Wednesday, July 30, 2014

Thursday, September 11, 2008 Donna, Community Member, asks

Q: I have a very high CPK test result. My doctors say, "that's probably where "I live".

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.

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Answers (27)
Cort, Health Guide
9/11/08 10:13pm

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

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Amanda Gonzalez, Community Member
11/ 8/12 9:20pm

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..

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Amanda Gonzalez, Community Member
5/15/14 2:54pm

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 

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phissith, Community Member
5/21/14 7:36pm

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

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Amanda Gonzalez, Community Member
11/ 8/12 9:20pm

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..

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Don, Community Member
8/ 5/13 8:14pm

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.

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mspilker, Community Member
11/11/08 1:06am

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.

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Donna, Community Member
8/ 3/09 3:06pm

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

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Art, Community Member
5/19/10 12:05pm

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

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eileen, Community Member
7/ 4/11 8:34pm

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

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61727joebob61727, Community Member
9/11/12 4:11pm

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.

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marjan, Community Member
10/13/12 3:54am

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.

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DeeDee, Community Member
11/ 4/10 1:16pm

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. 

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NoMoreCoffee!, Community Member
5/22/12 12:11am

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!

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ravi, Community Member
7/14/12 9:15am

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.

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sunil chug, Community Member
9/30/12 4:43am

please give me your doctor didi cell number & address

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ravi, Community Member
7/14/12 9:17am

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.

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Dwight walker, Community Member
6/16/12 9:13pm
What do you do to get batter my level is now 853 Reply
JS, Community Member
11/ 2/10 10:33pm

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.

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Cassandra, Community Member
11/13/08 12:38pm

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?

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Tina Caroline, Community Member
11/22/08 11:15pm

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

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Cheri', Community Member
2/ 5/09 11:10pm

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.....

 

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Shelley, Community Member
2/ 8/09 9:49pm

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.

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Rob fitzpatrick, Community Member
8/14/09 9:04am

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

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nick, Community Member
4/16/10 12:47pm

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.

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Sandy, Community Member
8/ 6/10 10:28pm

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.

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Bernice, Community Member
8/20/09 7:39pm

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.

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bradyw, Community Member
9/10/09 8:16pm

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.

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shell, Community Member
10/ 5/09 11:19pm

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?

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JILLYMAC1, Community Member
4/15/10 1:58am

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.

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Sasha, Community Member
5/ 6/10 2:08pm

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)

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Tomcat151, Community Member
5/ 8/10 5:12pm

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..

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jackie, Community Member
5/24/11 11:01pm

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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Sophia89, Community Member
10/25/11 11:37pm
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 Reply
Heatherlee829, Community Member
11/ 9/11 5:38pm

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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smk323, Community Member
1/12/12 3:07pm

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

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WFW, Community Member
2/ 6/12 3:51pm

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, Community Member
6/19/12 4:21pm

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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vyka sravanti, Community Member
1/31/12 10:55pm

'am consulting an ayurveda doctor.

 

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omsirvi, Community Member
11/11/13 6:21am

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, Community Member
11/11/13 6:23am

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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anonymous, Community Member
2/ 1/12 6:02am

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, Community Member
4/ 3/12 6:48pm

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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chapwil92, Community Member
2/15/12 8:11pm

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.

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richard6783, Community Member
4/26/12 2:58am

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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imafishm, Community Member
5/ 1/12 10:31pm

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.

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Joe, Community Member
5/16/12 3:11pm

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, Community Member
7/ 5/12 10:00pm

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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ankit sharma, Community Member
6/ 6/12 6:09am

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

 

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Mr. S, Community Member
6/12/12 5:51pm

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.

.

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dura, Community Member
6/19/12 4:51am
I have a very high cpk Reply
xray1gator, Community Member
6/19/12 4:13pm

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.

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DSCROSE57, Community Member
8/ 1/12 9:35am

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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gen p, Community Member
9/ 5/12 2:48pm

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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Donna, Community Member
12/12/12 12:35am

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, Community Member
12/12/12 4:44pm

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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ironmike, Community Member
2/17/14 8:06pm

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.

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By Donna, Community Member— Last Modified: 05/28/14, First Published: 09/11/08