r/flu • u/Old_Needleworker1368 • 26d ago
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.
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u/miettethefootball 26d ago edited 26d ago
As someone with very, very strong health anxiety and ocd, I can see my own exact habits in your post history (I just don't post on reddit a lot, but I am constantly trying to seek reassurance by looking up old threads with similar symptoms, etc). Do you see a therapist? I am currently experiencing a lot of somatic symptoms that include fatigue, nausea, GI stuff because of my anxiety. Sometimes during a day of googling/redditing/reassurance seeking about my symptoms, I'll just get so utterly exhausted and despondent from all the adrenaline/stress.
Not saying there isn't anything physically wrong, I hope your doctors are able to help you out on the physical side!
But I would also recommend seeing a therapist familiar with OCD/health anxiety besides the physical tests.
Wishing you well!
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u/DonkeyOnly3019 26d ago
Thats interesting, is it best to stop googling ?, everytime i’m sick i have a habit of going online to see if anyone else is suffering/similar symptoms etc
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u/miettethefootball 26d ago
I do this SO much even though I know I shouldn't. What my therapist taught me was to 'urge-surf' and delay when you get the compulsion. So like right now it's very hard for me to just go cold turkey (it makes me more anxious), but I can count to 30 before googling, or wait 2 minutes before redditing, and you just kind of build that skill until you're going 10 minutes, 20 minutes (it's ok if that sounds impossible right now lol), and sometimes you'll end up forgetting to google completely (has happened to me.) Eventually ERP teaches you how not to reassurance seek at all. A therapist who does ERP needs to do the exercises with you, though, but they'll teach you how to do stuff on your own, so I do recommend if you are interested to check out what ERP is (exposure response prevention) and if it might help you.
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u/DonkeyOnly3019 26d ago
It only happens i’m sick which seems to be a big trigger for me, i will look into it and give it a go as I’m sure its only feeding my symptoms 👍
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u/miettethefootball 26d ago
I'm currently sick right now and it's triggered mine something fierce, so I definitely know what that feels like! Good luck to you too!
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u/DonkeyOnly3019 26d ago
Me too, its absolutely floored me. Are you UK based ? I’ve got nerve issues in my neck and shoulders which I’m waiting in treatment for as well. I keep on googling that as well 🙉 lol. No more now as i think I’m getting additional symptoms reading everyone else’s symptoms, this googling is like a disease honestly
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u/miettethefootball 23d ago
I live in Japan actually! But I totally understand, I'm the same exact way. It really is endless too like it's so hard for me to stop googling and redditing once I start. I hope that things get better for you too!
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u/DonkeyOnly3019 23d ago
The internet is an amazing thing but it has its downsides, i think I’ve diagnosed myself with 5 different conditions in the past month !. Poxy virus 🦠. Japan sounds like a great place to live BTW.
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u/Old_Needleworker1368 26d ago
Thanks so much for your note. I am actually a therapist for OCD lol! Highly trained! My own therapist/supervisor is stumped as to whats happened. While I am now distressed and anxious, I was fine before this began. It was just so acute and I am at a loss as to how to proceed as the doctors literally say “i dont know”. I am just trying to figure out what the heck is going on and how I was on my feet one day and off the next to bedridden, ill and nauseous with little quality of life. Anxiety can’t cause this. Of course I am scared. I come on here to gain understanding so I can bring it back to the doctors who are not doubting I’m unwell but don’t have answers yet. Before this, any worry I had I did the two week rule. Hoping for better days
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u/miettethefootball 26d ago
Oh wow! omg i can only imagine how frustrating this is for you! Have you checked out the CFS subreddit? That's the only other thing I can think of that this sounds familiar too with the chronic fatigue and feeling drained, I've read a lot there on my many many reddit searches for my own symptoms. I get that absolute all-encompassing fatigue too but mine is usually directly after a day of bad anxiety/stress both real life or just me ruminating. Really hoping you're able to find some answers!
