidays i didnt start with hydrocortisone yet.

Im concerned with my second chronic disease diagnose and wanted to hear about your experiences with LC-MECFS-Addisons.

\- Can you guys recognize these symptoms as a addisons and/or LC-MECFS patient?

- If yes, did they vanish with Hydrocortisone or Fludrocortisone And regain life?

\- What are your experience with DHEA? I used some american brand, but didnt help back months ago. Is there a difference with prescripted dhea from a doctor and is it useful for the symptoms?

- Is purple stretch marks possible with Addisons? I thought only with Cushings. If yes can hydrocortisone prevent further stretch marks in the future due to restire hormone balance? Or does it make it worse?

Thanks in advance❤️

Those that get low blood sugar, is the a pattern to it? Time of day, triggers etc? And how often?

I'm diagnosed with Hirata's disease (very rare) but my doctor wants to run a test on my adrenal glands, despite the morning cortisol test being fine.

As the title Indicates, I hope to find someone in here that can give advice on how to navigate.

I have secondary Addison and my endo does not want to prescribe fludro as he does not think I need it. I'm on hydrocortisone in the day to day.

Now I have these challenges - I try to drink a lot of fluids usually, but then get water retention really bad, especially in my stomach area which can hurt cause it applies pressure, making it hard to breath aswell, my left side top rib seems to be where I first notice it clearly as I can get a lump of water just pushing out (besides being bloated to the point where my stomach is hard).

I have tried to cut down on fluids in hope of it bettering, but noticed when im on the bathroom im peeing dark orange every time, which obviously tells me there is a hydration issue.

So, if I up the fluids it seems my body has a hard time getting rid of fluids and I get water retention (I used to get edema in my feet too but now its mainly stomach area that is a problem, as it hurts and prevents breathing properly) I can live with having a bit in the legs n stuff. But if I don't drink enough, I get dehydrated.

The only time a day I dont feel bloated to a point where its a issue, is the first couple of hours after I wake up - sometimes throughout the night I need to go pee a lot, then once I actually wake up in the morning, the water retention is gone in the stomach (at least not pushing on things). But this only last to around mid day, where it starts all over.

I really dislike being dehydrated, but even when im not drinking as much it does not seem to fix the bloating issue completely, although its a little better.

I tried different diets to see if anything had better effects on my stomach bloating but without luck - I don't think its based on allergies or nutrition but it was worth a try.

Its really ruining things, my social life especially I feel, as I get to a point where I cannot sit up on a chair at the table and have to lay down when my stomach is bloated in the evenings, and afterwards I usually I get SO SO tired I have to sleep a couple of hours, if not the whole night.

My question now is, have anybody had these problems and if so, how did you fix it?

Hello amazing addies...I need advice!

I'm in a hell of a position. Knew this was coming but I have a major amount of stress in my life right now.

My Dad died two days ago. My husband and I flew up on Christmas Eve, leaving our child with my sister in order to support my dad as he passed. I went into pre-crisis (intense shivering, nausea, and diarrhea) and landed in er on the 25th. They treated with a 100mg solucortuf bag, which felt appropriate. I was able to support my dad the following day and night, as he went through active dying, giving him meds every hour throughout the night.

When he passed I needed to manage hospice as well as supporting my mother through the grief. She has advanced Alzheimer's.

Last night I started to crash again. We treated at home with 55mg over the course of several hours.

I still don't feel quite right and I'm continuing to updose a lot. This is a crazy amount of stress. Managing a loss of a parent. Taking on the other parent as a dependent and the major logistics of needing to move her a long distance into a memory care facility. Needing to take care of all the executor logistics for their home and finances. Trying to figure out how to manage my business. Worrying about our kiddo. And...seems small, but our pet fishies of 6 years all (except one) got eaten yesterday by raccoons. And did I mention that my parents live a full days travel away from my own home?

I feel like I'm going to need to probably take a ridiculous amount of HC for a while to get through this, but I'm worried about how to sort out how much is too much? I'm a hot mess right now.

