ME/CFS
Severe → no benefitIll for 11 yearsNeeds ongoing treatment
Mostly housebound and at times bedbound with ME/CFS, no benefit from treatments tried
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 11 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I've had it for 11 years, diagnosed for 3
In context ↗ - At worst: Severe
I'm still mostly bedbound (can't stand up for more than a minute or so at a time)
In context ↗ - Now: No benefit
nope, I'm worse. Part of it has been the learning curve, part of it was getting covid
In context ↗ - Began after: another virus
Yes, onset was viral. I was never tested so I don't know what virus it was, but it was the worst flu I've ever experienced to this day.
Read from 65 of their posts and comments; links to the 37 this page draws on
Summary
Tundra 42625 traced their ME/CFS to a viral illness around 2011 and worsened over the next decade, with some improvements and relapses, to mostly housebound and at times mostly bedbound, unable to stand for more than a minute. Low-dose naltrexone, intermittent fasting, a gluten-free plant-based diet, NAC and heart-rate-monitored pacing gave partial gains. A 2024 COVID infection left them worse.
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What they tried
Also tried
LDN· Helped a lotplant-based diet· Helped a lotintermittent fasting· Helped a lottherapy· Helpedgluten-free diet· Helpednaturopath· Helpedpacing· Helpedaggressive rest· Helpedcool bath· HelpedTHC-free CBD oil· HelpedL-theanine· Helped · wore offpropranolol· Helpedheart rate monitor / Visible· Helpedcovid vaccine· Helpeddairy-free diet· HelpedNAC· Helpedseroquel· Helpedzoloft· Helpedphosphatidylserine· Helpedcutting sugar· Helpeddoxepin· Helpedgaba· Helpedmelatonin· Helpedcutting out tv· HelpedPaxlovid· HelpedSSRIs· Worsewellbutrin· Worseexercise· Worseneck traction· WorseAmitriptyline· Worsestimulant medication· Much worseelimination diet· Not saidketo· Not said
Their words about each treatment
- stimulant medication · Much worse
Stimulants made me MUCH worse. I cannot stress this enough.
In context ↗ - SSRIs · Worse
Exercise, socialize, SSRIs, yada yada yada, these have all made things worse.
In context ↗ - wellbutrin · Worse
while it does give me energy it makes my symptoms worse. I'm actually at the end of a tapering down program to get off it for that reason.
In context ↗ - therapy · Helped
the only thing that seems to help is resting in the bedroom with earplugs. And therapy.
In context ↗ - gluten-free diet · Helped
I cut gluten 2 years ago which helped with nerve pain and brain fog.
In context ↗ - naturopath · Helped
My naturopath has helped quite a bit. ... Without her I wouldn't have recovered the ability to watch tv
In context ↗ - pacing · Helped
I've been pacing rigorously for 2-3 years now ... my symptoms are much more manageable and most days I feel pretty good
- aggressive rest · Helped
I've been aggressively resting for the past few months and it has softened considerably.
In context ↗ - cool bath · Helped
I've started taking a cool bath before bed and it's helped tons.
In context ↗ - THC-free CBD oil · Helped
it helped a lot with headaches and helped me to feel calmer as well
In context ↗ - L-theanine · Helped
Normally I take L-theanine for this and it helps within minutes ... but lately it hasn't been very effective
In context ↗ - neck traction · Worse
while it got rid of that symptom it worsened others
In context ↗ - LDN · Helped a lot
I'm on LDN (miracle) ... I take 3ml of LDN every day and that's made an enormous difference.
- propranolol · Helped
Sometimes I get symptoms from just reaching for something (heart spikes) but that's mostly taken care of by the propranolol.
In context ↗ - heart rate monitor / Visible · Helped
visible is incredible ... using visible has been pretty educational for me as to what leads to PEM
In context ↗ - covid vaccine · Helped
I decided to get vaxxed and my experiences with them have been pretty good and getting better with each one
In context ↗ - dairy-free diet · Helped
Cutting dairy 2 months ago has helped with brain fog, headaches, and chronic sinusitis.
In context ↗ - elimination diet · Not said
Am currently doing an elimination diet to learn more.
In context ↗ - NAC · Helped
I take NAC and it has helped me significantly with cognitive functioning
In context ↗ - Amitriptyline · Worse
I was on Amitriptyline for a couple of months, though I started at 10mg. I started to feel a lot worse
In context ↗ - seroquel · Helped
My doctors put me on a bunch of medication to manage it (seroquel and zoloft) and it began to even out.
In context ↗ - phosphatidylserine · Helped
Biggest improvements (aside from time) came from NAC, phosphatidylserine, cutting sugar and eating entirely plant-based.
In context ↗ - plant-based diet · Helped a lot
being plant-based made a huge difference to my symptoms
In context ↗ - intermittent fasting · Helped a lot
It's helped me so much. It really regulates my HR and I have more energy/fewer symptoms.
In context ↗ - keto · Not said
I did find keto better for weight loss, but lowering inflammation is a higher priority for me.
In context ↗ - doxepin · Helped
I take sleeping medications/supplements that don't negatively affect my heart rate or my symptoms, like doxepin and seroquel, l-theanine, gaba, melatonin.
