My Journey With Long COVID

By Nikki Dotson-Lorello, BSN, RN, CCRN May 12, 2021

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I never thought I would be dealing with a chronic condition.

I never thought I would be dealing with a chronic condition. I’m a triathlete; I’ve done an Ironman competition. I run, bike and swim and I compete. I’m not the one who’s supposed to have health problems.

I had COVID at the end of November 2020. I was never hospitalized, but I’ve never been that sick in my life. I went back to work 10 days post-diagnosis in mid-December, but I was still having symptoms. I started having weird, wicked, horrible headaches (the headaches were my first symptom and have not let up for over five months). A week later, brain fog, and physical and mental exhaustion were the next symptoms, followed by vertigo with falls, nausea and vomiting, and hot flashes. I started trying to exercise, but walking was about all I could tolerate and still I got short of breath. And the vertigo would not go away. I kept falling.

At eight weeks I was still battling headaches, brain fog, vertigo, shortness of breath and fatigue. Then my hair started falling out. These lingering adverse effects made it so I was having trouble working, and it was frustrating not knowing how long these effects were going to last. But I’m not struggling as much as others; there are many who have it worse. I’ll make it through. I’ve been learning a lot about long COVID.

Are my symptoms of long COVID typical?

I’ve read and talked to a lot of others who have long COVID. I am having many symptoms. Not all who experience it have all the symptoms. Long COVID has occurred in patients who were and were not hospitalized. I recently read that patients who had negative COVID tests but who clinically were told they had COVID are also experiencing long COVID. A recent article describes the symptoms that are common leading to long COVID. It appears that I have most of them, although I never lost my sense of taste or smell. “COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection” suggests that symptoms typically appear in a certain order and long-term outcomes are currently unknown. This analysis suggests that long COVID is associated with patients who experienced more than five symptoms in the first week of the disease. Also, increasing age and high body mass index as well as the female sex are more likely to be characteristics of long COVID. More and more literature is coming out about this condition, so I tell everyone to keep reading as updates are posted almost weekly.

My symptoms continue to persist, which is frustrating

At nine weeks I started having chest pain, back tightness and increased shortness of breath. My heart rate also started racing. The insomnia worsened as did my brain fog. My doctor added an albuterol inhaler to help with symptom management. There are times when I walk 20 feet and feel as if I have run a marathon. It is just complete activity intolerance. Hair loss has been particularly difficult for me. It was dry, brittle and falling out in clumps, so my hairdresser and I made the difficult decision to chop it off. I also have to sleep propped up, as I cannot tolerate my head lying flat or turned to either side: another point of frustration and discomfort. It is a roller coaster of feeling a little better, and then the vertigo, headaches and insomnia are back. I also fall a lot, and I’m so grateful I have not suffered any major injuries. I’m afraid to try to bike, which is something I love.

What are some interventions recommended for long COVID?

I’ve read that most practitioners are using traditional medicine approaches to symptom management. My doctor is definitely in this camp. This article from Current Opinion in Pulmonary Medicine provides a review of clinical findings and guidelines for evaluation and management strategies by symptom. For my persistent headaches, my doctor insisted on an MRI/MRA to make sure we were not missing something. For my chest pain we’ve done an ECHO. When the MRI/MRA came back negative, he asked, “What do you want to do now?” He also suggested a consultation with neurology. I did not wish to pursue a lot of consults at this time. Based on his recommendations we increased the gabapentin. And I incorporated more supplements and essential oil blends.

While I am grateful my provider allows me to drive my care, I feel as if he does not know what to do. I worry he has given up trying to help me figure it out, because there don’t seem to be many answers on how to manage all these symptoms or what is causing them. I’m grateful the National Institutes of Health is initiating research into prolonged symptoms. I also recently learned the CDC is about to release guidelines for the management of long COVID. Patient advocacy groups and long COVID clinics contributed what they know to the guidelines’ development.

Complementary alternative approaches to long COVID symptoms

I’m also incorporating complementary approaches, as I’m a believer and I’ve heard from others that these interventions have helped them. In addition to the prescribed gabapentin and Fioricet, I’m taking natural supplements, a B-complex, magnesium, CoQ10, and essential oils for ingestion, diffusion and application on the body. I also take over-the-counter medications to reduce pain. I’ve done some guided imagery, and I’m starting acupressure and reflexology. This article also suggests breathing exercises to help with shortness of breath. I’ve read that breath work also may help with dizziness and brain fog, so I’m starting to incorporate this strategy. I tried acupuncture on the recommendation of a friend. Unfortunately, the acupuncture didn’t help, which was disappointing because I’ve had success with it in the past. And just because it didn’t help me, doesn’t mean it might not help someone else. I also use massage, which helps, but unfortunately the headaches are awful post-massage.

The NIH National Center for Complementary and Integrative Health provides information on integrative management and research; however, it is not specific to COVID. More research on these approaches is needed. A clinical registry is available for practitioners to enter data on complementary and integrative approaches for managing COVID.

