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My Long COVID/CFS story
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DOB 1979 44 years old male

Before COVID, I was healthy, active, and fit. No health problems and did not take any medications. I worked out 3x week, walked almost everyday, worked 3-4 12hr shifts/week as an Emergency Room Registered Nurse.

This is a summary of my illness written by myself and is not an official medical document COVID symptoms started 7/26/2020 with a COVID positive test 7/27/2020

Two weeks of:

● Fever (max 103.9)

● Body aches

● Loss of taste/smell

● Cough

● SOB

● Diarrhea

● Nausea

● Loss of appetite

● Chest pain

● Tachycardia (high of 180’s)

● Sweating from soles of feet

● Hallucinations

● One night of repeatedly waking up gasping for air

● Sensation of arm feeling on fire

● Anxiety and panic attacks

Additional two weeks of:

● Tachycardia with palpitations

● Chest pain (episodes of sharp/stabbing)

● SOB with exertion

Soon after the above, I developed sudden extreme fatigue and body aches which progressed into the following:

Continuous to present day

● Fatigue (unrelieved with sleep/rest), worse with exertion

● Body pain/aches (primarily lower extremities and lower back, but happens elsewhere at

times too, even felt internally), worse with exertion, pain always present with varying

intensity

● Chest pain (always dull/achy, sometimes sharp/stabbing, always with a deep breath or after

significant exertion, sometimes randomly at rest)

● Brain fog (difficulty concentrating, zoning out, short term memory loss)

● General malaise

● Post exertional malaise

● Weakness, feeling of heaviness

● Depression

● Mood/personality change

● Muscle jerks that wake me while asleep

● Frequent urination

● Difficulty swallowing

● Temperature intolerance

● Nausea

● Intolerance to external stimuli

● Alcohol intolerance (developed only recently)

● Reduced appetite

Symptoms present only during flare in addition to above

● Rash to bilateral elbows

● Headaches that is unrelieved

● Dizziness

● GI upset/diarrhea

A very thorough and repeated workup has not identified any underlying cause. EKG’s, stress test, Echo, MRI of brain, legs and lower back, chest CT and xray, pulmonary function test, FCE and multiple rounds of very extensive blood work

Labs of concern:

Liver function tests have been high at times

Abnormally low immunoglobulin levels

I have been seen by PCP, neurologist, rheumatologist, pulmonologist, Long COVID Care Center, Hunter-Hopkins Clinic, and mental health therapist

2nd COVID infection July 2022

Just a mild cold for a few days, I was triple vaccinated at this time

● A few weeks after, I noticed that my fatigue and pain worsened a bit and I no longer was recovering as well after my flares.

October 2022

Went to eye doc for intermittent gray blind spot in left eye since beginning of 2022 and has worsened. Dx with vitritis in the left eye, possibly right. Also dx with microaneurysm in the right eye. Referred to a retinologist and will require surgery

2023

I continue to see my symptoms slowly worsen, no matter if I pace/rest, or push myself.

Medications

● Did not work:

Vitamins: Multi, B12, D, C

Low dose Naltrexone

Clonazepam

Adderall

Trazadone

Gabapentin

Zoloft

Amantadine

Lorazepam

Percocet

Toradol

Tylenol

Motrin

Aleve

Benadryl

CBD/THC gummies, lotions

Low inflammation diet

● Worked (relieved ALL symptoms):

Prednisone 60-80 mg tapers…asked why, told steroids usually fix everything, but no inflammation per my blood work. No longer prescribed prednisone due to high risks at such a high dosage

● Still taking at present:

Cymbalta: 60mg, Wellbutrin: 300mg, Lunesta: 30mg, Metoprolol: 25mg, numerous supplements and vitamins

From the onset of my COVID infection to August 2022, I was in and out of work, missing days, weeks, and even months at a time due to my symptoms. I eventually was unable to keep working in mid August 2022 after my 2nd COVID infection and subsequent progression of symptoms. I was approved for SSDI and Workers’ Compensation.

My ME/CFS scale:

Started mild with flares to moderate, now moderate with flares to severe.

