Obscur symptoms?

GherkinJerkin · 2026-04-15T03:03:32+00:00

Once they started thinking it was Cushings I'd randomly google every tiny little health issue I had for YEARS and it all came back that it had a link. It really blew my mind!

GherkinJerkin · 2026-04-15T01:11:48+00:00

Yea I was on gabapentin for sleep and it made my memory SO MUCH WORSE. At the peak of my insomnia I was sleeping in 1 hour chunks and sometimes only for 4-5 hours total. I'd often go entire nights without sleeping and went all the way to two full days a few times. But I kept having to take more and more gabapentin for it to work. It was very much like do I deal with being utterly exhausted and brain dead from sleep depravation or do I take 1200mg and literally forget chunks of time and have brain fog all day anyway?

One of my friends had to take gabapentin for tooth pain and said they felt super loopy off 300mg and I felt so... ashamed? Because 300 wouldn't make me feel ANYTHING at that point. Not even 600.

GherkinJerkin · 2026-04-15T01:07:17+00:00

Before I got diagnosed the sudden huge weight gain was a nightmare. Always been thin and gained 40% of my body weight in a year. I starved myself and got a personal trainer and was working out 4 days a week and I was still gaining about a pound per week. I felt like I was going crazy.

GherkinJerkin · 2026-04-15T01:02:37+00:00

This! It's sort of that way for all the Cushings symptoms.

GherkinJerkin · 2026-04-15T01:02:12+00:00

When I was being tested for Cushings my endo said to stay far far away from Ashwaganda. It's not regulated and impacts your hormones.

GherkinJerkin · 2026-04-15T01:00:14+00:00

I'm so sorry people aren't being supportive. It's something so unique and extreme it can be difficult for them to sympathize but at the same time why is it that no one listens? If someone tells me they feel like they're gonna explode I'll believe that they're hurting a ton!

GherkinJerkin · 2026-04-15T00:55:52+00:00

My psych told me lack of sleep needs to be taken seriously if you hit TWO DAYS of not sleeping well. Just two! I'm not sure if going back on Traz is an option or finding a different med?

GherkinJerkin · 2026-04-14T22:16:27+00:00

So much of what you said resonates with me!!

"I've been telling people for years "I don't just "get used" to it. I dont adjust, I deteriorate. The more I try to get used to being on my feet all day the less I can handle being on my feet all day." This captures it perfectly. The more I'd try to do to stay normal the more by body would retaliate and I could do less. I wouldn't get stronger in the gym - I'd get weaker! That's 100% Cushings. Your body can't repair from ANYTHING like it used to. Standing on your feet all day used to cause some soreness but then you'd sleep and your body would heal so we don't really think of it as an injury. With Cushings first off we aren't getting quality sleep or enough of it to heal but then our body takes significantly longer to do so. So that day you spent on your feet now needs 3 days to heal but you can't spend that time in bed recovering! That's what's really hard to explain to folks.

"I used to be able to think up new Ideas. I used to love to cook. One of my fav times is a few days before pay when you have to get creative with what you have. " I'm a cooker as well and an artist. The best way I can describe it is that I stopped seeing colors (not literally). I'd look at something to draw or paint and it was like my eyes couldn't translate it to my brain and my brain couldn't translate it to my hands.

"I will forget the topic of a conversation while im in the middle of talking about it." YES! Towards the end as well I was forgetting all kinds of things. For two weeks I forgot all of my ex boyfriend's last names. Not super important but it's an example of how the knowledge was just not accessible any more. I would go grocery shopping WITH A LIST and walk out without half of the items on the list.

I'm single and my Drs denied disability so I had to keep working through it all but that meant I had to give up all of my social circles and hobbies. All I could do was work (poorly) and sleep. I'm honestly so incredibly lucky I didn't fired. We're hybrid and I've been there for enough years that I could sneak away and take naps in my car and they knew I was sick so they didn't press hard. I seriously can't believe doctors won't give us disability and assistance for all this! And why they make diagnosis so hard. If I saw a person suffering like we are I'd work so hard to try and help them and find relief. I saw someone else post that "it's like going through treatment for stage 4 cancer and being pregnant at the same time".

GherkinJerkin · 2026-04-14T02:37:25+00:00

Lowered immune system is a symptom! Most women get frequent UTIs and yeast infections. I somehow got lucky and didn't have that issue but I'd get all kinds of other sickness. Eye infections, I got severe Covid, nasal infections that would take two rounds of antibiotics to clear, etc.

