• Donna Donna
    September 11, 2008
    I have a very high CPK test result. My doctors say, "that's probably where "I live".
    Donna Donna
    September 11, 2008

    For over 10 years now, my CPK levels have run in the 300's - almost 500.  The norm should not exceed 150.  I was diagnosed with Fibromyalgia and wonder if anyone else has had this blood test with such high results.  And if so, what does your doctor tell you.

    READ MORE

FROM OUR EXPERTS

  • Cort
    Health Guide
    September 11, 2008
    Cort
    Health Guide
    September 11, 2008

    Thats interesting. I assume you've been checked for a disorder called polymyositis? That's a disorder that has similar symptoms to FM but with high CPK levels according to the page below. 

     

    http://www.medicinenet.com/fibromyalgia/page3.htm

     

    However according to the site below while your CPK levels are higher than normal, they are not nearly as high as in autoimmune conditions such as polymyositis, dermomyositis where CPK levels are in thousands. This suggests you're kind of in a limbo area where somethings going on but not at a severe level.  Medicine is not really good at explaining this kind of abnormal but not disease causing test finding. 

     

    http://www.hopkins-arthritis.org/ask-the-expert/myositis-011/elevated-cpk-427.html

    • Amanda Gonzalez
      November 08, 2012
      Amanda Gonzalez
      November 08, 2012

      I have polymyositis, or so they say.  My CPK level is 10,000 right now.  Over the last year i have been about 4000-5000 usually.  I got down to my lowest at 700 after IVIG but it doesnt consistently help.  Doctor seems surprised that i "dont have symptoms" - they expect me to not be able to walk, but really my fingers are sore and i find i get tired more easily at the gym... so they are very worried but i feel okay..

      READ MORE
    • Amanda Gonzalez
      November 08, 2012
      Amanda Gonzalez
      November 08, 2012

      I have polymyositis, or so they say.  My CPK level is 10,000 right now.  Over the last year i have been about 4000-5000 usually.  I got down to my lowest at 700 after IVIG but it doesnt consistently help.  Doctor seems surprised that i "dont have symptoms" - they expect me to not be able to walk, but really my fingers are sore and i find i get tired more easily at the gym... so they are very worried but i feel okay..

      READ MORE
    • Don
      Don
      August 05, 2013
      Don
      Don
      August 05, 2013
      My CPK was 18,800 and I will diagnosed with Polymyositis.  This was very high - even for polymysitis.  Over about 5 days and extremely high levels of steroids we were able to get the level down.  I have been tapering down prednisone and increasing methotrexate. READ MORE
    • Amanda Gonzalez
      May 15, 2014
      Amanda Gonzalez
      May 15, 2014

      update - i guess it has been 2 years since i wrote the above post.  I have been on only 10mg of prednisone pretty much 2 years now... which is the lowest i have ever been.  after all the IVIG i was around 2000-4000 range for a while and feeling good.  Doctors still upset / trying to get me to take stronger drugs.  I have been trying to get pregnant though so those are out- also still not getting pregnant...  Currently at 7000 as of today... not sure why, i have been doing 5 mile obstacle races, running no problem... even 50 pushups every day. 

        The other thing i have focused more and more on in the last 2 years is my diet and trying to eat more fruits/veg less processed food and i think this helps a lot, although obviously not for my #s... 

      so overall i guess i have made no progress from the "doctor's" perspective 

      READ MORE
    • phissith
      May 21, 2014
      phissith
      May 21, 2014

      Seemed like you check your level pretty often, how does one go about do that?

      READ MORE
    • RENEERSVP
      August 18, 2014
      RENEERSVP
      August 18, 2014

      Hi Amanda,

       

      How did they test you for polymyositis?

       

      I wrote to another member:

      Hello, I have had muscle pain, fatigue and brain fog for years!  I was 27 when I felt like I had flu symptoms that never went away. I was diagnosed with CFS and really didn't have all the symptoms. Finally, a doctor told me to have my CPK levels checked. Mine started at 817 and 1 year later are now above 1400. My pain is in my upper back. I appear perfectly healthy...exercise and eat right, I am in great shape. But, daily symptoms are horrible. I am scheduled for a muscle biopsy to check for polymysotis. My vitamin D and B leves are horribly LOW. I am completely deficient and not due to poor diet. I eat organic and have a huge apetite all of the time.

       

      Question, how have they treated your polymyositis?  How do you feel now? 

       

      Thanks for your time...much appreciated.

