I feel like I’m slowly dying and nobody is helping

Posted by seekingsupport @seekingsupport, Feb 19 7:52pm

I’m at a complete loss. I feel like this is my one last ditch effort at reaching out for support. I only had Covid once back in the summer of ‘22. I was very ill for over 6 weeks and it affected my heart for about a month afterwards with pericarditis and tachycardia. I thought I made a full recovery because I was completely symptom free for over a YEAR. This past August I moved and a week afterwards I became ill again, (no covid but a myriad of other new symptoms including the return of heart issues). Since then I have progressively gotten worse. I’ve had every test done under the sun including an endoscopy, colonoscopy, MRI of my brain, countless EKG’s, tons and tons of bloodwork…I could write three paragraphs on all of the doctors and tests and debilitating symptoms. I was diagnosed with POTS in October. I have lost over 50 pounds and cannot seem to gain weight and I am continuing to lose weight. Nobody has answers except to take a beta blocker which lowers my already too low blood pressure and makes me feel even worse. I’ve been to the ER almost 10 times. I feel like everyone thinks this is psychological and they continue to gaslight me. Why are there zero resources for people dealing with this? I’ve been unable to work now for over 6 months. I’m living alone and it’s becoming hard for me to even care for myself. Where is the help? Why have we been forgotten? I have become suicidal every day because of how ill I am without any support. There is only ONE Post Covid Rehabilitation Clinic here in the entire state of Washington and I’m not scheduled to see someone until June! My heart feels like it’s failing and getting worse by the day. I don’t think I’ll be alive by June. Can anyone help me? I’ve joined the Dysautonomia International group but everyone in there has at least someone who is supporting them. My family has been awful, making it out to be severe depression or that I’m exaggerating to get attention since all of the tests come back negative. They tell me to drink more water, eat more salt and exercise. I went to the gym every day following the POTS protocol back in November and now my heart is much much worse. Someone please help me.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

drjennielaw | @drjennielaw | Feb 23 8:38am

Your story breaks my heart. I totally understand how you feel, though. I had COVID in March 2020, which triggered long COVID and type 1 diabetes (misdiagnosed as T2 until I got a new primary care physician), then I got a severe bout of COVID in December 2021 that worsened my diabetes, and I have had two milder cases. The first time I got COVID, it was so early on that I was told I should have been better in two weeks; and that symptoms including bleeding out of my ear, having no period for 3 months then having it every 2 weeks, severe tachycardia, daily fevers, severe fatigue, and shortness of breath were all in my head. I kept telling my former doctor that exercise was making me sicker- he dismissed that as me being lazy, and now studies confirm that exercise early in the long COVID sequelae can cause vascular damage and that postexertional malaise is a big part of long COVID. After my second round of COVID, I would get short of breath from simply talking, and I was in the bed for about 6 months, too weak to do much of anything. Now my fevers are up to around 100.5 every night (the model stating that a body temp isn’t a fever until approximately that temp are based on 150-year old data, and my basal temp before COVID was 97.6). I sweat all the time, my tachycardia wakes me up, and the diabetes is difficult to manage.
YOU ARE NOT ALONE. YOU ARE NOT CRAZY. The pandemic was severely traumatic, and for me, I was so scared for so long that I was going to die, just like you are feeling, that I could barely leave the house. I finally had to surrender to the universe, and practice mindfulness even though the brain fog worsened my ADHD.
Which means now when I feel like I’m dying, I tell myself “I am ok right this second and that is all I can focus on.” Because we could all die tomorrow from God knows what- people die in car accidents and other tragic unexpected events all the time. That’s not to sound morbid- it just helps me feel like I’m a part of a bigger picture, and the human experience is shared by us all.
I still haven’t started therapy for the trauma from the pandemic, because I am not ready. And I don’t mention therapy because I think my or your symptoms are in our heads but I do think the trauma caused by being so sick is severe.
Please hang in there.

bej39 | @bej39 | Feb 23 9:13am

In reply to @cindisue "Wow.. Your story and the others like you is SO SAD and So wrong that no..." + (show)

That's why I say save your few dollars you have left on a retired income do research fine people in the same boat as you are exchange information - I had a physical a few years back from my Dr. Blood work & all 1st BW wasn't sent in by lab- was asked by Dr did I go ha ha 2nd BW did make it to the lab was contacted by Dr. a year later asking me if I knew I had anemia answer yes and I purchased the 65mg of iron to take care o it Thanks in part to Google- just saying I'm 84 this ain't the 40'S 50'S or even 60'S 70'S anymore

cindisue | @cindisue | Feb 23 11:45am

In reply to @bej39 "That's why I say save your few dollars you have left on a retired income do..." + (show)

