So today if the one year anniversary of my being ill, and this is a summary of my health experiences since then (you are welcome to skip this post if you wish). It started on this day last year at 3:30 in the morning. I had diarrhea with gas, cramping and chills. This continued for 8 days then continued every 3-4 days through 3/10. I tested positive for Norovirus at that time.
Then on 3/14/20 I was exposed to a patient with a gastroenteritis whose father had classic COVID-19 symptoms and worked at Boeing where there was an outbreak. I didn’t wear PPE as gastroenteritis was not a described presentation of COVID-19 at that time that I was aware of. On 3/19/20 I was acutely ill with fatigue, dizziness, nausea, anorexia, progressively worsening nausea, and weakness. Diarrhea, gas and cramping returned as well. It was hard to eat and to walk. My temperature was 99.2 for 4 days, I was in bed and lost 10#. Again since this wasn’t a described presentation of COVID-19 I did not think that is what I had at the time.
On 3/25/20 my left knee developed swelling and warmth. Naprosyn was started. On 3/27/20 my knee was worse, with overlying redness. The diarrhea recurred. I went to the ED. My joint fluid was cloudy with increased Nucleated cells 10,462 /mm3, Neutrophils 58%. My CRP was 90.54 mg/L. I was diagnosed with inflammatory arthritis and started prednisone 40 mg daily for 4 days. Here is a photo of my leftover knee joint fluid.
I improved with the prednisone. But then on 4/22/2020 I was acutely ill again with fatigue, malaise, shaky, nausea, dizziness, myalgias, tingling skin, cognitive dysfunction, chills, felt feverish, and sweats. I remained ill for 4 days, and my knee started to swell and become warm again.
On 4/27/20 I was seen by Rheumatology and diagnosed with reactive arthritis. At 12:30 I became acutely ill with fatigue, dizziness, myalgias, tingling skin, and cognitive dysfunction. Prednisone was restarted 40 mg daily. On 4/28/20 I felt fine but on 4/29/20 0830 I was acutely ill on my drive in to work with fatigue, dizziness, myalgias, tingling skin, cognitive dysfunction, increased bowel tones, and chills. I felt feverish and sweats. I continued to be ill for 4 days and prednisone increased to 80 mg daily.
On 5/4/20 I had an Infectious Disease appointment where a large work up for infections was begun. I also saw Gastroenterology appointment, who thought I likely had ulcerative colitis. I stopped NSAIDS, endoscopy was ordered, and I began weaning steroids.
On 5/7/20 I was again acutely ill with chills, shaking, pounding heart, dizziness, extreme fatigue, cognitive dysfunction, weakness, nausea, and shortness of breath. I was seen by ID. Laboratory evaluation was normal. I remained ill for 4 days including gas, bloating, cramping and tingling skin. I had trouble sleeping with cramps and sweats. My highest temperature was 99.6.
On 5/15/20 I was ill with pounding heart, dizziness, fatigue, indigestion, chills, increased bowel tones for 1 day, Then on 5/18/20 was again ill with fatigue, indigestion, pounding heart and pulses.
On 5/19/20 an echocardiogram was done and read as normal. On 5/21/20 COVID antibody done & negative. On 6/2/20 endoscopy performed and found hiatal hernia, gastritis, and diverticulosis but no evidence of inflammatory bowel disease.
On 6/3/20 I was short of breath, lightheaded with mild exercise, pounding heart, heavy feeling in chest, increased bowel tones, and fatigue. Sulfasalazine started.
On 6/19/20 I had pounding heart and SOB worsened and became constant, dizzy with exercise, odd feeling in mid anterior chest comes and goes, lasted 1 week.
On 7/10/20 a Chest CT with contrast done and was normal. 7/11/20 was a rough day with fatigue, chilled, hot, palpitations, SOB, knee still warm and swollen with mild pain, and one episode of bloody urine.
On 7/13/20 a non nuclear stress test treadmill testing done and was normal.
On 7/27/20 PCP diagnosed me with trigeminal neuralgia after 4 episodes of right facial numbness over 2 weeks
On 8/4/20 I had a pulmonary appointment, and a stress echocardiogram and PFTs were ordered.
8/21/20 was rough day at work with hot sweats, chills, palpitations, dyspnea, and facial numbness constant now.
On 8/24/20 I had a rheumatology appointment. CBC, CMP, CRP, and ESR all OK, we stopped NSAID and started a trial of prednisone 20 mg daily for 2 weeks.
