ME/CFS
Severe → near normalIll 2.5 years before improving or writingNeeds ongoing treatment
Mostly bed-bound with ME/CFS, now nearly back to normal after HRT
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Mar 2018
In their words
- Condition: ME/CFS
I was diagnosed with ME/CFS about a year and a half ago
In context ↗ - At worst: Severe
the last year of which I was mostly severe. Bed-bound 95% of the time.
In context ↗ - Now: Near normal
I’ve had to cut out gluten and maintain a series of supplements and whatnot ... I don’t think I’ve ever felt so utterly healthy in my life.
In context ↗ - Began after: nothing they could name
Slow onset, in cycles. It began perhaps three or four months after a kidney stone.
In context ↗
Read from 31 of their posts and comments; links to the 18 this page draws on
Summary
Osprey 69527's slow-onset ME/CFS began around 2015 with cycles of flu-like symptoms and worsened after hard ranch work in July 2016; they were sick for roughly two and a half years, mostly bed-bound for the last year. Adderall eased brain fog and some pain, nicotine helped sound sensitivity, opioids eased pain and fatigue but sometimes worsened sound sensitivity, and CBD eased pain and fatigue. A head cold briefly lifted the illness. Starting MtF HRT in September 2017 dramatically improved them within an hour, and after three and a half months Adderall and cigarettes were gone.
Ask Miruvor AI
What they tried
What they credit
Also tried
vitamin D supplements· HelpedAdderall· Helpedopiates/opioids· Helped · wore offpineapple juice· Helpedexercise on the lifestyle advice· Worsemarijuana / THC· WorseWellbutrin· Much worsemoved out to the country· Not saidcutting out gluten· Not saida series of supplements· Not said
Their words about each treatment
- exercise on the lifestyle advice · Worse
I dropped my baseline pretty bad on the exercise one though
In context ↗ - moved out to the country · Not said
I even moved out to the country for four months for food and fresh air and some good old farm work. Last bit was a mistake.
In context ↗ - marijuana / THC · Worse
I generally find Marijuana to increase brain fog and fatigue, as well as lower my crash threshold so I use it very rarely.
In context ↗ - vitamin D supplements · Helped
We tested for various vitamin deficiencies, had low D, took supplements, and it cured the peripheral neuropathy completely in about a month of 10k IU a day.
In context ↗ - Adderall · Helped
It doesn't improve the physical fatigue a whit. But it helps tremendously with the brain fog
In context ↗ - CBD · Helped
Turned out one of them was CBD
In context ↗ - smoking cigarettes · Helped
I found out that smoking cigarettes helps a fair bit
In context ↗ - opiates/opioids · Helped
Prevents backlash from physical activity, alleviates pain and fatigue.
In context ↗ - pacing · Helped
Once I finally accepted being sick, learned how to pace myself, and started smoking cigarettes, I was able to maintain low level ability.
In context ↗ - Wellbutrin · Much worse
The most fucked I've ever felt was the fifth day after my doc tried me on Wellbutrin.
In context ↗ - pineapple juice · Helped
It won't fix you, but its been the difference between being able to feed myself and needing to be spoon fed more than once.
In context ↗ - cross-sex MtF HRT (estradiol and spironolactone) · Helped a lot
Basically, I went to a clinic that works on informed consent and started taking cross-sex MtF HRT. ... It took less than an hour.
In context ↗ - cutting out gluten · Not said
I’ve had to cut out gluten and maintain a series of supplements and whatnot.
In context ↗ - a series of supplements · Not said
maintain a series of supplements and whatnot
In context ↗
Approaches: Other drugs and medicines · Pacing · Sex hormones
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 |
|---|---|---|---|
| onset | slow onset, cycles of flu-like symptoms with a dropping baselineSlow onset, in cycles. It began perhaps three or four months after a kidney stone.In context ↗ | Mild | |
| 15 mo | four months in the country including farm work, which made things worseI even moved out to the country for four months for food and fresh air and some good old farm work. Last bit was a mistake.In context ↗ | Mild | |
| July 2016 | woke in full crash after two days of hard ranch workWorked my butt off for two days, hurting like hell, and the next morning I woke up full crash mode.In context ↗ | Severe | |
| early 2017 | bed-bound almost all the time, could not walk to the bathroom without the wallBed-bound 95% of the time.In context ↗ | Severe | |
| about April 2017 | a head cold left almost back to mild for about two monthsI had a period of maybe two months where I was almost back to mild.In context ↗ | Moderate | |
| mid 2017 | slowly backslid from the post-cold gains, though still better than beforeIt slowly ramped up again, but I'm still a solid rank or two better than before.In context ↗ | Moderate | |
| September 2017 | started MtF HRT at an informed-consent clinic; shift within an hourWent from moderate/severe to mild, and I can feel it improving every day.In context ↗ | Mild | Hormone replacement therapy (HRT) |
| four days into HRT | crashed after an hours-long outing with sound and company, recovered in three daysI crashed a bit, but I recovered in three days.In context ↗ | Mild | |