       

      READ MORE
    • Amanda Gonzalez
      August 19, 2014
      Amanda Gonzalez
      August 19, 2014

      Hi, 

      I never did the muscle biopsy since my symptoms were "textbook" polymyositis.  High CPK, mechanics hands,   (plus i kept asking them - would you change my treatment in any way if we did this?? and they would always say no, so it just didnt make any sense to me to do that procedure) 

       

      When it first started for me it was my upper back (like putting sports bras on and off was really difficult)  As well as the skin on my hands cracked open ALL THE TIME. 

      now - I feel great on the prednisone! i have been on it for 9 years now?? it made the pain disappear, i still have the #'s but at a 7000 i will feel fine, compared to w/o the prednisone at a 1500 i was hurting. I still am not "back to 100% normal" but much closer. 

       

      They treated it with Prednisone and we tried MEthotexate, Imuran, and some other one i am forgetting.... the thing is, anytime we would taper prednisone with those other medications i would get worse... so i didnt want to be on 2 medicines when i got the same results just being on prednisone! 

       

      Currently i have been on only 10mg of prednisone the last few years but have done IVIG the past 3 months.   It typically drops my CPK in half but only lasts about a month... so its like..... it works, but how long do you want to do it?  (also insurance pays for it, but its $50,000 per month! so i am thinking at some point they will be like.... this is too much?)

       

      I feel fine, but even a few months ago my levels spiked... without the prednisone i'd be much worse.. 

       

       

      hope this helps??  Good luck w/ your biopsy...

      READ MORE
    • RENEERSVP
      August 19, 2014
      RENEERSVP
      August 19, 2014

      Dear Amanda,

       

      THANK YOU for your quick response. Kiss My doctor believes there is an 'underlying cause' to the polymyositis. The biopsy can reveal a bacteria or parasite or perhaps something else.  That is the point of doing it.  Of course I don't want them to make a 2-3 inch incision and take a muscle out, but my doc won't treat me until he is 100% sure...

       

      People are misdiagnosed every day.  They label you with depression, Fibro or CFS constantly. Now they call it somatoform pain disorder...then you are labeled with a mental illness! Where does it end?

       

      I will go through with this and hope to help others.  I have sat in a doctor office in Beverly Hills years ago and Dr Jay Goldstein would have every ill person in his lobby popping different pills as an experiment!!  It's incredibly disturbing and depressing.

       

      I now reside in Miami and hope to have finally found the right doctor. I will write again after the results. I also did a 3 day intense stool test that has been sent off to a lab. It takes 3 weeks to get the results...but that is a VERY important test that conventional doctors MISS all of the time.

       

      Also, my blood work came back:  I am completely deficient in VITAMIN D AND B.  Low D is the cause of pain and B, no energy.  Now I am on great supplements.  Make sure your vitamins levels are checked properly.

       

      A conventional PCP will not check the levels properly.  AGAIN, WESTERN DOCTORS LOVE TO TREAT SYMPTOMS INSTEAD OF FINDING THE CAUSE.

       

      Best regards,

      Mila

       

       

      READ MORE
    • armevripidou
      October 07, 2014
      armevripidou
      October 07, 2014

      hey amanda , i will tell u the impressive part of the story. i have DM for like 8 years (or so they say). my case is IDENTICAL to yours . i have around 9-10k enzymes , but for the last 3-4 years around 5-6k . i was dignosed with 33k (thought) . anyhow i dont have many similarities with DM patients appart from a tiny "hips" weakness and maybe a bit on shoulders . and when i say i bit i mean litteraly like all the normal ppl . but sincei  was a special forces leutenant ,i realise the difference on that . anyhow i am thinking of making a second biopsy since the one i made in the past was 8 years ago since am suspecious that our contition is not in the DM brackets . anyhow i might be wrong thought . i wont check this page (i wont remember) so if u by any chance have any news - or updates ect let me know . Armando Evripidou is my facebook and armandos _Evripidou@hotmail.com my email . 

      hope u all the best

      Ps: am still supriced i found someone with so many similarities , since am in a group in fb about DM and PM and honestly i dont have many similarities with their case studies. (btw am 28 y old now ) thanks . and take care  

      READ MORE

FROM OUR COMMUNITY

  • Cassandra November 13, 2008
    Cassandra
    November 13, 2008
    I just got back from the doctors and had a CPK count of 2225. I am 25 years old, female. My doctor didn't explain it very well and is just running more blood tests for a recount. Is this extremely abnormal and what should I expect? READ MORE
  • mspilker November 11, 2008
    mspilker
    November 11, 2008

    My elevated CPK was running in the 900-1200 range for over 17 years before I was finally referred to a Rheumatologist who knew to check my lactic acid for a diagnosis

    of McArdles Disease, which is a glycogen storage disease. The lactic acid test is 2 parts.