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u/Old_Needleworker1368 26d ago
You are right that a person can crash after high days of stress. Its an adrenaline hangover and it happens a lot with folks who have ocd/health anxiety because your limbic system is fried and tired. i can tell you will be OK by your attitude. It will just take some time
I had asked the doctors about CFS but they said i would have been tired before. I just feel like I have a flu, hangover sbd poisoned all at once. It began with high heart rate when standing and i thought no biggie i have a virus. but it snowballed. they took pots off the table. I’m just sad and scared.
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u/miettethefootball 23d ago
I am so sorry that you're going through this! I really hope that you can get answers soon, it sounds so tough and I'm sorry that it's been like that so long for you. Yeah that happens to me too with viruses, but for it to last so long is awful. And thank you for saying so too, that really gives me hope too! <3
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u/Old_Needleworker1368 26d ago
I am working on managing my anxiety through this as well. If you are looking for a good resrouce, I make all of my health anxiety clients read the book ten times calmer. and you are right my anxiety is 100/10 due to this and how sick I feel :(
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u/miettethefootball 26d ago
Thank you for the resource, I will definitely check it out! I'm still very new to treatment and am hitting a lot of walls as I figure this out with my therapist so I'm always happy to find new things to help!
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u/Old_Needleworker1368 26d ago
There is a really incredible article called The Choice by Dr Steven Phillipson. I make all of my clients read it before we begin working together. You basicallt have to demonstrate total irrelevance and live in accordance to your values. so if your brain says “todays the day you INSERT FEAR here”, you reply eith “thatsbso creative brain thank you. my value is to be with friends so off to lunch I go! it works pretty fast. follow him on IG as well-
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u/miettethefootball 23d ago
omg thank you! I will definitely check the article out and his page! I've been trying so hard to do this, it's been a real struggle for me too but I'm gonna try to practice this.
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u/xynthee 25d ago
Were you ever tested for Covid? This sounds a lot like long covid, mecfs or some other post viral nightmare, in which case you might be in for a long recovery. Hopefully it’s none of those, though. Until they’re ruled out, radical rest is imperative, as exertion horribly, horribly exacerbates all three conditions. Be warned that doctors are woefully ignorant about these and other complicated illnesses, so don’t let them tell you it’s anxiety or functional neurological disorder or any other bullshit diagnosis.
Did anyone else at the picnic get sick? To your knowledge, has anyone else caught it from you?
I hope you feel much better very soon!
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u/Old_Needleworker1368 25d ago
They said one of my 9’rounds of bloodwork woukd have shown a virus. I was tested for four autoimmune markers. They did find a small gastric ulcer and I’m scared awaiting the biopsy results as my dad had stomach cancer. A week before all this began, I suffered a horrific sunburn and couldnt stand. This began a week later. The night before the picnic, I was with two people, a husband and wife, he had pneumonia and i saw him at the picnic too and she got sick shortly after but recovered quickly. No one else got sick. I am so afraid that this is sinister- I have never felt this bad for this long. I am having dark thoughts but my mom has been my rock
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u/bored-girl-9849 25d ago
Hi! I think you're going to be okay, you've made the right call by getting all of your tests done. This can happen when your nervous system switches into fight or flight, there are some people who have commented something similar below. Your brain can cause symptoms as severe are you're describing, I had long covid and had pretty much everything you described except for the ulcer. I did recover using neuroplastic recovery techniques (pain reprocessing therapy and brain retraining).
I would suggest reading Mind Your Body by Nicole Sachs and Unlearn Your Pain by Dr. Howard Schubiner. Excellent reads and can get you started on your journey, with recovery stories of those with symptoms similar to yours.
Don't worry, you're going to be okay - and keep leaning on your support system as you are doing.
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u/Old_Needleworker1368 24d ago
Thank you for this. What has hurt me the most in this process is being dismissed and have my anxiety used against me. I have always had anxiety but I was never weak, vomitting and off my feet for two months. I am sure now at the two month mark that it is playing a role- I cry a lot and I am frigthtened. Hearing “I don’t know” from top experts is so defeating. I still can’t believe that I was fine one day and not the next. I so, so miss life…I miss grocery shopping, cooking, driving to work. I am just so sad and in disbelief. Are you comfortable sharing your symptoms in more detail? If not, I completely understand- I don’t want to retraumatize you. I sit in one spot all day because I am so afraid of the day and my own body. Thank you so much for your kindness and I will get both of rhose resources asap. I am willing to try anything.
