Testimonials
Lauri
My symptoms began in October 1991,
two months after my first baby was born. Between 1991 and 1995, although
I did not have a tender point exam, I was told informally by several doctors
that I had fibromyalgia and chronic fatigue syndrome. Then in approximately
1995 or 1996, Dr. Gerald Davidson, a Chicago D.O., gave me a formal tender
point exam resulting in a fibromyalgia diagnosis. Dr. Jeff Magaziner at
Johns Hopkins confirmed this diagnosis with another tender point examination
in the winter of 1999.
My symptoms included:
 |
Dull
headaches, almost constant pain in back of neck, upper shoulders,
and down the spine to mid back. |
 |
Profound
fatigue – disabling and unpredictable. I had to lay down to get through
the day. |
 |
Joint
pain in wrist, fingers, knees. |
 |
“Squirts
of pain” in base of neck up back of head – like electric current.
|
 |
“Gurgling
sounds” in back of head – annoying and weird! |
 |
Ringing
in ears, often. |
 |
Chest
pain – sternum and in middle of chest, off and on (EKG nonspecific),
severe at times, took breath away, elephant on my chest. |
 |
Achy
muscles in thighs and upper arms, calves – like the flu. |
 |
Cold,
clammy hands and feet – anytime air temperature changed or when slightly
excited or stressed. |
 |
Chronic
sinus trouble and sore throat – allergies bad in spring too.
|
 |
Fatigue
extreme – mental “fog” off and on, couldn’t think clearly or talk
intelligently, couldn’t remember things or keep conversation going,
had to make lists to remember if I took my meds! Couldn’t follow recipe
or handle details. |
 |
Vision
problems – blurriness, clouding over, sometimes couldn’t see at all/couldn’t
process what I saw. |
 |
Bright
light was uncomfortable – had to wear sunglasses much of the time.
|
 |
Dizziness
- sometimes vertigo with everything spinning, usually unsteady. Terrible
when I would move my head. I had a feeling like I was going to fall,
floor would tilt, felt as though I was swaying (people told me I was
swaying)! |
 |
High
heart rate – diagnosed with POTS (Pulmonary Orthostatic Tachycardia
Syndrome). |
 |
Sudden
flare up of mouth canker sores. |
 |
Dry,
crusty rash on cheeks, eyelids, forehead, and chest. Itchy, came and
went. Diagnosed with rosacea. |
 |
Fever
of 100º or less – off and on, lasted for
days. |
 |
Weakness
in hands – dropped things, usually my right hand. |
 |
Pins
and needles in hands and feet - intermittent. |
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Hot
flashes and sweaty upper lip – intermittent. |
 |
Swollen
nodules in left armpit, under left ear and left back of neck.
|
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Hips,
pain intermittent. |
 |
Extreme
pain base of neck, stiff neck, intermittent. Took muscle relaxants
so I could move my neck. |
 |
Extreme
thirst, despite drinking constantly, easily dehydrated, many trips
to the hospital for IV fluids. |
 |
Migraine
headaches, severe, vomiting. Took at least 24 hours to recover.
|
 |
Everything
worse right before and during period. |
 |
Bladder
– diagnosed with mixed incontinence, other times I couldn’t go when
I needed to. |
 |
Colon
– low motility, very constipated, symptoms of obstruction twice.
|
 |
Swallowing
funny sometimes – like I can’t get the muscles to move easily.
|
 |
Heavy
legs, hard to walk at times. |
In the spring of 1999, I read an article on the internet about someone
who had many of my symptoms and had been diagnosed with a Chiari malformation
at Johns Hopkins. Eventually, after having an MRI done, I met with Johns
Hopkins' neurosurgeon, Dr. Jon Weingart, who read my MRIs and diagnosed
me with a Chiari malformation. On May 28, 1999 I had craniectomy surgery
performed by Dr. Weingart.
My symptoms today are
occasional pressure behind my eyes after straining (shoveling snow) and
I still have rosacea and little hive-like bumps on skin occasionally.
That's it!!!