    1st they take a blood sample with you at rest then a blood pressure cup is put on your arm and they jack up the pressure. Then you sqeeze a ball repeatly for 2 minutes. Then

    they draw another sample. If your lactic acid is flat that says that your muscles lack the enzyme phosphorylase which allows your muscles to convert glycogen into glucose. There is no treatment or cure..but Vitamin B6 does help..along with having some hard candy for the availabiliy of sucrose..Neither will make your muscle pain go away but they will help a little bit...for me the B6 is the difference between being incapacipated and being able to at least enjoy a little bit of my retirement..I had to take disability.

    READ MORE
    • Donna
      August 03, 2009
      Donna
      August 03, 2009

      My CPK levles are elevated too they are 2900 at this time.  My doctors can't tell me anything and I am having additional test done.  Can you give me any advice about this?

      Thank You

      READ MORE
    • Art
      Art
      May 19, 2010
      Art
      Art
      May 19, 2010

      Hi,

      I was once hospitalized with a cpk level of 40,000. yes 40 thousand. They said I had rhabdomyolysis.  The level went down after 5 days in the hospital, but they never came up with what caused it. I am also a person with chronic pain in my neck. 

      Art

      READ MORE
    • JS
      JS
      November 02, 2010
      JS
      JS
      November 02, 2010

      Thanks for the info, my MD has absolutely no idea what is causing my initial 14K level, now down to 6,900 2 yrs later. So at least now I can ask for a lactic acid test that hopefully might shed some light on this elusive problem.

      READ MORE
    • DeeDee
      November 04, 2010
      DeeDee
      November 04, 2010

      My CPK was in the thousands also with severe leg and arm weakness.  I was diagnoised with Polymyositis (treated with steriods) - my adrenal glands shut down.  Not too bad of a diagnoisis - treatable and getting better everyday.

      Hope this helps. 

      READ MORE
    • eileen
      July 04, 2011
      eileen
      July 04, 2011

      do you take stain drugs like lipitor or lipid. My dad was on high does of these two drugs and has high CPK and rhabdomyolysis. Hopefully things will reverse on him since they took him off of them and are flushing out his system with IV in the hospital

      READ MORE
    • NoMoreCoffee!
      May 22, 2012
      NoMoreCoffee!
      May 22, 2012

      Caffeine especially in coffee really raises your CPK levels - so if you're a heavy coffee or tea drinker or chocolate eater this could be a source of your problem! Also if you have "hypothyroid" this can greatly increase your CPK levels too! Caffeine also causes a host of allergic symptoms frm rashes to anxiety!

      READ MORE
    • Dwight walker
      June 16, 2012
      Dwight walker
      June 16, 2012
      What do you do to get batter my level is now 853 READ MORE
    • ravi
      July 14, 2012
      ravi
      July 14, 2012

      Dear Sir,

      Even I HAve The Same sort Of promble Can U Please Let Me know Which Doctor didi You meet. Can You Please Share The Details.

      READ MORE
    • ravi
      July 14, 2012
      ravi
      July 14, 2012

      Dear Sir,

      Even I HAve The Same sort Of promble Can U Please Let Me know Which Doctor didi You meet. Can You Please Share The Details.

      READ MORE
    • 61727joebob61727
      September 11, 2012
      61727joebob61727
      September 11, 2012

      It sounds like Rhabdomyolysis to me as well.  I was diagnosed with this as I had horrible leg cramps that disabled me from walking.  My CPK levels got to 109,000.  The doctors said it was the highest they ever saw.  They, too, never found what caused this issue and now my levels are not returning to normal so futher testing is going to be needed.

      READ MORE
    • sunil chug
      September 30, 2012
      sunil chug
      September 30, 2012

      please give me your doctor didi cell number & address

      READ MORE
    • marjan
      October 13, 2012
      marjan
      October 13, 2012

      my daughter is 14 years old and has the same problem.  6 months ago she had a blood test and her cpk level was 8000 .her doctor said she has polymayosits.after 6 months even she has used steriods and IVIG drugs the level has increased to 17000 and i dont know what should i do. day by day she feels more and more pain in her body specially in her arm and her leg. she walks hardly and day by day feels worse.

      READ MORE
    • RENEERSVP
      August 19, 2014
      RENEERSVP
      August 19, 2014

      Hello,

      Did you get a 2nd opinion?

       

      READ MORE
    • kapilmanggi02
      November 07, 2014
      kapilmanggi02
      November 07, 2014

      Hi,

             This is kapil from India. My son is eight years and facing the same problem of high level of cpk. Now these days he is unable to walk, even unable to stand. No doctor is saying any medicine for him. Please suggest me.