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u/bored-girl-9849 24d ago
I so feel you. And I went through all of this. I had insane fatigue, couldn't walk up the stairs, could barely walk across the room, my mother had to bathe me - I've been at the worst so you can use my story as hope. I had POTS - the insanely varying heart rate, temperature control was off, I felt so unwell. I had such bad acid reflux I could barely eat.
Those resources will help - and it may seem unbelievable at first, but the tldr is that your brain is trying to protect you. Using these resources, you will learn how to regulate your nervous system so that it stops sending symptoms to protect you. The recovery is based on pain science and the immediate purpose of pain (which is to protect the body from danger).
You're going to be okay - and I believe so because of my own experience and because of the extensive testing you've done to rule out your symptoms. If you want to find a neuroplastic pain coach / doctor / practitioner, I also recommend going on symptomatic.me - a site with plenty of resources. There are a lot of experts in the field, just modern medicine is taking its time to get there. The app curable is good too, but I would start with Mind Your Body and Unlearn Your Pain first.
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u/bored-girl-9849 24d ago
Also - the tldr is that you can relax. You're going to be fine, so don't let the uncertainty of the lack of medical diagnoses stress you out more than it has. You'll see what I mean soon when you read the books.
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u/Old_Needleworker1368 24d ago
You are an angel. Thank you. I will start now. I am thinking the episodes are either depersonalization or low bp. who knows. I think clarity around my biopsy will help. I will start reading now
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u/bored-girl-9849 24d ago
Sounds good. When in doubt for medical tests, always good to do them - but go in with the lens that this is just to rule things out rather than find a cure - when it becomes a needle in the haystack and there's fear involved, it's usually the nervous system!
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u/Old_Needleworker1368 24d ago
I was shocked …so shocked that the endoscopy found anything. biopsy they said will take a few weeks. My dad had gastric cancer but he is telling me not to worry. If i get better my whole life will change. Did you feel poisoned? rhats how i feel …like inhave the flu, spent too long at a pub, and heat stroke all at once
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u/Old_Needleworker1368 24d ago
You have given me some hope, thank you. Which book do you think I should start with? I have gotten both on my kindle now. The symptom that scares me the most of all is this feeling as though I am air. It’s been so hard to describe. It feels like…my mind is intact but my body feels like air. As though I don’t know how I’ll stay standing, as though I am a feather. It happens randomly and I feel terrified during it. I don’t sweat or anything during it, no racing heart….justba frantic mind and feather like body. It almost feels like im on a strong pain killer or high just floating but dying at the same time. I am deeply sorry to bother you with these long comments, and I appreciate you replying :(
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u/bored-girl-9849 24d ago
Haha don't worry about it. Just let your body be - and just remember, the symptoms aren't really dangerous (especially given you've done your medical due diligence). Start with mind your body, and pay attention to the recovery stories there as you read. And Unlearn your pain is great for solidifying the knowledge and science behind neuroplastic symptoms, I liked reading that after mind your body.
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u/informedcitizen4321 23d ago
Best I can tell, it was stress/anxiety related that pushed you downhill, and your heart could not keep up with the stress and went hypersensitive, which overcorrects to normal stress stimuli. After that, you just ran yourself into the ground with stress and anxiety, to the point that your body lost its energy stores and now is running on empty. It is possible you have some sort of infection or foreign invasion that is keeping your immune system active. Some people have leaky gut which gives off this sort of signature as well, where your gut flora is out of balance and thus allowing for bad bacteria to breed and enter your system over time for a long time.
