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Danielle, Undiagnosed (Cyclical Cushing’s)

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May-Aug 2013 Age 17-18

I started noticing that i was losing weight. My arms and legs looked like toothpicks and i had bruises everywhere. i was fairly active i would run and lift weights everyday minus some weekends. Till i couldnt no more. I became very very weak, i was tired and fatigued all the time no matter how much sleep i got. I would wake up 5-8 times a night to pee, i was constantly hungry. Omgsh never not hungry i could eat and eat and eat but i still wasnt big. I was “too skinny”. My hair started to fall out in clumps , i would get these attacks where i would have insane blurry vision, i would become super pale and my stomach would blow up like a balloon. i would have terrible back and stomach pains , ringing in my ears.I would started shaking,my speech would become slurred and all over the place. I would not be able to walk straight or think clearly. I was very scared and i hated everytime these would happen. They usually hit the more active i was. so if i would run or even jog/ walk for more than 15 min it would hit. i became scared of doing anything

More symptoms: Constipation
drooling
Muscles felt like they were eating them selves
terrible headaches
no period
thirsty!!!!!
Constant! urination
muscle twitches
muscle spasms and jerks
waking up every hour
terrible acid reflux! it would wake me up

SEPT 2013
weight 115-120lbs

I started working for my father at his shop in sept 2013.I did not last very long. I got to the point where i was dying. I was sick every week, my periods had stopped , i would spot every day. I couldnt think AT ALL i felt so stupid. Like i was in a haze , i started getting really bad hypoglycemea ,which made things even worse. Despite eating so much food it would not go away.
I should mention my moods, I have always been more aggressive and loud happy go getter, i noticed that i was extremely irritable.. and jumpy all the time. I would cry for no reason and my anxiety was getting worse and my anger was like never before. One day after days and days of struggling to work, i went to the grocery store with my father , and i was not able to push the shopping cart, i almost fainted and had to have him take me to the car. Mind u my whole family knows me as “the strong one” . I was benching 220 lbs at 14, now i couldnt push a shopping cart. He couldnt believe it and i stopped working a week later. I had too many things going on i knew i had to get them sorted before i could go back to work and then go to collage.

I went to the doc who sent me to an Endocrinologist. She tested me,
LOW GH
LOW FSH
LOW THYROID
HIGH URINE OUTPUT
LOW LH

At this point i just wanted to get fixed. She told me i had to gain weight in order for my sex hormones to bump up and maybe id feeel a bit better. So i docs orders and started to eat, when ever i was hungry.. which was alot.
i came back to see her a month later, and i had gained 35 lbs!My skin was not as dry, still bruising,and terrible headaches but i had way more energy. I thought i was getting better. Little did i know my tests did not show that. I had cortisol levels 7x the normal limit, my urine out put was very high. I did a 24 hour urine test an filled 3 jugs. She suggested maybe diabetes insipidus and also.. a brain tumor. I was kinda freaked when i heard the word tumor but i just wanted to feel normal . As long as i could get help i didnt care.

2014
i did another dex which came back positive for cushings, i had to do one more and my tests suddenly dropped again. After a few more dexa tests coming back neg she ended up dismissing me and told me that i do not have cushings.

Note: I Did have a neg Pituitary mri
and adrenal

I was heartbroken . i thought that this was my way out to finally feel normal or at least ok.
She sent me to another endo who refused to see me. So i started seeing a naturopath, i spent 800$ the first day of seeing her and all those natural supps, dieting recommendations she gave me did not do a thing. TMI I also went to get a colonic and colonoscopy around this time because i just could not go . And i was pooping out blood.They said everything was okay and that it may have been hemmeroids.

