ME/CFS
Severe → much betterIll 18 months before improving or writingNeeds ongoing treatment
Mostly housebound with ME/CFS, now much better after a mast-cell plan
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- May 2022
In their words
- Condition: ME/CFS
diagnosed ME after screening tests for other things
In context ↗ - At worst: Severe
I had a few months this year where I was bedbound
In context ↗ - Now: Much better
my fatigue levels arent back at 100%, theyre maybe at 70%? Much better than the 20% i was at before!
In context ↗ - Began after: stress or burnout
Did not have a viral onset but was told my ME was probably stress of having EDS on my body.
Read from 56 of their posts and comments; links to the 34 this page draws on
Summary
Summit 45012 fell ill suddenly in August 2020 and was diagnosed with ME/CFS that November, mostly housebound with weeks bedbound for about 18 months. Pacing helped a little and ivabradine lowered their heart rate; in early 2022 a mast-cell plan of antihistamines, quercetin, magnesium, CoQ10, vitamins and a low-histamine diet lifted their symptoms. By May 2022 they were volunteering and back at the gym, with fatigue around 70% of normal.
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What they tried
What they credit
Also tried
omeprazole· Helpedpainkillers· HelpedIV in hospital· Helpedeating regular healthy meals· Helpednot napping in the day and eating at meal times· Helpedmigraleve· Helpedtiger balm· Helpedketo diet· Helpedivabradine· HelpedORS rehydration tablets· Helpedheat and cosy pants· Helpednasal spray for hay fever· Helpedgaviscon· No changeLoratadine (Claritin)· WorseMassage· WorsePfizer vaccine· Much worsebearable app· Not saidcompassion based cbt· Not saidSSRI· Not saidquercetin· Not saidmagnesium· Not saidCo-Q10· Not saidvitamin C· Not saidvitamin D· Not saidCetirizine (Zyrtec)· Not said
Their words about each treatment
- pacing · Helped
things are better because I'm not working and trying to pace
In context ↗ - gaviscon · No change
I first tried gaviscon etc but they didn't work
In context ↗ - omeprazole · Helped
I take omeprazole and it stops the nausea, one day without the druggies and its back again
In context ↗ - painkillers · Helped
I've become more resistant to painkillers since the ME onset so I have a cabinet of stronger ones that I ration. Helps some types of pain but not others
In context ↗ - IV in hospital · Helped
I had an IV last year in hospital and it was glorious
In context ↗ - Pfizer vaccine · Much worse
I had 3 days of hell after the first vaccine, and then 2 months of reduced capacity
In context ↗ - physio · Helped
If you saw what we actually did you would probably laugh because it's such small minimal work, but it makes a difference to my EDS weak as shit body
In context ↗ - eating regular healthy meals · Helped
My Physio worked with me to make good easy habits to make sure I ate regular healthy meals and it improved my condition a lot
In context ↗ - bearable app · Not said
I use bearable and its pretty cool
In context ↗ - not napping in the day and eating at meal times · Helped
what helped a bit was not napping in the day, even if I have to hold my eyeballs open, and eating meals at 'meal times'
In context ↗ - migraleve · Helped
Unfortunately I find that migraleve is the only thing that works
In context ↗ - tiger balm · Helped
And tiger balm for a bit of relief
In context ↗ - keto diet · Helped
I'm doing it atm, it's really helping with my Gastroparesis and my PoTS
In context ↗ - compassion based cbt · Not said
I crashed after 30 mins so we kept them short
In context ↗ - ivabradine · Helped
I take ivabradine as it doesn't affect blood pressure but lowers hr
In context ↗ - ORS rehydration tablets · Helped
Shout out to the O. R. S strawberry tablets also, those badboys keep me upright
In context ↗ - SSRI · Not said
When I came off my SSRI I had horrific nerve pain all throughout my body and in my brain
In context ↗ - heat and cosy pants · Helped
I found heat and cosy pants were the best thing
In context ↗ - low histamine diet · Helped a lot
We started treatment plan found on the Internet - my symptoms IMMEDIATELY WENT AWAY. Like a fog had lifted off my head for the first time in 18 months
In context ↗ - H1 antihistamines · Helped a lot
The anti histamines were pretty instant, within a few hours.
In context ↗ - famotidine (Pepcid) · Helped
H1 and H2 antihistamines
In context ↗ - quercetin · Not said
I added the supplements in immediately when i shouldve done them one at a time, so im not sure!
