ME/CFS
Severe → no benefitIll for 16 yearsNeeds ongoing treatment
Severe ME/CFS worsened over more than a decade, still severe
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 16 years
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I have severe CFS
In context ↗ - At worst: Severe
I’m also severe, been deteriorating faster and faster over 10 years
In context ↗ - Now: No benefit
I’m also severe, been deteriorating faster and faster over 10 years
In context ↗
Read from 44 of their posts and comments; links to the 30 this page draws on
Summary
Ridge 77548 described their ME/CFS as severe and said it had deteriorated over more than a decade. Valcyte, gabapentin, Ativan, Botox with Ajovy for migraines and pravastatin each helped them to some degree, while Arava, low-dose naltrexone, Lyrica and Abilify were stopped for nausea, nightmares, sedation or feeling poisoned. They stayed severe, and their benzodiazepine tolerance grew.
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What they tried
Also tried
gabapentin (Neurontin)· Helped a lotAtivan· Helped a lot · wore offBotox· Helped a lotAjovy· Helped a lotValcyte· HelpedGarmin 35· HelpedLyrica· HelpedMirtazapine· HelpedAleve· Helpedblue light blocking glasses· Helpedseroquel· HelpedPravastatin· HelpedPrucalopride (Motegrity)· HelpedMestinon· No changeOura ring· No changeLDN· WorseArava / Leflunomide· Worseinfrared sauna· Worseprobiotics· WorseAbilify· WorseCOVID vaccination as treatment· WorsePlaquenil· Not saidsleeping pills· Not saidlovingkindness meditation· Not saidBiomat· Not saidnicotine patches· Not said
Their words about each treatment
- Valcyte · Helped
Been on Valcyte over a year and feel it's helped a lot.
In context ↗ - Plaquenil · Not said
I've been on Valcyte and Plaquenil for 2 years.
In context ↗ - LDN · Worse
Dr.B put me back on LDN at 0.5mg but I'm still unable to tolerate it due to horrible nightmares.
In context ↗ - Arava / Leflunomide · Worse
I felt too nauseous in the first few days to continue.
In context ↗ - Garmin 35 · Helped
It's really helped me realize just how hard my body works on an innocuous tasks!
In context ↗ - Lyrica · Helped
It helped me with pain and anxiety. However, I found it extremely sedating
In context ↗ - gabapentin (Neurontin) · Helped a lot
I've been on gabapentin ever since and it is my most important drug. I couldn't do without it!
In context ↗ - infrared sauna · Worse
I returned it to Costco after a few months because my longstanding sinus problems were aggravated by the dry heat.
In context ↗ - Mirtazapine · Helped
Mirtazapine is the best sleep aid I've tried, but it makes me eat the world
In context ↗ - probiotics · Worse
probiotics make me worse bc it caused SIBO with my slowed stomach emptying
In context ↗ - sleeping pills · Not said
I take two sleeping pills each night, one that helps me fall asleep, another that helps keep me asleep.
In context ↗ - lovingkindness meditation · Not said
The only idea I've found is lovingkindness meditation.
In context ↗ - Abilify · Worse
I take literally 3 drops of a liquid version (already lower dose than tablet form) ... I feel poisoned for 2 days each time!
In context ↗ - Aleve · Helped
My fingers lock up the harder I crash, and Aleve makes me feel great!
In context ↗ - Mestinon · No change
I felt no difference on it other than occasionally causing an upset stomach.
In context ↗ - Biomat · Not said
I love my Biomat in real life
In context ↗ - Ativan · Helped a lot
Ativan helps me more than any other drug, supplement or other treatment ever!
In context ↗ - blue light blocking glasses · Helped
I find blue light blocking glasses super helpful for light sensitivity
In context ↗ - Botox · Helped a lot
Botox and Ajovy have changed my life.
In context ↗ - Oura ring · No change
Oura ring user- pointless. Only the raw data is useful
In context ↗ - seroquel · Helped
along with seroquel (which I saw you also take) ... this combination really is the only way I sleep
In context ↗ - Pravastatin · Helped
Pravastatin has helped me a lot. I don’t crash as badly
In context ↗ - Prucalopride (Motegrity) · Helped
Prucalopride helps me. Aka Motegrity.
In context ↗ - nicotine patches · Not said
put the patches on the bottom of your feet. ... It still works!
In context ↗ - COVID vaccination as treatment · Worse
1st jab worsened my POTS for about 3 months, maybe more.
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 10 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 |
|---|---|---|---|
| 2018 | felt Valcyte helped a lotBeen on Valcyte over a year and feel it's helped a lot.In context ↗ | Not stated | Valcyte / valganciclovir |
| 2020-06 | steadily deteriorating, specialist running low on optionsI'm also severe, been deteriorating faster and faster over 10 yearsIn context ↗ | Severe | |
| 2021 | first COVID vaccine worsened POTS for months1st jab worsened my POTS for about 3 months, maybe more.In context ↗ | Severe | |
| 2022-02 | migraines much betterBotox and Ajovy have changed my life.In context ↗ | Not stated | |
| 2023-01 | less severe crashes and less PEM painPravastatin has helped me a lot. I don't crash as badlyIn context ↗ | Not stated | Pravastatin (Pravachol) |
| 2026-03 | still severe; benzodiazepines no longer work as wellI've built a tolerance to benzos and they don't work as well anymore. Even though I used them sparingly.In context ↗ | Severe |
Adverse events
- Leflunomide (Arava)“I felt too nauseous in the first few days to continue.” In context ↗ Gut side effects
- Low-dose naltrexone“Dr.B put me back on LDN at 0.5mg but I'm still unable to tolerate it due to horrible nightmares.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“Also gave me insomnia, also taking it in the morning.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“I still felt too nauseous to continue” In context ↗ Gut side effects
- Pregabalin (Lyrica)“I found it extremely sedating and could not take it during the day. I also noticed that my brain fog was increasing.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I feel poisoned for 2 days each time!” In context ↗ Side effects
- Probiotics and fermented foods“probiotics make me worse bc it caused SIBO with my slowed stomach emptying” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I felt no difference on it other than occasionally causing an upset stomach.” In context ↗ Gut side effects
- Hyperthermia and sauna“I returned it to Costco after a few months because my longstanding sinus problems were aggravated by the dry heat.” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“Mirtazapine is the best sleep aid I've tried, but it makes me eat the world (ravenous and gain weight)” In context ↗ Side effects
- COVID vaccination as treatment“1st jab worsened my POTS for about 3 months, maybe more.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
It gives me PEM to rub in lotion
In context ↗ - Brain fog
my brain fog was increasing
In context ↗ - POTS & dysautonomia
1st jab worsened my POTS for about 3 months, maybe more.
In context ↗ - Sleep problems
this combination really is the only way I sleep
In context ↗ - Pain & fibromyalgia
It's main benefit for me is that it lessens PEM pain and severity
In context ↗ - Headaches & migraine
light was a major migraine trigger for me before
In context ↗ - Gut problems
probiotics make me worse bc it caused SIBO with my slowed stomach emptying
In context ↗ - Light & noise sensitivity
I find blue light blocking glasses super helpful for light sensitivity
In context ↗ - Anxiety & low mood
It helped me with pain and anxiety.
In context ↗