ME/CFS
Severe → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment
Severe ME/CFS, unable to work for nearly a year, now somewhat better with pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Jul 2022
In their words
- Condition: ME/CFS
I've found that talking therapy has been the number one thing that's helped me cope with the effects of cfs
In context ↗ - At worst: Severe
I'm at 40. I'm a 35 year old woman, fell ill about 18 months ago and was at about 20 on the scale then.
In context ↗ - Now: Somewhat better
my symptoms were severe to begin with and are now, after 3 years, moderate
In context ↗ - Began after: nothing they could name
I've no idea if there ever was an actual viral trigger or if that cliff-edge crash just happened because I'd pushed my addled body too far already
Read from 49 of their posts and comments; links to the 22 this page draws on
Summary
A UK vet who fell ill in September 2018 with a sudden crash after months of fatigue, leg weakness and dizziness. Severe at first and unable to work for nearly a year, she improved to moderate over three years. She credits better pacing, has returned to a few hours of work a week, still spends nearly all day on her sofa, and says graded exercise increased her symptoms.
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What they tried
What they credit
Also tried
levothyroxine· Helped a lotantidepressants· HelpedCBT· Helpedweed· Helpedrestorative yoga (down dog app)· Helpedgentle flat walking· Helpedelectrolyte replacement tablets· Helpedmagic mushrooms· Helpedkratom· Helpedparacetamol· Helpedcompression massage machine· Helpedtennis elbow stretches· Helpedcbd vape· No changecodeine· No changegabapentin· No changetramadol· No changeweighted blanket· No changeGET· Worse
Their words about each treatment
- levothyroxine · Helped a lot
I got diagnosed before I developed CFS/ME and found the treatment made a massive difference to my energy and mood
In context ↗ - antidepressants · Helped
I'm medicated now ... I'm on antidepressants, am no longer depressed but STILL HAVE CFS
- CBT · Helped
I also got some CBT sessions which really helped
In context ↗ - pacing · Helped
getting better at pacing has been the number 1 thing that's improved my ME symptoms
In context ↗ - GET · Worse
every time I'd attempted to follow a program aimed at increasing heart rate I had a significant increase in symptoms that persisted long after the event
In context ↗ - weed · Helped
Each time I've smoked or eaten weed since I got sick I've felt so much better, like superhuman better!
In context ↗ - keto · Helped
I've had real runs of good days and I'm attributing it to ... I've gone keto
In context ↗ - cbd vape · No change
I've got a cbd vape instead which so far hasn't made a difference
In context ↗ - restorative yoga (down dog app) · Helped
floor-based yoga for 10 mins can help stretch everything out (I use down dog app, restorative programme. It helps with the pain for me.
In context ↗ - gentle flat walking · Helped
I find gentle, flat walking in nature a good way to boost endorphins and ground myself
In context ↗ - electrolyte replacement tablets · Helped
I found that having one or two electrolyte replacement tablets a day helped stave off the keto flu
In context ↗ - magic mushrooms · Helped
I had a low dose of magic mushrooms and felt great, so at peace.
In context ↗ - kratom · Helped
I did also find that kratom helped, but I really wouldn't recommend going down that route.
In context ↗ - codeine · No change
I haven't been prescribed any medication besides codeine, which made no difference.
In context ↗ - gabapentin · No change
I did also try gabapentin and tramadol ... and found no real difference besides feeling a little high.
In context ↗ - paracetamol · Helped
when I'm sick I take paracetamol and it makes me feel better!
In context ↗ - compression massage machine · Helped
It feels good, but it's a complete pain in the arse to get into
In context ↗ - weighted blanket · No change
I also got a weighted blanket but it wasn't for me.
In context ↗ - tennis elbow stretches · Helped
I did the tennis elbow stretches back and forth and they helped a lot.
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 | After |
|---|---|---|---|
| September 2018 | sudden cliff-edge crash at work after months of fatigue and leg weaknessI'd been feeling intermittent weakness in my legs, fatigue and dizziness for months but that afternoon at work (stressful vet job) it got worse and worse until I had to sit down or I was going to collapse.In context ↗ | Severe | |
| 2020-03-02 | returned to work 6 hours a week; symptoms increased againIt's only 6 hours a week but my symptoms have increased again and I'm back to waking up exhausted and in pain every day.In context ↗ | Moderate | |
| 2020-05-02 | rated 40 on a CFS scale, up from about 20I'm at 40. I'm a 35 year old woman, fell ill about 18 months ago and was at about 20 on the scale then.In context ↗ | Moderate | |
| 2020-11-16 | able to work a few hours a week and starting one short day in clinicThis person has been instrumental in helping me, body and mind, into a position where I can work a few hours per weekIn context ↗ | Moderate | Pacing and the energy envelope |
| 2021-11-21 | symptoms now moderate rather than severe after better pacingmy symptoms were severe to begin with and are now, after 3 years, moderateIn context ↗ | Moderate | Pacing and the energy envelope |
| 2022-07-16 | still pacing; worse before her periodI haven't found anything helps besides pacing even harder around that timeIn context ↗ | Moderate |
Adverse events
- Cannabis (THC, marijuana)“But the hangover. It's so unbelievably bad! For 4-7 days after I feel so awful, brain fogged to the max with zero motivation whatsoever and my body screaming at me if I do anything but lie down.” In context ↗ Made symptoms worse
- Psilocybin (magic mushrooms)“had a nice trippy time but the following day felt like I had the worst PEM.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“Last time I followed through on their advice was about a year ago just prior to my first attempt back to work and inevitably it lead to an increase in symptoms that I then had to try and manage alongside going back to work.” In context ↗ Made symptoms worse
- Kratom“I ended up physically dependent without realising until I was on day 2 of opioid-like withdrawals” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
the following day felt like I had the worst PEM
In context ↗ - Brain fog
I get brain fog terribly and it really messes with my short term memory
In context ↗ - POTS & dysautonomia
It was months and months of dizziness, weakness, fatigue, sore throat, brain fog and myalgia after that.
In context ↗ - Pain & fibromyalgia
I'm back to waking up exhausted and in pain every day
In context ↗ - Sleep problems
waking up exhausted and in pain every day
In context ↗ - Flu-like symptoms
It gradually got better though still gets sore when I'm more run down and crashing badly.
In context ↗ - Light & noise sensitivity
Yes, bright lights also affect me badly
In context ↗ - Muscle weakness
I'd been feeling intermittent weakness in my legs, fatigue and dizziness for months
In context ↗ - Anxiety & low mood
I became clinically depressed when I got cfs
In context ↗ - Gut problems
nausea, any kind of sharp or shooting pain, chills and loss of appetite
In context ↗ - Temperature regulation
I'm definitely more susceptible to feeling uncomfortably cold than before I got sick
In context ↗
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