ME/CFS
Severe → much betterIll 3 years before improving or writingNeeds ongoing treatment
Bedbound early with ME/CFS, now much better with graded exercise and nicotinamide riboside
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Feb 2021
In their words
- Condition: ME/CFS
I want to vent about my CFS
In context ↗ - At worst: Severe
It started with walking to the bathroom and back twice. That would ruin me. I’d rest.
In context ↗ - Now: Much better
I have managed to get to a point where I was destroying myself in the gym without any MAJOR PEM occurring. ... my mental fatigue takes a lot longer to resolve than my physical fatigue.
In context ↗ - Began after: another virus
After 5 mins he told me I had post infective fatigue because in the previous few years I had had
Read from 29 of their posts and comments; links to the 18 this page draws on
Summary
Nightjar 19508, a 29-year-old in London, developed post-infective fatigue after a hiking holiday in Jordan at 26, on top of dilated cardiomyopathy. He was bedbound early on, then built himself back with self-directed graded exercise, reaching gym workouts and full-time work from home. He credits nicotinamide riboside for a somewhat normal life but still has insomnia, flare-ups and PEM, and was signed off work for weeks after overwork in 2020.
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What they tried
What they credit
Also tried
growth hormone· Helpedmirtazapine· Helped · wore offquetiapine· Helped · wore offpregabalin· Helped · wore offUnplug· Helpedzopiclone· Helped · wore offdiazepam, temazepam· Helped · wore offdiazepam, temazepam· Helped · wore offmelatonin· Helped · wore offpromethazine· Helped · wore offloperamide (Imodium)· Helpedinulin· Helpedavoiding wheat· Helpedacupuncture· No changegraston· No changedeep tissue release· No changechiros· No changeosteos· No changethoracic epidurals· No changeparavertebral nerve blocks· No changeIM Botox shots· No changeCBT· No changeEvening Primrose Oil· No changemeditation, mindfulness· No changesleep hygiene· No changevitamin B complex· No changehigh dose B12 via injection· No changeinsulin· Not saidintra workout heavy molecular weight sugars· Not saidhydrolysed protein (peptopro/hydrolysed collagen)· Not saidD-ribose· Not saidmagnesium· Not saidpeppermint tea· Not saidIsotretinoin (Accutane)· Not said
Their words about each treatment
- acupuncture · No change
Did absolutely nothing for me :(
In context ↗ - graston · No change
No ones been able to solve it for 5 years - acupuncture, graston, deep tissue release, chiros, osteos, thoracic epidurals, paravertebral nerve blocks and IM Botox shots...
In context ↗ - THC and CBD oil · Helped
It helps a lot with my CFS. Mostly, I think, because it lowers my ability to process sensory information.
In context ↗ - graded exercise therapy · Helped
I basically did a little bit or exercise every day (as much as my CFS would permit) until I got back to being in the gym 4-5 times a week.
In context ↗ - Nicotinamide Riboside · Helped a lot
Nicotinamide Riboside helped me a lot - probably the most significant find I've made.
In context ↗ - insulin · Not said
I was using a LOT of recovery aids - like insulin, growth hormone, intra workout heavy molecular weight sugars, hydrolysed protein (peptopro/hydrolysed collagen), D-ribose etc.
In context ↗ - growth hormone · Helped
I’ve started adding growth hormone back in which really helps my sleep.
In context ↗ - CBT · No change
I’ve tried thinking away my health issues but alas it doesn’t work.
In context ↗ - mirtazapine · Helped
We started with mirtazapine at 15mg, every 4 weeks it became ineffective so we had to up it to 30 then 45.
In context ↗ - quetiapine · Helped
Then we added in quetiapine which has really helped. Went from 25 to 50 to 75 and now 100.
In context ↗ - pregabalin · Helped
we added pregabalin and titrated the dose up from 50 twice a day, to the 100 then 150.
In context ↗ - Evening Primrose Oil · No change
Tried it but it didn’t do anything for me.
In context ↗ - Unplug · Helped
on top of that I take Unplug which is a night time nootropic stack that really helps with my sleep quality.
In context ↗ - zopiclone · Helped
He put me on zopiclone, then when that stopped working he added promethazine and finally melatonin.