Long haul clinics

I’ve read about clinics that are opening across the country to help patients who are experiencing long COVID. This list is continually updated. These clinics are helpful, as they create a place for patients to be seen and get appropriate referrals based on their symptoms. At this time there isn’t one near where I live, but I’ve heard from my provider that they are putting one together. I’m concerned these clinics only focus on modern medicine and not combining complementary integrative medicine for a more complete balance of care.

Vaccination Decision

I’m not telling anyone what they should do. I’m sharing what helped me. I was not sure I would take the vaccine for fear of how I would feel. I made the decision to get the vaccine, because it was the right thing for me to do. Post-vaccination I experienced a headache and chills, and my fatigue worsened. I was down for 1.5 days with the first shot and 2.5 days with the second. I improved with meds and homeopathic remedies. Even though I had strong reactions to both injections, and a few new symptoms following them, I know it was the right decision for me. Recently, I read some people have fewer symptoms following vaccination.

What else helped me?

At 90 days, I started to notice the essential oils and natural supplements, in addition to all my meds, were helping. Additionally, I am keeping a positive attitude. My spouse is so supportive, as are my friends. I take small steps, do the best I can and celebrate the small victories. I participated in the vaccination clinic at Bank of America Stadium. It helped me knowing that I was helping others.

What support groups have helped?

This journey has been so frustrating, but I also worried about sharing my journey with others as I don’t want to instill fear. I’m just trying to be real and open the door for support. I’ve had many people reach out to talk about symptoms, and I have developed many informal support people who help me to not focus on how bad I feel but how I may help others.

Some of the formal support groups where I’ve found help and that may help others:

I also appreciate AACN’s member benefit Peer Support Community. It is a great place for nurses to share their victories and frustrations.

Survivor Corps is a group that advocates on behalf of patients with COVID and encourages research. The COVID Symptom Study is an international group collecting data from people who voluntarily report how they are feeling daily. This data collection helps provide information for research on long COVID.

What about work?

My co-workers have been amazing. I work three 12-hour day shifts and have on-call and night-shift work hours. My co-workers have been so supportive and help me do the best I can for my patients. I was very anxious and my feelings were very raw coming back to work after COVID. Would I remember how to do my job? Would I still be the best teammate I could be? When I have periods of severe shortness of breath and my patient asks how I am, I feel guilty they are worrying about me since I want them to focus on themselves. My co-workers are family. During times of sickness, I receive texts and calls of support, a care package and daily check-ins that even continue now five months in. I am blessed.

Feeling guilt because I’m not at my best

I really struggled with the decision to consider an intermittent leave from work. I did not want to feel weak or as if I was giving up. There are just times when I get done with work and the exhaustion is all consuming, along with days when I have severe headaches. I know I am not able to provide my best care to my patients or be the best teammate I should be for my co-workers. I also struggle with feeling like a burden on my husband, and I feel guilt for not being able to get past this feeling. My husband has been my strength, my rock, as I am not the easiest patient to care for. I am stubborn and tend to do whatever I want - typical hard-headed nurse!

Over the years I have perceived needing to take time off as weakness. I struggled with this intermittent leave decision, but I am worth it and I deserve this time. I am not abusing it but taking care of me. I’ve been suffering now for five months; long haul COVID sucks. I want to be back to normal. I’m practicing gratitude because I know it could be so much worse.

What have I learned?

This experience has definitely made me a more compassionate nurse. I think sometimes you have to experience what your patients are experiencing, such as chronic pain. I never really understood until now. I’m definitely a better nurse because of what I’m dealing with.

What keeps me motivated on my journey to healing?

A few years ago I had a coaching session with Kevin Cashman, author of “The Pause Principle.” I learned this lesson, which I’m trying to apply to my current long COVID situation:

“In situations where I may not be happy, the only thing I can change is myself. I will remain focused and determined to overcome, to move forward and celebrate the things in life that fill my heart.”

What keeps me motivated? I long to get back to my triathlons and be active. I want to hike, kayak, travel and get back to me! I feel slightly lost and adrift in this fog of COVID. I miss planning my week for training. Now I can only plan for it if I feel well, day by day. I have been able to start walking without shortness of breath, so I am hopeful I may get back to running soon. I have races to do! Wonder Woman inspires me; she doesn’t give up and neither will I.

I continue to research ways to help myself, and I find that a lot of solutions that help now will also help long term for a healthy life in general. I am driven and I will get past this. I have to allow myself patience, but I must push myself to get active in small increments. I now recognize the triggers that set off headaches. I push myself to stay positive and motivated, as I will not allow myself failure. I find remaining positive keeps my head in a space for forward movement and not self-pity. I have to allow myself time to rest. Although I prefer to go 200 miles an hour, this does not work right now.

I want to share my story and at the end I am hoping for a successful recovery, so I can show others it will get better. I also must balance the shift from being a caregiver to receiving care when my body dictates those needs. I’m not giving up and letting COVID beat me. Losing this battle is not an option.

I hope my story helps others dealing with long COVID or any other challenging life issue. What helps you manage difficult times?