      READ MORE
  • Cheri' February 05, 2009
    Cheri'
    February 05, 2009

    I have had an elevated CPK count now for 17 years.  At first I was diagnosed with polymyositis....cpk count  13,0000 plus.   After several years on prednisone, I got it down to what is now considered a normal level for me 300-600.   However....in 2005, my levels got up again to around 6000.  My Rheumatologist said that I should be "flat on your back".  But I wasn't.  I was running around planning a graduation party for my daughter and having lots of activity.  At that point he said that if my count rose again to that level he would want to do another biopsy to see if I had been misdiagnosed years earlier.  Well,  haven't had a flare like that since, but I have heard about a disease call Mixed Connective Tissue Disease.  It is worth looking into.  I am going to ask my doc next week when I go in.  In effect it mimics lupus, scleroderma, and polymyositis.  I also have Myofascial pain syndrome.  Talk about pain.  Here is something that might help you too....go to Maxgxl.com/earners    I have been taking this product for a while and am really feeling better.  Good Luck.....

     

    READ MORE
  • Tina Caroline November 22, 2008
    Tina Caroline
    November 22, 2008

    Hi there,

     

    I am 37 years old and have been living in chronic pain for over two years, yes I have a CPK of 600- 900.(Plus, other symptoms).  I have been trying to get an exact diagnosis in order to recieve treatment so I can feel like a human being once again.  I have seen Rheumatologists/ Auto-immune specialists/and now a Neurologist.  All the Dr's tell me is that I have some type of Auto-immune disease, possibly MS.  I sincerely hope you feel better soon.

    Take care,

     

    Tina

    READ MORE
    • RENEERSVP
      August 18, 2014
      RENEERSVP
      August 18, 2014

      Hi Tina,

      Have you found help?  Did you ever have your CPK levels checked?

       

      Hello, I have had muscle pain, fatigue and brain fog for years!  I was 27 when I felt like I had flu symptoms that never went away. I was diagnosed with CFS and really didn't have all the symptoms. 20 years later and still a walking medical mystery,  Finally, a doctor told me to have my CPK levels checked. Mine started at 817 and 1 year later are now above 1400. My pain is in my upper back. I appear perfectly healthy...exercise and eat right, I am in great shape. But, daily symptoms are horrible. I am scheduled for a muscle biopsy to check for polymysotis. My vitamin D and B leves are horribly LOW. I am completely deficient and not due to poor diet. I eat organic and have a huge apetite all of the time.

       

      Hope you are now well and look forward to your update.

       

      READ MORE
  • Rob fitzpatrick August 14, 2009
    Rob fitzpatrick
    August 14, 2009

    i'm 49 years old male and my cpk levels have run in 2000 and i had lots of pain in my chest and throw out my hold body . i do have Fibromyalgia . and my dr has taking  lots of blood test . I'm on lots of meds . i have high blood pressure and high cholostal and diebetes .. but i been trying to find out why i'm am in so much pain . i have some good days and bad days.. Rob

    READ MORE
    • nick
      April 16, 2010
      nick
      April 16, 2010

      well your fibromyalgia will of course cause alot of pain. some days worse then others. my mother has had fibro for years and she has alot of pain. also she has MS. i myself have alot of pain and have seen many docs but with no diagnosis. they say its possibly MD and i am ready after years of not goin back to get a diagnosis to finaly get one so i can be treated. they believe it is neuro muscular disease. muscle twitching all the time.. sharp pains that feel like i am being stabbed. my cpk has been way up since i was at least 16. that when my first test was done. byopsys and electric shock crap.unfortunately your pain is casused from the fibro and probably other issues not yet known but the fibro is enough to casue the pain.

      READ MORE
    • Sandy
      August 06, 2010
      Sandy
      August 06, 2010

      It would help for your doc to "fractionate" the CPK, to find out if it is coming from the heart or skeletal muscles. You could have inflammation in either type of muscle, or could be a side effect if you are on a cholesterol lowering drug (a statin type drug). You should see a rheumatologist as well for other tests to find out why it is high and if you have an autoimmune condition other than fibromyalgia, such as myositis.

      READ MORE
  • Bernice August 20, 2009
    Bernice
    August 20, 2009

    I was just had a CPK blood test and it was 400.  My dr. said there could be musle damage and this could be why I have chronic pain all over my body.  I was also diagnose with Fibromyalgia.  He is sending me for further testing; i.e., EMG etcSealed.

    READ MORE
    • bradyw
      September 10, 2009
      bradyw
      September 10, 2009

      I just had one as well, the CPK-3 test was 233.  My physician is referring me to a Rheumatologist.  He suggested that I might have a genetic auto-immune disorder but needs to find out what type.  I've had muscle pain for years.  He had my yearly lab tests and looking back 10 years ago the levels were normal.  They have gone up every year since.  He called this macro CPK syndrome.  I do have fibromyalgia, arthritis, hypothryoidism, high blood pressure and am over weight.  I do however, hike a lot and walk all day at work.  My aunt had Lupas which is an auto-immune disease (I think) so now I'm wondering if this might be what I have.  Guess I'll know after the visit and tests to the Rheumatologist.

