Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.
My journey started about 7 years ago. I began with generalized symptoms. I had severe insomnia, muscle and joint aches. I would be wired for a few days than couldnt get out of bed for days. The symptoms continued to get worse.
I sought help from several dr’s which led nowhere. after doing research I really felt that my symptoms were related to cushings. My local endo did run a few urines and salivas which came back elevated, however, he just wanted to re test in 6 months. I was deteriorating so rapidly that I decided to go to LA and see Dr. Friedman. Best decision of my life.
I will be starting on Ketokonazole after he gets labs that he drew back, and he has Dr. M at MD Anderson reviewing my MRI.
For the first time in many years I feel there is a light at the end of the tunnel. I am so greatful that I have found Board s like this one so that I am able to inform myself. So thank you !
Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
Recently I had a kidney stone. I went to the ER where they did a CT scan. The confirmed the stone and gave me pain pills to tough it out. A couple of weeks later I got a letter describing all of the CT findings. I had to look up all of them to figure out what they meant. One of them was adrenal adenoma. When I started reading about this one it was like reading my medical history. Weight gain in the belly, hump on my shoulders, high blood pressure, high sugar, high triglycerides, fatigue, depression, serious panic attacks, aching muscles…
I didn’t have a regular doctor because I just moved to Phoenix and was fed up with the VA. I’m a disabled vet due to a back injury in my first year of enlistment. So I got an internal doctor and showed her my CT findings, she wasn’t worried but upon insistence I got her to test more. She called me a few days later to tell me that it was a functioning adenoma. She is sending me to an endocrinologist because it might be part of a bigger autoimmune disease, I’m guessing Cushings.
I told her I knew exactly when it started, in 2003. That was shortly after finishing Hepatitic C treatment and when I had my first panic attack. I had no idea what was happening and called 911 and took an ambulance ride to the ER. They found nothing physical, so continued my life of being treated as a hypochondriac. Oh yes, prior to the Hep C diagnosis I was treated as a mental patient, depression got stamped on my forehead for over a year…
Now here I am 11 years later, 60 pounds over weight, can barely go up stairs without getting out of breath and starting a panic attack. Doctors have been riding me about my weight, and not exercising… Finally they hear me!
Now I have found this board and have lots of reading to do.
I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.
I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.
I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.
However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.
It would have been easy for me to give up, but that is not the life I wanted!
Hello, my name is Melissa and I have Cushings due to long term Steroid use.
In April of 2012, I was diagnosed with type 2 diabetes and anemia.
About a month after my diagnosis, I started to have repeated sinus infections in my left nostril. After going through a number of antibiotics, my primary did a Cat-Scan which showed a growth the size of a quarter behind my eye.
I was diagnosed with a rare auto-immune disease called Idiopathic Orbital Inflammatory Syndrome (IOIS). Treatment for this was a high dose of Prednisone (steroid. 80mgs per day), which I was being tapered off of but because I was being tapered too fast, the IOIS relapsed so I went back on the high dose again and then tapered from there.
I have been off of the steroids now for 4 months and left with Cushings. I gained 120lbs which is the major of my complaint. I am moody, I do have irregular menstrual cycles, sore muscles (especially in the morning when I wake up), fatigue, memory loss, and a slight hump.
I don’t think my symptoms are as severe as the majority of people here, however, I am 318lbs and extremely misereable with my weight. I have started a nutrition regimen and hoping to drop at least 10-20lbs so that I am more comfortable to work out. I pray everyday that this will go away sooner than I am told it will.
Unfortunately, I am still having issues with my eye as well as problems keeping my sugar levels down. I’m up for any advice and will be more than grateful to share and compare stories with others.
I was dignosed with Cushing’s in April 2013 i had surgery in June 2013 to remove a tumor on my pituitary gland.
I have had some ups and downs with joint and muscle pains and emotional issues.After my 8 week check up they decreased my meds down but my levels were not normal at that time yet. I just recently had my blood checked again and my levels were really high in the normal range so they advised me that I could stop taking my meds all together which they say is a great thing.
