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Elevated CK levels... should I be worried???

Posted , 32 users are following.

scottymar10
scottymar10

So I went to the ER yesterday, bc since Friday I have not been able to stand up for more than 10-15 minutes without getting so tired or light headed that i need to lie down. I have had off and on mild nausea and bad muscle aches in my back, stomach, and chest. The doctor did bloodwork which showed my CK level to be at 687 (normal is between 17-170). She said your levels could register high after a vigorous workout, but seeing as I have spent the last 3 days in bed, that wasnt normal. She said she wasnt offically "diagnosising me", but referring me to a rhemotologist to look into the possibility of muscular dystrophy.

Now I am kind of freaking out. I wasnt expecting that. I am a 33 year-old avid athlete. I have chronic muscle pains, but usually its always in the back, chest, stomach, or neck area... rarely my limbs. 

There never said what was causing my sudden lack of energy, light-headedness, and nausea. They said it could just be a virus but there was no way to tell and just sent me home. However, the possibility of having Muscular Dystrophy has me shaken. It sent me into a research mode while I wait for my specialist appointment next week.

I have found various causes for elevated CK levels-

* Heart Issues

* Muscular Diseases

* Tyroid Problems

* A Virus

* Vitamin D or B12 Deficiencies

Obviously, I am hoping for 1 of the later 2. The CK levels and my chronic muscle pains are the only thing leading her to suggest the possiblity of Muscular Dystrophy. Of course, it's not easy to put your mind at ease when you hear that.

Has anyone else on here expeirenced high CK levels before and know more about it? Is it possible that I just have a virus that has made me sick and weak the past week or so that is causing the muscle pain and CK level readings? Could it be something else?

Any input from someone who knows more about it than I do would be much appreciated.

Thank You.

 

1 like, 37 replies

37 Replies

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  • loren60893
    loren60893 scottymar10

    Posted

    Hi Scottymar10

    I know this was a couple years ago but I am suffering with exactly the same thing...symptoms are the same as yours and blood test showed high CK levels that was taken after inhad already had 7 days off exercise.

    It would really helpmmemtomknownwhat your story is now and if there is anything you did that helped?

    Will be mich appreciated.

    Thanks

    Loren

    • andrew37499
      andrew37499 loren60893

      Posted

      They will just put you on a drip to wash out the ck count, an tell you to come in a couple months down the line to see if it has gone down
    • keny89863
      keny89863 loren60893

      Posted

      Hey loren60893,

      Im experiencing similar symptoms as well even after days off from physical exercise.

      How is this turning out for you? Any updates?

      Will be appreciated.

  • andrew37499
    andrew37499 scottymar10

    Posted

    Nothing comes from it, at the time I was 19, I regularly train, on noo supplements only 5"7 aswell and I had a ck count of over 5000, I was experiencing heart/chest pains regularly before getting checked, and they told me they had no idea why it was that high, and kept asking me if I used steroids. I went for a blood test, got the bus home, sat down an got a phonecall from my brother telling me I need to go to the hospital right now, as expected I was panicking, but all that came to it was a drip over night and no explanation to my ck level.

    • martina94766
      martina94766 andrew37499

      Posted

      You should have a muscle biposy done to see if you might have Polymyosistis. My enzymes were very high back in 2009. It turned out I had Polymyositis. That is inflammation of the muscles. A Rheumatologist would be familiar with the condition.
  • fergusgal
    fergusgal scottymar10

    Posted

    I found this discussion while researching high muscle ensyme information.

    6 months ago I was diagnosed with Diabetes. 3 weeks ago my doctor started me on Lipitor to prevent high colesterol (my levels are normal at present). I started to notice in the last 7-10 days an unexplained weakness in my lower body with pain in my legs and hips. I am normally a very active woman of 63 but find myself so tired I can barely get through a full shift at work. Yesterday's blood test resulted in an increase in my muscle ensyme level to 213. I know this is nothing compared to what your count is and I can't imagine how much worse your symptoms must be.

    I have been taken off Lipitor and wonder if it's possible to get back to a lower muscle ensyme count or has the damage been done? My doctors office told me some times it comes down.......I'm not sure she was telling me the truth.

    Can anyone answer this question for me from experience?

    Patti

  • ricky64317
    ricky64317 scottymar10

    Posted

    I has a ck level of 29,000 at its highest. I was working out at the gym and possibly tore a sholder skeletal muscle. Possibly because the doctors couldn't tell me for sure since they never did any CT scans or ultrasound or anything on my sholder. But I had to stay at the hospital for 9 days to ensure that my ck levels would go down to normal.

    When I first got there my levels were around 12,000 and raised to 29,000 after 2-3 days. Then went down very slowly from there. I'm 38 and am not taking any anabolic steroids or anything of that sort. They concluded that I have rhabdomyolysis.

    Getting follow up blood tests today after being out for 7 days.

    Let you guys know.

    • joe27188
      joe27188 ricky64317

      Posted

      Hi any update I’m going through the same thing. Went into the er with cknlevels of 45,000 and it’s been a month and they still can’t find anything. 

