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Creative Misdiagnoses of Fibromyalgia
Many of us have experienced wrong diagnoses from physicians
we sought for help. There is a good reason (not excuse) for this. There are
many "symptoms" associated with this disorder and our worst symptom, at any
given time, dictates which type of doctor we visit. Also, it's bad enough that most
people never heard of fibromyalgia but most physicians have
never heard of it, either! Then there is the problem of some physicians who are so
insecure that they won't look a patient in the eye and say, "I'm sorry but I don't
know what's wrong with you." I prefer the truth to the nonsense that was told
to me over the years. The final complication lies in the fact that there are no
laboratory tests to confirm or rule out a diagnosis of fibromyalgia. Because of
this, some physicians think fibromyalgia isn't a "real disease." Wake up
and get your heads out of the sand. If we don't have a "real disease,"
then millions of us share a painful hallucination! In addition, if FMS isn't real,
then why would NIH
fund its research?
I would like to share some of the more "creative"
misdiagnoses I have experienced since I was 8 years old. I would also like to
include some misdiagnoses that you experienced so please send e-mail to cheryl@bnatural.com and I will post them here.
Hope you find these amusing. They are comical now but
they certainly weren't at the time they were made!
| A pediatric allergist, after not being able to pinpoint my
"allergic" symptoms, told me that I was allergic to my own bacteria (whatever
that's supposed to mean)(age 9) |
| An Ophthalmologist told me that my dilated pupils were a
sign of beauty (age 12). At least he didn't say anything negative. |
| Our family physician told me that I wasn't really cold but
my mother was having hot flashes so I thought I was cold. I know, it didn't make
sense to me then, either! (age 17) |
| The same family physician told me that my hypersomnolence
was caused by me "trying to escape from reality" (age 25). |
| A Neurologist at University of Pennsylvania, upon reviewing
my abnormal EEG, tried to convince me that I was epileptic! Then his colleague
said there was nothing wrong with me except that I was clumsy (age 26). |
| Another doctor at University of
Pennsylvania tried to convince me that they only way my weight could be so high was that I
was sleep-walking and raiding the refrigerator! (age 28) |
By this time, I almost completely lost faith in the Medical Community.
But then, I got lucky. Another physician at University of Pennsylvania, Andrew Winokur,
MD/Ph.D. hypothesized that I had a deficiency of norepinephrine. Now, 22 years
later, the pieces of the puzzle are beginning to fall into place and I am convinced that
he was correct.
Contributed Misdiagnoses
and Comments
| Went to urologist, cardiologist,
neurologist, endocrinologist/psychiatrist, pulmonologist, gastroenterologist. All said
weight was the problem and I was fine -- except gastro doc who said I have IBS.
Endocrinologist/psychiatrist said if I didn't eat I wouldn't gain weight and that I had to
learn to live with the pain! Wonder if they could lose weight if they couldn't
exercise-breathe well or do minor chores? Very insulting! |
I thought I was dying due to the extreme pain,
before I was diagnosed. I have experienced a sense of relief since my diagnosis, but am
still trying to control the pain, fatigue, and depression. I was always so active in my
life,
able to do many tasks at once, as well as very physically active. I used to workout 4 to 5
days a week for a hour or more with weights and aerobics. I think one of the things that
has me depressed is that I no longer can exercise like I used to and as a result I've
gained weight, which I feel aggravates my symptoms. I do find that mild aquatic exercise
helps, however I have a terrible sensitivity to the sun and cannot afford to join an
indoor pool. My insurance paid for 6 indoor sessions with my physical
therapist, but that is over now and I miss it.
|
| Being in the health care profession, I was told
by one of my doctors that I needed to do something other than sit around reading medical
journals. I wouldn't wish this on anyone! |
| Currently going to a Rheumatologist. He thinks
if he can get me to sleep all night, I will get a lessening of symptoms. Hope so!
Have many had success getting on Social Security because of this? |
| One doctor told me (while I was still having
extreme Lupus-like symptoms) that I was allergic to something and that I may never know
what it is and that was OK. |
| In my opinion, doctors are idiots --
you're very lucky if you can find one who cares and understands how you feel and truly
wants to help you feel better. I've struggled with doctors for years and have finally
found one that cares about how I'm feeling, takes the time to listen and helps me in the
end. Many doctors, at first, thought that I was crazy and told me it was all in my head
and I don't think it's very nice to tell someone they're crazy! Why can't they just
say "I don't know"? |
| I had been hurt at work. After a year of
undiagnosed pain, they told me I had fibromyalgia |
| |
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