possible misdiagosis

[liv1006]

I have been diagnosed w/ Fibromyalgia but I think it was incorrect because I have a highly elevated SED RATE and moderately elevated CK level.  This has happened aapprox. 3 years ago when CK level was extremely high (<700) and normal SED RATE. The first time it cleared up by itself in about 4 months, this time I've been going through it since February. Each time I am very weak, tired and have painful knee ankle, foot, e wrist, fingers,elbows.  ANA and RA is normal.  What else could spike the SED and CK levels????  I am a little overweight but not obese, I have a wonderful life, husband and beautiful children.  Should be on top of the world and I am accept for my symptoms!!!!   What else can it be.  Something tells me its not what has been diagnosed.

[patsy10]

Here is a good link:  fibromyalgia-symptoms. org

[patsy10]

There is no true inflammation in fibromyalgia.  People have pain and the other things you listed but lab work is normal.  There in no actual diagnosable inflammation. I'll try to find a link that states this.

[PlateletGal]

The CPK test measures muscle damage. Your physicians should do some more testing to find out why your lab test is abnormally high.

Best,

PlateletGal

[kitonthemoon]

I've just done some reading online, the following is a drect quote from WebMD which coincides with my understanding of the SED RATE:..............

~~~~~"The sedimentation rate (sed rate) blood test measures how quickly red blood cells (erythrocytes) settle in a test tube in one hour. The more red cells that fall to the bottom of the test tube in one hour, the higher the sed rate.

When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer.

There are many possible causes of a high sedimentation rate. For this reason, a sed rate is done with other tests to confirm a diagnosis. Once a diagnosis has been made, a sed rate can be done to help check on the disease or see how well treatment is working.~~~~~~~

As for WHAT IS FIBROMYALGIA (SYNDORME)?  Patsy, I believe it depends on how teh word 'fibromyalga' is used.  When it is refer to as in an illnees, I think it usually means FMS, which includes a mirad of at least 50 co-existing symptoms in which PAIN AND INFLAMMATIONS,,can be one of the most obvious and debilitating symptoms, brain fog, sleep disturbances, and neuro impairments,fatigue  are aslo very common.

It is a blessing that you have a wonderful life and loving family.  Hang on to what you are blessed with and try not to overdo should help you deal with the unknown, until you get another opinion.

Hugs,
Kit

[patsy10]

An elevated sed rate can indicate vasculits (inflammation of blood vessels).  An elevated cpk can indicate myositis (inflammation of muscles).  I would get another opinion.  Fibromyalgia basically means fiber and muscle pain.  It's not really a disease.  It's a group of symptoms.  There are is no actual inflammation or  abnormalitis in in true fibro.  So lab work would not be abnormal.  People can have secondary FMS from other disorders.  My friend was diagnosed with myositis through a muscle biopsy.  I wonder how you got the diagnosis of fibro when you clearly  had abnormal lab findings????

[kitonthemoon]

Hi there,

There're so many other possibilities for you to be feeling so week and awful, as Fibro symptoms relapses with so many other illness out there..... I would list all my symptoms down, and check ME/CFS diagnostic criteria, preferably the Canandian version.

Go by your gut feeling and go from there.   If I can be of any help, please feel free to contact me.

Hang in there.  
Kit