i am a 65 year old male who was diagnose with cushings about 7 yrs ago
i have no adrenal glands that are working
i have to take prednisone to keep me from crashing
am now a diabetic and have heart failure
i spend 99% of my life in bed i am very weak and in pain most of the time , my family doctor keep giving me prenisone and never gave my body a break from this drug so now what caused me to be so sick is what i have too take to stay alive.
my doctors now really dont no that much about cushings so i feel as though i am just stuck ,
I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.
I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.
I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.
The back and hip pain were so intense I couldn’t walk on my own so I had to use a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.
Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.
Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.
Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain. I am taking magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned. Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.
For Dunedin woman Nikki Cockburn, being one in a million is not a compliment.
She is one of the very few New Zealanders with Cushing’s syndrome, a very rare disease caused by excess production of cortisol.
Long afflicted by skin disease psoriasis, she had been prescribed the steroidal cream Dermol.
Over the years that she rubbed the cream on her skin she unknowingly boosted the cortisone levels in her body to the point where the symptoms of Cushing’s syndrome began to manifest.
“I was very unwell for a lot of last year. I was getting headaches a lot, my hair was falling out a lot … I had constant diarrhoea and because I have friends in their 30s who had bowel cancer I thought it might be that, but it went away again.
“I had insomnia, overheating, constant sweating, impaired cognitive function, and I was getting big, thick purple stretch marks over about 70 per cent of my body.”
Eventually a friend, who fortunately had heard of Cushing’s syndrome, raised that as a possibility.
“I went and looked it up and went ‘I’ve got that, I’ve got that, I’ve got that’ – it was like ticking everything off of a list.”
An official diagnosis soon followed, but during that consultation came the shocking discovery that all Cockburn’s agony could have been avoided.
She was told that in 2014 her doctor had received a letter from a dermatologist warning Cockburn should stop using Dermol immediately.
“I got offered the chance to meet him [her doctor] just after I was diagnosed but I knew I was so angry and upset that there wouldn’t be a positive outcome, and I’m a forgiving person,” Cockburn said.
“I ended up meeting him last month, took a support person and read out a letter setting out everything I have been experiencing … He apologised profusely and cried quite a lot in his talk with me. I could tell he was really remorseful.
“He was also honest. He told me that the alert wasn’t put on my file in 2014 – it was in fact put on there in 2012, which upset me even more.
“He had seen the sentence there, but somehow had missed it,” she said.
The clinic and doctor, which Cockburn did not wish to name, have since reviewed their processes and procedures for dealing with patient alerts and held refresher sessions on psoriasis treatment.
Cockburn now uses Dermol sparingly and is trying to replace it with a non-steroidal cream for her psoriasis.
Cushing’s syndrome, which affects between one and three people in every million, is an invisible illness. With make-up, a long dress and stockings on there are no obvious signs of anything being wrong with the outgoing 36-year-old.
“A lot of what is going on with me is going on inside, or are things you couldn’t see unless I was wearing shorts and a T-shirt,” Cockburn said.
“I’m normally in bed or lying on the couch, because one of the big side effects for me has been lower back pain and I now have gynaecological problems as well.
“Over the past few months my back pain has been horrific – I am in pain sitting here now – but I guess if you talk to anyone who is in daily pain they kind of get used to it.
“I’ve forgotten what it is like to feel well.”
Cockburn decided not to pursue a health and disability commissioner complaint, but the Accident Compensation Corporation is investigating her situation.
With treatment, Cushing’s syndrome can be managed, but Cockburn’s prognosis is uncertain, which has led to anxiety and panic attacks.
“I have been very open on Facebook – I blog about my journey, what is happening to me,” Cockburn said.
“What has happened to me has happened – you can’t change it, you can’t take it back – but I sure as hell can stop it happening to other people by raising awareness.”
Have been experiencing symtoms since mid90s. Spent almost four years on high doses of steroids for brain tumor, snd diffilculty being weaned off.