      READ MORE
    • shell
      October 05, 2009
      shell
      October 05, 2009

      about a week ago i started having bad muscle soreness in my legs that quickly went to my entire body.  it still hasn't gone away and i went to the doctor.  he did a CPK test and said my levels are at 21000.  he said this is abnormally high and has done another test and the levels have gone down to 16000.  he still isn't sure what is causeing it, but hasn't taken any steps towards making me feel better.  he hasn't given me anything or explained why they are high or anything. 

       

      also he checked for some liver enzyme and he said that it was also incredibly high.  i wish i knew what was wrong.  any ideas?

      READ MORE
    • JILLYMAC1
      April 15, 2010
      JILLYMAC1
      April 15, 2010

      Do you have thyroid problems?  I just had my blood taken and my cpk is at 3995 and liver enzymes are also high. I do have hypothyroid problems. I am on meds for the thyroid but I have lots of muscle weakness in the upper thighs and upper arms. I have a doctor appt. with a rehab doctor to see whats going on also. Thyroid doc. has no clue. I have had ultra sounds on the liver and its fine. Slightly normaly fatty. I've been tested for hep. Nothing. Thats good. But I am lacking vitamin D real bad. I am on 50,000 a week right now. It seems to help with the muscle weakness. Sometimes the muscle pain is all over the entire body. If I find out anything I will let ya know. Look up lack of vitamin D and muscle weakness. Good luck to ya.

      READ MORE
  • Shelley February 08, 2009
    Shelley
    February 08, 2009

    My daughter is almost 9 years old & has had an elevated cpk level for about 5 years now. Not one specialist can come up with an answer. No one agrees & we finally stopped taking her to all of them. I didn;t want her to be a guinea pig anymore. We've been to rheumatologist, neurologist, MD clinic, & have been given many different bones to chase. You are lucky you are an adult, pediatric specialists are hard to come by. We deal with her pain & treat as needed. She's been hospitalized, bee on steriods a few times but mostly we treat her like a normal child. Good luck, it's not an easy journey through the medical spiral even in this & age.

    READ MORE
  • Sasha May 06, 2010
    Sasha
    May 06, 2010

    My CPK was diagnosed at over 800 after I was treated for high holesterol

    by LIPITOR for a month. Holesterol got down but doctor get me off lipitor.

    Later I have had muskle pain and other misdiagnoses, like leicopma.

    Docrot sat to stop exesices. Now my CPK is to over 600 but I do some

    exesise.Lipitor is no-no for muscles (for me)

    READ MORE
    • Tomcat151
      May 08, 2010
      Tomcat151
      May 08, 2010

      When my CPK level gets high over 1000...I have heart palipitations...(A high CPK is basically Rhabdomyolysis) ...and the only way i have been able to get them down is with IV's...It is basically a Muscular Dystrophy ..I have been to specialists all over..Emery U and Jackson U ...the only way to know for sure is with a muscle Biopsy...I just had an IV today..

      READ MORE
  • xray1gator June 19, 2012
    xray1gator
    June 19, 2012

    Idiopathic Inflammatory Myopathy (polylyositis, dermatomyositis and inclusion body myositis) elevates cpk, and your cpk can be mildly elevated with these diseases, or be extremely elevated.  When I was first diagnosed with Polymyositis, my cpk was in the 300-500 range.  I had the symptoms of fibromyalgia too, and they tried to say the symptoms of elevated ck and muscle pain weren't related. Then I had the muscle biopsy by another rheumotologist and it came back positive for polymyositis.  Push for a muscle biopsy and don't let them just pass it off as "fibromyalgia" with an enexplained elevated ck. My ck is now around 3,000, but it was 4 years before it started rising that high, even though I've been on treatment.

