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.

BeBold | @bebold | May 24 12:20pm

Hi. I don't know if I said this to you before but I ended up with a myriad of symptoms about 10 years ago after moving. Found out what they thought might be lung cancer after a CXR and being so sick, something showed in my lungs It turned out to be toxic mold. 6 months after I moved ahain after living in it for 2 years I was back to normal.

POTS is an autoimmune disorder. Mold triggers autoimmune. I have POTS from long covid too but the timing with your move triggered my memory. I ended up on oxygen at night from it and the "lung tumor" she thought for sure was cancer, didn't light up on PET scan. Probably was a cyst in my lung from the mold. It also cleared up. (Back on night oxygen with also CPAP after covid.)

Maybe a mold test just to rule out?

phillipskey1951 | @phillipskey1951 | May 25 2:39pm

You are not alone and I suspect the doctors you have seen are not "gaslighting" you. Millions of Americans are fighting multiple covid related symptoms and their physicians and medical researchers are still struggling with the reasons and how to treat. Most will openly admit that they don't know how to treat the memory loss, fatigue, heart and lung problems, intestinal issues and on and on. Many of us have lost their lives including younger people, others have watched the quality of life deteriorate sometimes dramatically. You are not alone.

There are major research efforts underway (NIH, Yale, Stanford) And there are several medical groups offering help. Bruce Patterson MD from Yale is offering help and has I understand been able to help, perhaps not cure tens of thousands. Research in other countries is also helping.

Google "long covid" to see all that is being done. Focus on the positive when you can. And pray for all of those are suffering when you can and in your own way.

lkirnbauer | @lkirnbauer | May 26 10:18am

I am not a doctor, but if you could, have your Thyroid levels checked. It’s a simple blood draw and ask to have your TSH, T3-Free, T4-Free, and Thyroid Antibodies tested. You many ask also for them to check you for celiac, it’s also a blood test. I was recently diagnosed with Hashimoto’s/Hypothyroidism and felt so tired and weak before starting on Synthroid medication for low thyroid. I feel your pain and I’m so sorry you’re suffering so. Your family needs to get on board with you. Why ever would you pretend to feel this way! Good luck!

kgmack | @kgmack | May 26 12:41pm

All I can say is hang in there! My symptoms are much less serious that yours, but I know what you mean when you say that you don't feel heard. Most doctors are still totally deaf to the fact that what a person is experiencing is from COVID. Much of the medical community still seem to think it is not real. And, it seems that friends and relatives don't really think it is real either.

Are there any support groups where you live? Know you are not alone. What you are experiencing is real.
Keep trying to get help!!