Hi @mayfl0wer. I am so sorry you are experiencing the difficulties so many here face. May I suggest you contact your healthcare systems patient advocate thru your pcps referral. That advocate in turn can hopefully do all the work needed to obtain an enhanced care manager to have diabetes thoroughly evaluated with requesting hopeful further care of trauma level mental health provider, neuro physical therapist etc. for your realistic daily needs etc due to the complexities of your post covid🤞Know how daunting all this is and we are here to help you maneuver for the quickest healing journey possible🌈

I so understand! You have no idea - and I hope you'll read my response to law59's response to you.

I too have felt horribly cold most of the time - and shaking from it. Gastro issues have just begun and they are awful. It will mean yet another doctor I'm sure. I'm so tired of it all. And without my Care Coordinator (see post noted) I absolutely couldn't do this. JUST being on hold to make an appt. and explain is exhausting, isn't it?

I am 'pleased' that my initial post has generated so much discussion. I feel horrible for us all AND am glad "it's not just me".

This is one horrible journey and it will make me retire from work I love too soon. I'm almost 78 and self-employed and had no plans to stop working until I died. Alas no longer can I do so. Even getting dressed well enough to be on Zoom takes too much energy and time. I've thought about wearing hats so I don't have to get haircuts which takes even more energy. I laugh as I write this - it's what a friend and I call our "organ recitals" - and I know how not funny it is.

To us all and to Mayo, thanks for this place to compare and gain comfort from others - get ideas to recommend to our doctors - even if we are told that probl won't work on "my" symptoms.

I long for one night of sleep in a bed instead of a non-recliner chair and one day - just one to not be greedy - of not having the old symptoms flare up and new ones appear.

In this season for many of renewal, may the doctors and scientists doing research continue to do so and help us. Enough is enough.
JE

Wow, not to wish any ill for anyone here, but it is good to know I’m not alone in some this nonsense. Sometimes it seems it’s all in my head when test after test comes back with nothing definitive. I’m a 57 yr. old male with numerous spine issues/fusions, type 2 diabetes, IBS-C, GERD. I contracted COVID back in November 2024 and while it wasn’t “fun”, it wasn’t the worst thing I’ve endured. However, since then, I have developed the following: fatigue (extreme sometimes), brain fog/cognitive issues, shakes/tremors (it seems to be related to stress or even excitement not how cold it is out), balance/coordination issues, depression and sleep issues I’ve had for a while now but it has gotten much worse. Also, I seem to have developed an issue where my heart rate spikes seemingly out of nowhere. Just yesterday, after my usual breakfast, it went up to 155/160 bpm while doing nothing in particular and stayed there for a couple of hours. Usually, when it isn’t this bad, I can remedy by doing deep breathing exercises but this left me totally wiped out for the rest of the day unfortunately.
My last fusion surgery was C3 to T1 just over a year ago at Mayo Jacksonville and the rehab seemed to be going decent with the exception of some pretty bad rhomboid pain that doesn’t seem to want to go away. Wondering if this fits with “coat hanger” pain and may be related to the other COVID stuff?
After having lots of bloodwork, an EEG, nerve study and brain MRI it seems all of that is normal, which does eliminate most of the scary stuff like MS, Parkinsons, ALS and brain tumors but at the same time it leaves me feeling like I am losing my mind. Along those lines too, my wife, even though she really is trying to be supportive gives the vibe that maybe it is all in my head (or maybe that’s just me being overly sensitive). However, it could also be that she just doesn’t know what to say or do since there hasn’t yet been an actual diagnosis of anything. I know this bugs me often since I just want to know what it is that I am fighting.
My docs are thinking this could be COVID related also but unfortunately, the closest Post COVID specialty clinics for me are in Miami and Jacksonville. Since I have already been to Mayo for other stuff, I plan to reach out and see if they can help.
One thing that has helped me to describe my situation to family is something called “The Spoon Theory” ( type it into any of the search engines and you should find it easily). Years ago when my daughter was dealing with severe Crohn’s issues, she showed me this and “WOW”, I get it now!
Anyway, I plan to keep on fighting and pray that everyone here has the strength to do the same! Please keep posting the things you’ve tried that help you and I’ll do my best to do the same (providing my brain is working that day 😊 )