I am absolutely at my wit's end.
Background: I am a 23 year old female working on recovery from anorexia nervosa. I was hospitalized in July of 2013 for medical stabilization at around 95 pounds, 5'7. In the hospital, I gained 12-15 pounds, and was discharged somewhere around 108-109 pounds with stable lab values. I admitted to a day treatment program where I ate 3 meals and 2 snacks in program, and then lived in a supervised, sober, transitional living home. I do not know exactly how many calories I was eating at the time, but I think it was at least 2000-2500 calories a day. I was not exercising at all, had not changed medications, had not been sick, and was not using any illicit substances. Routine labs came back with a total creatinine kinase of 1800+. I was told to ignore the CK values by my doctor, but the treatment team was concerned. The following day, I developed severe muscle pain--it was something between a burning feeling, a cramping feeling, and a feeling that I had been exercising vigorously and my muscles were just giving out from weakness. Urgent care sent me to the ER to have my CK re-tested, and my CK came back over 2100. I was admitted for rhabdo, and treated with a TON of IV fluids and medication to manage the pain.
Following that hospitalization, I have had flares of absolutely excruciating muscle pain and weakness. My primary care doctor referred me to rheumatology, and after rheumatological tests came back normal, I was referred to the neuromuscular clinic for further testing. The nerve conduction tests came back normal, and the doctors and I decided that we would only pursue a muscle biopsy if my CK jumped again. The doctors went through my history, and I have had other episodes of CK in the 1000s, but the dates on those labs seemed to line up with times when I was doing very poorly with the eating disorder, and could easily be explained by starvation and/or over exercise.
In January of this year, I once again had routine labs come back with elevated CK. This time the CK was only around 900, but was still cause for concern. My levels were down to the 400s the following day. However, a week or so later I was admitted to UCLA through the ER. I have gastroparesis, technically idiopathic, but really 99% likely caused by the anorexia. I had not kept food down for a few days, developed severe abdominal pain, and decided to go to the emergency room, assuming I would get IV fluids, electrolytes, and be back in class the following morning (this had been the drill). Instead, I was admitted, and eventually had a G/J tube placed. At some point during that hospitalization, my CK spiked again, but to be honest, I was in so much pain and so disoriented most of the 2.5 week hospitalization that I do not know the exact numbers.
I now receive nutrients through the J port of the G/J tube. My weight is low but pretty stable at the 100 lb mark. My labs are more or less stable with the occasional spike in CK.
Initially, following the G/J tube placement, the muscle pain flares more or less subsided, and I thought (hoped?) that malnutrition was the cause, and that now that I could ingest AND digest nutrients, all would be well.
Unfortunately, that has not been reality.
Independent of spikes in the CK, I have flares of absolutely excruciating muscle pain and weakness. It almost feels as if the nerve endings in my muscles are on fire. My muscles will become weak, and I will be unable to sit upright or hold a pen. No cause has been found, although now that I have had more jumps in my CK, I AM having a muscle biopsy done soon.
My medical history is somewhat complex for a 23 year old. I was treated for ITP (immune thrombocytopenia) with Rituxan after prednisone, decadron, IViG, and IVrh all failed to stabilize my platelet counts. I had four infusions of Rituxan over a month first in September/October of 2009, went into remission, then repeated the Rituxan treatment after my platelets dropped again a year ago.
In addition to severely delayed gastric emptying (gastric emptying study showed 9% emptying after 120 minutes), I have elevated calprotectin levels in my stool, and have frequent diarrhea.
I seem to have Raynaud's syndrome, and several doctors have commented that I have discoloration in my skin--red-ish purple-ish splotching. My pupils are often, possibly always dilated.
I have had six or seven orthopaedic surgeries. I had a cardiac ablation for WPW in 2009, but still have inappropriate tachycardia. My ejection fraction dropped into the 30s a few years ago, but my last echo showed vast improvement. My blood pressure usually runs 90s/60s, but can drop into 50s-60s/low 30s. My resting HR is usually in the 50s-60s, jumping into the low 100s when I sit up. I have frequent PVCs and occasional PACs. I have not attempted to exercise for some time, but when I do cardio, I often have to stop quickly because I vomit.
Labs are generally stable, but I have recently had low Hg.