    READ MORE
  • ankit sharma June 06, 2012
    ankit sharma
    June 06, 2012

    hi, i m from india, my cpk level is 1100 and my younger brother's is 665. our doctor suggest us to yoga

     

    READ MORE
  • Sophia89 October 25, 2011
    Sophia89
    October 25, 2011
    Back in early august I was admitted in a post ictal state after suffering Status Eptilepticus. Basically it's when either you have a seizure for more then 5 mins or multiple seizures without gaining conscious in between them. The post ictal state is when the brain goes into an alternate state to recover normally it last 5-30 mins but I was out for at least a night and entire day. I came to and knew immediately that I could've never woken up..not pleasant lol there's more but that's getting side tracked. The kidney doc told me my cpk level was over 143,000 and said it was the highest she's seen in her 20yrs as a doctor. Told me I should've been on an organ list and couldve died. I've learned cpks are let loose when an organ/s is threatened or your muscles are stressed. Most cases ppl who work out too much will have their cpks raised due to over working their muscles. In my case it was from seizure activity was told I basically ran 4marathons or 102 miles my neurologist said he was surprised that none of my muscles started breaking down. I will say hearing you could've died twice ( I seized again later that day basically raising my cpks again and went into post ictal state again came to and find out I'm in the ER) esp waking up knowing you could've never came to is the scariest thing ive experienced. Best thing to do if your in pain is to rest and drink Lots of water so your body can dispose the cpks READ MORE
  • imafishm May 01, 2012
    imafishm
    May 01, 2012

    My grand daughter was in the hospital this past week with extreme right shoulder pain.  She was atmitted when her cpk was 9200.  They did another after she was admitted and it had dropped to 8000.  They did not do another before she was discharged.  I know that this test for both cardac and muscle injury.  When she saw an orthopedic doctor he told her sh didn't have a muscle injury but a bulging disc in her neck.  I am wanting to know what could be going on.

    READ MORE
  • chapwil92 February 15, 2012
    chapwil92
    February 15, 2012

    Sophia98,

    I had rhabdomyolysis last spring and was in the ICU for a week with CPK counts at 145,000. The doctor and liver specialists said the same to me. Medical mystery. Neat to see someone else with such high counts. I was on the organ donors list at duke and unc. i ended up recovering, no doubt it was a blessing.

    READ MORE
  • ironmike February 17, 2014
    ironmike
    February 17, 2014

    I had unexplained highly elevated CPK levels for over two years.  My GP referred me to a Neuro and after doing EMG, APOLIPROTEIN E-4 BLOOD TEST, GLUCOSE TOlERANCE TEST, he still had no clue as to why my CPK Leveks were so highly elevated till one day my girl friend attended an appointment with Neuro and told him of my seeming to have a foggy short term memory.  About how from time to time I would forget driving directions that I was previously very familiar with.  She told him about how I had over the past six months or so began to act as if I didnt care about nurturing my relationship with her and lacked any sex drive and turned my back to her to avoid intamacy.  My Neuro's face lit up....he ordered me a  Brain PET SCAN.  He said he suspected Dementia.  PET Scan confirmed his suspision.  I was diagnosed with Fronto Temporal Dementia (FTD).  This FTD is like Alzheimers Dementia but it attacks the frontal and temporal lobes of the brain.  Alzheimers typically attacks the Rear regaions of the brain.  The longevity is Generally 5-10 years from onset.  I by the way am 46.  FTD generally has an earlier onset than Alzhiemers.  I have been having symptons that I can remember for as long as maybe eight to twelve years now.  Please dont rule out Dementia or Brain Degeneration if you have high CPK Levels for no  other reason.  Sadly there is no cure for Dementia at this time.  Hope this helps as sad as it is.

    READ MORE
  • Mr. S June 12, 2012
    Mr. S
    June 12, 2012

    I just got out of the hospital for an elevated CPK.   They diagnosed that I donate plasma too often, was sun burned and dehydrated and had a fresh spide bite on my back above my kidney.   They said it was muscular (heart) and needed to quit smoking, stay out of the sun to avoid heat stroke.   I have to go back in a week for more test.

    .

    READ MORE
  • smk323 January 12, 2012
    smk323
    January 12, 2012

    YES!! Thank God I read your e mail. I am upset today becasue  I was told today that my CPK is 1000. I have had fibro for one year.

     

    MY doctor wwants to do a muscle test (ECG?) then maybe a thigh biopsy.

    please e mail me

    steven

    skychai36@yahoo.com

    thanks

    READ MORE
    • WFW
      WFW
      February 06, 2012
      WFW
      WFW
      February 06, 2012

      OMG! It sounds like you are describing what my husband is going through.  He had the ECG test without good results and is scheduled for a biopsy on his thigh muscles tomorrow!  His CPK's have come down to the 300's from highs over 3000!  A recent MRI showed muscle loss and he can't walk.  Hope the biopsy give some answers.  Good luck to you Steven.  I'll post updates once we find out more.

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    • xray1gator
      June 19, 2012
      xray1gator
      June 19, 2012

      FYI-The muscle test is an EMG. I had muscle biopsy even though the EMG was normal. Came back positive for Polymyositis. CPK was around 500-700 to start. Was diagnosed with Fibro originally, but myositis and fibro can have very similar symptoms, except fibro does not elevate your cpk!  Now days its easier to call everthing fibromyalgia then spend time diagnosing you.