I had been having some of the same issues and symptoms as when i first went to doctor that started coming up this is why i asked for blood test in first place and they are stating with meds and my own levels i am once again overproducing makes sense. However i am not feeling well at all severe muscle pains in knees and feel like i need a crane to get out of bed from being so stiff everyday.
I feel like i am once again an emotional wreck and have issues and nobobdy seem to understand this terrible disease and what it does to your body and one’s self. I have been married 23 yrs and have 2 beautiful daughters.
I gained over 45 pounds with all this I am down about 20 so far still have a ways to go for sure.
I really need some support with dealing with all this they say about 6-18 months to truly recover from this and feel so alone sometimes.
Hi. I was diagnosed with a 2.5 pituitary tumor and Cushing’s Disease in late April. I had surgery and it was removed in early May.
I was feeling fantastic until mid-July. Now I have pain constantly. My joints and muscles hurt so badly that I can barely walk.
I was so happy to have the diagnoses after 25 years of complaining to doctors about my symptoms. However, I am in so much pain now that I almost wish I had never had the surgery.
My Comments: Onset symptoms: headaches, low back pain, diarrhea, fatigue, muscle/joint pain, memory loss, weight gain in abdomen, bloaded red face, & blurred vision.
Ongoing symptoms: right flank pain (just underneath ribs), stretch marks on stomach and back of upper arms (not purple), impotence, blurred vision, dry/itchy eyes, insomnia, fatigue, muscle joint pain, memory loss, fat around abdomen & face.
I am a Veteran who goes to the Veteran Clinic for my healthcare. I have been going there for a little over a year. I go to a womens clinic for both my primary care and gyn.
Backing up a bit…Since my youngest son who is turning 18 next month was about 3, I recall the onset of many of the symptoms of Cushing’s Disease. However, I didn’t realize what was going on. I believe a lot of my symptoms started when I fell down backwards down a flight of stairs breaking my elbow and wrist. I really haven’t been the same since. I have slowly put on 120 pounds over the years, all of it being in my mid-section. I have suffered off and on migrane headaches. My arms and legs are thin as rails compaired to my mid body. My skin has gotten transparent and dry. I have the thick cushion of fat tissue between my shoulder blades.
Then in 2007 I had a severe hysterectomy due to massive bleeding/clotting and cysts. I had serious complications which include blood clots in my legs and also a PE. I have gone down hill from there. My bones, muscles and joints ache so bad and can barely get up and down. I can’t hardly stand more then a few minutes at a time. I have fluid retention so bad that my current doctor finally put me on lasix daily. Finally I suffer from depression and anxiety and I hate to go out in public because of my condition. Though my husband gets frustrated with me he is still very protective of me and helps.
I have had so many doctors imply that my problems are phycological or due to my obesity and I am simply tired of that. I am on 17 medications now due to blood pressure, fluid retenstion, thyroid, diabetes, neuropathy, depression and anxiety, cholesterol and to insure against a heart attack.
I am 52 years old and I feel like my life is coming to an end. I just recently was reassigned to another primary doctor as my old one left the clinic. I didn’t like her at first, her personality was so different from my last doctor. But Friday she did a completed physical and gyn exam. She asked me if I had ever been diagnosed with Cushing’s Disease. I had never heard of this disease. She started pointing out all the classic signs. She decided she wanted me to have a blood test and was very determined I had it done. I went home and researched it and indeed I have all but maybe one of the symptoms.
I am a little bit nervous about it and realize its a waiting game as far as tests and more test. On the other hand I feel like I can finally put a name to what’s been going on and hopefully feel better. I am glad I found this support group and would enjoy talking to others
UPDATE March 6, 2012: Also, additional systems include excessive hair growth on my face, foggy vision, inability to concentrate, red patchy marks on my arms and I have been told I am slightly bi-polar as well at suffering from anxiety and depression.
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