Wow....a year later the doctor finally contacted you??!! Omg....that is disgraceful and totally UNACCEPTABLE!!

law59 | @law59 | Feb 24 8:01am

In reply to @repl "You’re not alone. It feels lonely living in a world full of misinformed doctors who haven’t..." + (show)

@repl

You’re not alone. It feels lonely living in a world full of misinformed doctors who haven’t bothered to research and look up long covid. It seems the whole healthcare world gaslights what they’re ignorant of and then shame you! I have many choice words that are unprintable here for them!…

Please know that the system is broken, it’s not you. Don’t let their lack of knowledge/ignorance be placed on you as your shame. Or the ignorance of others (family) either. It’s theirs!
It’s honestly about finding only people who know about long covid to talk to. We are where you’ll find validation for what you’re going through.
Please trust yourself that you know it’s not in your head. We’re all here to tell you it’s not made up and NOT in your head! Also, there is hope and treatments. Don’t give up!

I think all of us here can relate to being dismissed right and left. I know I’ve been going through similar situations that you describe as well. I’ve been to specialist after specialist who look at me as if I’m mental, ER twice with no help, cardiologists, endocrinologists, rheumatologists, thyroid specialists, the list goes on…
I’m opposite of you where I gained like 40 pounds (full body edema) in 2-3 months and my whole life stopped in one day with severe shaking and heart palpitations, flushing, couldn’t sleep, felt like I was going to have a heart attack, full body shut down - my mind couldn’t follow conversations, my gut became severely constipated and bloated, my legs were giving out on me, even turning over in bed made everything worse. I haven’t been the same for over a year now…

The worst thing I did was listen to any of the doctors. They had no clue what was happening to me. They all looked at me, and weight shamed me as well as told me to exercise more and eat better -CHOICE WORDS! for them!!

I’m a doctor of physical therapy, I not only have been incredibly active my whole life and eat better then they do, I understand my body and what’s happening and know it’s not in my head. Yet, all the doctors still disregard both my knowledge and symptoms - dismissing me because I am a woman so it must be hormonal - bunch of small minded, lazy, uncaring individuals masquerading as doctors that shame patients for their lack of knowledge and ability. Seems the world is full of them these days.

Yet, there are those few who dare to question and go outside bounds to find new answers, as well as read research to find out how to help!

This is who you need to find. Don’t bother with anyone else, you deserve the best!

I had Covid in Europe at the end of 2019, and have had several trials of flare ups with my health since this time- one after moving, then got better after a year, to then trying to exercise and diet more which caused the worst crash ever!!

I finally took Paxlovid after my son brought home Covid again this last August. I felt better with Paxlovid! Like the best I felt all year!

I had hope for the first time in a looong time. My swelling decreased, my gut started to move again, my legs no longer felt weak, my mind came back!

I noticed it after taking 2- 3 days of Paxlovid. I could feel when the medicine kicked in, my energy boosted 1-2 hours after taking it.

I started to do research and found many articles on how Paxlovid rebound can be from poor viral clearance. And asked for more Paxlovid. I found a doctor who I sent all of my research to who finally agreed to help me while I waited to get into a long COVID specialist (6 months).

Here are ways to work around not having someone available to prescribe for you… use Amazon pharmacy and let them know you have covid. You can also use other online doctors and let them know you have covid. Omit telling them you have long covid, let them assume it’s acute. Also use different pharmacies to pick up from otherwise the pharmacist will not give it to you beyond 5.
My CYA: this is NOT medical advice merely my opinion of the things I did to get paxlovid since the system is broken and the only way I found help before I found my doctor.

It’s been tough getting paxlovid, lots of red tape around it as it hasn’t been approved for anything beyond acute covid for 5 days. But there’s been no confirmed research for long covid or long term safety data. For me, I’m willing to be an experiment because it works! I found taking a half dose of the nirmatrelvir each time has been a therapeutic dose for me and my symptoms. I get my labs tested every month or so and things are good 👍.

Maybe this is helpful?

Also, another really important component of healing is to NOT NOT NOT exercise! I know I know as a physical therapist I’m supposed to champion exercise as good for all health conditions. But for long COVID this is absolutely not true. I’ve been learning the hard way.

I’m realizing that although Paxlovid helps me and gives me the ability to increase my activity, it’s not a cure all. I have to do my part which is to let my body rest in order to heal.

For people with long COVID, our muscles and tissues are damaged by exercise and activity causing crashes and these need to be avoided at all costs. Learning to pace to AVOID any type of crash is the key to healing.

There are studies out there demonstrating this.

One last thing, you live in Washington, there’s Centers for Complex Diseases there that are forerunners for long COVID and CFS, HIV, etc. it’s a long waiting period but might be another option for you. As well as Mayo Clinics.