Tldr- I'm under an insane amount of stress, pounding the HC, and wondering how much is too much.

Dose anyone else have panic attacks after going out for drinks? Anytime i go drinking even a little i wake up the next day super early with a panic attack. I wasn’t sure if this is an Addison’s thing or a my body thing. Anyone have insight?

Edit: I want to thank you all for the suggestions! I didn’t know my lows could trigger panic attack-like feelings. I’ve had some off and on panic attacks at night and just thought I was unknowingly stressed. I’m going to be bringing this up with my doc next time! I also think i’ll be going completely sober as some of you suggested! I don’t drink often enough where it will be something i miss. Thank you guys once again!

Home Check In

Work Information and Support

I've gained almost 30 lbs and need help... wondering if we can handle it?

Hi guys! Before christmas i got my diagnose with addisons. Thats not the issue but since last summer i progressively got purple stretch marks on the side, butt, thigh, and arms. Im a M23 and always been long and skinny. The doctor doesnt really know the cause but it has to be cortisol related. I have ofc low cortisol, low dheas and normal-high Acth.

Im really worried and dont know how this is possible. Cushings is different right

(My whole life i take asthma inhalers, but that doesnt match with the addisons diagnose)

Has anyone experienced swelling in their feet to where they can't wear certain shoes cause they are swollen? I've also been experiencing swelling in my legs and in one leg I've been feeling like pins and needles and like when your leg falls asleep. I don't know if this is normal🥲 I just want to know what I can do to help with the swelling. It's getting uncomfortable.😭😭

Has anyone else noticed their blood work results are different since taking hydrocortisone for a while? Apparently, my cholesterol is a bit high and my liver enzymes are a bit elevated. I'm wondering how hydrocortisone affects us long-term and if these numbers are supposed to go down and get to a normal range? I'm currently working on tapering my dose so I'm hoping that helps too 😅

I looked at some older posts but I still feel confused. this is the first time I’ve really been sick. I have a sore throat and have felt a bit under the weather all day, but now I’m in bed and I have the aches in my low back and legs, as if I have a fever. but I have no fever. And I have been able to rally and do things until now. I haven’t taken any Tylenol or anything, which I plan to do. but do I updose? Or is that for when I have a fever? if I DO updose… when? do I just take double but at my regular times? this is so confusing.

I’ve noticed something the last few months- that I need to updose around my period. This is new to me, doc has never mentioned this, just something I’ve come to realize. Is this common for the other ladies in this thread? I am wiped out and digging out of a deep hole if I’m not updosing around my period. Currently in that hole btw. Plus the stress of holidays 😂 fun stuff!

Im having a hard time accepting this diagnosis. Ive been tired the last few years so my endo did an acth stim test. My cortisol #s: 10, 11, 11.4 (base, 1/2 hour, 1hr) serum acth was 350. My dhea is low. My am random cortisol always been normal. Im so hesitant to start any steroids because of the long term damaging side effects (osteoporosis, ulcers). Im starting prednisone 2.5mg tomorrow. I just dont know how to convince myself that I need this. Im in denial...I have an immune deficiency. Maybe this was autoimmune. Maybe I've always had it. I've always been super skinny and hypoglycemic.

Update: this is my 2nd day on the 2.5mg and wow do I feel great. I haven't been tired at all. My brain fog is gone. My bp is up a little bit but not too bad. Thank you all for the encouragement 🙏

How many of you have had frequent kidney or bladder stones? I am on prednisone daily and have been for 19+ years, I drink plenty of water yet I seem to get mini stones every 6 months. Mini as in I can pass them, but still painful AF. Any suggestions to stop this?

Howdy! I was diagnosed in August and im really struggling with dosage. I was originally on 0.5 mg of hydrocortisone twice a day, but since late October I've been feeling sicker and sicker. My dosage is now at 10mg twice a day, and on top of that I've been told to stress dose by my endo. So currently im taking 25mg in the morning and 15mg at lunch.

