ME/CFS
Severe → somewhat better
Severe, mostly bedbound ME/CFS, somewhat better; beta blocker eased palpitations, CBD pain
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
Severe/very severe ME/CFS is a whole other reality that most people can't even fathom.
In context ↗ - At worst: Severe
I'm severe now/housebound mostly bedbound (since end of 2019).
In context ↗ - Now: Somewhat better
I haven't improved physically but I have cognitively and I'm very grateful for that.
In context ↗ - Began after: injury or surgery
I got sick 8 months after falling off a ladder at work.
Read from 41 of their posts and comments; links to the 23 this page draws on
Summary
Oak 44195 was mild for about six months, then back-to-back flus and bronchitis left them moderate to severe, and they have been severe, housebound and mostly bedbound since the end of 2019; at worst they could not read, write or watch TV. A beta blocker in 2021 eased palpitations and helped them function more while lying down; they regained some ability to read, write and think, though they did not know why. Topical CBD continued to help pain, and doxylamine helped sleep and took the edge off PEM. They remained severe, near very severe, in late 2023.
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What they tried
What they credit
Also tried
digestive enzymes· HelpedGABA· Helpeddoxylamine succinate· Helped · wore offLazarus Naturals Full Spectrum CBD Body+Massage Oil (topical CBD)· Helpedheating pad· Helpedmedicinal mushrooms (especially Reishi)· Helped · wore offsublingual methylated B12 and folate· Helped · wore offsublingual methylated B12 and folate· Helped · wore offmagnesium lotion· Helped · wore offClaritin· No changeashwagandha· WorseLDN· Much worseexercise / physical labour job· Much worsesupplements (general)· Not saidrest, hydration and staying warm· Not saidCBD (cannabidiol)· Not said
Their words about each treatment
- supplements (general) · Not said
I have an entire supplement graveyard of stuff that didn't work or worked for a while, then stopped.
In context ↗ - metoprolol tartrate (beta blocker) · Helped
I was also able to get on a beta blocker in 2021, which helped my resting tachycardia and palpitations. And that helped me regain some function while laying down.
In context ↗ - time · Helped
In my case, I found with time I stabilized cognitively to a certain extent.
In context ↗ - LDN · Much worse
Nightmares/vivid dreams, significant increase in exhaustion and worst of all suicidal depression. Started at 1mg, then tried 0.5mg, still got these side effects. Had to stop.
In context ↗ - digestive enzymes · Helped
Only digestive enzymes, an antihistamine for sleep and CBD for pain still help to some extent.
In context ↗ - GABA · Helped
Taking GABA sometimes helps me.
In context ↗ - doxylamine succinate · Helped
I take doxylamine succinate for sleep, but I have to cycle it, otherwise I build a tolerance.
In context ↗ - Lazarus Naturals Full Spectrum CBD Body+Massage Oil (topical CBD) · Helped
I use Lazarus Naturals Full Spectrum CBD Body+Massage Oil (fragrance free) 2000 mg as needed for pain flares.
In context ↗ - heating pad · Helped
Heating pad (Putting it on my neck, shoulders and briefly on the back of my head helps me
In context ↗ - ashwagandha · Worse
I crashed on it. I can't handle any adaptogens anymore unfortunately.
In context ↗ - medicinal mushrooms (especially Reishi) · Helped
Some of the medicinal mushrooms, especially Reishi, helped me back in early 2019. Even had a small improvement on them for a few months.
In context ↗ - Claritin · No change
I tried Claritin to see if it would do the same, but it didn't.
In context ↗ - rest, hydration and staying warm · Not said
Rest (I'm already in darkened room with earplugs). Hydrate. Stay warm.
In context ↗ - exercise / physical labour job · Much worse
If I hadn't gone back to my physical labor job, I probably wouldn't have become severe.
In context ↗ - sublingual methylated B12 and folate · Helped
I also had a small improvement in early 2019 taking sublingual methylated B12 and folate (I have the MTHFR gene mutation) along with medicinal mushrooms.
In context ↗ - magnesium lotion · Helped
Magnesium lotion used to really help my pain a ton too.
In context ↗ - CBD (cannabidiol) · Not said
I did but I got indigestion from it, so I just stick with the topical now.
In context ↗
Approaches: Beta-blockers
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | mild ME/CFS; symptoms came and wentI was mild like this for 6 months.In context ↗ | Mild | |
| — | two flus and bronchitis back to back; became moderate to severeThen I got sick with the two flus and bronchitis, back to back.In context ↗ | Moderate | |
| early 2019 | short-lived small improvement in function after B12/folate and reishi mushrooms, lasting a few monthsI had a small improvement in early 2019.In context ↗ | Moderate | |
| May 2019 | crashed badly and kept getting worseThen I crashed badly in May 2019 and kept getting worse.In context ↗ | Moderate | |
| end of 2019 | became severe, housebound and mostly bedboundI'm severe now/housebound mostly bedbound (since end of 2019).In context ↗ | Severe | |
| about a year after becoming severe | lost the ability to read, write or watch TV; lay in a dark room with earplugs all dayJust lay in a dark room with earplugs in all day, every day.In context ↗ | Severe | |
| 2021 | beta blocker eased tachycardia and palpitations; regained some ability to read, write and think while lying downI was also able to get on a beta blocker in 2021, which helped my resting tachycardia and palpitations.In context ↗ | Severe | Metoprolol (Lopressor, Toprol) |
| December 2023 | still severe, on the edge of very severe; cognitively better but physically declined; bedbound but able to reach the toilet aloneYup, bedbound but I can get to the toilet and back on my own.In context ↗ | Severe |
Adverse events
- Low-dose naltrexone“Nightmares/vivid dreams, significant increase in exhaustion and worst of all suicidal depression. Started at 1mg, then tried 0.5mg, still got these side effects. Had to stop.” In context ↗ Suicidal thoughts or attempt
- Low-dose naltrexone“Nightmares/vivid dreams, significant increase in exhaustion and worst of all suicidal depression.” In context ↗ Side effects
- Low-dose naltrexone“LDN made me worse too. Tried it when I was still moderate. ... significant increase in exhaustion” In context ↗ Made symptoms worse
- Ashwagandha“I crashed on it. I can't handle any adaptogens anymore unfortunately.” In context ↗ Made symptoms worse
- Metoprolol (Lopressor, Toprol)“I think it's lowering my blood pressure too much ... I have near syncope every time I'm upright too long in the bathroom, and I passed out in there a few months ago.” In context ↗ Low blood pressure or fainting
- Metoprolol (Lopressor, Toprol)“I'm on .75 mg Metoprolol tartrate twice daily and have more fatigue and sometimes lightheadedness. I think it's lowering my BP too much” In context ↗ Side effects
- CBD (cannabidiol)“I did but I got indigestion from it, so I just stick with the topical now.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
doxylamine succinate helps take the edge off my PEM
In context ↗ - Brain fog
My mind was so foggy I could barely think.
In context ↗ - POTS & dysautonomia
However it doesn't help my POTS, which is really bad.
In context ↗ - Sleep problems
Sleep is still a major struggle.
In context ↗ - Pain & fibromyalgia
Topical CBD oil helps my pain flares immensely.
In context ↗ - Light & noise sensitivity
Still cannot tolerate sound at all.
In context ↗ - Heart symptoms & palpitations
it really helps control my palpitations and also lowers my high resting heart rate
In context ↗ - Muscle weakness
extreme muscle weakness on minimal exertion
In context ↗ - Anxiety & low mood
I get bad anxiety just laying in the dark doing nothing when I'm sleep deprived and wired.
In context ↗
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