ME/CFS
Severe → somewhat betterIll 25 years before improving or writingNeeds ongoing treatment
Years of crashing with ME/CFS, now somewhat better with sertraline and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 25 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
CFS since 2001 (diagnosed 2010)
In context ↗ - At worst: Severe
by xmas I was housebound and it took 18 months for me to get back to what was then my 'normal'
In context ↗ - Now: Somewhat better
I now manage to maintain a mostly moderate baseline, but with careful energy management.
In context ↗
Read from 71 of their posts and comments; links to the 27 this page draws on
Summary
A UK woman fell ill at 16 in 2001 after undiagnosed pneumonia and was treated as depressed until a CFS diagnosis at 26, after years of pushing through and crashing. Sertraline helped her energy and careful pacing keeps her at a moderate baseline at 41: unable to work, napping daily, using a scooter and wheelchair. Hydrotherapy that was really graded exercise caused a crash she still hadn't fully recovered from, and a 2024 trip abroad caused another crash.
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What they tried
What they credit
Also tried
Amitriptyline· Helped · wore offGabapentin· HelpedPropranolol· HelpedSlimming World· Helpedmobility scooter· Helpedtramadol· HelpedDiazepam· HelpedZopiclone· Helpeddeep tissue / sports massage· Helpedmeditation· No changeturmeric· WorseGET / hydrotherapy· Much worsedaily antihistamines· Not saidstimulants· Not saidCBT· Not said
Their words about each treatment
- daily antihistamines · Not said
I was treated for chronic hives with no known cause age 7 - 14. Still on daily antihistamines to this day.
In context ↗ - Sertraline · Helped a lot
I am on Sertraline 150mg daily -ha e been for at least a decade now, helps massively with my energy levels - would undoubtedly be bed bound without it.
In context ↗ - Amitriptyline · Helped
I have recently started taking Amitriptyline 50mg daily for pain. This have been more effective than the 900mg x3 daily of Gabapentin which I was on.
In context ↗ - Gabapentin · Helped
This have been more effective than the 900mg x3 daily of Gabapentin which I was on.
In context ↗ - stimulants · Not said
A very brief period (thankfully) messing with stimulants because the tiredness was so all encompassing.
In context ↗ - pacing · Helped a lot
Once I got the CFS diagnosis I was a lot better because I knew I needed to pace and not push myself.
In context ↗ - turmeric · Worse
I tried turmeric - brought me out in hives!
In context ↗ - CBT · Not said
offered CBT, which I had done before and seen as I am actually pretty well adjusted I didn't want to redo
In context ↗ - GET / hydrotherapy · Much worse
I have had 3 lots of GET 'prescribed' over the years. All had some small benefit short term, then caused a massive crash.
In context ↗ - Propranolol · Helped
I take a beta blocker (Propranolol) to help with it so that its mostly controled.
In context ↗ - Slimming World · Helped
I had NO faith that it would do anything without the ability to exercise, but much to my shock it worked.
In context ↗ - mobility scooter · Helped
I got my mobility scooter when I was 35 ... It's changed my life!
In context ↗ - tramadol · Helped
I have tramadol for bad days, but I get a lit of stomach issues from taking it, so it really is saved for days when I can't cope without.
In context ↗ - Diazepam · Helped
every single time it goes into spasm Diazepam is the ONLY thing that will reset the muscles.
In context ↗ - Zopiclone · Helped
My doctor has in the past prescribed Zopiclone, which resets my sleep pattern.
In context ↗ - deep tissue / sports massage · Helped
I have to say it is amazing what the maintenance is on muscular issues and these help me maintain movement with out it freezing up. But they bloody hurt!
In context ↗ - meditation · No change
even try meditation, although it never works for me as I can't shut off my brain.
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 |
|---|---|---|---|
| 2001 | fell ill at 16 after undiagnosed pneumonia, four months severeOnset at 16 - 4 months severe, back to mild.In context ↗ | Severe | |
| 2002 | mostly back to normal after about a yearIt took me about a year to get mostly back to normalIn context ↗ | Mild | |
| December 2002 | crashed at university and was housebound for four months after pushing throughby xmas I was housebound and it took 18 months for me to get back to what was then my 'normal'In context ↗ | Severe | |
| 2004 | back to mild, but never returned to studyingback to mild eventually, but never went back to studying.In context ↗ | Mild | |
| early 20s | boom and bust cycle of working, burning out and crashing for monthsBoom and bust cycle every 2 years when I would work, increase my hours, burn out and crash for months.In context ↗ | Moderate | |
| 2010 | diagnosed with CFS at 26 and began pacing instead of pushing throughOnce I got the CFS diagnosis I was a lot better because I knew I needed to pace and not push myself.In context ↗ | Moderate | Pacing and the energy envelope |
| age 27 | pre-eclampsia and emergency C-section; baseline downgrade, never returned to workAlso had a massive downgrade in baseline after developing pre-eclampsic toxicosis and emergency C-section at 27.In context ↗ | Moderate | |
| 2024 | crashed badly in hydrotherapy that turned out to be graded exerciseuntil I crashed badly after the 4th bi weekly sessionIn context ↗ | Moderate | |
| late October 2024 | crashed on the flight home from a 4-day trip abroad, semi-conscious on the skybridgeI am still not back to functioning at the same level I was prior to then.In context ↗ | Severe | |
| 2026 | maintains a moderate baseline with strict pacing, cannot work, uses a scooter and wheelchair41 now - still moderate if I pace well enough.In context ↗ | Moderate |
Adverse events
- Turmeric / curcumin“I tried turmeric - brought me out in hives!” In context ↗ Allergic reaction / anaphylaxis
- Graded exercise therapy (GET)“until I crashed badly after the 4th bi weekly session ... I still don't think I've recovered to the level I had from before that crash” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“I have had 3 lots of GET 'prescribed' over the years. All had some small benefit short term, then caused a massive crash.” In context ↗ Made symptoms worse
- Tramadol“I have tramadol for bad days, but I get a lit of stomach issues from taking it” In context ↗ Gut side effects
- Tramadol“With me it makes me feel bloated and my digestive system seems to go into 'sloth mode'” In context ↗ Gut side effects
- Sertraline (Zoloft), Amitriptyline (Elavil)“I definitely have hyper hydrosis ... I assume part of this is the SSRI's” In context ↗ Side effects
- Massage“for the next day or so it feels like Ive been beaten up with a bat. The first one I had I pretty much couldn't move 'normally' for a week.” In context ↗ Side effects
Symptoms mentioned
Brain fogHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I ended up concluding it was the build up of PEM and pushing through.
In context ↗ - Brain fog
constant brain fog, raised heart rate
In context ↗ - POTS & dysautonomia
I also suffer with dizzy spells, so if I am forced to stand (in a queue) I often have to manage these by sitting down on the floor.
In context ↗ - Mast cell (MCAS) & allergies
Still also get break through flares in the hives after a virus.
In context ↗ - Sleep problems
I have horrible issues with insomnia.
In context ↗ - Pain & fibromyalgia
I still can't work, still have pain all the time and have to rest / sleep in the day
In context ↗ - Headaches & migraine
I also use it mainly for migraines and ice pick headaches.
In context ↗ - Heart symptoms & palpitations
raised heart rate, so much pain
In context ↗ - Muscle weakness
i was so tired that I felt like someone had turned the gravity up by 10x
In context ↗
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