[CO-CURE] NOT:Fibromyalgia: 'It's not all in my head'

[Guest guest]

'It's not all in my head'

  

It took five years and four doctors before I finally found

out I had fibromyalgia By Angie Gravois, as told to Lisa Collier

Cool, Woman's Day magazine April 2006

  

When I tell people that I’m on disability, they can’t believe it. 

“You look perfectly fine,†they’ll say.  I’m sure some of them

think I’m a hypochondriac or just plain lazy.  That’s one of the

frustrations of having an invisible illness.  Since I’m not in

a wheelchair or walking around with a cast on my arm, people

can’t see what’s broken.

 

For years, doctors couldn’t explain why I was in so much pain. 

There were even times when I wondered if the problem was all in

my head.  I didn’t know I actually had a relatively common

disease that can be diagnosed with a simple test.

  

The first signs

  

My symptoms began in 1995.  Despite a healthy lifestyle

(I didn’t smoke, wasn’t overweight and ate a good diet),

my body started aching all the time, as if I had a chronic

case of the flue.  I’d wake up so stiff and sore that I’d

hobble to the bathroom as if I were 80 instead of 28. 

  

After a long, hot shower, I’d usually feel much better. 

But when I was at work, as a registered nurse at a home

health care agency in Picayune, Mississippi, the pain would

gradually return.  By noon, I was so drained that it was all

I could do to get through the day, drag myself home and make

dinner for my husband, Keith, and our 1-year-old son, Kyle. 

I spent most evenings lying on the sofa.

  

Some days, a hot shower didn’t help.  I started calling in

sick more and more often, much to the annoyance of my boss. 

She’d make me feel so bad about taking a day off that I’d end

up crying, feeling even sicker.

  

MY ADVICE

 

If you think you might have fibromyalgia, or have recently

been diagnosed:

 

Consult a rheumatologist, an internist who specializes in

joint, bone and muscle disorders.  To find one near you,

visit rheumatology.org .

 

Get a “tender point†exam.  Because there’s no lab test for

fibromyalgia, doctors diagnose it by asking about your symptoms

and checking specific areas of your body for pain or tenderness.

 

If one treatment doesn’t help, try another.  It can take some

trial and error to find what works for you. 

 

Talk to other people dealing with the same issues.  To find

a support group, visit the National Fibromyalgia Association’s

website, fmaware.org.

 

My family doctor didn’t consider my symptoms – trouble sleeping,

widespread muscle pain and chronic fatigue – particularly

mysterious.  “It’s just stress,†he said.  “A lot of young

mothers feel that way.  You need to cut back a little and

spend more time relaxing.â€

  

I could understand why my doctor thought that.  Not only was

I working 45 hours a week, but I was often on call in the

evening or over the weekend.  But I knew plenty of other nurses

who also were working moms and they weren’t having the

problems I was.  So why was I different?  I thought my doctor

might be missing something, and I decided to get a second opinion.

  

By then, I’d developed burning pain in my hips and shoulders,

along with the allover achiness.  The second doctor blamed it

on bursitis, an inflammation of the joints.  But the pills he

prescribed didn’t help. 

  

My symptoms waxed and waned.  One week I’d feel terrific and

the next I’d develop some crazy new problem.  Numbness and

tingling in my hands made it hard for me to carry groceries or

fold laundry.  I became extremely sensitive to sounds, lights

and smells.  I could no longer stand loud music, even though I

used to love going to noisy nightclubs with Keith to hear our

friend’s band.

  

Activities as ordinary as filling my gas tank and frying food

on the stove made me feel sick, even though these odors never

bothered me before.  I was also having memory problems:  I’d forget

people’s names, mix up words or lose my train of thought when I

was talking. 

  

The most frightening symptom of all hit when I was shopping at

Wal-Mart with my son.  As I strolled through the aisles, I suddenly

went blind in my left eye.  I was scared to death, and I called

my mom so she could get Kyle in case I needed to go the hospital. 

By the time she got there, my vision had returned, but my head was

pounding. 

  

A neurologist diagnosed me with migraines and prescribed

medication.  That helped with my headaches, but no one could

explain my other symptoms.  I was tested for diabetes and thyroid

disease and had numerous X-rays, all with normal results.  All the

doctors would do was shake their heads and talk about stress. 

I began to wonder if they were right:  Maybe the problem was all

in my head.

  

A black cloud

  

Although Keith was unfailingly supportive and came to all of

my doctors’ appointments with me, I grew increasingly depressed.

I worried about the toll my illness was taking on our relationship.

When we got married in 1990, we spent the weekends going to parties,

going out to dinner or dancing at clubs.  Now I was too sick to

do any of those things.

