Finally: Diagnosis. Oddly: symptoms have come in stages. Others?

Thank you. I called this morning and attempted to request a patient advocate and was told they don’t have them. I was also told that I can’t find out if a doctor treats long COVID until I’m in an appointment because it’s considered a consultation and requires an appointment. This is what I’ve been dealing with when I try to get help. It’s such a waste of spoons. I’m better off staring at a wall.

I’m thankful you posted as well. Your care coordinator sounds phenomenal. It is completely exhausting trying to just make calls, especially when they are dead ends.

Hearing you mention washing your hair and being presentable for zoom meetings reminded me of another early symptom. My hair was breaking off and I was worried I was going to go bald. I joked about having to invest in hats. We have to find the humor still, right!?

Thanks again 🫶🏼

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 😊 )

Oh @mayfl0wer. Sounds like your healthcare system similar to my sons which uses the grievance process to escalate assistance needed. This is not a legal or punitive action as so many would think as it is required for the system to show the need for the requested care. In other words, if no advocate is available, and no further level of help offered, request a formal grievance processed immediately over the phone due to your physical and life affecting needs. Hope this gets you that needed forward motion!🌈

Now and then, @mayfl0wer , I step outside myself and yes, laugh. I too have lost hair which I couldn't afford to do to keep some self-esteem.

Care-coordinator: If you can find someone do. I'll ask mine if there's a network of people who do this work. For me, because she knew me/my medical history and how I was BEFORE, it helps especially. Still anyone who will deal with the nightmarish systems and hoops we have to go through is worth their weight in gold.

To us! To humor when and where we can find it!

JE

Oh Gerry, what's so troubling is that you are part of the community of docs and are not listened to. You, I'm guessing, would be more knowledgeable than most about your own health and know what to ask and how to delve deeper.

That alone tells us so much about how ignored we all are, or if not ignored, given no encouragement.

I hope you find a doc in Boulder to listen.

Joan

Thanks, @cpivyca. I guess what I call a 'rash' is more like little canker sores that yes, come and go tho' are mostly present and have been now for 2 years. Painful when they are 'full blown'; tolerable when not.

I'll look into Propolis. Thank you.

I work in a home office and have days when just getting dressed and to my desk by noon is a big deal. I try to schedule no Zoom meetings or other things before then. THIS from someone who until my 70s loved early mornings - would be up and doing by 7 - fully showered and dressed. This noon thing is annoying but it just takes me forever to even get the energy (mental and physical) to do so. Yes, muscle pain too. I was doing a great job of tracking symptoms daily and then THAT got to be too much of a task.

My heart goes to you too. We are like a secret society, aren't we? Each with different symptoms, sharing some (which is a gift of this site to know from others), and managing responses to those who say "I got COVID and I'm fine - what's wrong with you?" or how others tell us we look great as noted by others and we try to explain and they don't want to acknowledge it's real.

One day, they will know. I hope we manage until then and are the first helped.

Joan

Oh @kayabbott how horrible all you have been through. And a cycling superspreader?? Guessing it was before or after activities because weren't you outside otherwise - and "they" say we can't get it outside.

Your eyes are not one I'd heard. I have dry eyes - stopped wearing contacts years ago because of it - and noticed some vision changes. That too has to be dealt with - among all the others. Each trip to any doc is a production!

I think I'm past my 'use by' date and somehow keep pushing past it.

To softer days ahead.
Joan

I'm reading out of order and am SCREAMING for you. WHAT nonsense! I'm guessing they all are trying to figure out any new rules or guidelines but this is so obnoxious.

I'll ask my Patient Advocate about others. Are you comfortable telling me what part of the country you're in? I'm in DC and she's in the Maryland suburbs of DC.
IS there a way to be able to send DMs to each other or through Mayo if we agree?
Joan

Part of the route wasn't safe due to narrow shoulders, so an hour in a van next to the contagious person was a high viral load. The covid didn't hit me until 3 days later, but biking 70 mi/day and hot days probably didn't help. I have had dry eyes for years, and hypothyroidism and the dry climate here don't help, but the drusen and dry AMD started within a year of the covid and the stage 3a CKD a few months later. Related? Who knows. I have no risk factors for either. Best to live in the day and look forward to better times, warm days, hot chocolate, and friends.