9/2/20 stress echocardiogram was negative. On 9/7/20 I was doing better. My left knee was no longer swollen or warm. My palpitations, shortness of breath and sweats had improved as well. I felt less fatigued. On 9/10/20 I started to taper prednisone and started methotrexate.
On 9/11 my head MRI had ‘mild degree of non specific white matter disease’, a nonspecific finding.
On 9/16 I had Pulmonary Function Testing done while asymptomatic. It showed mild restrictive lung disease with FVC 73% predicted. and DLCO 75% predicted.
On 9/19 the shortness of breath and palpitations recurred, and left knee was swollen and warm again.
On 9/29 the pulmonologist thought that obesity may be causing decreased lung volumes, and referred me for exercise pulmonary testing at Swedish. On 9/30/20 I began experiencing increasing bruising. My shortness of breath, palpitations and sweats were slowly worsening, and my left knee was swollen and warm.
On 10/11/20 my right knee became mildly swollen and warm. I had SOB, palpitations and sweats getting worse.
On 10/26 Rheumatology appointment- I was to continue treatment for one month, if not improving consider biologist agents, Enbrel or Cosentyx.
On 11/12/20: I was ill at end of shift at work with tingling skin, chills, nausea, fatigue, increased bowel tones, tachycardia, increased swollen and warm left knee, and Achilles pain.
12/8/20 Enbrel denied, insurance suggested Remicade
On 12/15/20 SOB and palpitations slowly worsening, left knee still mildly warm and swollen, right > left hip pain, bilateral Achilles pain and tightness, and intermittent tightness in calves.
12/24 Pfizer vaccine #1. 12/25 increasing dyspnea, palpitations, hot spells, and fatigue.
12/28 exercise pulmonary testing was done. I felt awful that evening with profound fatigue, malaise, dyspnea and palpitations
1/14 second Pfizer coronavirus vaccine
1/19 pulmonary appt, no results from exercise pulmonary testing
1/28 I had my first Remicade infusion. I was quite fatigued after. Here is the resulting bruise many days later.
So that is what has happened to me over the last year. Currently I have constant shortness of breath and palpitations which are worse with exercise (as in walking) and with laying down. I have right facial numbness mostly when I am sitting and tired. I have constant fatigue. My knee is swollen and warm. I have some days worse than others.
I am waiting to see if the Remicadw will help me. I am on the prednisone still at 15 mg daily. I am still waiting on the exercise pulmonary function testing results (it has been over one month). I am now trying to get into a COVID-19 Recovery Clinic. I am certain I have reactive arthritis but am not sure if my other symptoms are related to that diagnosis or to Long Covid. So hoping to get some answers and perhaps different treatments in case the Remicade does not work. And I really want to get off the prednisone which is terrifying to be on during this pandemic. I am hoping for more answers and successful treatment in this upcoming year as this last one really sucked for me.
Thanks, Donna for this review. I’m still in shock at all you’ve been through. No fun. I’m so sorry, and pray for your healing. I’ll write more later.
Thanks Jeanne. I am not sure if anyone wants to know, but it does affect the farm so figure it was OK to post. Desperately want to heal so I can get back to what I love more fully and with less suffering.
I definitely want to keep up with your health. I care!
Wow, Donna, when you lay it all out in a timeline like this it is amazing that you’ve gotten ANYthing done or ever sounded “normal” in your blog posts! How you’ve managed to keep your sanity through all these recurring problems without definitive diagnoses is beyond me. Wish I could offer more!
Thank so much Michelle! I am trying to keep up my good spirits and still do what I love, but with moderation. It has been a challenging year for sure.
This is overwhelming. I am so sorry! I am hoping you get some answers soon.
Thanks Amy! I hope so.
wow. that’s a lot to be dealing with. And very smart of you to be keeping a record of the symptoms, testing and therapies. I do hope you are able to get into the covid recovery clinic, as this sounds like a pretty complex issue.
You might want to read a book that came out last year called The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey. Ramey is the daughter of two medical doctors and still spent ten years being shuttled from one doctor and specialist to the next and given one different drug after another as a way to get a handle on her “mysterious” illness. Her journey of discovery and how she worked to take back her own health and found a doctor who could really help her is a riveting and eye-opening read. I hope things improve for you soon.
I will look for that book. Thanks for suggesting it!
Thankyou Donna, such an ordeal for you to go through and I truly hope some real solutions come your way. Puppy good for puppy joy. Sending healing thoughts, wish they were answers. eliz
Thanks Eliz. I appreciate the healing thoughts. The puppy is definitely a nice distraction.