I am a 27 year oldblack male being seen by a rheumatologist. My cpk was found to be high at 765 while being seen at the hospital for chest pain. I have had a stress test to make sure its not my heart. They have also repeated my cpk 4 times so far and my highest result was like 1301. A rheumatologist check my aldolase, complent 3 4, and folic acid which where all elevated. She sent me for a muscle biopsy which did not show myositis. I am suffering with severe fatigue, debillatating muscle and bone aches. I belive they where trying to rule myositis. Just by looking online it seems it could fit the profile for lupus, but is that possible? My rheumatologist does not have any aswers for me. I just feel lost because I still have my symtpoms but answer of why and my cpk is still high.
This is the way my cpk found
weakness in th large muscles and later around the neck, shoulders and hips
my biopsy come negative to mytosis later develop pain in my muscle and rash
in the fingers at the Knuckes or over the elbows my cpk is in 9000 and no immune inflammation so my dr. said i have Dermatomyositis check for that that.
Afer stat the treament all go better
I had similar symptoms. I went to the hospital for chest pains and my cpk was eleveated (1,205). I have been going to a rhuematologist and my cpk has been between 1,200 and 2,100 with pain and weakness throughout my body. The biopsy did not show polymyolsitis but the Rhuematologist still believes it is has put my on prednisone for the last two months which helped but not enough so he just put me on methotrexate as well. You should talk to your rhuematologist about him putting you on prednisone to see if it helps.
I have never actually had a biopsy to confirm the myo, but because of the duration and symptoms, 2 of my docs agree that I have it. I go through periods of time that walking feels like my legs are moving through thick syrup and the muscles burn after walking just a short distance. I had higher than normal CPK result, and we attribute it to the myo. I also have calcium deposits around my orbital bones under my eyes, and tannish brown, shiny bumps that occur on my legs, feet and hands. The gp, neuro and rheumy chalk all the strange stuff to neurological damage, fibromyalgia which one of the docs will describe as poly myosistis, arthritis/degenerative joint disease, and degenerative disc disease just to name the highlights. I get tested every three months to keep an eye on the cpk levels, and if they go up, am retested every couple of weeks. So long as they drop, they just maintain me on the meds I am taking for "the junk" I already have. Have you had your thyroid, vitamin D, and iron levels checked? All three are know to wipe you out physically and leave you feeling like you have mono. If you are having a rash across your neck or face, it might be a sign for lupus. Auto immune issues seem to go along with neurological dysfunction from what I have see of the patients at my neuro and rheumy's office. It has taken 4 years to correctly diagnose and start thorough treatment for myself! We are still watching my symptoms as I have most of the ones for MS and lupus, but fortunately my blood levels are ok and I only have one spot on my brain. Take care!
Mim Gregg
Lupus is a pretty broad disease and most people fit the pattern for lupus in some way or another. The question is, do you fit something more specific?
It is not uncommon for muscle biopsies to be done too early, too late, or in the wrong place, and so you get a false negative result. Mine was indeterminate as to the type of myopathy.
You could ask for an EMG (electromyogram). A neurologist does it, it takes about an hour, and can give an indication of whether you have something other than a myopathy.
Also the pattern of muscle fatigue can help the diagnosis: Which muscles get fatigued? Is it the same on both sides of the body? What activities does it prevent you do? Do you get stiffness? When?