2015
Specialists:
ENDO
E.N.T
Nephrologist

My family doctor suggested maybe i have fibro.. then celiac.. then hashimotos.. then maybe MS? She finally sent me to ANOTHER Endo after those tests were NEG , who said he could not help me the first day of meeting him. During this time i was devloping social anxiety .It was very hard for me to talk to people which isnt like me at all. Seeing as i was a social butterfly.My face would go beat red after any little stress i had. i hated it! i had been seeing and E.N.T because i was coughing out blood. They told me i had cysts in my nasal passages and it was nothing to worry about. And that i also have damage in my esophagus due to the acid . She prescribed me Tecta.I even saw a nephrologist because i was constantly thirsty and constantly urinating. He was the worst doc i have ever seen. He told me i knew too much and i walked out because he could not help me.My energy levels were erratic. Some days i would have so much energy and clean clean clean want to run and do everythiing! , other days i would get out of bed and crash very quickly.This was becoming a burden.

2016 Aged :21
Still trying to get help
moved
weight: 165 (gained)
Specialists: Sleeping
Neuro

I became very frustrated and sad of always being let down and disapointed by all these doctors. I kind of gave up for a bit.i saw two last specialists which were sleeping specialist and a neurologist . which did nothing but prescribe me sleeping pills for my insomnia.The neuro did tell me that the symptoms i am having were not caused by cushings, so he started me on topiramate. An antiepileptic drug.

I finally contacted a pituitary specialist downtown toronto. And thank the heavens ! i got an answer! CYCLICAL cushings. He told me im 99% to have cushings i just need one more biochemical confirmation. He have me a T3 MRI of my pituitary which show an enlargment right side pituitary. “One more test and we can go in there and operate” i was ecstatic! so happy to have finally found someone who can help me.

i tested and tested but my results came back Neg, or just a little bit higher. a few months later He told me that he will keep testing me but he does not think it is cushings anymore. Another heartbreak 😦

2017
moved again
aged 21
Specialists:ENDO

I now have another dexa test and a 24 hour urine.I need this last one and they will operate . during this i am trying to move out to ANY cheap apartment because my father does not help me at all. He makes me much worse and i have no where to go other than his place. He is a big burden and does not understand what im going through at all, i have had two hospital visits this year due to overdose. This is something that i thought i would never do in my entire life, but it happened. I can not handle living like this especially when i have someone putting me down and denying my disease everyday. I am seeing a therapist now and a psychiatrist but the pills they give me do not help when i cannot live my life or work through any of my problems. I have gone to a shelter but this disease does not make it easy for me to live there.I only have my partner helping me right now . ANY donations would be greatly appreciated. !!!!!!!

this is my go fund me to help me get out of here in the mean time.
Thank you so much for reading my story and anyone,, feel free to email me or ask me questions.
i am i gona keep this updated when i go to docs or get any new info

 

Please email Danielle for the URL to her GoFundMe Page

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Victoria (Victoria), Undiagnosed Bio

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Hi everyone! I would first like to say how happy i am that this website exists it makes me feel so much better that others have gone through what i am currently experiencing and have made amazing recoveries! I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was

I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was i experiencing the internal manifestation of cushings causing extreme fatigue, anxiety, headaches, and muscle pain my appearance seemed to drastically take a turn for the worst bringing my self esteem to an all time low. My physical symptoms include an extreme moon

My physical symptoms include an extreme moon face,striae on breasts and calves, excessive hairiness, buffalo hump, acne, and bacne. I felt disgusting and sick all the time. i isolated myself from everyone because i was so embarrassed and sad because i felt like my femininity had been stripped away from me and i just was not myself. I began cutting to cope with my extreme sadness

i am now home for the summer and last Wednesday went to the doctors to finally get the diagnosis of cushings because i know for a fact that i have it. i first showed him my back and told him about my other symptoms. he then asked me if i was exercising and i said no because i never feel well. he said he thought that

he said he thought that i just needed to lose weight and that would help with my back and other things. he did notthink it was cushings because my buffalo hump was not pronounced enough but thankfully enough he said he would do a urine test just to be sure amongst many other blood tests. Now i am not a very large girl cushings has not manifested itself in me that has really effected my weight but it has effected everything else.

