My Personal Cushing’s Symptoms List

Rebecca Angel with Cushing's close up smiling

The most common question on Cushing’s support groups is “Is this a symptom of Cushing’s?” and so I thought I would share what I experienced while having Cushing’s Syndrome. I was undiagnosed for 10 years and then had surgery in the Fall of 2017 to remove the tumor on my left adrenal gland causing the problem. 

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What is Cushing’s? Read about this devastating illness here.

My Personal Cushing’s Symptoms

(ALL WERE NEW BEFORE THIS TIME. ALL DISAPPEARED COMPLETELY OR DIMINISHED GREATLY WITHIN ONE YEAR OF SURGERY)

Experienced from 2007 – 2017

 

Skeletal:

non-healing foot fractures on both feet from June 2016 – June 2017

pain/soreness and swelling in all joints

soreness on side-ribs

crumbling teeth/severe tooth decay

Osteopenia

Muscular:

2013 shoulder and arm pain that lasted for about 8 months.

Muscle weakness that got worse and worse over the years no matter how I exercised.

Fibromyalgia: painful to the touch spots on my body, most severe spots on my lower back. 

Integumentary System:

jawline acne

thinning hair

lip sores

bumps/sores on fingers

eczema

skin fungus on chest and back

severe dandruff

moon face: swelling/puffiness

Nervous:

numbness in arms/legs

creepy crawly feeling back of neck and shoulders and face

Itchy spots randomly at all times

mental fog/concentration issues

migraines

Lyme disease (2013 positive test. negative late 2014)

random sharp “needle prick” pain around body, but most often feet and legs

Restless legs syndrome

Digestive:

Excessive cravings for sugar

Severe pinworm infection 2008

Acid reflux (severe/daily)

Occasional blood in stool

Excessive weight gain, concentrated in mid-section.

Always thirsty

Constant need to urinate

Respiratory:

severe and recurring allergies/sinus infections/ear infections

sleep apnea (any sleep position)

sick often with colds, several times a year.

fat and swelling of throat constricting breathing

out of breath in any activity

laborious breathing

Psychological:

Depression

Anxiety/Panic attacks

Cognitive trouble/mental fog/memory issues/hard to read and write

Unprovoked bouts of Rage.

Endocrine:

Constant exhaustion

hypothyroidism (diagnosed 2016? Treated with Levothyroxine- decreased swelling)

benign growths on thyroid

fatty and swollen neck interfere with breathing and swallowing (even after diagnosis and treatment for hypothyroidism)

hump on neck/upper shoulders

Pre-diabetic

Reproductive:

Menstrual cycle erratic and longer between periods (50 days or more)

Low sex drive.

Inability to orgasm

Circulatory:

excessive swelling in feet and hands

irregular body temperature, often extremes in different parts of my body at once

blood pressure rose from 82/60 to 118/72

see “stars” every time I stood, even moving slowly.

random heart flutters and strong palpitations even when resting 

restless legs.

Comments

  1. Anne Sahlholdt

    Hallo. It is so interesting for me to read and I also feel encouraged. Our stories are so alike. I had my left adrenal gland removen 6 weeks ago. And I think I have had Cushing for 10-15 years. It was discovered because I had a CT scan in july 2020 because of diverticulitis. They thougt that the tumor could be cancer so everything went fast. But luckily they found a CT scan from 2009 with the same size tumor. So it could not be cancer. Then I did all the testing and they foundt very low ACTH and high cortisol and I did the short og the long Dexamethason testing. And every sample showed Cushing. I always knew that something was wrong but did not know what to do and one day took the other. I had to pee all the time especially during the night, I could not run or walk on stairs, I had headaches and migraines with aura, always so hungry and stomach acid, dizziness, weightgain on my abdomen and face, infection in my teeth and they crack (have had 4 removen), all too much energy actually (was working like 50 hours as a midwife in a doctors clinic and in my own clinic with acupuncture), slight fever in the morning, thirst and so on. My bloodsugar was raising and so was my kholesterol. I just could not understand. Now I am also strugling I am afraid because I get these crisis all the time with nausea, very low bloodpressure, headache and stomach pain in spite of 50 mg Hydrocortisol. I have nr 3 bladderinfection since surgery and I am so afraid it will never go away. How did you do after surgery? Thanks for sharing your story. It helps a lot. Best regards

    1. Post
      Author
      Rebecca Angel

      Hi Anne. Thanks so much for taking the time to share your story, especially when you are feeling so sick. It’s so hard! I did not do well after surgery, in part because I was not told much of anything about adrenal crisis until finally seeing my endocrinologist 6 weeks afterward (I couldn’t get an earlier appointment). So I had chronic diarrhea, nausea, headaches, severe joint and muscle pain, skin peeling, and my depression worsened. Everything takes so long to heal so I’m not surprised your infection isn’t going away easily. I’m 3 years post-op now and feeling great, but it’s a LONG ROAD. I was not able to work even part-time until three months after my surgery. I still can only work 3/4 time. But everyone is different and your recovery may go faster than mine.

      I highly recommend checking out the Cushing’s Support and Research Foundation website for resources and more patient stories. Here is information specifically about post-surgery from their site.
      https://csrf.net/wp-content/uploads/2018/02/Final-Recovery-from-Cushings-Updated-2-2018.pdf

      I also found amazing support and advice on Facebook groups for Cushing’s. Ask for help from family and friends! You are still very fragile and will be for quite some time. Sending you healing and ease.

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