ME/CFS
Outcome unclearNeeds ongoing treatment
ME/CFS from mono, months in bed, relapse; low-dose naltrexone gave four to six hours
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2024
In their words
- Condition: ME/CFS
I got MECFS from mono
In context ↗ - At worst: Severe
I was profoundly disabled until 2020 when I started taking low-dose naltrexone.
In context ↗ - Began after: glandular fever or EBV
EBV caused mine. When I got mono I didn’t realize I had mono.
Read from 86 of their posts and comments; links to the 37 this page draws on
Summary
Plover 32664 developed ME/CFS from mono in 2004, spent months resting in bed, then had an eight-year remission and worked full time. A 2012 car accident brought it back, leaving her one or two usable hours a day until low-dose naltrexone in March 2020 gave her four to six usable hours and let her sleep through the night most nights. She stayed disabled, still crashed after overdoing it, and both a Moderna booster and a Tdap caused month-long crashes.
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What they tried
Also tried
LDN (low-dose naltrexone)· Helped a lot · wore offradical rest· Helped a lotprednisone· HelpedAdderall· Helpedpacing· Helpedmedical cannabis (MMJ)· HelpedCBD RSO· Helpedmoved to Florida for the winter· HelpedACT (acceptance and commitment therapy)· HelpedXanax· Helpedmagnesium· Helpedfour-count breathing· Helpedallergy pill and azelastine spray· HelpedPilates· Helpedacyclovir· No changevitamin D· No changegabapentin· WorseLyrica· Worsephysical therapy (PT)· Worsetrazodone· WorseSSRIs· Worsemelatonin· Worsehomeopathy· WorseCOVID vaccination as treatment· Worseoxycodone· Not said
Their words about each treatment
- LDN (low-dose naltrexone) · Helped a lot
I got LDN from pain management and that was life-changing
In context ↗ - prednisone · Helped
it helped me so much with my issues that I still have one
In context ↗ - Adderall · Helped
as soon as I started taking stimulants I instantly slept better because of this problem you describe right here
In context ↗ - pacing · Helped
Once I figured out how to pace properly I was able to start accomplishing things.
In context ↗ - medical cannabis (MMJ) · Helped
MMJ helps with my muscle and nerve pain
In context ↗ - CBD RSO · Helped
the CBD RSO actually helps me feel refreshed when I wake up which I never ever experience
In context ↗ - gabapentin · Worse
I took gabapentin for years for nerve pain and it made me miserable
In context ↗ - Lyrica · Worse
they were causing so so much fatigue and brain fog for me they actually made me worse
In context ↗ - oxycodone · Not said
For me it does not help with the bone and joint pain so I still take oxycodone
In context ↗ - radical rest · Helped a lot
Then I did nothing but rest for four or five months and I felt better and I started working again
In context ↗ - moved to Florida for the winter · Helped
I went to Florida and I went to the $400 studio apartment and I just laid around for a few months in the heat. It helped.
In context ↗ - acyclovir · No change
I was taking acyclovir back then
In context ↗ - physical therapy (PT) · Worse
PT was hell for me it gave me PEM over and over and over again
In context ↗ - ACT (acceptance and commitment therapy) · Helped
ACT (acceptance and commitment therapy) helped me a lot when I became suddenly disabled years ago.
In context ↗ - trazodone · Worse
I tried it and I hated it
In context ↗ - SSRIs · Worse
SSRIs always gave me wicked headaches I have plenty of serotonin in my body I was actually low on dopamine not serotonin
In context ↗ - melatonin · Worse
I tried that it gave me terrible headaches though. And melatonin does as well
In context ↗ - homeopathy · Worse
When I got desperate and tried homeopathy that gave me icky side effects
In context ↗ - Xanax · Helped
I have a prescription for 0.25 Xanax and I will pop one of those if I need to go back to sleep.
In context ↗ - magnesium · Helped
Magnesium helped me with the withdrawals
In context ↗ - vitamin D · No change
When my vitamin D levels were tested in 2012 mine were 19 as well.