Anyways i am still waiting for the results of my blood work and urine test, i really feel that i will get the diagnosis there is no way that i do not have this. i just want to go back to my old self and enjoy college with my friends.

i am so scared and hope to support others and find support through this amazing site! Thank you 🙂

 

 

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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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Crystal, Pseudo Cushing’s Bio

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I was first diagnosed with psudo cushings at Duke University and was told that if I wasn’t better in a year to come back. I was on crutches for three months because of the weakness of my bones and I had fallen and cracked my pubic bone.

I suffered for a year and went back. I had high blood pressure, swollen legs and ankels, bruised easily, had gained 50 lbs., depression, my hair texture changed, it was like straw. My mid section was hugh, my face was huge . I had swelling around my neck. My toenails on one foot were crumbling. I had blurred vision, weakness in the legs and fatigue. I have probably left something out. I had MRI’s and CT scans and they couldn’t find a thing.

Thank God they referred me to the National Institite of Health in Bethesda, Md. In June of ’07 they ran every kind of test they could and could not find a tumor. I have been put in the catagory of one in two million. They first put me on a study drug called RU486. It was an abortion drug used in Europe in the 80’s which caused much controversy. It was supposed to keep the cortisol from attaching to the red blood cells. I took it for 3 months but it did not work. I just got worse. My potassium would drop and my feet would swell so big I felt like they could pop. I was given 20 bags of potassium intraveniously in one week at the NIH. Oh yes, I was also anemic and had to have a blood transfusion.

As a result from weak bones, I have also developed Avascular Necrosis. My right shoulder has deteriorated which causes much pain and I have to live on pain medicine. I stopped the study drug and am now taking the max dose of Ketoconazole and am also taking Mitotane.

I stayed at the NIH from Sept. to Nov. , 8 weeks altogether. I lost 35 lbs in one month. I felt almost like my old self again. I have a paraesophageal hernia and was taking Protonix. The doctors discontinued Protonix because one must have acid in order for the Ketoconazole to be absorbed.

Eventually I was in great pain. I had to sip my drinks and couldn’t eat sometimes without throwing up. Jan. 6 of ’08 I returned to the NIH and they did MRI’s, Ct’s, Octreoscans, etc. and still fould nothing. They think the tumor might be behind my hernia but with Cushing’s it is too risky to have the surgery for my hernia I am told. I got home Jan. 24 and was in more pain. I could hardly eat or drink.

On Jan. 30 I broke out in a cold sweat and started vomiting and then I had what I thought was diarrhea turned out to be fresh blood. My husband call for an ambulance. It turns out that I had developed an ulcer and it had a blood vessel in it that ruptured. I lost 1/3 of the blood in my body. The doctors told me I could have died easily. They were able to correct it with an endoscopy. I stayed in ICU for 2 days. I was discharged from the hospital just this past Mon. The idea here is to drink Coke with my medicine in hopes that it will produce enough acid to absorb since I must now take Protonix.

Tonight my ankels started swelling some and my arms are bruising. I am very frightened. If this medicine doesn’t work, and they can’t find the tumor, all that is left is an adrenalectomy. I hear that one never feels the same. Please someone, let me know.

Oh, I will be 48 on Feb. 12 and have always been healthy. I had never even heard of Cushing’s until I got it.

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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Rachel, Undiagnosed Bio

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Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.

I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.

When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.

Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.

Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.

Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.

Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.

Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).

Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.

Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.

I also gained an additional 30 pounds during this time.

>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.

Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.

2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.

Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.

Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.

2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.

Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.

Spring 2012: My menstruation returned to regular monthly cycles.

Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.

Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.

Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.

2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.

I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.

My menstrual cycles became irregular again and have stayed that way ever since.

Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.

Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.

I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.

I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.

So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.

I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.

My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.

Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.

Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.

My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.

My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.

I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.

I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.

I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.

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Meme’s Brother-in-Law, Steroid-Induced Bio

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golden-oldie

 

 

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.

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