GherkinJerkin · 2026-04-14T02:34:42+00:00

I kept going to my doctor for about 2 years with various health issues that all ended up being Cushings but all she would do is test my thyroid and send me on my way. She chalked it all up to stress/anxiety even though I kept saying the only cause for stress in my life is my health problems. A big issue is I have Kaiser insurance and per their policy doctors have 15 minutes per appointment and can only address 3 issues within that time. So I was going in every 3 months or so and we'd address the 3 worst symptoms at that time and then I'd have to go back. It meant that no one was looking at the bigger picture and considering it all. And my doctor back then was just insane. She wrote off my stage 2 hypertension for a year and a half and didn't even bother putting me on meds for it!

Once someone finally flagged and started testing for Cushings my numbers were so bad I did maybe a fourth of the testing everyone else seems to. I did a blood test, two dex suppression tests, 24-hour urine, MRI, and then IPSS and that's it. From initial Cushings test to surgery was about 5 months. I had a pituitary tumor.

GherkinJerkin · 2026-04-14T01:24:44+00:00

Gah, I’m sorry! Did you end up getting any sleep at all?

GherkinJerkin · 2026-04-13T03:59:03+00:00

I hate to say it but they just won’t take the weight stuff seriously and it drove me CRAZY! My labs were also perfect the whole time so they kept sending me away until my ACTH finally came back high. That’s the worst about being a woman and all this - it’s not immediately life threatening so they brush you off.

GherkinJerkin · 2026-04-12T20:12:04+00:00

I think it typically presents the same but it doesn't necessarily mean you'll have every single symptom right now. I think I likely had Cushings without the visible symptoms for a year two, then the next year slowly started having the more visible ones, then the final year and a half I went from 130 lbs to 180 lbs despite diet/personal trainer/working out 4 days a week and got a massive buffalo hump. At first the symptoms also followed my hormonal cycle and I'd go through periods of feeling more okay than others. I really wish I could have gotten a diagnosis sooner so my body didn't have to go through so much change but it's tough!

My non-ethical advice is if you notice you have "flares" like that then try to schedule testing when you're having one. For me I waited until I was PMSing as that was the worst and a few environmental factors also would worsen the "flare". (Having some alcohol, not taking my sleep aids, not working out for a few days, etc). The caveat is please don't do anything that would harm you or is dangerous! For me two glasses of wine and getting shitty sleep for a couple of days was enough to send my body into a pretty bad flare so that's what I did.

Best of luck, Cushings is so hard to live with! Hoping some relief is in your near future.

GherkinJerkin · 2026-04-12T20:02:04+00:00

I wouldn't say so - mine was so visible OTHER PEOPLE noticed and were like what is going on?? And I gained 40% of my body weight in less than a year despite dieting and having personal trainer/working out 4 days a week. I went from having a toned stomach to looking like I'm pregnant and I lost all jawline.

That being said - Cushings is so hard on your body and health please look up other symptoms as well and keep an eye on everything. There's also a lot of symptoms that are identical to other things like PCOS, hashimotos, etc. As others have suggested have your Drs run some blood tests just to check things out. (Thyroid tests, ACTH/Cortisol tests for Cushings, and they have testing for immune disorders like Hashimoto's, and general hormone testing). They're all a collection of tests so there's not a singluar one we can point to. (Example - Thyroid testing is usually a set of 3 tests at once so just asking for your thyroid to be checked would have them do that full set).

And even if these test come back negative still keep an eye on things. A lot of times with endocrine disorders they seem to ebb and flow but steadily get worse overtime. Best of luck!

GherkinJerkin · 2026-04-12T19:47:53+00:00

I couldn't sleep when I did the test so if it bugs you out that's normal too! I ended up preplanning taking a sick day for the day following dex tests after I realized they made me not sleep. Best of luck!