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    • RENEERSVP
      August 18, 2014
      RENEERSVP
      August 18, 2014

      Hello, I have had muscle pain, fatigue and brain fog for years!  I was 27 when I felt like I had flu symptoms that never went away. I was diagnosed with CFS and really didn't have all the symptoms. Finally, a doctor told me to have my CPK levels checked. Mine started at 817 and 1 year later are now above 1400. My pain is in my upper back. I appear perfectly healthy...exercise and eat right, I am in great shape. But, daily symptoms are horrible. I am scheduled for a muscle biopsy to check for polymysotis. My vitamin D and B leves are horribly LOW. I am completely deficient and not due to poor diet. I eat organic and have a huge apetite all of the time.

       

      Question, how have they treated your polymyositis?  How do you feel now? 

       

      Thanks for your time...much appreciated.

       

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  • Heatherlee829 November 09, 2011
    Heatherlee829
    November 09, 2011

    Anyone who has a elevated CPK test should have a chromosome tests, that should show if you have any genetic mutations, or or a deleted gene or a copy(XP.21). My daughter is a carrier of Duchenne/ Becker MD, (Muscular Dystrophy). If all genetic tests come back fine you should have more blood test to check your Kidneys, Liver, and every other test that can explain what is going on. I hope that helps you. God Bless

     

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  • LoveCoco August 22, 2014
    LoveCoco
    August 22, 2014

    Hello!  That is not very high CPK but still abnormal. You should have your Vitamin D and B checked.  Most people are deficient in certain vitamins and don't realize it. Fibro is just a label for a set of symptoms...not a disease.  Good luck!!

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  • Donna December 12, 2012
    Donna
    December 12, 2012

    Saw a new local (close to home) rhumatologist yesterday after 3 years of treatment @ U of MI for muscle biop diagnosed dermatomyocitis (necrotic muscle). The prescribed treatment, methotrexate with prednesone support has been successful with FEW flare-ups.  My CK (CPK) level is currently 1168, highest ever; experiencing no pain/discomfort symptoms, other than my overall strength is somewhat comprimized...age related???, I'm 74.  It will be interesting to learn the path my new doc will take for me.... if any. 

     

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    • Oldvettechick
      December 12, 2012
      Oldvettechick
      December 12, 2012

      I was diagnosed with dermatomyositis 2 1/2 yrs ago.  Had a flareup and waited too long and ended up in hospital for 4 wks and nursing home for 6 1/2 wks to learn to walk again.  That was 2 yrs ago.  Up until recently was on 10 mgs of prednisone, 17.5 mgs methotrexate and 2 days a month receive IVIG 90 mgs each day.  Was  doing great and needed total knee replacement and you have to go off metho. and had to postpone IVIG for a couple of weeks and am now in a flare up.  Yesterday my CPK was 800 and so I'm back up to 60mgs of prednisone and 25 mgs methotrexate for a while.  I usually get a red face and some fatigue first and then the muscle weakness starts.  The IVIG really controls it the most but is over $20,000 a month and some insurance won't pay.  But if you have good ins,. It's the best way to go as there are little side effects in infused slowley enough.  The reason for my knee replacement was that my femur collapsed because of having osteoporosis now from all the prednisone.  Good luck.  There is no cure, but it can be controlled with a little patience and lots of exercise.

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  • gen p September 05, 2012
    gen p
    September 05, 2012

    My CPK count is normal at 6k and if I am ill it goes up to 10k+.  Several people on my mom's side of the family have this issue, but none of us know what is causing it. 

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  • DSCROSE57 August 01, 2012
    DSCROSE57
    August 01, 2012

    my Docotors have told me I have Fibromyalgia, have had it for over 4 yrs now.   and just went to my Internist who sent me for blood work and my cpk level came back at 856, she said they reran it 3 times to make sure it was right, she has no idea why it is so high just told me that something was attacking my muscles did not tell me which ones, and said maybe it was my fibromylagia but even I know that cannot cause an elevated cpk level. My pain management doctor told me to ask my Caridologist which I see today. so I will let you know what she says. this is the first time I have had an elevated cpk so I am cluless. I have no idea why, I have only had some pain in both my knees and went to an orthopedic surgeon who injected cortisone into both knees, other than that the Lyrica that I take takes care of my fibromylagia pain, so I have had no weakness or pain in any other joints or muscles in my body. I will keep you posted as to what the heart doc says.