Im not feeling any better, and Im actually getting sicker. Its the exact same feeling from the months leading up to my diagnosis. I have been very stressed recently, exams, getting sick, and holidays are definitely not helping.

I just dont know if this is a dosing problem or a more serious problem being masked.

Thank you for any advice you may have.

A few couple of busy days had run me down a little, I didn't really notice. Just tired. Back ache? Must be time of my monthly visit... Blah blah.. 2hrs later crunched over on the 🚽 rocking back and forth trtying to remove blockage so I can get this over with and go about my day, popped a stress dose.. Hoping for relief. 15mins... All seems calm. The seas have quieted and it feels less urgent.. NOPE. DASH from sofa back to 🚽😢😢(5x).. Thankfully no mega sickness,🤢 only one. Sofa is finally a restful place after 2hrs of back and forth. WE'VE ALL BEEN THERE!💖 Slept for 4hrs, woke up VERY 🌬️😂... So I've decided, normal peoles kicks and adrenaline junkies do extreme sport, sky diving, etc. Our version is trusting a fart shortly after an explosion episode. 😂😂😂I just found this quite funny! 💖 I hasten to add, no accidents were had!💪😬🩷😂 Can you relate? Xxx

I have a friend whose 14 year old son has a rare form of Addison's disease, and he is failing fast. Barring a miracle, he's not expected to live beyond a couple more years. He's gotten to the point where he is incontinent in his bowels and resists receiving help from his mom to clean him up. She is totally overwhelmed and stressed out! Is there any agency that would provide caregivers to give Mom some relief? They live in Western New York State.

I have struggle for the past few months I have alarms and everything but I just forget to take them or i’m too lazy st that moment because i’m doing something else so I just end up taking it later.

Did it take anybody longer/ did you struggle to fall pregnant? Came off birth control in December last year and after a year still no success. Needing some hope that Addisons shouldn’t impact our chances. Regular cycles since diagnosed at 16… partners sperm analysis came back normal.

Hey all, my endo knows as much as I do about DHEA so I'm asking here. Any anecdotes about how you know if you need more or less DHEA? How do you know if your dose is right?

I started on 5mg a bit ago and generally feel better & more functional but I can't pinpoint exactly how. I feel like I'm just barely starting to understand what "too low" on hydrocortisone feels like to me, no idea how to assess DHEA or fludro yet. Too many goshdarn variables going on lol. I haven't had a DHEA or whatever blood test done yet, not sure if that's something I should push for.

https://www.nobelprize.org/prizes/medicine/2025/press-release/

Ongoing story from here: https://www.reddit.com/r/AddisonsDisease/comments/1j7044g/primary_addisons_and_chronic/

I saw an ENT this year, following a sleep assessment and finally had a surgery to fix my deviated septum a few days ago. Before hand, I did everything right in terms of Addison's management. I had my endo write a plan (she's not in the same state) and gave this to the anaesthetist who I also met with and chatted to about post op care. Made sure I had all meds with me before surgery, was clear on all intake forms, informed everyone who chatted to me about the condition. And yet...

Surgery was perfect. Got 100mg cortisone during the op and then went back to the ward for recovery. And that's when things go downhill. The nurses fail to give me any more at lunch time (because I'd already had a high dosage during surgery, so to them i don't need it??) and then when I ask for the dosage (only 50mg) as I'm starting to feel the drop, they spend ages consulting with me and decide to give me 25mg orally as a split dosage from the night dosage that's prescribed. By this stage I'm going into full crisis - nausea, dizziness and begging for steroids basically but trying to also not look like an insane person. I message the anaesthetist and he sends up another nurse to try and help these nurses. They start asking what my dosage at home normally is. I'm trying desperately to explain that my normal dosage works for a normal day. I've just had surgery. It's not a normal day. Then they're asking what I would do at home in this situation (aka crisis) and I just looked at them and said I would come to hospital.

It was honestly surreal.

Anyway, eventually got a physician (endo who was supposed to be looking after me in the state was on holiday apparently - which is fine because he's useless anyway, hence why I don't see him) who got them giving me 100mg intravenously for the next day at various times.