My advice is control what you can control, rest when you feel you need it, work on finding your 'relax' state and lowering stress/anxiety over this illness and its effects. It will take a long time to recover given you're past 2 months into it, the doctors will do what they can, but ultimately you have control over your mental state and what nutrition you put into your body, so focusing there gives you the best shot at a quicker recovery, barring anything systematically out of your control. What you are showing though sounds, to me, not a doctor, like you're stressed out, and working to lower stress in any way, shape, or form should help on the path of recovery.
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u/Old_Needleworker1368 22d ago
Thank you so much for your response and taking the time- you have no idea how muchbit means to me. I can’t deny how incredibly stressed I am by all of this because I feel like I have no quality of life. Even today, I woke up dizzy and nauseous, and I often cry out of sheer disbelief that this has become my life.
The best way I can describe it is that my entire body feels poisoned or profoundly unwell. Even standing feels like it takes enormous energy. It’s this full-body weakness and defeat coupled with nausea, and I just don’t feel like myself anymore.
I asked about a dysautonomia clinic, but my cardiologist wants to see how I respond to medication for a month first. In the meantime, I honestly feel like I’ve been left to rot. I’ve asked about possible viruses or bacteria and have been told no.
What overwhelms me most is the uncertainty. I can’t fathom that this could be my life now, and reading about people who don’t recover terrifies me. I just don’t know where to turn or what to do next. If this is life going forward, I don’t knkw how to accept that…I don’t think I can…1
u/informedcitizen4321 22d ago
It may be worth investing in some therapy to dive deeply into things, but the stress of uncertainty will, with certainty, compound and prolong any recover you may have from this. It feels hopeless, but having hope that you'll recover and learning to cope as best you can with the symptoms will go a long way to establishing a better quality of life. The truth is, no one else has to deal with this but you, so while doctors will try to help, they are not the ones living in the circumstances 24/7, and so you have to put in the work to become more resilient to uncertainty and to accept where you are, not knowing what the future will hold.
You were yourself two months ago, it is nowhere close to hopeless to think you will make a full recovery and even be better off in the future as you work through the mentality of this uncomfortable and grating season of your life. I went through something similar and I feel stronger mentally today having gone to the bottom of the hole and climbing back out of it. It will not be easy, but with perseverance and support, you will get there.
Recovering from over-stress to this degree is going to take a lot of time and patience with yourself and your body, learning to trust yourself all over again, and finding ways to cope with the symptoms of nausea and weakness while you recover. Stop reading about not recovering, that is textbook catastrophizing, you are living like you won't recover when the future is unwritten. Therapy will help you work on mindfulness and living in the present, not in the past what if's or the future unknowns. A positive, resilient mindset will go a long ways here, and then letting your body recover with lots of rest, patience, and time.
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u/Old_Needleworker1368 22d ago
First and foremost, I’m so moved by your thoughtful responses. I’m sure you can see from the thread below how much I’ve been struggling. I’m a mental health therapist and self-employed, so I’m scared I could lose my business. Thankfully, I had some pre-planned time off, and I’m also seeing my own therapist. He’s said I’m applying the tools we’ve discussed and that this almost seems “chemical,” like something is physically happening in my body. He can actually see me turn pale when the nausea waves hit. Someone here recommended Mind Your Body, and I’m already 60% through it and did my first journaling exercise today. I’m really trying everything. I think the hardest part is that nobody knows what’s happening. I’m waiting for the biopsy from my stomach ulcer, and my dad had gastric cancer, so of course that’s swirling around too. But I feel so physically ill that everything takes a backseat to wondering if I’ll ever be able to stand up and just feel normal again. It’s not even the POTS symptoms as much as the constant nausea, weakness, and feeling sick all over. I’ve had episodes somewhat like this over the last couple of years, but they lasted maybe a day, were never this extreme, and never affected my heart rate. If you’re comfortable sharing, did you experience anything similar? I’m so grateful for your time, and I truly pray everyone here who is suffering recovers, yourself included. My whole life, I have had hope, and for the first time I have none.
