I have been dreading typing up this email, simply for the fact that I would
have to recall horrible experiences over the past 15 months but no doubt that
will be of some help. I would like to thank you for your
generosity and taking the time to listen. So here it goes!
My symptoms began during the last two weeks of May '07, I had began
getting excruciatingly painful migraines to where I could not function at work,
and I also began feeling under the weather, extremely fatigued, aches,dizziness,
and nausea. I thought nothing of it, in fact, I thought I may have been coming
down with an off season flu, but to err on the side of caution I had made an
appointment on my day off to check in with my primary care doctor. When at the
appointment my doctor tells me that I have nothing to worry about
that I am probably coming down with a flu or something and for my stomach
troubles, I should just drink mylanta or take tums or pepto bismol. On
approximately May 31st or June 1st I had a very bad stomach ache, I missed work
and had to go in to my doctors’ office on an urgent appointment due to the
severity of the stomach pain. When i had gone in my doctor once again she tells
me that it is just indigestion and she tells me to get an over the counter
acid reflux medication and to continue Mylanta and Tums and Pepto and that it
should go away shortly.
My symptoms did not go away, I would weigh myself every week, when this began I was the biggest I had
ever been and was trying to lose weight through diet and exercise, in the last
two weeks of May I went from 236lbs. to 216lbs. and during those weeks I had not
been to workout AT ALL. I had been missing work and generally just
laid up in bed.
On June 4th was when I realized that it was not just a flu but
something else. I had tried to go into work that day even though I was sick as a
dog, pale, nauseous, and pretty bad abdominal pain, I took some Pepto
tablets for the nausea, Mylanta for the stomach pain along with Tylenol and had
tums in my pocket for the day, but during the drive to work my pain had gotten
so bad that I was doubled over while I was driving. When I got to work I immediately went to the bathroom due to nausea, the pain was so bad that I had to call the doctor ,the nurse tells me that
relative to where my pain is and how severe it is i need to go to emergency, and scheduled an appointment. When I had gotten to the appointment my stomach pain was really bad I was horribly fatigued and stayed on the verge of vomitting and I oddly enough had to use my inhaler for my asthma. The doctor I seen said that pain in my stomach was definitely something to watch out for, she said if the pain persists in that
area of my abdomen then I should come back in. Needless to say the pain persisted. I have had many tests done already but at this point in time, my primary doctor and my GI doctor and myself are all
stumped. I spend the limitless amounts of free time that I have, looking on the
internet for possible answers but always come up stumped again.
I have had two ultrasounds on my abdomen, I have had two ultrasounds
through the vaginal area, I have had three CT scans, one of which showed an ovarian
cyst the size of a grapefruit, that magically disappeared when I went in for the surgery. I have
also had an MRI, a Hideascan, an ultrasound of my gallbladder, an upper GI test
that was terribly painful, I had to swallow barium and some other fizzy
powdered drink and walk around for two hours doubled over in pain. I have also
had a lower GI test, endoscopy, colonoscopy.
Since all this time has passed my symptoms have gotten worse, I had
gone from occasional symptoms to symptoms ALL THE TIME! I have gone from Vicodin to Norco to oxycontin to morphine at 30mg to fentanyl patch, back to morphine but at 60 mg and that is where I have
remained to present time. I take 33 pills a day broken up between 14
presciptions, I take reglan, protonix, prilosec, morphine sulfate, belladonna,
bromocriptine, Hyoscymine, ondanesteron, singulair, levora, dulcolax, miralax, a
multiviamin, and a b12 supplement.
I had lost 30lbs. the first month my symptoms began, . Since then I have lost about 65
lbs more, I gone from wearing a womens plus size pants size 24 to wearing a juniors size pants in a 5. I have lost my appetite & has largely to do with the fact that if I eat I am in terrible pain that is actually debilitating, .The meds that my doctors have given me help a lot, but they do not
take the pain or any of the other symptoms away completely, I still suffer from
all the symptoms I have described just with less of an edge than before. Whenever I do eat something my face goes white as a sheet, I get incredibly pale and dizzy and nauseous and also I can’t just stand straight up from a supine position, I have to stand slowly otherwise I lose my balance and have actually fallen a few times. I have also had another surgery that may be unrelated but I amgoing to tell you everything hoping that it may be helpful.
I am writing you mainly because I am at my absolute wits end! My
life as I had once known it, is gone. My days used to be full and fun, I was
working at a job I loved during the weekdays and working at a couple of other
jobs I loved during the weekends, I would go out and have fun with friends,
everything was great with my family, I was just starting to date again, and then
this condition came and robbed me of the good life I am supposed to be
enjoying!! Now my days are full of my bedroom and sleep and pain, and struggling
to find something that I can try to eat that will not put me back in bed due to
pain. There have been many times that I have even questioned my sanity wondering if it is possible that I have
imagined this pain, if I have fooled myself into believing that I am sick, I even went as far as talking with a psychologist and a therapist, both agreed I am perfectly sane. Even though I question myself sometimes, I know with everything in me that there is a serious problem somewhere in my body. I have even tried to test my
pain out by not taking my pain meds on time and evaluating the pain with no
medication, and without a doubt there is something wrong.
My doctors have even taken out my gallbladder & has actually made my existing pain that much worse.
My bloodwork has made it a habit of showing that there is a problem
as well, as inconsistent as it may be. Blood tests in the beginning showed low
red and whites, next blood test showed high whites low reds, next showed fat in the
liver high whites normal reds, next showed inflamation from a c+ protein or
something like that I have test result of more recent blood work but the
previous ones were never sent to me, next my b12 level was low, next my
prolactin level was low, next I had high cholesterol AND I AM NOT EVEN EATING
ANYTHING!!!! how does that happen I wonder? next the other test for inflamation
was high but the c+ protein one wasn’t. All this time they keep telling me that
things are high or low but not enough to cause concern!
Anyway that is my story as much in a nutshell as I can fit, i I thank you for listening,
and if there is any advice or even just suggestions you can give me on what to
do at this point, I would appreciate it immensely and to no end. Thank You!
How often are they monitoring your ovaries for recurrence of cyst(s)? One the size of a grapefruit is...quite frankly, huge, and I can understand why that would cause a ton of pain. I would definitely explore the problems that could be associated with this a lot further. Perhaps, the cysts are growing and rupturing according to your cycle--do you notice any sort of cyclic tendency to your pain? I would recommend monitoring your menstrual cycle (including imaging of your abdomen/uterus during particular times) and charting your pain to see if this turns up anything. I'll let you know if I think of anything else, but it doesn't sound like food has anything to do with this (likely not gastrointestinal).
I hope you resolve this soon; I'll be praying for you.
You comment gave me the chills. I looked up this topic because I have the EXACT same thing. I was also at 236 lbs and am down to 214 lbs. I was dieting and exercising just like you and have been having the exact same symptoms. It comes and goes in severity. My doctors also say they have found nothing. I have had the same tests. How were you dieting? Low fat? Low calorie? Atkins? Please tell me. Strangely enough I suspected I might have a problem with my gall bladder too, but mine was not removed. What are you eating now? Is it helping? We should compare notes.
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