Bedbound with ME/CFS for about 10 months, now much better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Nov 2022
In their words
- Condition: ME/CFS
I’m officially diagnosed with ME/CFS due to covid
In context ↗ - At worst: Severe
Since then - it’s been 17 months. 10 months I was bed-bound.
In context ↗ - Now: Much better
Now, 7 months after reinfection, I feel maybe 65-70% recovered ... In the last 3 months, the improvement has been sudden and dramatic
- Began after: COVID
Had Covid May 2020
Read from 29 of their posts and comments; links to the 22 this page draws on
Summary
Owl 78892, 26, fell ill with presumed COVID in May 2020 and was bed-bound for about 10 months; she was diagnosed with ME/CFS. Chiropractic, acupuncture, pregabalin, CoQ10, IV supplements and a low-histamine diet helped some symptoms; by February 2021 she rated herself 80% recovered and later returned to work. An assumed Omicron reinfection in December 2021 sent her back to long COVID; by mid-2022 she felt 65-70% recovered, and by late 2022 her cognition was improving.
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What they tried
What they credit
Also tried
Their words about each treatment
- prednisone · Not said
5 day course of prednisone in June
In context ↗ - Vitamin B Complex · Helped a lot
Vitamin B Complex has been the biggest help with my lack of focus/brain fog/memory.
In context ↗ - Juice+ · Helped a lot
I began adding Juice+ to my daily regiment, which I believe has had an incredibly positive effect on my brain fog.
In context ↗ - regiment of supplements/vitamins · Not said
Consumed my regiment of supplements/vitamins, and 20 oz of water.
In context ↗ - acetaminophen · Not said
Took 750mg acetaminophen
In context ↗ - cyclobenzaprine (flexeril) · Not said
Also taking cyclobenzaprine (flexeril) for muscle aches and spasms on the really bad days.
In context ↗ - yin yoga · Not said
did some yin yoga (passive stretching)
In context ↗ - meditation · Not said
covid pushed me to begin truly practicing meditation and studying Buddhism
In context ↗ - pregabalin / lyrica · Helped a lot
Now taking lyrica, 75mg 2 x day, and it has helped a LOT with the nerve pain.
In context ↗ - gabapentin · Worse
I tried gabapentin for 45 days, and it was not for me. Barely touched the pain. Gave me very intense moods.
In context ↗ - bullet journaling · Helped
I recently discovered bullet journaling, which has been incredibly helpful in tracking my recovery
In context ↗ - chiropractor · Helped a lot
seeing a chiropractor regularly has really been immensely helpful
In context ↗ - acupressure mat · Helped a lot
look into getting an acupressure mat offline. This helps immensely.
In context ↗ - low-histamine diet · Helped a lot
Starting a low-histamine diet, slowly upping my walking distance and getting IV supplements once a month was the real turning point for my healing
In context ↗ - CoQ10 · Helped a lot
CoQ10 helped immensely with my shortness of breath. I started feeling results within days of starting it.
In context ↗ - cold showers · Helped
I’ve only been taking cold showers for the last year, and I’m in love with them now. The way they calm and soothe your nervous system is a temporary heaven
In context ↗ - albuterol nebulizer · Helped
I also use an albuterol nebulizer 2-3 times a week, which has helped a lot with my SOB as well.
In context ↗ - acupuncture · Helped a lot
Acupuncture has been extremely helpful in managing symptoms, in addition to other LH issues.
In context ↗ - cranial-sacral therapy · Helped
cranial-sacral therapy and acupuncture has significantly helped with my neuropathy pain
In context ↗ - amlodipine · Worse
I was prescribed a calcium channel blocker (amlodipine). However a side effect for me was blood pooling in my feet, due to my blood vessels widening too much. The pooling made my POTS symptoms 10X worse and the neuropathy unbearable.
In context ↗ - electrolytes · Helped
I also find electrolytes before bed help immensely
In context ↗ - complex carbs + water · Helped
a small amount of complex carbs + water, immediately after I wake up
In context ↗ - lexapro · Not said
I have been taking 20mg lexapro since pre-covid times.
In context ↗
Approaches: Diet · Physiotherapy and rehab · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 1 month after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| May 13, 2020 | COVID onsetsymptoms started May 13thIn context ↗ | Not stated | |
| June 2020 | bed-bound over a monthI was bed ridden for over a month.In context ↗ | Severe | |
| February 19, 2021 | about 80% recovered, walking 3 milesI would say I am about 80% recovered. 280 days since initial symptoms.In context ↗ | Mild | Low-histamine diet |
| November 12, 2021 | back at work, walking 10,000+ steps but crashing nightlyBack to 10,000+ steps every day, but like I said, it’s a vicious cycle of hurting every night.In context ↗ | Mild | |
| December 24, 2021 | Omicron reinfection sent her back into long COVIDThis 3rd bout from Omicron in December sent me spiraling back into long Covid.In context ↗ | Severe | |
| July 16, 2022 | about 65-70% recovered 7 months after reinfectionNow, 7 months after reinfection, I feel maybe 65-70% recoveredIn context ↗ | Mild | |
| November 2, 2022 | sudden dramatic cognitive improvement while still symptomaticIn the last 3 months, the improvement has been sudden and dramatic.In context ↗ | Mild |
Adverse events
- Pregabalin (Lyrica)“I was taking pregabalin in September. It solved my nerve issues, with severe drowsiness as the main side effect.” In context ↗ Side effects
- Gabapentin (Neurontin)“I tried gabapentin for 45 days, and it was not for me. Barely touched the pain. Gave me very intense moods.” In context ↗ Mood or psychiatric effects
- Amlodipine (Norvasc)“a side effect for me was blood pooling in my feet, due to my blood vessels widening too much. The pooling made my POTS symptoms 10X worse and the neuropathy unbearable.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Workouts to build muscle is still causing my PEM
In context ↗ - Brain fog
Also causes slurred speech, light sensitivity and difficulty processing words.
In context ↗ - POTS & dysautonomia
my doctor believes that covid has somehow caused POTS
In context ↗ - Pain & fibromyalgia
aching joints/muscles
In context ↗ - Headaches & migraine
cluster headaches
In context ↗ - Light & noise sensitivity
light sensitivity
In context ↗ - Breathlessness
I get shortness of breath still when I am vacuuming the house
In context ↗ - Heart symptoms & palpitations
Can’t lift a case of wine without my heart rate jumping to 140.
In context ↗ - Muscle weakness
muscle weakness
In context ↗ - Neuropathy & tingling
neuropathy (wearing loose dresses bc all clothes hurt)
In context ↗ - Anxiety & low mood
I have my moments of depression and self-pity.
In context ↗ - Flu-like symptoms
hard muscles/lymph nodes ... sore throat
In context ↗ - Loss of smell or taste
losing my sense of smell
In context ↗ - Tinnitus
cured my tinnitus for the first time in 18 months
In context ↗ - Temperature regulation
temp regulation issues
In context ↗
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