What am I actually supposed to be doing to get better?

My reaction to your post would be to recommend you search for a doctor who is working with Long-COVID patients; find a med school in your state, see if they have a long-COVID clinic or a COVID Clinic. There are things that a doc who works with long-COVID patients can recommend that may help. Not all help everyone so it is trial and error, but it sounds like you are not getting the medical help you need and deserve.

Thank you for your advice! I appreciate it very much. I will look into options for Long Covid specialists nearby. I definitely feel pretty lost in my life and in my head about how to approach coping with this, and my doctor has an “eat well, stay hydrated, pace yourself and good luck!” approach. Her advice has some merit for sure, but I am unraveling a bit, and I just want more guidance, if it is out there.

Cheers!

Athena

I am also very interested in reactions to Athena's question and feel as lost, four months into LC. LC-clinic neurologist told me last week that you need to avoid crashing and worsening your symptoms at all costs and to plan your day/activities accordingly.
For me, this is currently (since early March) lying down and only leaving the house to see doctors. I am as concerned as Athena that this will only weaken/decondition me further. I do have the odd "better" day but find it impossible to say whether it is getting better overall. How do you know that it would be better to get active and/or how long is this likely to take?

@athenaatkins I feel sorry for you, I sincerely appreciate that you are facing a difficult time and I must say I empathized and also saw myself through your comment. It's very stressful figuring things out and not having someone who really knows what to do to be a FUNCTIONAL PERSON. It's overwhelming and can also trigger anxiety and depression, so I want to express my feelings and share them with you so that you feel at least a little better: obviously we're not happy to know that there are many others suffering like us, but at least to Me loneliness and despair are the most common symptoms that we - long haulers - share. Everyone has their own unique pattern, but no matter what you're facing as your worst difficulty - for me it's terrible joint pain and fatigue - we all seem to share this feeling of detachment or that we are no longer able to adapt. I hope we all get through this together as soon as possible. I'm rooting for your recovery

Thank you, Thais! You really hit the nail on the head. I am definitely feeling lonely and full of despair. I am truly grateful for this group, because otherwise I would have no one to talk to about my experiences. I do not know anyone else who is dealing with Long Covid, and it is very isolating. I appreciate you and everyone else here!

Hi @athenaatkins and anyone else here. So agree with others comments relating to my going on 3 year journey. Kind suggestion from personal and professional admin medical background to seek Physical Therapist thru your healthcare system. Mine has been able to offer so many insights and helpful modified exercises, or none!, from dizziness visual aid to pots and pem etc bed/seated…with no weight to elastic bands.. and very slow realistic increments to lessen bedridden setbacks they commonly see. My long covid clinic was helpful in referrals/info for clinical info to substantiate crucial pacing/modification needed and the physical therapy has helped tremendously to maneuver the everchanging symptoms and effect on day to day life because they see and treat so many of us with real time experience and realistic individual treatment. Their support and guidance allows light at the end of tunnel for quickest recovery that I wish for everyone here!🌈

I hear you, Athena. There's so little research at this point that we really are left to our own devices -- and helpful sharing forums like this one -- to test what works and what makes worse. Effectively, our own guinea pigs!!! I was feeling better two days ago and pushed to do a two-mile walk in my park. ("I'll kick this MF!!") And then crashed big time yesterday. So I know what you mean by the "sweet spot." You're so right in identifying the risks of bed rest and staying inactive. Got to keep the blood, muscles, and all the rest moving! Good luck today. Hope it's a good one for you.

What about a weekly/monthly Zoom with group members for even further support? Is that an option or does Mayo frown upon extra-Internet activities?

At this point I’m 20 months into symptoms following Covid. I’ve seen pretty much all the specialists who keep starting at square one protocol even though, as in reflux, I’ve been through it and I’m still struggling. I don’t even know how to get the long covid diagnosis. Any suggestions?

It’s not possible to think of recovery while still getting worse. After two years, that is my experience. I never feel better, my symptoms continue, and more stack up.
Since there is no test for LC, it’s confusing. I expect that’s what I have, because I was never really sick before having Covid. Any sickness I had previously I got over quickly. I never had anything chronic.

I’ve had every treatment you can imagine...Acupuncture, chiropractic, high dose vitamin infusions, ozone infusions, every supplement and vitamin suggested to me. I’ve tried the different online therapies that have helped some people. I’ve been to more doctors and therapists for the last two years than I can even remember. Going to two or three appointments weekly for two years! It’s insane. I am now with a group that has LC treatments, but none have worked for me.

For a long time I was religiously walking daily. Now I am too dizzy to walk much, so I also worry about how out of condition I have become.

Life goes on while I am left behind. People tell me to be positive. How? I’d really like to know.