In context ↗ - cutting out tv · Helped
I had to do this for about 6 months when I couldn't tolerate tv ... I can now watch like 4h of tv a day
In context ↗ - Paxlovid · Helped
I have more energy than normal despite having covid ... My chronic sinusitis, which is my red flag symptom for telling me where I'm at, is all but vanished.
In context ↗
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 6.5 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2011 | viral onset, worst flu of her lifeit was the worst flu I've ever experienced to this dayIn context ↗ | Not stated | |
| 2013 | symptoms improved a lot from the second trimester of pregnancymy symptoms definitely improved a lot starting from the second trimester onIn context ↗ | Not stated | |
| 2013-2014 | post-partum crashBut post-partum it was a living hell.In context ↗ | Not stated | |
| 2018-2019 | stimulant medication drove a steady declinethe stims tipped me over into severe CFSIn context ↗ | Moderate | |
| 2019-09 | aggressive rest softened the constant 'pull' and pre-flu feelingI've been aggressively resting for the past few months and it has softened considerably.In context ↗ | Moderate | Radical rest |
| 2021-01 | long crash after too much screen/game use in bed, now mostly bedboundI used to be mostly housebound but right now I feel mostly bedbound.In context ↗ | Severe | |
| 2021-02 | LDN and propranolol; feels pretty good through the dayI'm on LDN (miracle) and propranolol and I actually feel pretty good throughout the day.In context ↗ | Moderate | Low-dose naltrexone |
| 2021 | massive relapse with rolling panic attacks, lost baselineI had a massive relapse last year that involved rolling panic attacks.In context ↗ | Severe | |
| 2022-02 | fairly severe, horizontal most of the day but able to do a few thingsI'm fairly severe but not like super severe. I spend most of my day horizontal but can do a few things.In context ↗ | Severe | |
| 2022-07 | seroquel and zoloft evened out the panic and helped her restMy doctors put me on a bunch of medication to manage it (seroquel and zoloft) and it began to even out.In context ↗ | Moderate | |
| 2022-08 | intermittent fasting cut average symptom level from 9.6 to 3.7Average symptom level for first 7 days of IF: 3.7In context ↗ | Severe | Intermittent fasting |
| 2023-01 | setback after taking risks over the holidays while feeling greatHad a reality check over the holidays though where I was feeling great and took a few risks. Currently digging out of a setback.In context ↗ | Severe | |
| 2024-01 | first COVID-19 infection, took PaxlovidLooks like I'm actually sick for the first time in almost a year.In context ↗ | Severe | |
| 2024-05 | worse overall, partly from covid and the pacing learning curvenope, I'm worse.In context ↗ | Severe |
Adverse events
- Stimulants (unspecified)“stimulants have been allowing me to push past my limits making things worse and worse and worse” In context ↗ Made symptoms worse
- Stimulants (unspecified)“the stims tipped me over into severe CFS” In context ↗ Made symptoms worse
- Stimulants (unspecified)“They masked many of my symptoms, kept my heart rate elevated and kept me in rolling PEM” In context ↗ Heart rhythm problems
- Antidepressants (unspecified), Bupropion (Wellbutrin), Amitriptyline (Elavil), Sertraline (Zoloft), Doxepin (Sinequan, Silenor)“SSRIs, yada yada yada, these have all made things worse” In context ↗ Made symptoms worse
- Antidepressants (unspecified), Bupropion (Wellbutrin), Amitriptyline (Elavil), Sertraline (Zoloft), Doxepin (Sinequan, Silenor)“I've found SSRIs to actually drain my energy” In context ↗ Side effects
- Amitriptyline (Elavil)“I was on Amitriptyline for a couple of months ... I started to feel a lot worse ... It was making my heart rate much more volatile which was leading to PEM” In context ↗ Heart rhythm problems
- “if I took the standard dose of CBD, it was stimulating and awful” In context ↗ Side effects
- Spinal and cervical traction“tractioning my own neck (do NOT do this, it was very risky and I was very dumb, while it got rid of that symptom it worsened others)” In context ↗ Made symptoms worse
- Symptom-tracking apps and wearables (Visible)“I've been doing it for more than a week now and my anxiety is through the roof. It's debilitating me.” In context ↗ Mood or psychiatric effects
- Paxlovid / nirmatrelvir“Aside from pooping my guts out all day and a sore throat, I feel better than I do on a non-covid, regular mecfs day.” In context ↗ Gut side effects
Symptoms mentioned
Brain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityNeuropathy & tinglingPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
have strong pattern of PEM (including flu symptoms post-exertion)
In context ↗ - Brain fog
Cutting dairy 2 months ago has helped with brain fog, headaches, and chronic sinusitis.
In context ↗ - Sleep problems
I take a variety of meds and supplements but still wake once per night usually.
In context ↗ - Headaches & migraine
it helped a lot with headaches and helped me to feel calmer as well
In context ↗ - Heart symptoms & palpitations
when I'm in a bad way with my cfs my heart rate becomes really volatile
In context ↗ - Flu-like symptoms
I'm laying in bed at the moment with that feeling I always get before I develop the flu
In context ↗ - Neuropathy & tingling
I used to get a low-grade electrical feeling in my skin all the time, it was horrendous.
In context ↗ - Temperature regulation
I always have to be careful not to overheat.
In context ↗ - Light & noise sensitivity
I had to do this for about 6 months when I couldn't tolerate tv.
In context ↗