Midsection has continued to grow,blood pressure and glucose levels have risen. Upper body muscle has all but disappeared, have the hump on back of neck. Developing facial hair, have lost upper body muscle
Cushing’s with a pituitary tumor. Had surgery on April 2013.
Surgeon nicked the pituitary gland giving me adrenal insufficiency. Sept 2016 went into adrenal crises while on holiday in Germany. I believe I was given too much prednisone as I have cushing’s again from too much prednisone.
I am working with my Endocrinologist plus an MD with a MSc who is an expert in nutritonal biochemistry.
My bushings has been caused by corticosteroids. I have been on steroids or 40years daily.for severe brittle asthma. I have been on prednisolone and iv steroids on hospital admissions for years. I did suffer from cushingoid symptoms caused by fluid but they settled as the steroids were reduced. About 4/5 years ago i was struggling with the extremely high doses of prednisolone so I was put on intramuscular Kenalog of 40ml/mg every 2 weeks. This was to be a short term fix but went on longer.
Unfortunately this was not monitored and reduced at all. Even though I was experiencing pretty obvious symptoms of bushings I could not gt anyone to look at this so I got worse and wore.
Eventually I saw my Resp Consultant on 4thJuly and got the diagnosis. This was a horrible relief.
Immediately I was put on a 2.5ml/mg education every 2 weeks to try to lower the cortisol levels.
Bit like closing the gate after the horse has bolted! To say this is hard is an understatement as what with the side effect from the cushing as everyone will know this is hell there is the withdrawal from the corticosteroids too. They all morph into one so I don’t know what is happening.
I have tried to get some answers from the medical profession but can’t get any information at all.
The Cushings side effect weight, stretch marks etc are still getting worse and I can only think that this is because I am still being loaded with steroids.
I appreciate that my bushings is caused by steroids and not a tumour but if any one has any advice how to cope with this I would be sooooooooo grateful.
I have Iatrogenic Cushings—I also have adrenal insuffiency —One doctor told me to just say I have Addison’s—I have many symptoms of Addison’s but I don’t have the salt issues. I have much empathy for the 52 year old man.
I am 60 and have been on cortico-steroids since 1979—everyday. It has beaten up my body alot-oh–I have steroid dependent asthma–I have essentially been in statis asthmaticus and/or on steroids for 30 years.
My allergist told me I have the twitchiest lungs he has ever seen. I am sharing this because anyone else on steroids for their asthma must have very twitchy lungs too.
I know I am lucky because I have never been on a respirator–Hospitalized yes.
I would like to hear from other folks with steroid dependent asthma or other Cushing’s folks.
Help!! We get no answers but we have questions! My brother-in-law is 52 yrs old and has had a lifetime of prednisone use due to chronic asthma.
Last spring he got a cold that completely debilitated him to the point where the most he could do was take a shower and sleep. This went on for months. In and out of doctors’ offices looking for answers. Getting none. Lots and lots of tests.
Around September he started regaining some strength and was able to return to work part time.
By October, he had another cold and everything quickly went down hill. Severe fatigue, lightheadedness, muscle weakness etc. etc.
After seeing pulmonary specialists and every other doctor we could, thanks to our HMO, we were told steroid myopathy, Cushing’s Syndrome, cardiac myopathy and the obvious shut down of the adrenal glands due to this.
Now we see why there is no energy!! But what do we do? We live in the Midwest but would go anywhere for treatment or help.
The main question is how does a person get enough strength back to enjoy and have some quality of life?? At this point he is on a maintenance dose of 10mg of prednisone per day so he can live. Should an endocrinologist be checking him?? Any suggestions or comments are greatly appreciated!!! Thank you.
Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.
I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.
I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.
I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.
I developed severe asthma 6 years ago. At that time the pulmonary doctors put me on high dose steroids, and I have continually been on high dose steroids since then. As a result, I now have Cushings,addisons and type 2 diabetes. I have tried so many times to get off the steroids but I end up very sick and hardly able to breathe. I’m searching for help.
I hope someone is out there in my shoes so you can tell me how you are coping with this disease.
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