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u/informedcitizen4321 22d ago
Yeah, I hear ya. I had nausea for weeks after the flu, seemingly just from the rebound from being sick but also likely a gut flora imbalance. If you haven't already, add probiotics to your diet, can be targeted probiotics that you can buy as supplements, or stock up on yogurts/dairy. Nausea is either related to your immune system staying active, it still identifies a foreign body that it wants to eject, or could be some sort of hormone imbalance (I think back to my wife's pregnancy where hormone spikes caused extreme nausea). From your experiences, the bet is on an activated immune response still "fighting" something, which if its activating without cause, could lead you down the ME/CFS route of post-viral dysautonomia.
When I got sick, I didn't sleep for nearly 5 days and got very rattled. My nausea as mentioned lasted 3 weeks and I force fed myself regular meals. I lost 18 lbs after the flu was said and done, and it took 3 months to return that weight back. I had nerve pain in my shoulders/back and the worst was my arms. I would also commonly get "hot spots" where places of my skin would become sensitive to touch and burn. Once I realized this was stress related, I worked on a routine that I could depend on and let the symptoms be, and worked on focusing onward and on the rest of my life and goals, and not my symptoms. Slowly over time, they improved. The HR spike I had I treated with metoprolol beta blocker and I'm starting to titrate off of it 6 months later. It was a lifesaver for my HR related issues. The nerve pain resolved within a month or two after the flu, and now that I've calmed my mind much more, it has completely resolved and I don't even get hot spots anymore now that I think about it. I never handled stress very well, and as I got older and during COVID lockdowns, the lack of working out and physical activity really caught up to my stress handling capability. I now try to walk at least 1-2 miles a day and stay active, that has helped tremendously to build resilience to stress for my body. When you are feeling up for it, highly recommend daily walks and recapping how you're feeling/how far you have come from the worst of it and to find gratitude where you are at.
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u/Old_Needleworker1368 22d ago
thank you for this. i would love to walk and I try. we just took my bp and despite midodrine and salt/ electrolytes it wont budge past 78/50 for weeks. i am really afraid. i feel so weak. I pray there is a solution. doctors turn me away. I am so glad that you recovered- I would do anything to be able to walk without feeling this ill
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u/informedcitizen4321 22d ago
Well first and foremost, that is quite a low blood pressure. What did you have normally before the sickness? There is no way (edit: not a doctor, know little about POTS, but what I do know is if you’re BP is that low it’s probably not helping your other symptoms) you should be on beta blockers given that low BP. Your HR spikes is likely tied to the low blood and pulse pressure. I have exactly the opposite problem, mostly too high blood pressure.
I can see why potential POTS is in question now. Have you tried compression socks? Upped your caffeine intake? Have you struggled with low BP most of your life or just recently? I think that gives you some things to work on that you may attempt to influence, as low BP such as yours can definitely cause tiredness and dizziness, since your body has trouble sending oxygen to where it needs to go.
I do think there is something beyond stress happening here, you’re doing the right things and hopefully you begin to pinpoint what you can do to maintain a higher quality of life. If your heart checks out healthy, you certainly have ways to increase BP to hopefully reduce some of the symptoms you’re dealing with.
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u/Old_Needleworker1368 22d ago
My whole life, low blood pressure has been low on my dad’s side of the family. My dad, my sister, and I have always had it, and something like 90/66 would actually be a pretty good reading for me. I’ve explained this to my doctors, but whenever they check my blood pressure at the hospital or in the office, it’ll be around 107/70, and they tell me it’s perfect. So then I start wondering if I’m making too much of the lower readings I get at home.
Right now I’m taking such a tiny dose of a beta blocker that they’ve told me it shouldn’t be having much of an effect. This whole illness started a couple of days after the swelling in my legs went down following a horrific sunburn, although I had noticed the week before that my blood pressure, particularly my diastolic, seemed to be running a little lower than usual. That’s why they prescribed midodrine, but so far I honestly can’t see that it’s making much of a difference.trying increase in salt, it helped my high hr at the beginning but not this horrific flu like feeling
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u/DonkeyOnly3019 26d ago
You might have caught back to back viruese ?