Time to Take Some Tests

You need to talk to your doctor about getting some tests

You need to take charge of your treatment options.

Dealing with fibromyalgia and chronic fatigue syndrome can be a daunting task. Feelings of hopelessness and despair are common in people who have this disease.  You may not be able to do everything but there is a lot you can do toward helping yourself get well.  Being proactive about your own care and treatment options is a good place to start.  Once you have a doctor that you trust there are certain things you need to discuss with him or her.

First and foremost you need to get as much patient education as possible regarding your illness.  In addition to the information your physician gives you there is a wealth of information online. 

Because many illnesses have symptoms similar to fibromyalgia and chronic fatigue syndrome you need to have a series of blood tests to rule out other possible illnesses.  There are other problems that sometimes go along with this disease that can be found with appropriate laboratory work. You need evaluation to make sure you do not have a thyroid or vitamin deficiency, anemia, elevated rheumatoid factor, or other complicating issue. Here are some tests to request from your doctor:

Complete metabolic profile (CMP)

Complete blood count (CBC)

Thyroid panel

Vitamin D level

Vitamin B 12 level

Rheumatoid factor and ANA

Your physician may recommend other laboratory tests.  You need to have some or all of these tests repeated each year.

My first series of laboratory tests at the time of the onset of my symptoms were all within normal limits.  However, two years later when the laboratory tests were repeated at my annual checkup, the test results showed I had a Vitamin D deficiency and a low B 12 level.  Both of these conditions can be treated with medicine.  I am doing many other things that have improved my condition greatly but taking Vitamin D and B 12 supplements has helped the healing process.

What laboratory tests have you had since receiving your fibromyalgia diagnosis?

Do you have any vitamin deficiencies or other complicating factors with your disease?

Is There a (Caring) Doctor in the House?

Finding a doctor who cares

Finding a physician who you can trust,
who will listen to you, believe you, and support you is essential .

Fibromyalgia and chronic fatigue syndrome have no known scientifically verified cause nor no known scientifically verified cure.  There are no outwardly obvious symptoms easily identified by others.  So your friends, family, and coworkers will not know how traumatic it is to feel so ill all the time unless you make them aware of what is going on in your life. This is understandable.  What I have difficulty understanding is the number of people I know with this horrible disease who cannot find a competent physician who believes they are sick.   I am shocked and astounded at the things I hear from fellow sufferers. They have been told by doctors:

You are just tired and overworked

It is a mental problem.  You are not physically sick.

You are just depressed and feeling blue.

I can't find a single thing wrong with you.

I don't believe fibromyalgia exists.

And I want to say.  "Oh really.  One day I was a perfectly healthy, active, energetic woman and now I am in so much pain and so constantly fatigued I can't function.  I am extremely sick.  And you are an incompetent, unfeeling, uneducated, unaware discredit to your profession.."

Fortunately there are also a lot of understanding, caring physicians who listen to their patients, believe their symptoms, and treat them with care and respect.  If you have been unlucky enough to have encountered a bad doctor, please don't despair and give up.  Keep looking.  Ask for recommendations from friends and family.  Find out which doctors other patients with fibromyalgia recommend.  Keep making appointments until you find the right doctor for you.

I have been blessed to have great doctors.  I am married to a family physician who is the smartest, kindest, wisest, most caring doctor I know. It is possible I am a little biased about that but I don't think so.  My current internal medicine specialist listens and responds to my questions and concerns.  My doctors support me, encourage me, and have helped me navigate the multilayered realities of dealing with a chronic illness.

Have you encountered people who do not believe you are sick?

Do you have a kind, caring, compassionate doctor who is helping you with your illness?

There Are a Gazillion Symptoms

The symptoms of  fibromyalgia are debilitating and overwhelming.
Hang on.
 There is hope.

When I first started experiencing the symptoms that would later be diagnosed as fibromyalgia and chronic fatigue syndrome I kept thinking I had a long term virus. Before the onset of this disease, I had been an active, vibrant, fun loving, positive, energetic woman.  I loved being involved in church and community activities, hiking through the woods, traveling with my husband, camping, shopping, working, playing with my grandchildren.  I was sure one morning I would wake up and feel like my old self again.  After an entire year of getting worse each day with no relief in sight I was at the end of my rope.  How could I possibly adjust to feeling this bad every day for the rest of my life?

My symptoms included:

pain all over my body in my muscles and joints

frequent high level pain in specific areas like my knees, elbows, feet

pain that increased with changes in weather

pain so severe that it woke me up in the night

problems with falling asleep and staying asleep

never feeling rested even when I managed sporadic sleep

unremitting fatigue that made it difficult for me to do the simplest tasks of daily living

an inability to concentrate

depression and feelings of hopelessness

This was so uncharacteristic of who I had been before.  I was the one who knew how to find fun and the positive point of view in everything.  I could make a trip to the grocery store an adventure.  What was happening to me?

Somewhere in the fog, pain, and fatigue the stubborn, determined, relentless me still existed.  I might not be able to get up and go but I could still grab the computer and look up and research.  So that is where I started.  Information gathering became my lifeline to hope and the possibility of something more to do with the rest of my life than sit down and wait for death.  

It's been three years.  I am better today than I ever thought I could be. Before I share what I found out and the steps I took toward healing I would like to hear from you.

What are your symptoms?

What distresses you the most about having fibromyalgia/chronic fatigue syndrome?

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Is There a Cure?

Fibromyalgia:  You Can Get Better

Fibromyalgia feels like a cascading waterfall of never ending symptoms that tumbles you into a hopeless abyss.  Pain and chronic fatigue become a daily reality.

I know the exact moment my encounter with fibromyalgia started.  On December 21, 2009 I had a severe allergic reaction to shrimp.  I went into anaphylactic shock, had difficulty breathing, was taken to the ER and given three doses of epinephrine before my lung function returned to normal.  A week later I had a typical winter virus.  After I got over the virus, I felt extremely fatigued.  Then I developed all over muscle pain.  At first I thought my body was just taking its own sweet time to recover from the double whammy of the anaphylactic reaction and the virus.  But the symptoms persisted and grew worse each day.

I had been working part time for four to six hours a day four days a week. I began to cut back on my hours until I was working only two or three hours a day.  By the time spring faded into summer, I no longer had the energy for even that and had to quit my job. Prior to the onset of this mysterious cluster of symptoms I was an energetic, outgoing, generally cheerful person who thrived on being involved in six things at one time. But now it was becoming increasingly difficult for me to complete the basic tasks of everyday living. My doctor did labwork and evaluation and then told me I had Fibromyalgia and Chronic Fatigue Syndrome (CFS).  He tried me on several different drugs to help control the pain but I had side effects with each of them.  It looked like my only choice was to somehow find a way to live with the symptoms.

For the next year I spent most of my time resting with periodic forays to the grocery store and stabs at keeping up with the laundry.  Everything I heard was discouraging:

"There is no cure." 

 "This can last for the rest of your life." 

 "Get used to feeling horrible every day."  

On the first year anniversary of my cascading tumble into the Fibro/CFS void, I made a decision.  There had to be something I could do to feel better.  I started reading everything I could find on Fibro/CFS.  I made some remarkable discoveries.  I am amazed that my symptoms have almost completely disappeared.  In this blog I want to share my journey with you, get your feedback on things that have helped you, and get the word out to the world that no matter what you have heard, or what you are currently dealing with, Fibro/CFS is not a lifelong sentence.  You can get better.  I am living proof that this is true.

 Was there any precipitating factor for your Fibro/CFS?

How long have you been sick?Pinterest