| November 2017 | three and a half months on HRT: cardio, squats, errands and a four-hour drive, off Adderall and cigarettesI don’t think I’ve ever felt so utterly healthy in my life.In context ↗ | Near normal | Hormone replacement therapy (HRT) |
| March 2018 | life back and Adderall no longer neededOnce I found a way to manage my condition and get my life back, adderall just tweaked me out and I stopped using it.In context ↗ | Near normal |
Adverse events
- Amphetamine salts (Adderall)“On the negative side it lowers your appetite, but that stopped for me a couple of weeks in” In context ↗ Side effects
- Amphetamine salts (Adderall)“It can cause heart rhythm issues, though I found that those largely went away as soon as I balanced my eating habits again” In context ↗ Heart rhythm problems
- Amphetamine salts (Adderall)“NEVER mix it with an energy shot, lol. Just about killed myself doing that once.” In context ↗ Other
- Amphetamine salts (Adderall)“often I won't take the whole dose because if I'm fatigued enough it can make it worse” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“the IR pills are horrible by hour four. I feel like I've been gut-punched in the third eye and can't comprehend anything.” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“The most fucked I've ever felt was the fifth day after my doc tried me on Wellbutrin.” In context ↗ Side effects
- Amphetamine salts (Adderall)“adderall just tweaked me out and I stopped using it” In context ↗ Side effects
- Cannabis (THC, marijuana)“I generally find Marijuana to increase brain fog and fatigue, as well as lower my crash threshold” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“THC can trigger what feels like a cytokine rush” In context ↗ Made symptoms worse
- Everyday exercise and activity“I dropped my baseline pretty bad on the exercise one though” In context ↗ Made symptoms worse
- Opioids (unspecified)“It takes several days of use and the endurance of at least one day-long heavy migraine before effective dose can be achieved.” In context ↗ Side effects
- Opioids (unspecified)“Constipating.” In context ↗ Gut side effects
- Opioids (unspecified)“Certain varieties often exacerbate sound sensitivity.” In context ↗ Made symptoms worse
- Opioids (unspecified)“any kind of opiate after I push through a few days of initial headaches” In context ↗ Side effects
- Nicotine patches“Has a tendency to exacerbate my light sensitivity and therefore how often I experience migraines.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Mental, social, and physical exertion would exacerbate the symptoms, sometimes to the point I couldn't stand, speak, write, even look at someone.
In context ↗ - Brain fog
finding myself staring at the stove for twenty minutes, wondering why the food was still cold (forgot to turn on the burner)
In context ↗ - POTS & dysautonomia
It constricts veins, effectively increasing blood pressure, and that helps with OI!
In context ↗ - Sleep problems
The more fatigued I felt the harder it was to sleep, and during a bad crash I'd be lucky to hit 3 hours in a night.
In context ↗ - Pain & fibromyalgia
The biggest issue was severe fatigue, closely followed by pain.
In context ↗ - Headaches & migraine
I'd usually try anyway and thereby give myself a migraine.
In context ↗ - Light & noise sensitivity
The sound sensitivity was horrible. Raindrops sounding like bullets
In context ↗ - Neuropathy & tingling
I used to have pins and needles everywhere, numb spots, etc.
In context ↗ - Flu-like symptoms
I'd be fine, and then the next day I'd feel lousy, like I was coming down with a cold. Sore throat, achy, fatigued, but no drippy nose or cough.
In context ↗ - Anxiety & low mood
the best thing I've found to combat the depression and anxiety
In context ↗ - Temperature regulation
I've had a hot flash here and there
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID largely housebound, improved with nicotine patches and mestinon, then relapsed
Glade 60608 developed long COVID after a mild 2022 infection, with POTS and later an ME/CFS-like illness that left them largely housebound. Nicotine patches, mestinon and CGRP migraine drugs (Nurtec, then Qulipta) raised their baseline enough to accept a…
-
Bedbound with long COVID, now much better on low-dose naltrexone and Valtrex
They caught COVID in December 2023; by mid-2024 a crash after a trip left them bed-bound, unable to tolerate light or sound. Low-dose naltrexone, titrated slowly from 0.10mg to 1mg, plus Valtrex, beta blockers and other drugs, improved their baseline from…
-
Not enough detail to draw a path
Mostly bedbound with long COVID, nicotine patches eased brain fog but they remained low
A US patient infected with COVID in early 2022 was reinfected twice and has been mostly bedbound since mid-2023. Low-dose nicotine patches eased brain fog, light and sound sensitivity and mildly eased exercise intolerance soon after starting; the neuro gains…
-
Not enough detail to draw a path
Bedbound then housebound with ME/CFS, now much better, credits low-dose naltrexone
Swan 81993 developed long COVID a few years ago, mostly functional until a reinfection before diagnosis left them bedbound for months and housebound for over a year, unable to work. Antihistamines, a low histamine diet and mast cell stabilisers eased their…