Please look on psychology today for a therapist to be your supporter in the meantime as well. Many have sliding scales.

My father committed suicide because of poor medical care for his disease, he felt hopeless and like no one was there too. Now I know how he felt. But so many people were there for him and loved him dearly. He has left big holes in many people’s lives and I know yours will as well. There is hope for treatment! It’s right around the corner. There’s hope for assistance too.

I know it’s hard trying to get assistance when the stupid doctors won’t fill out that you have long covid and need it. Meanwhile you have to wait 6 months!

I hope some of this helped?

Big Hugs of support! 🤗🤗🤗

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Hi @repl. I have read countless posts and know firsthand how on point yours is and literally teared up. My physical therapist is the only one in my healrhcare system who appears to “hear” and advises as you to take it slow, going on 3 years, while others still adhere to lack of knowledge☹️ I am not clinically trained yet ran multi specialty medical practices for over 20years having the luck for one of them being a world renowned pulmonologist I could seek advice from. He could not treat me, per my current health care system, and gave the greatest gift of acknowledgement for all I shared. I hope you find a way to share your invaluable insight on a national/world forum to help all who are affected by this very real medical challenge🤞 Thank you! And healing to everyone🌈

2herbalteasanchatter | @2herbalteasanchatter | Feb 29 10:09am

I hope this helps. Don’t give up.

For more information about the Post-COVID Assessment and Recovery Clinic and Long COVID research, visit: https://www.pennmedicine.org/for-health-care-professionals/for-physicians/covid-information/post-covid19-assessment-and-recovery-clinic-at-penn, or call 215-893-2668.

20mnthssick | @20mnthssick | Feb 29 9:03pm

In reply to @mh10 "You are not alone, I know exactly how you feel. I got Covid back in February..." + (show)

@mh10

You are not alone, I know exactly how you feel. I got Covid back in February 2023. I have been sick since then. I was bedridden for months . I’ve been to doctor after doctor, tests after tests. This affected every part of my body and organs and I have never been the same. There was a couple times I thought I was getting better just to be fooled because BAM everything came back worse.
I have so many symptoms which are too many to list, and I’m getting more even after a year of this. I have just about every symptom that you read in the support group. I switched neurologist, because my original one did nothing to help me. The new neurologist asked, am I seeing a therapist because I might need to. In other words, I’m taking it he thinks it’s in my head. SMH! I have been to more doctors last year and again this year more than I have in my entire life. I even went to U Of M emergency room when I couldn’t really walk and was so weak and they did nothing but send me home. They were useless. Not to wish ill on anybody but sometimes when I’m at the doctors when they’re trying to dismiss everything and saying everything’s fine, I wish to God they would get this, so they can feel what we do.
While waiting for my pulmonary doctor to come in last week, I was talking to a resident doctor, and he is the only one that actually believed, and said he read about every symptom I described and said long Covid is kind of like getting brain damage, and it affects every part of your body and destroys it. He was the only one that was honest, and did not dismiss it. When my pulmonary doctor came in, he dismissed it. I wanted him to fill out a handicap, placard application for me, because he did a temporary one for me last year, but I wanted this one to be permanent. He said. “ well I don’t know if they will approve this and you already check marked permanent on there and not temporary”. I told him very aggravated. “BECAUSE IT’S NOT GOING AWAY.!!!” so he ended up filling it out but I haven’t been to get it turned in yet.
And I understand what you mean about being suicidal because of all this I have no quality of life anymore. It’s a good thing I love my children and grandchildren more than I love myself, so I will continue living in misery for them. Do I think about just ending all this so I don’t have to suffer anymore? Absolutely!! Will I ever try to commit suicide.? Absolutely not, but I wouldn’t be opposed to being hit by a truck.
So just try and hang in there like I am and let’s hope answers will come soon!