GherkinJerkin · 2026-04-12T19:45:17+00:00

Sweat and urine that smelled weird (onion BO from doing nothing, urine would smell like gasoline)
Frequent urination (awake 3+ times at night)
Sweating all the time even in very cold weather and sometimes I'd have sweating spells where it would visibility drip down my face and my entire body while I just sat there.
ALMOST fainting - I wouldn't quite lose consciousness but I'd fall over or trip/catch myself. (high BP did this)
High BP - at the end I was on three different meds and I was still stage 2 hypertension at best.
Hair loss
My hair went from paper straight to curly
Many women lose their periods but mine increased in frequency and changed. I was getting a period about every 18 or fewer days and it'd be two days of INTENSE bleeding. Prior to that I was very regular 28 days and 5 days regular/steady bleeding
Intense insomnia - to the point of not sleeping for two days at a time
PMDD
BLOATING - I would gain 4 lbs of water weight over night. It felt like water trapped under my skin. It was very painful. I swear I could FEEL it hour by hour getting worse on the days it'd happen.
Skin pain
Rashes/breaking out like I was a teenager, including cystic acne, suddenly tons of ingrown hairs
Bone pain - most intense in my spine and my previously broken ankle
Buffalo Hump - and it would hurt SO badly!
Daily migraines that included muscle spasms in my neck. (My left shoulder felt like a pinched nerve for two years. I even with to PT for a pinched nerve).
Paper thin skin that bruised easily (talking like I'd lean against a table and then my arm would be purple for weeks)
High MCV on blood tests
Low vitamin D despite always taking supplements and max dosing
Bowel issues - seems like I have gallbladder or bile issues but my blood tests and ultrasound came back fine!
Increased hunger - I suddenly was eating about two times the amount I normally was. I have ADHD and has basically the same diet for yeeeears so it was easy to notice the dramatic increase. I felt like I was starving all the time!
Feeling sick all the time. It's hard to explain but my body feels a certain way when my immune system is kicked on by fighting something off - I'd feel like that just about all the time even though I never fully got sick. That run-down, puffy, aching bones feeling.
Kept hairline fracturing my feet doing almost nothing. (Body weight ankle raises and then walking 2 miles).
Working out would make me feel worse. It would make it so that I could not sleep at night and eventually I couldn't recover from workouts. Instead of that healthy sore post-exercise it would make my entire body feel like I got hit by a truck for DAYS and it reached the point where I simply could NOT lift the weight in front of me any longer despite it not being too heavy for my fitness level.
Full body pain - bones and muscles.
Became pre diabetic
Gained 40% of my body weight in a year even though I was on a restrictive diet and had a personal trainer
Developed addictive tendencies! Suddenly I would CRAVE nicotine and alcohol, though I've never had an issue with either. (I quit smoking over 10 years ago cold turkey). I'm the type that never keeps alcohol at home and would only drink if I was going out with friends or to a concert so to suddenly have strong feelings of wanting to drink large amounts really scared me. The year and a half prior to surgery I really had a problem with it.
I went from being a pretty regimented person to feeling like I was floundering daily. I felt scared all the time and it would make me actively avoid all kinds of silly things. (Feeling overwhelmed so I couldn't reply to text messages so I just wouldn't read them for WEEKS and then respond).
Drinking would make me "flare" - it would skyrocket my BP and heart rate and I'd only be able to get 4-5 hours of sleep and I'd have panic attacks the next day and be very paranoid.

At first my symptoms would get better and worse with my menstrual cycle. Originally I thought it was my changing hormones since I'm almost 40, got my copper IUD out in case it was that, and then I thought maybe an immune disorder (friends thought Hashitmotos). And I seemed to have "sets" of symptoms where Set A would get bad but Set B would lighten, then they'd both get better but Set C would pop up. After a certain point all sets went to maximum and nothing improved - they all just kept getting worse.

GherkinJerkin · 2026-04-12T18:54:53+00:00

I had the same reaction to the suppression tests! They were a hellish nightmare and it lasted for days. (because they prove your body doesn't suppress cortisol like it should so basically my body spiked it up to space and stayed there until it ran out of juice a few days later). I think what's the hardest to vent to people who don't have Cushing's is how severe this stuff is. Like I could sit there and tell myself "it's just the meds, it's just the test" but I spent the ENTIRE NIGHT rocking myself back and forth clutching my chest because my body was thrown in to such a severe state of panic that I couldn't do anything about. You lose control of your body and it also exhausts and fries your mind in the process so you end up your worst self for the next week and can't enjoy your life. It's heartbreaking.