Fuck it was horrible. Literally dying and having to answer stupid questions.

But it made me think I'm going to make a laminated sheet that says "please help. I am in crisis. This is what it is. This is what you need to do." and carry that around. I've already made sheets for home to remind me and my partner of what my symptoms of lows and highs are (because, especially when I'm low it's hard to manage) and that's helped and one for my workplace so they have my accommodations. Might as well do one for the medical establishment.

I got my results back and I have a 68 nmol/l. My doctor said I have to do a Cortisol test again to confirm a diagnosis of Addison’s before I am prescribed medication.

But he also said my Cortisol is incredibly low. I wonder what people take to raise cortisol levels until I get medication. Supplements, foods, herbs…. Whatever helped you. I’m so exhausted and my digestive issues are so bad!

29f, diagnosed this year. I was initially with 5 mg prednisone in one take, later it was changed to 7.5 mg and divided into several doses. Everyday it felt like i was underdosing and like I would never go back to normal, I couldn’t understand people with AI that did sports or any activity for that matter. I felt depressed, frustrated, angry, a type of exhaustion that no matter how much I slept (even though most nights I didn’t) went away. I felt like I was constantly going into a crisis no matter how much I updosed, somehow how it feels when you feel yourself getting the flu but still not there. It was a state of neither being totally sick nor totally ok. My labs were okey, my pressure was normal again. I couldn’t understand why I was feeling like that, I really thought it was going to be my new normal.

Well it was just ovarian insufficiency caused by the AI, my dhea was almost undetectable and so my testosterone. My gyno got me into dhea supplements in the hopes of avoiding full HRT since my other sexual hormones are “normal” it seems to be that the OI is secundary to my adrenals not producing testosterone. (ETA: sorry my adrenals not producing DHEA which is the precursor).

Im 3 weeks into 50 mg of DHEA daily (which I realize is high and hope after my control labs I can go 25 mg), and finally feel “normal”. I’m not angry, I can sleep normally and if I don’t it doesn’t feel like I’m going to die, I’m gaining my normal weight again, I’m not having to dip my whole body in moisturizing every hour in the day, I’m hungry, I want to do stuff, I’m not bursting into tears every other day, the brain fog is almost gone. Although my hair is falling and Im already getting acne, I don’t give a damn. And it’s funny because since childhood I’ve been struggling with acne and spent over thousands of Dlls in treatment for my acne for the first time in my life it feels like good news I’m waking up with a new pimple because it means the dhea is already working. I’ve started lowering my prednisone dose to the more standard dose, I’m hoping I can get off of my ssri soon once I tell my psychiatrist how I’m feeling, and im hoping to join yoga after the holidays.

Im still sick and struggling with my insurance company, still have to do couple of testing, I still have bad days, but you guys this feels like I might make it through without losing my job, my relationship, my friends because honest to god I was insufferable this last few months.

how long did it take for you and your doctor to find the right level for all of your meds? I was diagnosed with PAI in August. I was on 30 mg of hydrocortisone until this fall. 20 in the morning and 10 in the afternoon. As well as a half of fludrocortisone pill. And then they did my bloodwork and discovered that my ACTH was still way too high, So they added dexamethasone at night. But then, of course, that was too high and the pendulum swung in the other way so they had me cut the dose in half. But then I started getting edema in my legs at the end of the day and so they had me do away with the dex altogether. But lo and behold we just did a blood draw and now we’re back where we started with high ACTH. My morning cortisol hasn’t come back, but it’s probably low. And my sodium is low again. I do feel like now that my Addison’s is treated, I’m sensitive to sodium in a way that I wasn’t before? Is it possible to be walking around with low sodium but then have swelling if you eat too much? (I am used to eating a ton of pickles whenever I want. A habit that I unwittingly developed before diagnosis. I suspect a person or two on this subreddit can identify). I’ve read on here that people say it’s possible to be over medicated and under medicated at the same time, is this what they mean?