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! 🤗🤗🤗