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  • dura June 19, 2012
    dura
    June 19, 2012
    I have a very high cpk READ MORE
  • Joe
    Joe
    May 16, 2012
    Joe
    Joe
    May 16, 2012

    For people here that have muscle pain throughout your body or have been diagnosed with fibromialgia, one explanation might be that you may possibly have multiple blood bacterial infections passed from a deer tick bite (Lyme disease) or lone star tick bite.  It's close to an unrecognised and unacknowledged epidemic in this country. Usually associated with outdoor workers, vetenarians, farming, outdoor/house pets, hunting and camping. A Lyme disease tick bite generaly causes a large bulls eye ring or similar rash which goes away in about 6 weeks.  Then severe flu like symptoms start with possible paralysis.  I spent 15 years with muscle pain and was about a year away from a wheel chair when I realized I had the classic bulls eye bite and started antibiotic infusion treatment for Lyme disease.  After treatment, I have residual damage effects to deal with, but am functioning a normal life now.    

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    • Johnette
      July 05, 2012
      Johnette
      July 05, 2012

      My 16 year old son has been experiencing muscle failure.  We first started noticing it in April when soccer season started up again.  He now has trouble climbing stairs and difficulty with his grip.  He was diagnosed with Lyme a couple of weeks ago 8 of 10 bands came back positive.  He is not responding to oral meds.  We taken him to both a pediatric infectious disease specialist and a neurologist.  CPK levels are "slightly elevated" according to infectious disease doctor.  Neurologist is suspecting MD and ordered an EMG and muscle biopsy. He also is hypothyroid.  Neurologist is somewhat poopooing the idea of Lyme causing CPK levels to be elevated.  I guess I'm looking for a glimmer of hope that this could still be Lyme and not a Muscular Dystrophy such as Becker's. By the way, there is a great movie/documentary called Under Our Skin available on Netflix which talks about Lyme and all of the many ways it is misdiagnosed.   

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  • richard6783 April 26, 2012
    richard6783
    April 26, 2012

    Hi.  I am 28 years old.  back in december I had a bloodtest done and it revealed that my cpk levels were at 570.  I was not told then however and just a week ago had another bloodtest done and it is now around 470.  I work as a doorman.  I am on my feet and lofting luggage all day.  I am freaked out.  Honestly Im really scared.  am I dying?  do i have like a cancer of some kind?  I could really use some info.  I am seeing my docs but I have to go to a clinic and it takes forever and its driving me crazy.  Please if anyone could help me out it be much appreciated.  thank you

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  • anonymous February 01, 2012
    anonymous
    February 01, 2012

    thank you so much for posting your experiences, I was diagnosed with hyperthyroidism last sept, and two months ago i started to feel some pain on my thigh specialy when i am sleeping few weeks later i feel pain all over my body, but what scare me most is the pain on my chest which last for for minutes then it will go and on my shoulder if  i suddenly move my hand or bend my body.my cpk level is 700. i had read from the internet that high cpk level can be a heart, brain or muscle problem.is there any one out there who can teach us how to lessen the pain? 

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    • Healing
      April 03, 2012
      Healing
      April 03, 2012

      One of the most important insight for this experience with pain and high CPK is to drink 2 or 3 liters of filtered water a day.  If you like lemon, put 1/2 a lemon in each liter.  We as a culture in the U.S. really haven't been guided or directed to hydrate nearly as much as each of us should drink water, and only water.  It is vital to our health and well beingness.  My CPK was very high, each attending Dr. in ER thought I just did Iron Woman or a tri-atholon.  I said I do weights and cardio and they truly have seen that that kink of work out with perhaps high weathe temps are brutal on one's body.  So, I have to back off for awhile w/the weights and I thought 3 liters a day was sufficient but apparently not with my age and the workouts I was doing.  So, my feeling is water (filtered only, good clean water) and a balanced work out with mindful vitamins, such as multi, B complex and not eating dehydrating foods or liquids.  We have to really watch how we support our overall intake so our bodies can stay balanced.

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  • vyka sravanti January 31, 2012
    vyka sravanti
    January 31, 2012

    'am consulting an ayurveda doctor.

     

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    • omsirvi
      November 11, 2013
      omsirvi
      November 11, 2013

      Hi, 

          My 5.5 year old son's cpk is 16100. The doctors say that he I suffering fro dmd. Do you know any ayurvedik doctors. PlZ reply. Mail- omchdhr@gmail.com

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    • omsirvi
      November 11, 2013
      omsirvi
      November 11, 2013

      Hi, 

          My 5.5 year old son's cpk is 16100. The doctors say that he I suffering fro dmd. Do you know any ayurvedik doctors. PlZ reply. Mail- omchdhr@gmail.com

      READ MORE
  • jackie May 24, 2011
    jackie
    May 24, 2011

    yes I just found out i have cpk, my level is 683 which is very high but i dont know why i have it, i'm daibetic, and have high blood presurer also. they have not been able to get it down.  jackie.

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