In context ↗ - diazepam, temazepam · Helped
Zopiclone, diazepam, temazepam, melatonin and promethazine worked for about 2 weeks each then lost efficacy.
In context ↗ - meditation, mindfulness · No change
I tried meditation, mindfulness, had a sleep study done, introduced sleep hygiene and all sorts of crap. None of that worked for me at all.
In context ↗ - sleep hygiene · No change
introduced sleep hygiene and all sorts of crap. None of that worked for me at all.
In context ↗ - magnesium · Not said
Magnesium doesn’t make me tired at all.
In context ↗ - vitamin B complex · No change
I expect most of us have tried a vitamin B complex. It did nothing for me.
In context ↗ - high dose B12 via injection · No change
I've done high dose B12 via injection and it did nothing for me unfortunately
In context ↗ - loperamide (Imodium) · Helped
2mg of loperamide (Imodium) a day helps me a lot with no side effects or peppermint tea.
In context ↗ - inulin · Helped
Inulin on the other hand really helps me, which is odd because it’s pure fibre.
In context ↗ - avoiding wheat · Helped
If you’re like me lots of wheat makes it worse so be mindful of the ingredients.
In context ↗ - Isotretinoin (Accutane) · Not said
I’ve got IBS too and weirdly high fibre foods set me off. Mine is from being on accutane and then having a campylobacter infection that nearly killed me.
In context ↗
Approaches: Other drugs and medicines · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 26 | post-infective fatigue began after hiking holiday in JordanI was diagnosed with post-infective fatigue syndrome after I went on holiday to Jordan at the age of 26.In context ↗ | Mild | |
| first 6 months | write-off months, only walking to the bathroomIt started with walking to the bathroom and back twice. That would ruin me. I’d rest.In context ↗ | Severe | |
| 18 months after onset | built up with self-directed graded exercise to the gymIt took about 4 months to get from walking to the bathroom to going to the gym.In context ↗ | Mild | Graded exercise therapy (GET) |
| about two years in | crashed after deadlifts, two days in bedDrove home and went to bed for 2 days.In context ↗ | Moderate | |
| April 2020 | crashed after months of overwork, signed off six weeksBeen working solidly on that until 3 weeks ago when I crashed so hard I got signed off for 6 weeks.In context ↗ | Severe | |
| August-September 2020 | flare-up, signed off work five weeksI had a flare up that’s caused me to be signed off the last 5 weeks (and next week).In context ↗ | Moderate | |
| October 2020 | back to gym training and full-time work from home, with rest and limitsI have managed to get to a point where I was destroying myself in the gym without any MAJOR PEM occurring.In context ↗ | Mild | Graded exercise therapy (GET) |
Adverse events
- “5 reps in and my entire body was shaking uncontrollably and we had to call the workout. I lay on the sofa at the gym for about 3 hours. Drove home and went to bed for 2 days.” In context ↗ Made symptoms worse
- “My heart failure meds make me lightheaded when I stand up - I’m on the lowest possible dose too” In context ↗ Low blood pressure or fainting
- Isotretinoin (Accutane)“I’ve got IBS too and weirdly high fibre foods set me off. Mine is from being on accutane and then having a campylobacter infection that nearly killed me.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I do have a system that allows me to build from a PEM to being able to train.
In context ↗ - Brain fog
My brain feels like it’s full of bees and the top of my brain feels fuzzy all the time like heat is coming out of it.
In context ↗ - Sleep problems
I’m on quite a hefty sleep stack because I’ve had insomnia since I was about 4
In context ↗ - Heart symptoms & palpitations
I had been diagnosed with dilated cardiomyopathy the previous year after being rushed to hospital with fast atrial fibrillation with 200bpm.
In context ↗ - Pain & fibromyalgia
I have severe back pain caused by some kind of muscular issue.
In context ↗ - Gut problems
I’ve got IBS too and weirdly high fibre foods set me off.
In context ↗ - Anxiety & low mood
acceptance of the situation will help you recover, avoid depressive episodes (I still get them)
In context ↗ - Light & noise sensitivity
Drive home slowly, pulling over as necessary when the sensory input was too high (I found sunglasses helped).
In context ↗ - POTS & dysautonomia
My heart failure meds make me lightheaded when I stand up
In context ↗
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