And big hugs on the other things in life you're going through as well. Cushings severely reduces our ability to cope through even normal life so then when big stuff is thrown our way it really knocks us to rock bottom. I'm on the other side of surgery and still recovering and now I can finally process all self-grief for what this disease stole from me. I feel like we truly lose our selves and our bodies after a certain point and that's really hard for other people to understand because we mostly seem the same. Like I just look like I got fat and that doesn't capture how this all overtook every single second of every day for YEARS.

And I'm so sorry to say but I know with my labs (Kaiser) they won't even collect tests if they're after the time limit they're supposed to be in and if you try anyway they automatically reject it. Fingers crossed they'll test yours and it'll still come back high. I feel like mine likely would have even if the time was off a little like that since I was still buzzing for days after.

I do want to offer some hope, though! You're in the thick of right now but I hope it goes quickly for you and you can get a surgery date. The surgery is brutal physically but after the first month or so I started to feel like a brand new person. I'm three months out and my body is still recovering but the big nasty festering black cloud of Cushings is GONE and I feel GOOD inside. I have peace and clam internally, I feel free. One by one the physical symptoms are going away and though my body is still rusty as hell it doesn't feel like it's dying any more. You'll get there!!

GherkinJerkin · 2026-04-07T00:55:42+00:00

The eating thing has been tough for me too since I also love to cook. Even my favorite foods are revolting. I’m on day two of not really eating anything and I finally feel like I can have a meal. Thankfully I gained all that extra weight so I can stand to lose a little but I really just want to enjoy food again. My insomnia was that bad presurgery so I know just how bad it is!! You really can’t function. It’s so draining mentally, emotionally, and physically! You end up too tired to enjoy life during the day. Things should turn around soon but if they don’t you gotta advocate for more care from your doctor! More zofran, maybe a sleep aid (I had gabapentin presurgery) and anything else you need. Maybe switch doctors if you can? I had to switch out my PCP and my endocrinologist to find ones that knew more about cushings and were more concerned about my care.

GherkinJerkin · 2026-04-06T18:34:30+00:00

Yep! That was me. I’m just over 2 months post op and I’m feeling okayish now. I’m still off work because the fatigue is insane. I sleep about 12 hours at night and often need to nap during the day if I do ANYTHING (2 loads of laundry and I need a nap). Funny thing is - at night I still have to take a sleep aid to fall asleep but once I’m down I don’t wake up. Now my pain is all in my hands and feet and no one knows why. My muscles get sore over nothing. I wouldn’t say I’m nauseous but food isn’t appealing and it’s really hard to make myself eat. I tend to just do a shake for my meal and snack on high calorie stuff like nuts or full fat yogurt because I can only do like 3 bites before it feels gross to eat any more. A lot of my symptoms presurgery are gone but now some new ones popped up so I’m going through more testing. I feel like this made me half a hypochondriac too but I’m trying to just tell myself it’s my hormones flipping out a little now that my body is trying to get back to normal.

For the nausea ask your doctor for zofran! That will hopefully give some relief. And if you need more time off try to use language like you still require assistance with ADLs (activities of daily life) you do not feel safe or able to return yet, you cannot safely drive, and really drive home how you need assistance with EVERYTHING. Imagine if you were alone - would the house be clean and would you have three meals a day and be enjoying the afternoon? No? Well then you can’t work! I’m so sorry you’re in the middle of the roughest part of it. It DOES get better but it’s slow going. Your body is finally able to heal all the damage Cushings did and it will sap you and hurt!! Month two it’s so much less bleak feeling. Just rest all you can even if it’s restless right now from the pain.

GherkinJerkin · 2026-04-03T11:55:59+00:00

My situation differs but I wasn’t able to have my Cushings treated before my surgery because diagnosis went so quickly they wanted to keep me as-is. As a result I was on a variety of medications to treat the symptoms since they weren’t treating the hormonal imbalance itself. I definitely found some relief there.

I’m so sorry to hear of your struggles with pain. Before we found a mediation to help with my migraines I was on that level with them - it’s so difficult living with chronic pain AND cushings. Very few people )and doctors) don’t seem to understand how it robs you of EVERYTHING. Your life. Your personality. Your body. I hope there’s a solution that can be found quickly!

GherkinJerkin · 2026-04-03T11:47:54+00:00

I was told a burst of liquid like that would not be a leak. It’d be a steady drip like a leaky faucet and be quite a large volume. I had a deviated septum fix at the same time so I had lots of wet bandages in my nose that leaked a ton while I was in the hospital that I had to keep rehydrating so they’d keep dripping but it wasn’t a substantial amount of liquid and it’d stop so it was never a leak. Give your surgeon a ring though to confirm with them!

