Symptoms throughout the day: A pattern is emerging

I hope you feel better. I have had severe long Covid for over a year now. My symptoms almost mirror yours in the beginning. I monitor heart rate, blood oxygen levels and blood pressure- fluctuations occur frequently.
Unfortunately, I am still sick and have been trying everything under the sun. Coconut milk helped me feel rejuvenated when I was about to crash or when I felt the crash coming on. I also recommend CRYO Therapy- helps greatly with the inflammation.
I am grateful to have a neurologist that diagnosed me with long Covid from the start ( in the early stages of its discovery) I highly recommend finding a neurologist that takes Long Covid seriously. I thought I was going crazy with my symptoms- but the diagnosis put me at some ease. I would advise to be your own advocate- I have walked out of doctors offices- Find healthcare professionals that have a holistic approach, treat you as a human being, and are not afraid to ask questions/try new things.
I quote my neurologist, “Any doctor that claims to know how to cure long covid is lying- we still are still trying to understand what Long Covid is.”

For reference- I am 34 years old and went from power-walking 10 miles a day, going to the gym and working a very demanding job to constant fatigue, unsteady on my feet, walk 3 miles and do yoga if I am lucky. I try to use my creative outlet as well. I am a different person, unable to work. I know this is not forever, but it feels like it.

Hello, first thank you for the advice about the Neurologist because in June I had tested positive for the 3 time and this time I can't get past it. I have lost my job and I am about to loose my everything. Including My mind. I could use some advice on what works for others. I live in a very very rural area in the northern part of Georgia and we don't have any resources for persons with Long Covid. I even went to different ER/hospitals and when I tries to talk about it they shut me up and said they don't deal with it because there isn't enough training. So they did CT Scan and blood work for cancer never even checked my Covid status. What doni so here? We do not have any resources for help in any way. No assistance nothing

I hope you feel better. I am so sorry that there is such limited resources in your area. I would highly recommend traveling to a neurologist. Then hopefully they will be able to do telehealth appointments moving forward . Im in New York- we have a vast amount of resources and I still have traveled over an hour to see my pcp. She now does telehealth with me. Maybe your physician can order whatever tests you need and you can do the tests close to your home. I hope you are able to get the care you need- sending positive thoughts your way.

Thanks for your response. I was a performing dancer and yogi and have been exercising and physically active for most of my life! Since December 2022, my life has also changed dramatically. Right now I am waiting to hear from the Scripps Long Covid Clinic. My blood work came out positive for Covid infection, so they know for sure I am post Covid. They are supposed to have a staff of every specialty working at that site, so I hope to find some very competent professionals. Right now I am working with my cardiologist. I will be on a heart monitor for 2 weeks. I do feel that this problem I am having is a result of being post Covid.

We are trying to find me care I have a doctor's appointment on Monday but that's just for the gastrologist I continually have shakes and heart palpitations vomiting constipation loss of appetite. I was bedridden for a month and now I'm semi bedridden I can at least get up and take care of myself a little bit but I still can't lift my arms or move quickly without getting dizzy and losing my breath things are just really out of control I still have ringing in my ears and the sharp pain in the head and my spine I'm losing hope if it wasn't for the support of my friends in the community I would be lost right now I thank you all so much for your kind words continue to pray for us and #long covid is real

I am so sorry to hear of your pain! There are a lot of us out there suffering, and the world just moves on. The attitude is that "It's over." Well, it is not "Over" for the millions of us who are suffering physical and mental pain and isolation. We need intensive research and ongoing care for those who have this cruel and horrible syndrome. I am going to write to my local politicians and pressure them to get on the ball and try to get some decent legislation to help those suffering from "Long Covid".

It's not funny what you said there. I have really felt the world move today, the company I worked for terminated me saying Bad attendance. (Evidence is key) Not true, but I tried for 2 weeks to have them educate me on the Short Term Leave policy. I never received a reply. Instead I received this letter. That will cause me to go without an income, but now I have to fight harder to get support. If they would of replied they would of known that I am dealing with COVID. The community I live there is no funding for baron women. It's home's with children, so there's that. I feel so lost. I feel like I already died. Nobody checks on me. Doctor's never pay attention to whY you are saying and nobody has any training dealing with Long Covid at all. I would have to drive 2 and half hours to the nearest COVID clinic to get help. This is getting so hard to keep going. God bless you for listening to my ramble. I just feel invisible and forgotten.

I'm truly concerned that we may never get the answers we need. We are told what they want us to hear. I am also going through good days and some bad days. I want to remember everything that has happened and I am afraid I won't see a doctor while I am still with the underlying symptoms. Hopeless.

I don’t know if doctors will get all this figured out in my lifetime, but I choose to have hope for a cure. It will take a ton of research to figure out what exactly covid did to us so they can treat it. I don’t blame doctors for not knowing what all to do. They are figuring it out with us. I’m the only Long Covid patient my PCM has. She is scared to even treat me because she doesn’t know what to do. Even Mayo says they have no one like me. Most people like me never walked out of the hospital. I fought really hard to still be here. I’m on oxygen 24/7 and am trying to get a double lung transplant just to live. I have pulmonary hypertension from all this, along with all those other Covid symptoms. I get sick with respiratory infections or flu-like symptoms often and for weeks or months at a time. We have to keep fighting to live while they figure this all out. It’s really hard, we are all struggling here. I hear you, I validate your symptoms, and I care. Hang in there everyone!!!

I would like to talk with you about the Scripps clinic. I too have long Covid. 858.212.6888 Jeanne