at a loss please help
Fifty-six days ago, on June 20th, I woke up with a headache. I went to a family picnic and initially felt well, but by around 4–5 p.m. I had completely lost my appetite and began feeling mildly queasy and strange when standing. That evening, I noticed some breathlessness.
The following day, I again woke with a headache and felt unusually sleepy. Around 4 p.m., I suddenly felt as though I could not remain standing upright and needed to crouch down. I went for a nap and felt somewhat out of it for the remainder of the evening. Over the next couple of days, I continued to feel sluggish, breathless, and generally unwell.
For approximately the next 22 days, the predominant issue became severe tachycardia whenever I stood up. I underwent cardiac investigations, including bloodwork, a chest X-ray, echocardiogram, and Holter monitoring. Based on the significant orthostatic tachycardia, the cardiologist diagnosed me with probable POTS.
However, on day 23, something changed dramatically. Rather than primarily experiencing tachycardia, I developed profound, flu-like weakness and an overwhelming feeling of being severely physically ill. The best way I can describe it is feeling as though I have been poisoned or am fighting the world’s worst virus. This was not simply fatigue. It was a profound systemic feeling of sickness, weakness, nausea, and having essentially no energy.
Now, on day 56, I am still experiencing this. I feel incredibly weak and unwell, with very little energy, significant nausea, and episodes of dry heaving. My quality of life has become extremely poor because I simply feel physically sick almost constantly.
My investigations to date have been extensive. I have had nine CBCs, thyroid testing including TSH, repeated electrolyte testing, ferritin, urinalysis, a chest X-ray, and CT scans of my brain, abdomen, and pelvis. I also had an 8 a.m. cortisol level, which was slightly elevated. Inflammatory/immune testing including ESR, CRP, C3, and C4 was reassuring. Despite all of these investigations, my doctors still do not have a clear explanation for why I feel so profoundly ill.
Initially, I was treated with propranolol and was subsequently switched to bisoprolol approximately a month and a half ago. The bisoprolol dose was later reduced because I felt that I was experiencing adverse effects from it. I am now also taking midodrine, but there remains considerable uncertainty about what is actually causing my symptoms.
On day 51, I underwent an upper endoscopy. They found a 5 mm clean-based prepyloric gastric ulcer, which was biopsied. I am currently waiting for the biopsy results. This finding has caused me significant fear because I rarely take Advil or other NSAIDs, I do not smoke, and I do not drink alcohol. My father was also diagnosed with gastric cancer at age 63, so waiting for the biopsy results has been particularly frightening for me.
Throughout this illness, I have made a significant effort to stay hydrated, and my electrolytes have repeatedly been checked and have not suggested that dehydration explains what is happening. I have lost approximately eight pounds over the course of the illness, largely because there were periods when I was barely able to eat. Over the past few days, my appetite and food intake have improved considerably with my mom here helping me, but I still have not been able to regain the weight.
At this point, I feel completely at a loss. It has been 56 days, and I remain profoundly weak, nauseated, and systemically unwell, with episodes of dry heaving and virtually no normal quality of life. I have undergone extensive testing, yet there is still no clear explanation for why I became sick so suddenly, why the initial presentation involved such significant orthostatic tachycardia, or why it subsequently transformed into this persistent and severe flu-like illness.
I am trying to understand what could connect all of these symptoms and, most importantly, what the appropriate next steps should be. After nearly two months of feeling this ill without an explanation, I am increasingly frightened and unsure of what to do next.i cant do this anymore. i feel so green. so ill.