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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: 1 hour ago | Replies (82)Comment receiving replies
To the Mayo Clinic Long COVID Team,
My name is Richard Goldstein. I contracted COVID-19 on January 6, 2021 while working on duty as a police officer. More than five years later, I am still living with persistent symptoms and am now medically retired, yet I am still involved in an ongoing workers’ compensation process where insurers continue to question the legitimacy of my condition.
My symptoms include brain fog, tinnitus, chronic fatigue, reduced lung capacity, joint pain, body aches, muscle weakness, reduced endurance, and a pattern of having “good days and bad days.” Some days I can function relatively well, and the next day I may be completely exhausted. A pulmonary specialist has documented glass-type nodules in my lungs, and I have also experienced rashes on my arms and legs.
Like many others, I have been made to feel as though my symptoms are not believed, which has been extremely frustrating and emotionally difficult. Finding communities of people experiencing the same long-term effects has been validating and reassuring — I finally know I am not alone and not imagining this.
I have also noticed that red light therapy seems to help somewhat with symptoms. I am curious whether others with Long COVID experience the same fluctuation in energy levels — feeling relatively strong one day and significantly worse the next.
I would appreciate any information about your Long COVID programs, evaluation options, or resources available to patients like me.
Thank you for the work you do and for recognizing the reality of this condition.
Sincerely,
Richard Goldstein
Replies to "To the Mayo Clinic Long COVID Team, My name is Richard Goldstein. I contracted COVID-19 on..."
@rgoldstein909 Most of the LC people that I have talked with have the fluctuating energy levels and have to implement intense pacing....really intense pacing. I take several rests during the day so I don't run out of energy. If you overdo it one day, it usually will affect you the next day or the day after. I have intense post exercise malaise...that can last hours to days but am better on Low Dose Naltrexone (LDN). It does give me additional energy and is regulating my immune system so the rashes are fewer and farther between...and shortness of breath/palpitations are less. LDN also takes away about 50% of my pain from the constant and chronic LC induced inflammation.
@rgoldstein909, it can be hard to get care for long COVID. It's not uncommon for people with long COVID to have their health problems dismissed by others, including healthcare professionals, family members or employers.
Pulling together information about symptoms and timing can be a challenge. This is especially true when medical history is fragmented or when someone is managing symptoms related to memory or that affect the thought process.
To request evaluation for Long Covid at Mayo Clinic, your first step is to submit a request to General Internal Medicine here: https://mayocl.in/1mtmR63
I have also been battling this for over 5 years. Definitely good and bad days, more worse than good and my symptoms of exercise intolerance are getting worse. Meds I have been on have not helped and had serious side effects. I was a solid endurance athlete since 2009, and right after the vaccines my endurance went off a cliff, blood clot, extreme high heart at low pace activities, gained 20lbs not being able to work out, brain fog, ringing/hissing in ears, lower leg pain feels nerve related, biting in legs on some night with both affecting my sleep. Slight headache all day, abnormal blood flow to brain, affects running and swimming worse than cycling.
Have had so many test tubes of blood drawn, was in research study at Mayo for Long COVID cognitive issues, told they do not know what is driving my symptoms post vaccine adverse effects.
I had a doctor outside of Mayo deny treating me when asked I need to know what these vaccines did in my body and he stated “not going there” and walked me out.
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@rgoldstein909 definitely have the good days and bad days. It makes it difficult to plan my life because I never know if I will be up to doing what I thought I was going to do that day. I have overwhelming exhaustion, tinnitus, panic and anxiety, insomnia and unrefreshing sleep, nasal congestion. My first primary care doctor told me I was getting old and it was normal to be so tired, so just take a nap if I needed one. I found a new doctor who, when presented with all my symptoms, agreed that I had long covid and I am now getting some treatment. We started with a valacyclovir/celebrex combo that has helped me somewhat. I also do many wellness good habits like coherence breathing, yoga, walking, intermittent fasting, nasal saline washes, probiotics. I am getting better but not back to my former energetic self yet. Hang in there.