ME/CFS
Moderate → no benefitIll for 20 years
ME/CFS with crashes and fatigue; LDA and DXM gave no benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 20 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
After getting CFS not knowing it was that, I just could not stay up daytime when I needed to 5 days a week.
In context ↗ - At worst: Moderate
For me , there was no change for 15y , just low energy. About 40-50% of normal. No help but rest.
In context ↗ - Now: No benefit
For me , there was no change for 15y , just low energy. ... As everything was getting worse, I wanted to try something.
In context ↗ - Began after: injury or surgery
20y ago I had an accident , I was in the hospital for one month and then two months later CFS.
In context ↗
Read from 52 of their posts and comments; links to the 27 this page draws on
Summary
A person in Canada developed CFS in 2006, about three months after an accident and a month in hospital. For 15 years energy stayed at about 40-50% of normal with crashes, then memory, comprehension, headaches and head buzzing worsened. Rest was the only thing that helped. Xanax, Ambien, Dayvigo and Quviviq were used for sleep and anxiety; LDA and DXM gave no benefit, amitriptyline helped sleep somewhat but caused muscle weakness, and fatigue still limited daily activity.
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What they tried
Also tried
Rest· HelpedWorking within the energy envelope· HelpedAmbien (zolpidem)· HelpedDayvigo (lemborexant)· HelpedXanax (alprazolam)· HelpedQuviviq (daridorexant)· HelpedIbuprofen (Advil)· HelpedClaritin (loratadine)· HelpedMorphine· No changeCipralex (escitalopram)· No changeComplex Chronic program· No changeAmitriptyline· No changeLDA (Abilify)· No changeCough syrup with DM (dextromethorphan)· No changeSleep clinic· No changeGabapentin (sample)· WorseMelatonin· WorseTrazodone· WorseCitalopram· WorseTylenol 3· WorseCoffee· WorseLyrica (pregabalin)· Not saidHydromorphone· Not said
Their words about each treatment
- Morphine · No change
Morphine in the hospital , the max, didn't even take pain away for more than 2 minutes.
In context ↗ - Lyrica (pregabalin) · Not said
I was taking Lyrica 150mg I think 3x a day after my accident
In context ↗ - Hydromorphone · Not said
plus Hydromorphone 1-3mg as needed, never made me happy
In context ↗ - Cipralex (escitalopram) · No change
I got Cipralex and I was on it for two years
In context ↗ - Rest · Helped
Funny. Rest is the only thing that helped in 15 years.
In context ↗ - Working within the energy envelope · Helped
Working within the energy envelope, physically for 15 years
In context ↗ - Gabapentin (sample) · Worse
30mg (Gabapentin? I have to look it up) that one pill cause so much problems in my gut, stomach
In context ↗ - Complex Chronic program · No change
Complex Chronic Program didn't help either.
In context ↗ - Melatonin · Worse
Melatonin ? (I get nightmares from it )
In context ↗ - Trazodone · Worse
trazodone I could feel in the back of my head, heart paputaion
In context ↗ - Citalopram · Worse
one pill of citalopram really did a number on me
In context ↗ - Ambien (zolpidem) · Helped
For sleeping Ambien was the best.
In context ↗ - Dayvigo (lemborexant) · Helped
After doctor not wanting to write Ambien any more I started with Dayvigo like 2 years ago.
In context ↗ - Xanax (alprazolam) · Helped
I take a Xanax (0.5mg) and that calms me down.
In context ↗ - Quviviq (daridorexant) · Helped
QviviQ ? works. 50mg or even half of that.
In context ↗ - Amitriptyline · No change
Started taking 5mg a month ago. Mainly for fatigue. Don't seem to help.
In context ↗ - LDA (Abilify) · No change
It had no effect on me
In context ↗ - Cough syrup with DM (dextromethorphan) · No change
I bought cough syrup with DM. Had two bottles over 1 month. Did notice anything.
In context ↗ - Sleep clinic · No change
The sleep clinic was trying to do something similar to me. But when you can't stay up 16 hours .... it doesn't work.
In context ↗ - Ibuprofen (Advil) · Helped
a low amount of Ibuprofen 100mg-200mg kind of numbs the body a bit
In context ↗ - Tylenol 3 · Worse
Tylenol 3 is the worse.
In context ↗ - Claritin (loratadine) · Helped
I would use some Claritin but just small amount as it would dry my nose area too much.
In context ↗ - Coffee · Worse
coffee doesn't give energy it just focuses the small amount I have
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2006 | CFS began about 3 months after an accident and a month in hospital20y ago I had an accident , I was in the hospital for one month and then two months later CFS.In context ↗ | Moderate |
| 2020 | mental and cognitive decline; tired watching a whole film5 y ago. Got tired watching a full movie, blamed eye (eye is fine) (also memory loss, cognition loss noticed)In context ↗ | Moderate |
| 2023 | more head buzzing and headaches, harder to reach rest and sleep2y ago. More buzzing in the head, ... more trouble to get to rest point, sleep.In context ↗ | Moderate |
| 2026-10-11 | still needs long daily rest; rest broken up, sleep helped by medicationeyes helped me with this, if my eyes don't stay open on their own for a minute, not finished with the rest.In context ↗ | Moderate |
Adverse events
- Melatonin“Melatonin gives me nightmares and I wake more drowsy from it than Qviviq.” In context ↗ Side effects
- Lemborexant (Dayvigo)“Even from my first 1/2 dayvigo I like it's unreal how real it was. It can mess with your head.” In context ↗ Side effects
- Daridorexant (Quviviq)“When the doze hits (30min. -1h) it can get scary with dream so lifelike you don't know what is going on.” In context ↗ Side effects
- Daridorexant (Quviviq)“I can suggest Quviviq but it does leave me a big groggy.” In context ↗ Side effects
- “30mg (Gabapentin? I have to look it up) that one pill cause so much problems in my gut, stomach, (duodenum I think)” In context ↗ Gut side effects
- “That night, I described it like I was in hell and killed myself many times.” In context ↗ Mood or psychiatric effects
- Amitriptyline (Elavil)“But friday I woke up with no strength in my muscles.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“So I stopped. Slowly , yet had bad withdrawal side effect. Kind of ping I call it, others call it brainfreeze.” In context ↗ Withdrawal problems
- Trazodone (Desyrel)“trazodone I could feel in the back of my head, heart paputaion” In context ↗ Heart rhythm problems
- Citalopram (Celexa)“one pill of citalopram really did a number on me” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
Crashes as I had more life in me.
In context ↗ - Brain fog
mental deterioration, memory, comprehension
In context ↗ - Sleep problems
These days I don't sleep well, I can't stay up continuously the 10 hours , I need to rest during.
In context ↗ - Headaches & migraine
For the last two years or so I am getting mild headaches, buzzing
In context ↗ - Tinnitus
on top of tinnitus that I had for 10y
In context ↗ - Muscle weakness
friday I woke up with no strength in my muscles
In context ↗ - Anxiety & low mood
I have been dealing anxiety for along time.
In context ↗ - Gut problems
wow 200mg gives me such a constipation
In context ↗ - Pain & fibromyalgia
Ibuprofen 100mg-200mg kind of numbs the body a bit so less pain/discomfort
In context ↗ - POTS & dysautonomia
Low blood pressure, was under 100 last year for a while.
In context ↗ - Heart symptoms & palpitations
trazodone I could feel in the back of my head, heart paputaion
In context ↗ - Temperature regulation
my experience have been that if I wake up sweating, it was just too much stress.
In context ↗