In context ↗ - four-count breathing · Helped
taking a four count of breath in through my nose and then blowing it out through my mouth
In context ↗ - allergy pill and azelastine spray · Helped
during ragweed season I have to take an allergy pill plus use as azalastine spray
In context ↗ - Pilates · Helped
I use fitnessblender.com to do like 15 minute Pilates videos
In context ↗ - COVID vaccination as treatment · Worse
I had such a terrible crash from it I was in bed for a month.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| 2004 | ME/CFS after mono (EBV); gave up her job and lay in bed for monthsI had MECFS from mono in 2004, PEM and all.In context ↗ | Severe | |
| 2005 | remission after months of rest; part-time jobs, then full-time work and a normal life for eight yearsAround the nine month mark I started to feel better, I worked a couple little part-time jobs until I realized I could handle those and then I went back to work full-time.In context ↗ | Recovered | Radical rest |
| 2012 | car accident; ME/CFS returned the next day and she has been disabled sincewhen I was 39 I was in a car accident that screwed up my neck, and when I woke up the next day I felt like I had mono all over again.In context ↗ | Severe | |
| 2015 | a better stretch: hiked Mount Washington and ran 3 miles regularlyI was able to hike up Mount Washington back in 2015, I was also able to run 3 miles pretty regularly that summer as well.In context ↗ | Mild | |
| March 2020 | started low-dose naltrexone and slept through the night after the first doseafter the first dose I slept until 9 AM the next day and I cried with relief I was so happyIn context ↗ | Moderate | Low-dose naltrexone |
| 2020 | crashed after working two 8-hour days a week for four weekendsI tried to work two full eight hour days in a row and I was able to do that for four weekends in a row and then I crashed so hard I thought I was sickIn context ↗ | Severe | |
| winter 2023-2024 | terrible crash; considered long-term careLast winter I was having such a terrible crash I considered calling my doctor to talk about long-term care facilities or nursing homesIn context ↗ | Severe | |
| May 2024 | still disabled but four to six usable hours a day and most nights slept throughI have like four to six usable hours a day and most nights I sleep through the night.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Gabapentin (Neurontin)“unlike gabapentin which also came with a whole bunch of yucky side effects” In context ↗ Side effects
- Pregabalin (Lyrica)“it was harder coming off that than long-term opioids. The withdrawals lasted a whole month it was unbelievable” In context ↗ Withdrawal problems
- Low-dose naltrexone“if I take more than 0.5 I give myself opiate withdrawals” In context ↗ Withdrawal problems
- Low-dose naltrexone“I tried to use the diluted in water method. I totally hated it I got so sick I had to give myself a nap” In context ↗ Side effects
- Gabapentin (Neurontin), Pregabalin (Lyrica)“they were causing so so much fatigue and brain fog for me they actually made me worse” In context ↗ Made symptoms worse
- Trazodone (Desyrel)“the first night it finally helped me sleep I had such a raging headache the next day” In context ↗ Side effects
- COVID vaccination as treatment“I had such a terrible crash from it I was in bed for a month.” In context ↗ Made symptoms worse
- “I had a TDapp six months later and I had the same exact crash for a month” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“PT was hell for me it gave me PEM over and over and over again” In context ↗ Made symptoms worse
- Melatonin“I tried that it gave me terrible headaches though. And melatonin does as well” In context ↗ Side effects
- “after a few days I started to feel like I was getting serotonin syndrome” In context ↗ Side effects
- “A very full weird abdominal pain was the first sign it was not for me.” In context ↗ Gut side effects
- Homeopathy“When I got desperate and tried homeopathy that gave me icky side effects” In context ↗ Side effects
- Low-dose naltrexone“The first week I took it I had terrible diarrhea for exactly 7 days and then it stopped.” In context ↗ Gut side effects
- Trazodone (Desyrel), Antidepressants (unspecified)“SSRIs always gave me wicked headaches” In context ↗ Side effects
Symptoms mentioned
Hair lossHeadaches & migraineNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I will still get PEM when I do too much
In context ↗ - Sleep problems
I still wake up in the middle of the night if I have really bad PEM
In context ↗ - Pain & fibromyalgia
it does not help with the bone and joint pain so I still take oxycodone
In context ↗ - Headaches & migraine
I do get a lot of migraines and nerve pain
In context ↗ - Neuropathy & tingling
the tingling and burning came right back
In context ↗ - Hair loss
my hair has grown back so much in the thin spots
In context ↗