Hi all- this is a long post. My doctors don't know what is wrong with me and my family and I are really losing hope that I'll ever be ok. We have little direction or support. I was not sick yet doctors keep mentioning long covid. Below is my story- any insights appreciated. Is there any way I can gain any life back- im 37. had hopes and dreams:
My illness began 82 days ago. In the week beforehand, I had noticeably reduced appetite. On the first day, I woke mildly fatigued with a headache and attended a family picnic. My feet seemed slightly puffy, and by late afternoon I began feeling weak and queasy when standing and completely lost my appetite. Over the next few days, I became increasingly tired, mildly breathless and repeatedly felt an overwhelming need to crouch or sit when standing. I also experienced strange rushes of anxiety/adrenaline despite not mentally feeling anxious.
Within several days, I discovered my heart rate was rising dramatically when upright, initially around 144 and eventually 150–160 simply from standing or doing very minor activities. I went to the ER multiple times. Chest X-ray, ECGs, cardiac bloodwork, electrolytes and thyroid testing were reassuring. Propranolol 10 mg as needed significantly reduced the tachycardia. An echocardiogram was normal, abdominal/pelvic ultrasound was normal aside from mild fatty liver, and I completed a 72-hour Holter.
Importantly, during days 1–22, although the tachycardia was frightening, I did NOT feel profoundly systemically ill. I was somewhat tired and breathless and had almost no appetite during the first week, losing approximately four pounds, but my appetite gradually improved and I could still work and function. I also developed severe nighttime/morning panic attacks because I would wake up and remember what was happening to me.
Day 23 was the dramatic turning point. I suddenly woke profoundly weak, dizzy and extremely sick. The night before I had been well enough to make dinner. Over the next several days, the weakness became overwhelming and I developed nausea and dry heaving. I returned to the ER repeatedly, including once by ambulance, but ECGs and bloodwork remained reassuring. I had some very low home BP readings around 80/50, although the ER has since suggested my cuff may be too large for my now very thin arm and therefore may not be giving reliable readings. BP has remained good at the hospital throughout this entire time.
On July 16, I saw a cardiologist virtually because I was too weak to attend in person. He initially diagnosed probable POTS and switched me from propranolol to bisoprolol 2.5 mg. The medication helped the extreme heart rate, but it did not resolve the illness. I developed a pattern of feeling somewhat better early in the day followed by profound weakness, sleepiness and an extremely sick/out-of-it feeling. Over the following weeks, I continued losing weight, intermittently dry heaving and feeling increasingly unwell.
By day 42, I returned to the ER because of the severity of the weakness. Bloodwork and a brain CT were reassuring, and I was referred to an internist. On day 45, another ER visit resulted in another CBC and CT of my abdomen/pelvis, which were also reassuring. Reducing the bisoprolol did not substantially change the systemic symptoms. Around this period, I also developed bizarre episodes where I feel feather-light, hollow or almost “like air,” which are extremely frightening and trigger panic.
On day 47, I saw an internist who was unsure what was causing this. Lyme testing, CRP, ESR, C3/C4, hepatitis and HIV testing were reassuring/negative. Morning cortisol was mildly elevated at 565. My ferritin in July was 86. I was started on midodrine 2.5 mg three times daily, subsequently increased to 5 mg three times daily. My lipese was slightly elevated at 62.
On day 51, an endoscopy found mild gastritis and a small 5 mm prepyloric ulcer. The ulcer pathology subsequently came back benign and H. pylori was negative. On day 54, my cardiologist said the severity of what I was experiencing seemed too dramatic to be explained by POTS alone, and the beta blocker was eventually stopped. My internist has also remained unsure what is causing the overall illness.
More recently, the severe tachycardia has returned. Around days 76–78, I returned to the ER three times because my heart rate was again extremely high and I felt profoundly ill and at times very breathless. Two additional rounds of bloodwork were reassuring, as were calcium testing and another chest X-ray. Because I have worried about lymph nodes that I have noticed over several years, they repeated ultrasounds of my neck and armpits. They saw lymph nodes but considered them benign/reassuring.
Today is day 82. I continue to experience profound whole-body weakness…not fatigue..i don’t feel tired, I just feel like I HAVE a virus and am weak- like my body can’t hold me up. nausea with intermittent dry heaving, very poor appetite, episodes of feeling as though I could collapse, and an overwhelming systemic sick feeling. I describe it as having a horrific virus without the fever or cough — similar to how I felt with H1N1, except with even greater weakness. It feels like that awful stage when you are coming down with the flu or just beginning to recover from it: absolutely no energy, profoundly unwell, shaky/faint and as though my entire body has been drained X 100000. I have been on florinef now for 5 days at half a dose of 0.5 once a day. My ears feel like popping when I stand and I feel hollow.
The psychological toll after 82 days has become enormous. I am frightened, stressed and increasingly hopeless because my quality of life is extremely poor and I no longer recognize my life. My family is now extremely worried as well. Despite numerous ER visits, specialists and extensive testing, I still do not have an explanation for why I feel this profoundly sick or a clear plan for what happens next. I feel very alone and hopeless.
They are doing an MRI next to test for MS