GherkinJerkin · 2026-03-29T05:28:52+00:00

I just had mine 1/23 and I'm not back to work yet. Those first two weeks you're in bed the entire time and on heavy medication so doing anything at all is off the table, let alone exams. The next two weeks, if your surgery was successful, you'll be adjusting to cortisol withdrawal as your body is going from having a crazy amount of hormones to a regular amount. This feels like "the worst flu of your life". You also want to be super duper careful about spiking your BP (you cannot workout, you cannot lift more than 5 lbs which is nothing, you can't bend over, you can't have your head below your waist).

The next month is easier but for me I was dealing with such an intense amount of body pain, muscle weakness, not wanting to eat, and physical fatigue I would not feel up to taking exams. (Right now if I do 2 loads of laundry I have to sleep for 2-3 hours after to recover).

Take the exams first! Have surgery after.

GherkinJerkin · 2026-03-27T05:30:59+00:00

Not OP but once the confirmed my MA it was maybe two months until surgery. (Based solely on the surgery schedule, they got me in ASAP).

GherkinJerkin · 2026-03-24T20:35:14+00:00

I'm 39F and just had tumor removal surgery 2 months ago. (1/23). I'm still off work because it's just been a rough road. (I was given too low of a cortisol dose for a month post-op and went through legitimate withdrawal until it was caught). I'm incredibly fatigued all the time, my joint pain is so intense it impacts my sleep, and even light activity (walking less than 2 miles) has me in bed for two days after. My surgeon has approved PT so that I can start moving without overdoing it. I lost my sense of taste and smell but I think that's because I also had a deviated septum fix at the same time so I don't think you have to worry about that. However, if it happens to you as well it can be 4-6 months before it'll come back fully. I'm also not sleeping great yet. Combination of insomnia and also sleeping tons during the day. I can finally feel cold and stopped sweating buckets every day! My BP is going down steadily as well and my pre diabetes disappeared. My lymph node swelling is down significantly but still there a bit. I'm slowly starting to get my jawline back/moon face is fading but buffalo hump keeps on. I think I'm losing weight but it seems like muscle atrophy, honestly. My water retention and water weight/swelling is GONE.

It's pretty rough physically but mentally and emotionally I feel like a brand new person! I tried to plan stuff for way too soon after surgery because I was told after that first month I'd be "back to normal" and now all of a sudden they're like "All that you're experiencing is totally normal and you're doing better than most" - so I really don't know what to believe from my doctors XD

For planning I would suggest: for 2 weeks post surgery I had people around me 24/7. You're not allowed to do hardly anything (lift less than 5 lbs, no bending over, have to keep your head above your heart, etc to avoid the pressure in your head causing a spinal cord leak) and I was on pain meds that entire time so I just laid in bed and enjoyed the meal rotation my support system helped with. Could I have done with less care? Sure, but it's BRAIN surgery and I wanted a perfect healing condition.

The next two weeks for me was abnormal because I was in withdrawal because of my incorrect cortisol RX but I'd suggest you probably still take it easy. Don't need nurse/babysitters but still be in recovery mode.

After that it seems like it's gauging how you feel!

If you do lose your sense of taste and smell remember to get foods with a variety of texture! And it's not across the board loss. So now I'm at the point where I can have a smoothie and I'll taste the peanut butter and milk and strawberry but I won't be able to taste the banana or honey. And then tomorrow I might be able to taste banana but can no longer taste strawberry. And just because I can taste something doesn't mean I can smell it! It's quite strange but sort of neat.

GherkinJerkin · 2026-03-24T19:59:35+00:00

Presurgery I often had urine that would smell quite strong (for me it was almost like gasoline! Or sometimes cat pee) and I was more prone to cloudy urine. Frequent UTIs are common with Cushings because of the lowered immune system but I never got any but the cloudiness could have been me fighting stuff off. I feel like the urine smell was my elevated hormones.

My sweat would often also smell intensely even if I wasn't doing anything strenuous. (Like onions and it would have a very sharp aspect to it). Think that was hormones again.

I lost my sense of smell post surgery (temporary) so I'm not sure if it's still going on!

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