Official diagnosis

PASC(Post-Acute Sequelae of COVID) “Long COVID” (dx Jan 2022)

ME/CFS (dx June 2023)

Severe major depressive disorder with suicidal ideation

Sleep disorder

Tachycardia

Hypertension

Transaminasemia

Irritable Bowel Syndrome

Vitreous floater

Microaneurysm of retina

Allergic rhinitis

Eczema

Vitamin D deficiency

Treatment plan:

PACING and REST…AVOID PEM, limit heart rate to below 100, continue meds/supplements, tx symptomatically and monitor for comorbidities, mobility scooter

I personally may consider marijuana and psychedelics when legal if symptoms do not improve (disclaimer: I have never done any type of illegal drug in my life, but desperate times require desperate measures. However, I have done my research and must say, I am much wiser for it. Let’s just say that it absolutely crazy that I can get a prescription for any opioid or benzo…”legal” drugs that have caused catastrophic harm and death (and will not help me), but cannot yet get a prescription for marijuana or psychedelics; drugs in which actual use and research shows, is far safer than even alcohol use, and actually may provide relief for Long COVID/CFS and many other chronic ailments. WTF!)

Like so many of you, I have lost a lot…my health, career, income, hobbies/interests, independence, self-worth, identity, personality, dreams, and hope. To say this has been devastating is an understatement. I have seen studies that say ME/CFS is the worst chronic illness someone can have…I can unfortunately understand why. I am just about three years in and cannot possibly fathom doing this much longer. Each and everyday is literally torture. Lying down in bed, under my covers is my fortress of solitude, the most “comfortable” I can be…that is not life. The absolute indescribable and soul crushing fatigue, never ending pain, the hell of mental anguish…every single second of every single day. When I do something…anything, it involves great effort and suffering. Taking a shower, or even a poop! can be indescribably exhausting. I leave the house…I will pay an unpayable price. I cry, every single day. A grown man, served in the Marine Corps, faced stress, trauma, suffering, violence, and death working in the Emergency Department. This disease will bring down the strongest of us.

Also like so many of you, I have unfortunately had to endure the gaslighting, ableism, and seemingly willful ignorance from all people in my life, society, and the medical community. It has been a wild ride for sure and I have ended relationships and avoid many people. It’s for self-preservation and well-being. I am in survival mode.

I don’t know what the future holds, but I don’t think it looks good. I cannot imagine enduring this for years to come, living this “lifestyle,” watching my family endure increased burden and hardship…the constant stress, anxiety, guilt, anger, fear. Suffering each day, only to grow older and older and wait for the inevitable comorbidities to occur, further worsening my health. The way I see it, I only have two options. Suicide or suffer. I will tell you that I went through a time where I was very suicidal…ideation, dreams, plans. I just wanted to die and fixated on it. Something has happened though, and I don’t know why; but suicide is no longer in my thoughts. Maybe the antidepressants finally kicked in after two years or subconsciously my body and mind just said screw it, and have accepted and adapted to my fate. Whatever the reason, my only option now is to suffer through it. I have a 3 year old son and a wife to do it for, and I will. They have been my heroes and have kept me going all this time. So, it’s still a difficult transition, to accept and adapt to a new way of living day to day.

My message to those who are going through this…you are ultimately all that you have to rely on. When the healthcare system cannot do anything for you, or even completely fails you, what do you do? We should not have to suffer like this…every single day, for years, even a lifetime. The choice is yours and only you know what is best for you, and that is what matters most. YOU are in control of your wellbeing and life.

This is what I am doing right now if you are looking for advice:

REST REST REST PACE PACE PACE

Those words cannot be emphasized enough, and it is shocking how much rest you actually do need, and how much you need to slow your day to day activity. This is absolutely life changing…no getting around it. Attempt to rid yourself of ALL stressors in your life, as realistically as possible. Learn to say NO. It should be your favorite word, other than F$#%

You come first, before ANYTHING. It’s not selfish, it’s mandatory for your wellbeing. You are trying to preserve yourself for the rest of your life. It comes down to you being here sick, or not being here at all. A devastating reality, but one that must be accepted for you to live with this.

Please feel free to use the above as you wish or share it. None of it is embellished or exaggerated. If anything, words can only do so much to describe this nightmare…you can only truly know if you go through it yourself.

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