Paralyzed at one point with ME/CFS, somewhat better with marijuana and hydroxychloroquine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 16 years
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
It's the CF/ME that I can't shake.
In context ↗ - At worst: Moderate
Some years where I only left the house for the doctor and home. Couldn't do more.
In context ↗ - Now: Somewhat better
Fatigue day in day out has improved but I have setbacks still.
In context ↗ - Began after: another virus
I went autoimmune after SARS1 just over 20 years ago when I was in Australia.
Read from 37 of their posts and comments; links to the 18 this page draws on
Summary
She fell ill with SARS and double pneumonia more than 20 years ago, aged 26, and never fully recovered, developing post-viral chronic fatigue, pain and anxiety; some years she left home only for doctor visits and at one point was paralyzed and had to relearn walking. Medical marijuana from about 2016 lifted her depression and fatigue, and hydroxychloroquine from 2021 eased pain. She remained disabled with fatigue and setbacks after overexertion.
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What they tried
What they credit
Also tried
Their words about each treatment
- medical mj · Helped a lot
discovered it 6yrs ago and it was a game changer for me. Lifted the depression 1st, then the fatigue.
In context ↗ - hydroxycloroquine · Helped
Hydroxycloroquine has helped with pain, which helps the fatigue with better overall sleep.
In context ↗ - methaltrexate · Not said
methaltrexate and hydroxycloraquine treatment for chronic pain and fatigue
In context ↗ - b vitamin injections / prescription b vitamin dose · Helped
b vitamins helped my fog a lot!
In context ↗ - prescription dose of Vitamin D · Helped
Mine was brought back up to normal levels after a 90 day prescription dose of Vitamin D.
In context ↗ - antidepressants · Worse
They put me through all the antidepressants to treat fog. ... Most made the fog worse.
In context ↗ - fluvoxamine · No change
They tried to give me that for foggy head/fatigue a long time ago. ... Never helped with any of it.
In context ↗ - lowest dose gabapentin · Helped
For me its a lowest dose gabapentin at night + mj oil on a cookie.
In context ↗ - melatonin · Helped
Gummys and melatonin are great to help with sleep!
In context ↗ - prescription pain meds · Helped
the only relief I have had from pain, fatigue and anxiety is via traditional meds at low doses.
In context ↗ - budget my energy · Helped
it was a process of trying to manage the symptoms and budget my energy (dont blow it all at one place) that gets me by.
In context ↗ - gym schedules · No change
Even had gym schedules for months on end. It's no cure
In context ↗ - zpak · Not said
I was put on a zpak, steroids and albuterol.
In context ↗ - codeine · Not said
Doped up on codeine then trying to dry out my lungs.
In context ↗ - Pneumonia PT · Helped
Pneumonia PT was ordered (saved me and I used for COVID19 at home with fam)
In context ↗ - Shingles vaccine · Helped
The problem is about 5 years old and improved somewhat when I was finally old enough to get the Shingles vaccine.
In context ↗ - energy drinks · Worse
Energy drinks just make me sick with a headache.
In context ↗
Approaches: Other drugs and medicines · Pacing · Vaccination
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2000 | SARS1 with double pneumonia at age 26; never fully recoveredit hit my lower respiratory first, filled up both lungs in 10 days.In context ↗ | |
| — | years mostly housebound, only leaving home for doctor visits; later paralysed by a slipped hip jointSome years where I only left the house for the doctor and home. Couldn't do more.In context ↗ | |
| about 2016 (6yrs before Dec 2022) | medical marijuana lifted depression first, then fatiguediscovered it 6yrs ago and it was a game changer for me.In context ↗ | |
| April 2021 | rheumatologist treated the autoimmunity; hydroxychloroquine helpingshe is the first doc in the US to treat me for going autoimmune. ... As mentioned it's helping.In context ↗ | Hydroxychloroquine / Plaquenil |
| 2023-01 | flare after overdoing it, exhausted for weeksIf I overdo it; flares back up and then exhausted for weeks.In context ↗ | |
| 2024-07-26 | fatigue improved but setbacks continueFatigue day in day out has improved but I have setbacks still. Activity exacerbate it.In context ↗ |
Adverse events
- Antidepressants (unspecified), Fluvoxamine (Luvox)“They put me through all the antidepressants to treat fog. Most made the fog worse.” In context ↗ Made symptoms worse
- “Many sleep aids however make the morning fog worse.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“I'm more and more sensitive to mj as I age. It can exacerbate my anxiety which makes pots worse too.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I overdo it; flares back up and then exhausted for weeks.
In context ↗ - Brain fog
Still fatigued but no fog or less foggy headed is a miracle for me!
In context ↗ - Pain & fibromyalgia
I started to get chronic pain. ... Still have both, but cope with it better with practice.
In context ↗ - Anxiety & low mood
Been fighting pain, foggy head, anxiety and depression ever since.
In context ↗ - Sleep problems
Either can't fall asleep or can't stay asleep.
In context ↗ - POTS & dysautonomia
It can exacerbate my anxiety which makes pots worse too.
In context ↗ - Neuropathy & tingling
I have to shift the dang left 1 before neuropathy starts up.
In context ↗ - Muscle weakness
Been paralyzed, learned to walk again (slipped hip joint from hEDS pinched nerve couldn't walk)
In context ↗ - Breathlessness
I didn't notice that my lung capacity was so small.
In context ↗
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