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I was following your question and see that you have a very high CK level which cannot be underestimated.
Do you have any weakness of your limb muscles?
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Not that I have noticed. I have been to the gym once a week with no discomfort.
High CK levels indicate damage to your limb muscles or heart muscles.
You mentioned that while doing gym, your urine turned brown. So, there was definite muscle breakdown.
Yes, I had done about 30 full chin ups and then once I couldn't do anymore I would do "inverted" chinups - I'd jump up and hold onto the bar an let myself down slowly for another 30 or so.
So, you will have to be tested for "musculoskeletal diseases" like polymyositis.
Definitely did some damage there. Arms swelled up a day later, urine turned brown, so I went to emergency.
Polymyositis is a type of inflammatory disease of the muscles.
They did some more tests there and went through 3 IV bags
Are you taking any medicines like Statins for high blood lipids?
I haven't experienced that since, but my CK levels are constantly between 5900 and ~7800
No, no medicines or vitamines
Alright. I would say that your doctors need to find out if you are having any diseases that causes myopathy or muscle inflammation and breakdown.
OK, what kind of test(s) would that take?
Like polymyosistis is one possibility.
Tests like electromyography or if necessary muscle biopsy.
OK, thank you. Any thoughts on the slight anemia? Could it be related?
You should also check for autoantibodies.
The anemia is likely consequent of the muscle protein damage , I am not sure but looks secondary to something other than anemia.
Please talk to your doctors about myopathic diseases.
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Now, the anemia was showing over a year before my CK levels were elevated. Maybe they are separate?
Hard to tell online, I know, but just thinking aloud.
Yes, I understand. Get a bone marrow biopsy done to get to the core of everything.
Ok, thank you.
You are welcome.
God Bless you!