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Long COVID exists for 5+ years: Share what has or not worked for you
Post-COVID Recovery & COVID-19 | Last Active: May 12 7:51pm | Replies (91)Comment receiving replies
@tcastigl1 You seem to have experienced many of the same symptoms I'm dealing with; however, I believe yours are more severe. After nearly five years, my main symptom (sort of like background noise) is fatigue. I had cleared most of my symptoms a few years ago and was encouraged by my primary to get the booster for that year. Within days I was set back with all my symptoms and it took months for them to subside and I have never got back to where I was before the booster. At this point I have intermittent fatigue and definitely PEM (countless times), cognative issues, muscle and joint pain from my hips down, neuropathy in my feet, recurrent tendenitis in my fingers and wrists, sleep disturbance, and some mild GI issues that come and go. I have Kaiser Insurance and they have yet to really recognize LC. They treat it symptomatically: I've seen numerous specialists all treating in their particular field of expertice but no one is connecting the dots. They are treating me like I am five or six different bodies. It is terribly frustrating. I live in Northern California and the only two LC Clinics are with the Stanford Medical Center and the UC Davis Medical Center. Both have over year long waits lists just for first visit and they will not see you unless you have been tested positive for COVID professionally, i.e., a home test positive reading will not suffice. And, naturally, both are very expensive. There are millions of us out there and there will continue to be more each and every year but the medical health industry seems not to have accepted this fact or prepared for it. At 77 years old, I likely will not see any great interventions in my lifetime but I am saddened to think of all the younger people suffering from LC and more to come.
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@greenshade
We have very similar symptoms! It struck me that you said you had pain from your hips down. That's been the case for me, but I kind of had that before I was vaccinated and before COVID hit. It definitely increased it to the point that I needed a hip replacement. It didn't help at all. It set me back because then I got full-blown chronic fatigue. Took several years to get a diagnosis. I had to go to Mayo.
I have a sort of plan but it has taken quite a few months to put it all together because I had so many other issues to correct before I could proceed.
Right now, I am about a month in on low-dose naltrexone. It has helped with brain fog and giving me a little window of energy during the day. I found out within the last couple of weeks that I have a gene mutation that affected a medication I am on, and I am tapering off that.
At Mayo, I also found out that an electrical issue with my heart called left bundle branch block popped up after I was vaccinated. My doctor had put me on a medication for that, identifying that my symptoms were due to anxiety. He also told me that I must have had several heart attacks. I certainly had not had that and I had to switch doctors midstream.(Gah.) It turned out that I should never have been on that medication because of the left bundle branch block. That took 12 weeks to taper off from. I call it the 52 pickup game.
There's a little light at the end of the tunnel. I've had a few good days here and there where I have been upright and able to function.
Before I went to Mayo, I was flat on my back, could not leave the house except for doctor appointments, and could barely shower I was so weak.
They identified two types of dysautonomia that I have been able to manage without medication. I am getting my sleep straightened out finally through them.
I wish that I could have them for my regular doctors because medical care has been terrible where I live, but Mayo is only consultative.