ME/CFS
Severe → no benefitIll for 7 years
Moderate to severe ME/CFS, now mostly bedbound, after pacing and amitriptyline
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 7 years
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
This month marks 7 years since I developed ME/CFS
In context ↗ - At worst: Severe
while mostly bedbound
In context ↗ - Now: No benefit
I've been sick for 6 years, keep getting more and more disabled
In context ↗
Read from 40 of their posts and comments; links to the 27 this page draws on
Summary
Stone 39024 developed ME/CFS in early 2018 and described moderate to severe illness with fluctuating energy. Pacing advice from an occupational therapist reduced time in PEM, and amitriptyline helped pain and sleep until it caused chronic tachycardia. Over time they became more disabled, were mostly bedbound by 2025, and used a manual wheelchair without independence; they were saving benefits money for an electric add-on.
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What they tried
Also tried
elimination diet· Helped a lottramadol· Helped a lotAmitriptyline· Helpedalloted calorie allowance· HelpedPacing· Helpedpropranolol· Helpedsour cherry· HelpedIV fluids· Helpedphysiotherapy· HelpedVisible· HelpedFinch app· Helpedduloxetine· HelpedManta sleep mask· Helpedweight loss· No changeco-codamol· No changeCBT· Worseturmeric· WorseCOVID vaccination as treatment· Worsegabapentin· Not saidsertraline· Not saidparacetamol· Not saidVitamin D· Not saidmulti-vitamin and mineral· Not saidtopical magnesium· Not saidtopical cbd· Not saidpeppermint oil· Not saidMassage· Not saidzopiclone· Not saiddaily antihistamine· Not said
Their words about each treatment
- Amitriptyline · Helped
Amitriptyline has helped a lot to regulate my sleep pattern, and has the added bonus of treating joint pain too.
In context ↗ - elimination diet · Helped a lot
A dietician eventually identified some food sensitivities and cutting those items out of my diet helped a lot.
In context ↗ - alloted calorie allowance · Helped
I feel much better when I stick to an alloted calorie allowance
In context ↗ - Pacing · Helped
The advice to take rest breaks before I feel any fatigue has been life changing.
In context ↗ - propranolol · Helped
The medication helped but the lack of explanation, ironically, made me feel pretty anxious.
In context ↗ - gabapentin · Not said
I've cross-titrated onto gabapentin and my resting heart rate has dropped into the 90s.
In context ↗ - sertraline · Not said
I had lots of initial side effects when I started sertraline but they smoothed out after a few weeks.
In context ↗ - tramadol · Helped a lot
The benefits went way beyond pain reduction, and I found that my stamina, PEM and cognitive issues all improved as well.
In context ↗ - paracetamol · Not said
Paracetamol, tramadol, hot water bottle, and brain numbing TV.
In context ↗ - CBT · Worse
I'm having CBT through an NHS CFS service at the moment, and whilst I think we definitely need more mental health support for people with chronic illness, this...is not it.
In context ↗ - Vitamin D · Not said
I take Vitamin D (I live in the UK and don't leave the house much)
In context ↗ - multi-vitamin and mineral · Not said
I take Vitamin D (I live in the UK and don't leave the house much) and a multi-vitamin and mineral daily.
In context ↗ - sour cherry · Helped
I take sour cherry at night as a sleep aid - and this does seem to increase the quality of my sleep
In context ↗ - topical magnesium · Not said
I use topical magnesium and topical cbd and peppermint oil to manage joint and hand pain.
In context ↗ - turmeric · Worse
I tried turmeric for a while but it aggravated my gallbladder issues so I stopped that quickly.
In context ↗ - weight loss · No change
I didn't experience any change in my moderate CFS symptoms
In context ↗ - IV fluids · Helped
I've only had them when admitted to hospital for other issues but ohmygosh I loved them.
In context ↗ - physiotherapy · Helped
Exercises seem to be helping manage the pain a little.
In context ↗ - Massage · Not said
Massage for pain management.