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Your story sounds like a mirror image of mine. I have been sick for 3 years next month. Same
thing, in and out of ER's, labeled me as in my head. Mine comes and goes hour by hour. Joints, nausea, stomach pain, bloating, constant right sided pain, legs, vision, hearing, sweating, constipation all the time, detached retina. To be honest, my Guts hurt all the time. I have had 3 Colonoscopies, three Endoscopies, heart tests, every Gastric study ever recorded. Swallowed the Camera pill, not once, but twice. Every orifice I own has had something in it or coming out of it. Sleeping is over, about 2 hours a night, then I am up walking the floor
in pain. Even my family thinks it is in my head, it is not! Was always active, positive, never
depressed in my Life. Pain in my forehead is dominant daily. I refuse to take mind pills, so I deal with it. I cry a good bit now from the pain and dying body parts. NO ONE WANTS OR EVEN TRIES TO HELP ME, BECAUSE EVERTHING ON ME HURTS! I found one Surgeon who promised to not abandon me.
My discs are herniating and Thoracic pain is awful. He sent me to a Pain Management M. D., she listened and looked at me and said,"put a Lidocaine patch on it and see me in 2 months." They don't make enough Lidocaine patches to patch me. This is what I run into daily. Dying is not my fear, living like this is! I had two shots, then got Covid,
the Flu and Shingles within two months. I hope Fauci meets his maker, but not before he
contracts this crap. I am sick and fight this daily. My husband is sick of my constant moaning and groaning. Guess what, so am I. I have no hope anymore. I have been to 3 Teaching Hospital Doctors, who would not listen, 4 Gastro's, ENT who ruined my eardrum, 3 Primary
Care Physicians, Endocrinologist, Neurologists, Holistic Physician, Orthopedics, Cardiologists, Surgeons, Urologists. Saw a Psychiatrist and he did an evaluation on me, quoting I had a physical medical condition, but not mental/ asked why I was seeing him. I have spent
so much money trying to get well. I believed my Internist labeled me and it followed me
from one Doctor to the other, none would touch me, just passed me off to the next one.
Easy tactic to not have to deal with something they know nothing about. Good Luck and
pray someone will help us before it is too late! Oh, I also itch and stay tired all the time. Not a fun and happy life. I too, wish some of these Doctors will endure what I have for the last
three years. Maybe then, one would listen. Keep praying, maybe they will!

misslauren | @misslauren | Mar 1 4:44pm

I agree with everything you say and feel. I'm so tired of doctors and so many tests. I want to give up every day.

summerof42 | @summerof42 | Mar 1 6:49pm

I've been suffering now since the Fall of 2019. I am near the end, down to 83 lbs with over 40 symptoms and not one of the many doctors I've seen will listen or care to listen. When I begged to see my PCP because I'm so ill, can barely walk or function, the nurse finally agreed to let me come in. The doctor walked in the room and "you have 15 min and you can talk about 3 symptoms." I wanted to cry but now that I have 4 chronic eye conditions due to LT Covid, I don't have any tears. I begged him to please have compassion, listen and care and also tried to give him the paperwork for LT Disability. He refused and said, "give it to one of the many specialists you've seen, I won't fill it out." Here is a person, literally dying, skin hanging on bones.

I am now 68 yrs and suffering for so long. My symptoms worsened each and every month. When I had Covid my PCP wouldn't not help or prescribe any mediation and monoclonal antibodies, which to this day I believe would have nipped Covid in the bud and stopped it from invading my cells and organs.

I am alone and so scared. I wish I could be like many folks on this site who have a caring MD, spouse or loved one. Right now, I am in so much pain. I know my blood has been affected and blood flow. I'm freezing and even my nose and ears are freezing, skin on legs are bright pink and hurt so bad. My head feels like it's going to explode and ear pain, ringing is unbearable. My stomach is in such pain, and I have internal trembling and endoscopy showed multiple contractions, so the minute I eat it goes into severe spasms.

Covid is such a beast and dangerous weapon. I get so angry man created such a virus, angry the government didn't contain it and act quickly. I got Covid because the doctor in town wouldn't help and sent me to a large medical facility to see another gastrologist. I never should have went - that is where I caught Covid. Worse yet, the doctor I saw, said he couldn't help and it's just anxiety!

drk1942 | @drk1942 | Mar 2 6:05am

In reply to @20mnthssick "Your story sounds like a mirror image of mine. I have been sick for 3 years..." + (show)

@20mnthssick

Jump to this post

I am SO sorry. I also had 2 shots then Covid. (Had shingles after first shot.)
Had mini stroke, night sweats - my body’s electrical system is “off”constant fatigue. I have turned to supplements for brain and body. I am mostly cofounded by medical practitioners who ignore the “elephant in the room.” I trust Dr. Peter McCullough.

johnschuerman | @johnschuerman | Mar 3 10:58am

I can relate to your story. I was injured by the vaccine, then similar downward spiral, though I did not have the stomach contractions, I did have all the pain, sensitivity to sound and light, and brutal migraines. Don't give up, I'm 70% recovered now. Very little help from my neurologists at Mayo or elsewhere. THe most help i got was from the internet, learning from Dr Mobeen Syed. of course I had to work through my regular docs to get prescriptions, but Dr Mobeen has studied long covid and vaccine injury since the beginning, and is the most knowledgable doc I've found. I'm no doctor, but here are some things that really helped me: Low Dose Naltrexone, meditation, red light therapy, and CoQ10. I know of others that found Ashwaganda very helpful too. good luck

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