  • eric37788
    eric37788 scottymar10

    Posted

    Hi Scotty

    First thing to do is relax.   Anxiety over long periods of time can throw off your bodies homeostasis, making exact diagnostics skewed due to unrelated testing markers. Read about elevated Creatinine Kinase; create your notes and associated questions.  Keep all these in a journal, including a chronological account of everything your currently feeling, along with anything that comes to mind regarding your pretesting *(elevated CK) physical history.  Go into your doctors appointments with as much information as possible.  Don’t just listen, but engage your doctor.  You are the captain of the team; the doctor is a tool you utilize, no different than medication, diagnostic apparatus etc.  Most doctors Ive come into contact with interact with the patient more positively, the more they know they educate themselves about their situation.  

    Everything you’ve mentioned are potential causal factors, but none are certain.  Muscular diseases ie., inflammation related diseases are common to CK elevation.  Read about each to become acquainted with the material, but “do not dwell” too long on any one potential diagnosis, unless you find it closely matches your current event history.   Most people will find the worst scenario and fixate on it.  This is counter productive and an ineffecient use of your time.   

    If you discontinued aggressive exercise days/week prior to your testing, then CK should have dropped, since exercise breaks down muscle and thus elevating CK; you should make sure you stay focused on getting answers and keeping monitoring consistent but not excessive unless formally diagnosed.  

    Power through this event, just like each workout you’ve ever had.  

  • CT89
    CT89 scottymar10

    Posted

    Hey everyone i just got my blood test back today and my CK level has come back at 1756. I have been bed ridden for over a year now due to a severely debilitated l5/s1 disc injury and am constantly fatigued and have no energy. I've trained since i was 15 and done weight training up until a year ago. I have not done any exercise for a full year now and don't know how it can be so high I'm quite worried because i do have muscle soreness, sore stomach and chest sometimes, muscle spasms, cramps, full body twitches that make me jump in bed and I'm always in pain. I've seen a rheumatologist had every blood test done everything is good though she has sent me to see a neurologist which i have in a few weeks. I did mention fibromyalgia and she said it could be possible. Does anyone have any idea what it could be and why my CK level is so high even know I'm in bed all day it would be much appreciated.

    • kw12193
      kw12193 CT89

      Posted

      Has your rheumatologist checked for sarcoidosis?  I was recently diagnosed with it.  I have a high CK level.  Other symptoms of sarcoidosis are fatigue, joint pain, a rash, shortness of breath, benign tumors called granulomas (that you can have without knowing).  It is an odd condition that has varying symptoms and is easy for doctors to miss.  
    • Zozobean
      Zozobean CT89

      Posted

      Im suffering with the exact thing. Im wondering if not exercising has anything to do with it? Im not an exerciser. Ive been told i have fibro but wondering if it could be lupus. Idk. But my level was somewhere aeound 350. So not that bad bit bad enough to scare tje jeck out of me! I get retested this coming week so hopefully it all goes back to normal. I have 2 folic acid deficiencies and i know b12 goes hand in jand with that. So could possibly be that since ive been out of my meds for a couple of months. Someone please help!!!
    • corinne88185
      corinne88185 CT89

      Posted

      Hey I know you wrote this 7 months ago, I’m a nurse and used to lift weights most days of the week. Always having a slow recovery, muscle cramping, aches and feeling like I’m bruised all over. Had bloods done as iron has been a problem and my CK levels came back 2300. I’ve also recently had a small l5/s1 disc bulge. Doctors have ruled out auto immune markers but I too have extreme fatigue, weakness, dizziness ect. Wondering if they found what was wrong? I’m waiting to see a rheumatologist haven’t been able to exercise longer then a slow passed 10mins due to the fatigue and dizziness.
  • rebecca59600
    rebecca59600 scottymar10

    Posted

    Hi scottymar10 just found your discussion while looking at co levels for friend. You're muscle problems sound exactly like mine and I have fibromyalgia. I know it's a massively talked about subject at the mo, but with proper guidance you can manage the pain. I find routine and meds are the best way for me. I broke my back 6 years ago which set off the fibro a few years later. At first the symptoms are debilitating fortunately I have an amazing doctor and that really is key to coping. I take quite a few different tabs and do some very very low impact exercises which all helps too keep me working. If you want to know me please let me know I'd be happy to let you know more.

  • linhealthfreak
    linhealthfreak scottymar10

    Posted

    Ehler's Danlos Nutrition Support (free facebook info page, no sales)

    B12 malabsorption is also linked with many different ill-health conditions, varying in individuals, including pins & needles, POTS, Raynaud's Disease, fatigue, seizures, 'air hunger', brain fog, forgetfulness, mental health symptoms, gastro symptoms, etc. It is important to test and read up before action. B12deficiency.info (no sales or links) is a thorough, easy to follow site. 

    Also, one in 20 people get joint pain with nightshade veg like tomatoes. 

    I hope you are feeling better.

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