ME/CFS
Very severe → no benefit
Very severe ME/CFS needing carers, sleep aids gave no lasting benefit
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
if I have very severe ME
In context ↗ - At worst: Very severe
I have an electric wheelchair. During the day my carers will help me with transfers
In context ↗ - Now: No benefit
when I was mild and my sleep issues weren’t as bad of many like now
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
A user with very severe ME who needs carers for transfers and toileting; onset and duration are not stated. While mild, trazodone eased sleep for four or five years before losing effect. Later aids failed: doxepin worsened sleep, ramelteon did nothing, and melatonin, magnesium, glycine and CBD did not work. MCAS restricted their diet, and IV saline twice weekly was accompanied by itchy lumps at cannula sites.
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What they tried
Also tried
Their words about each treatment
- Trazadone · Helped
I stayed on Trazadone for like 4 or 5 years. At some point it started to lose efficiency and also giving me side effects
In context ↗ - melatonin · No change
I’ve spent a few years just trying melatonin
In context ↗ - magnesium · Not said
some other supplements like magnesium, glycine, CBD. But doesn’t work or side effects
In context ↗ - Doxepin · Worse
I recently tried Doxepin and Ramalteon. Didn’t work, actually Doxepin made my sleep worse.
In context ↗ - Ramateon · No change
I recently tried Doxepin and Ramalteon. Didn’t work
In context ↗ - IV saline · Not said
Now I started IV saline for the first time and it’s twice a week.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | mild ME, sleep issues milderBefore all of that, when I was mild and my sleep issues weren’t as bad of many like nowIn context ↗ | Mild |
| 2025-06-20 | very severe ME, bedbound, sleep destroyedWhich of these sleep meds should I try if I have very severe ME?In context ↗ | Very severe |
| 2026-05-14 | still very severe, needs carers for transfers and toiletingI can’t use a bedpan or diapers because paradoxically the pee (or poop, I guess, I mostly tried with pee) won’t come out if I’m laying downIn context ↗ | Very severe |
Adverse events
- Doxepin (Sinequan, Silenor)“Didn’t work, actually Doxepin made my sleep worse.” In context ↗ Insomnia from treatment
- Trazodone (Desyrel)“At some point it started to lose efficiency and also giving me side effects, related to Dysautonomia mostly I think.” In context ↗ Side effects
- “Every time I get a PIV I get this little bumps in the insertion site that itch and kinda hurt.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Sleep problems
Didn’t work, actually Doxepin made my sleep worse.
In context ↗ - Mast cell (MCAS) & allergies
I’m already restricted by MCAS.
In context ↗ - Brain fog
I don’t think I’m cognitively capable of learning now
In context ↗ - POTS & dysautonomia
side effects, related to Dysautonomia mostly I think
In context ↗