  

At first, I told my husband everything, but then I felt like I was

complaining too much.  I began bottling up my feelings, which

just made me even more miserable.  I felt like I was walking

around with a perpetual black cloud over my head. 

  

Since I never knew how I’d feel from one day to the next, I

decided to quit my job.  Although that would make finances tight

for me and Keith, who is an electrical contractor, I was tired of

fighting with my box over sick days.  I opened my own health care

agency, so I could stay at home with Kyle and our younger son,

Logan, who was born in 1998.

  

Ironically, while most women complain about fatigue and muscle

aches when they’re expecting, I felt much better during both my

pregnancies.  During the last couple of months, I had some aches

and pains, particularly in my back, but even those weren’t as bad

as usual.  After both deliveries, though, the symptoms came back.

  

Although I wasn’t always well enough to play with my boys,

I found ways to give them the attention they needed.  If my pain

flared up, I’d lie on the sofa with a heating pad, they’d climb

into my lap and I’d tell them stories or look at picture books

with them.  On better days, I’d make it up to them by taking them

to the park or on playdates.

  

Finally, an answer

  

In 2000, I was visiting one of my home care patients when she

asked a question that changed my life.  “My daughter has just

been diagnosed with fibromyalgia,†she said.  “Can you get me

some information to give her?â€Â  Since I’d never heard of the

disease, which wasn’t covered when I was nursing school, I went

online.  My jaw dropped when I read a list of the symptoms:

idespread muscle pain, fatigue, sleep disturbances, morning

stiffness, numbness and tingling in the hands and feet, problems

with memory, migraine headaches, temperature sensitivity and

painful periods.  I had almost all of them. 

  

Through my research, I learned that fibromyalgia is a chronic

pain syndrome that affects 8 to 10 million Americans, about 80

percent of them women.  Although the cause is unknown, genes may

play a role.  Some doctors believe that sleep problems are also

a factor.  In some cases, the disease can be linked to physical

trauma, such as being in a car accident; repetitive injuries,

like those caused by factory work; or an illness.  In others, it

strikes for no apparent reason.

  

While there’s no cure, several therapies can help.  To find

out more, I attended a lecture on fibromyalgia given by a family

practitioner who worked in nearby Slidell, Louisiana.

  

The next day, I went to the practitioner’s office.  After

taking a detailed history of my symptoms, she gave me a

“tender point†exam, which is the standard method of diagnosing

the syndrome.  During the exam, she pressed on several areas of

my body to check for muscle discomfort.  The exam hurt, and I

couldn’t wait for it to be over.  She also did a blood test to

rule out other disease.

  

Afterward, she gave me the diagnosis: Since all 18 of my

tender points were positive for pain, I did have fibromyalgia. 

She prescribed an antidepressant which, along with elevating

mood, can also relieve pain and improve sleep. 

  

Most people would be upset to hear that they had an incurable,

chronic disorder, but I was relieved.  At last, I could tell

eople that I wasn’t just depressed, crazy or stressed out.  I had

a medical problem, and that’s why I was in pain all the time. 

ut while it was great to have a name for my condition, getting

treatment turned out to be harder than I’d expected.

  

I couldn’t afford the physical therapy the doctor recommended. 

My home health care agency wasn’t doing well, and I’d let my

health insurance lapse due to financial problems.  My pain and

depression got even worse, so at the end of 2000, I closed my

agency and applied for Social Security disability benefits.

  

Despite documentation from my doctor, I was turned down twice. 

Finally, after a three-year battle, I was approved for benefits

in 2003, and I also qualified for health insurance through Medicare. 

  

Feeling better

  

I was thrilled that I could finally get physical therapy. 

I went three times a week for six months. Through trial and

error, I discovered that a combination of yoga, stretching

and water exercises, along with an antidepressant, gave me

the most relief.  I also bought a little herb-filled pillow

that I heat in the microwave and apply to aching muscles.

  

By October 2005 I was able to return to work part-time.  I was

ecstatic to be a nurse again. And since my boss is also my family

doctor, he’s very understanding if I need a sick day.  He has

several patients with fibromyalgia, and when I tell them I have

it too, I can see the relief on their faces just hear they’re

not alone.

  

Remembering how I’d wished there was someone to help me when

I was newly diagnosed, I started a fibromyalgia support group,

which now has eight members, all women.  During our monthly

meetings, I bring a new book or research to share, and then we

talk about what’s on our minds.

  

It’s not easy to live with chronic pain, but having a circle

of caring people helps me deal with it.  And that, more than

anything else, is lifting the black cloud.

 

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