Cushing's Syndrome

Join the Conversation on
Cushing's Syndrome
567 people
0 stories
25 posts
About Cushing's Syndrome
Explore Our Newsletters
What's New in Cushing's Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post

I’m so lost #no real help

I’ve been suffering with chronic pain fatigue for many years. Seen countless doctors and was diagnosed with fibromyalgia, Cushings, hypothyroidism, cfs on paper. Dr never really talks about the symptoms just shakes head at my complaints. Pain meds. But yesterday I this episode where I can’t stay awake long I wake for awhile and start dozing off again. I feel drunk sleepy. It happened before thanksgiving went on for almost 2 weeks. I have a dog esa. Then I went to sleep early and couldn’t get up until 4pm. Is this normal with fibromyalgia? It’s scary
#CFS #Fibro #Fatigue #CushingsSyndrome #KidneyDisease

1 reaction 3 comments
Post

Mercer County NAMI Walk

Hi Everyone! I am not sure where any of you are located, but on May 18th 2024 there is a National Alliance of Mental Health walk that I participate in every year.
I was wondering if there is anyone here who would like to join my team? My team is The Mighty Minds. :) We will walk to help stigma on Mental Illness. If anyone would like to join or donate to my team I will put the link below.

It would be so cool to have you guys there. I'd love for anyone to be a part of Mighty Minds!!!

www.namiwalks.org/participant/Rachel-Tepper

If the link doesn't work you can message me on here and we will figure it out. I'd love for you to join. ❤️

#MentalHealth #BipolarDepression #Depression #Anxiety #CushingsSyndrome #OpticNeuritis #MultipleSclerosis #Steroids #Sarcoidosis

NAMIWalks Mercer County

I'm supporting NAMI!
4 reactions 1 comment
Post

Checked one thing out of 4 on my to do list.

I make a to do list every night before I go to bed yo see what I can accomplish the next day. Today I was able to get out of bed and meal prep for the rest of the week. I am proud because I started it and then went to lay down because of pain. But I got back up and finished it later. Small steps. :)
#ChronicPain #Depression #ChronicIllness #OpticNeuritis #CushingsSyndrome

24 reactions 1 comment
Post

Cushing's diagnosis-questioning my dr

I have read up on #CushingsSyndrome for quite some time given I have the physical appearance symptoms that come with that dx and all of the body dysfunction symtoms like extreme #Fatigue , poor wound healing, #Anxiety /depression, I've even broken bones from a fall that shouldn't have resulted in a break. I tested positive for too much cortisol for a low dose overnight dexamethasone test. Since I tested positive for the low dose they did a high dose suppression test which from all my results is used to differentiate why the cortisol was high in the first test. My endo messaged me after the second test and basically said nm your #Cortisol levels are normal?!? We're not going to look in to all your symptoms any further. WTH? What would you guys do if you were in my position?

2 reactions 5 comments
Post

Sick, suicidal and it's getting worse

Hi, I'm new here, but I am not new to chronic illness. In 2013 I was diagnosed with autoimmune chronic kidney disease, Hashimoto's Thyroiditis, and chronic Lyme Disease. This year, the doctors added Lupus, Fibromyalgia, and Graves eye disease. I've dealt with exogenous Cushing's syndrome from super high doses of prednisone, I live with CPTSD and chronic nightmares.

I'm just really struggling to find meaning. I'm struggling with feeling like I deserve to be alive. I don't think I do. I've been living with chronic illness for 10 years and it's not getting better... it just seems to get worse. I started very optimistic -- even ended up in remission five years ago -- but that quickly ended and now I have new diagnoses to navigate. I'm not sure how much more I can take.

No support system. No family. I have a partner, but his life is made all the worse for my being in it. I see him suffering, watching me suffer. I cannot tell him what is really happening. He cannot take any more. I am alone in this fight, in this body. I doubt anyone will read this. I'm just writing to write, I guess. It's been written that the deep depression that follows grave illness could be avoided if the person afflicted has a deep enough investment in life... I have none.

Has anyone been here? If so, how did you pull yourself out? I've been here hundreds of times, but none of my tactics work now. and I'm getting scared.

21 reactions 3 comments
Post

I'm new here!

Hi, my name is K_Lynn1376. I'm here because I was diagnosed with Cushing's syndrome in September and had an adrenalectomy on 10/31/22. This has left me in Secondary adrenal insufficiency. I want.to learn all I can about both conditions to have the fullest life I can.

#MightyTogether #cushing 'sSyndrome

1 comment
Post

Physical health #CushingsSyndrome #svt #Steroids #MyalgicEncephalomyelitis #atopy

Home from hospital now, so happy to see my children. The worst part of all this is how suddenly i become unwell and end up in hospital and have to leave them with someone else. Looks like my heart is the issue, i went into SVT and they had to give me IVs to stablise my heart rate. Looks like it could be cushing syndrome too, and steroid induced diabetes with my blood sugars going above 20. They’re looking more into what’s going on with my heart and I’m now going to be under the cardiologist, as well as the thoracic clinic too with my usual respiratory consultant. Will have occupational therapy, respiratory nurse to visit at home as well as speech and language to help with my voice and swallowing problems. We are going to try and reduce the steroids a bit as currently on 50mg and have been for ages. The weight should start to fall off with the reduction too. My new wheelchair comes tomorrow one i can wheel myself rather than being pushed so will give me some freedom. Been a really awful few months, they want me to do counselling because of how much my life has changed and how limited i now am and they said they can arrange it for me though I already have a private therapist so not sure what I’m going to do yet.

1 comment