Have Metabolic Myopathy
Jun 8, 2014
I have been dealing with this myopathy for over 11 years. I have had bad "flare ups" before, but right now I am so sick I am barely able to sit or stand. It all started when I woke up one morning and every time I would breathe everything stinks and it has been downhill from there. I feel sick and really weak. I have a lot of pressure in my head and ears. My shoulders hurt, my left foot goes numb and at times it feels like every nerve in my body is firing at the same time. But the worst part is the back and stomach pain, and I can't understand why. It is all on the left side and it really hurts, feels like my spleen is the size of a basketball and goes all the way to my bladder, have only had one episode of incontinence. I am so sick and so tired ...
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I have had so many tests done and so many different answers I'm at a loss and so are my Drs. I have tested positive for RA in the past year - now I don't. My hands are swollen and painful and I experience changes in pain and swelling with temperature. Tingling and numbness only in my right hand. Where it gets weird is that I am having serious continuous cramps in my right leg that prevent me from walking properly. My right leg is also now considerably smaller than my left leg. I feel like the leg is going to snap and I get numbness and tingling in my right foot. Massive pain. Potassium, calcium and every is normal. All my enzymes are always all over the place. Liver is usually high. Total ck after walking to one of my appts(half mile, right leg started cramping) was 2258. My condition gets worse with exercise, muscles burn. Dr did an emg, but the results were in no means definitive. Wants a muscle biopsy but I cannot afford it. Oh and total ck is not high at rest. Lactic acid is elevated, not very high. I don't know what to do. I am in so much pain. My joints hurt too. I got a shot of humira and it helped for about 3 days and then I all of a sudden got staph in my right elbow bursa so I had to stop it. I can't extend my leg at this point. Icy hot, salonpas, nothing helps. I am also experiencing fatigue and aches all over my body. What advice does anyone have? What do you think could be going on?
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I was diagnosed w/ Metabolic mitochondrial myopathy over 10 years ago. Right now I am struggling with the worst illness I have ever had. Started about 5 weeks when I woke up I noticed every time I breath in it stinks. Since then I have gotten weaker and very sick. I have bouts of vomiting, diarrhea, constipation, my head feels full, burning pressure in my ears and sinuses. My shoulders hurt so it feels like my arms will fall off. I also am having problems with this weird pain in my back & stomach, it feels swelled and I feel raw all the way down to my bladder. At times it feels like burning raw sensation all over. My face feels numb and my left foot. I know this makes me sound crazy, it is making me crazy but I just can't seem to will myself to get better. Every day I wake up with some hope and it's the same thing every day. All I have had was a z pack of antibiotics witch seemed to help a tiny bit,(I am able to sit up a little longer)but I can't stop feeling horribly sick & weak.
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Muscles in thighs, neck, face weakened as a result of taking statins. Can't do stairs, get up from a chair, get on a bus and the list goes on . Off the statin and hope that things will get back to near normal. If anyone is suffering from this drug, please share what is happening and what you are doing about it.
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I just had my metabolic panel and here are my numbers:
Just wanted to check on if i am at a 1.6 creatinine level; is my kidney gone?
Creatinine - 1.6 (high)
Total Bilirubin - 1.3 (high)
Potassium - 3.5 (low)
Glom Filt Rate, EST - 51.4 (low)
History:
From 2008 to 2013 ( I was suffering from hypertension and was on blood pressure medication - my numbers between 2008 to 2013)
Old Weight -- 193 lbs
Old Blood pressure -- 145/90
Workout -- none
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Whilst taking orlistat, i am also taking anti depressants which is what made me put the weight on in the first place. My doctor said i would probably loose more weight if i wasn't on the anti dep. but i am not at a place where i can come off them at the moment.
What i wanted to ask you was if you could ask your nurse if there is anything i can do to boost my metabolic rate/weight loss.
Have you noticed more weight loss when eating certain foods. I was told whilst on slimming world that peas and strawberries are good weight loss foods. But i can't live on them.
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