In context ↗ - Visible · Helped
The heart rate tracker is super helpful as a proxy indicator for effort.
In context ↗ - Finch app · Helped
I have been coping with it better over the past few months, in no small part because of the Finch app.
In context ↗ - duloxetine · Helped
I take duloxetine now, with occasional zopiclone for sleep, and I'm lucky that it provides a decent degree of relief.
In context ↗ - daily antihistamine · Not said
I wonder if there is correlation to taking a daily antihistamine in the spring, in my case.
In context ↗ - Manta sleep mask · Helped
I'm a huge fan of my Manta.
In context ↗ - co-codamol · No change
Co-cododamol doesn't provide similar relief.
In context ↗ - COVID vaccination as treatment · Worse
I crashed from my first jab but am lucky that the second dose and booster barely affected me at all.
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 21 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018-02 | developed ME/CFSThis month marks 7 years since I developed ME/CFSIn context ↗ | Not stated | |
| 2019-11 | amitriptyline improved sleep and joint painAmitriptyline has helped a lot to regulate my sleep patternIn context ↗ | Moderate | |
| 2020-12 | OT pacing advice reduced PEMThe advice to take rest breaks before I feel any fatigue has been life changing.In context ↗ | Moderate | Pacing and the energy envelope |
| 2021-02 | chronic tachycardia from amitriptylineI developed chronic tachycardia last year, with a resting heart rate of 100+In context ↗ | Moderate | |
| 2022-01 | worsened during the pandemicMine has gotten worse over the same frame and I've been attributing it to the pandemic.In context ↗ | Moderate | |
| 2024-06 | became more disabled, mood hopelessI've been sick for 6 years, keep getting more and more disabledIn context ↗ | Severe | |
| 2025-03 | mostly bedboundchoosing not to have children while mostly bedbound was an avoidant behaviourIn context ↗ | Severe | |
| 2025-07 | using a manual wheelchair without independenceI've opted for a manual chair for now, but it doesn't give me any independence.In context ↗ | Severe |
Adverse events
- Amitriptyline (Elavil)“Unfortunately, I developed tachycardia as a side effect and had to stop taking it.” In context ↗ Heart rhythm problems
- Amitriptyline (Elavil)“I had a few hospital admissions, lots of tests, and a 24 hour ECG just before Christmas but no underlying cause was found.” In context ↗ Hospitalisation
- Sertraline (Zoloft)“I had lots of initial side effects when I started sertraline but they smoothed out after a few weeks.” In context ↗ Side effects
- COVID vaccination as treatment“Day 1 post-vaccine: I feel pretty rough, on parr with having the flu in terms of joint pain, lethargy, and dizziness.” In context ↗ Side effects
- COVID vaccination as treatment“I crashed from my first jab but am lucky that the second dose and booster barely affected me at all.” In context ↗ Made symptoms worse
- Turmeric / curcumin“I tried turmeric for a while but it aggravated my gallbladder issues so I stopped that quickly.” In context ↗ Made symptoms worse
- CBT and psychotherapy“My therapist insists on treating this sadness as a product anxiety and worry and giving me worksheets on challenging pesky negative thoughts. It's really invalidating.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
my PEM has stayed the same
In context ↗ - Brain fog
my brain struggles with the 4 point scale
In context ↗ - POTS & dysautonomia
tracking pain, fatigue, IBS, and dizziness
In context ↗ - Sleep problems
occasional zopiclone for sleep
In context ↗ - Pain & fibromyalgia
increased pain, increased fatigue, and decreased resilience
In context ↗ - Headaches & migraine
I took propranolol for a year due to chronic migraine
In context ↗ - Light & noise sensitivity
unable to tolerate light and touch
In context ↗ - Heart symptoms & palpitations
really high resting HR
In context ↗ - Muscle weakness
my muscles fatigue more easily and aren't being maintained
In context ↗ - Anxiety & low mood
I am definitely super depressed
In context ↗