In context ↗ - magnesium · Not said
Magnesium - mast cell inhibitor
In context ↗ - Co-Q10 · Not said
Co-Q10 - mitochondrial aid
In context ↗ - vitamin C · Not said
Vit C - does something.. Can't remember
In context ↗ - vitamin D · Not said
Vit D - does something
In context ↗ - nasal spray for hay fever · Helped
the hay fever started to affect my fatigue until i got a nasal spray
In context ↗ - Cetirizine (Zyrtec) · Not said
I started on citirizine but it made me feel woozy
In context ↗ - Loratadine (Claritin) · Worse
I had really worsened PoTS on loratadine but when i swapped to fexofenidine it calmed down again
In context ↗ - Massage · Worse
I get PEM from massage
In context ↗
Approaches: H1 antihistamines · H2 blockers · Diet · Pacing · Physiotherapy and rehab
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 |
|---|---|---|---|
| August 2020 | sudden tiredness, napping during the work dayAugust suddenly felt really tired, had to nap in the work day.In context ↗ | Mild | |
| October 2020 | collapsed, week in cardiology, sleeping 16 hours a dayCollapsed a few times, spent a week in cardiology ward whilst they did loads of tests.In context ↗ | Severe | |
| early 2021 | crashed for two months after first Pfizer vaccineI had 3 days of hell after the first vaccine, and then 2 months of reduced capacity.In context ↗ | Severe | |
| March 2021 | days slowly better after resting and pacing, mostly houseboundHowever, after resting for a while, my days on average are getting a bit better.In context ↗ | Moderate | Pacing and the energy envelope |
| August 2021 | heart rate lowered and able to move around and leave the houseIa medication I've been trying has brought my hr down from 120-140 to 80-100 and I've got so much more energy, I can actually get up and move around and leave the house.In context ↗ | Moderate | Ivabradine |
| January 2022 | worse after December booster, stuck in bed a week in painA few weeks ago I had been stuck in bed the whole week in horrible pain, tired as hell.In context ↗ | Severe | |
| February 2022 | symptoms lifted on mast-cell treatment, out of the house dailyWe started treatment plan found on the Internet - my symptoms IMMEDIATELY WENT AWAY.In context ↗ | Mild | H1 antihistamines (unspecified) |
| May 2022 | volunteering, back in the gym, about to return to workim now volunteering and about to return to work!In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“I had my first Pfizer vaccine a few weeks ago and it was absolutely fine, just a small fever” In context ↗ Side effects
- COVID vaccination as treatment“I had 3 days of hell after the first vaccine, and then 2 months of reduced capacity” In context ↗ Made symptoms worse
- COVID vaccination as treatment“had 2 days cold fever and then crashed so bad I could hardly roll over in bed ... I could crawl around the flat and basically stayed like that for a few months” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I had a lot of insomnia which caused my sleep cycle to reverse” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“my PoTS and gastroparesis became a lot worse” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I had this booster beginning of December and still struggling” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I had muscle spasms for 5 weeks, still got them now! And yeah some weird nerve pains” In context ↗ Side effects
- COVID vaccination as treatment“every covid vaccine I've had, I've then had two months of worsened symptoms, including horrible muscle spasms in my back and neck” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I've also had serotonin syndrome due to overprescribed meds” In context ↗ Side effects
- Antidepressants (unspecified)“When I came off my SSRI I had horrific nerve pain all throughout my body and in my brain” In context ↗ Withdrawal problems
- Cetirizine (Zyrtec)“I started on citirizine but it made me feel woozy” In context ↗ Side effects
- Loratadine (Claritin)“I had really worsened PoTS on loratadine but when i swapped to fexofenidine it calmed down again” In context ↗ Made symptoms worse
- CBT and psychotherapy“Be careful with the length of sessions with mental fatigue, I crashed after 30 mins so we kept them short” In context ↗ Made symptoms worse
- Massage“I get PEM from massage” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I can concentrate on light reading but still can't do more than 40 mins of 'proper mental concentration' before I get immediate PEM.
In context ↗ - Brain fog
my brain is tofu
In context ↗ - POTS & dysautonomia
PoTS diagnosed (I already had hEDS with mild Pots, but now it's a million times worse).
In context ↗ - Mast cell (MCAS) & allergies
looks like my ME/CFS was actually mis diagnosis and I had severe MCAS
In context ↗ - Sleep problems
I have delayed phase sleep, feel like crap.
In context ↗ - Pain & fibromyalgia
A few weeks ago I had been stuck in bed the whole week in horrible pain, tired as hell.
In context ↗ - Headaches & migraine
I get ocular migraines for MAOIs - cheese chocolate and caffeine
In context ↗ - Gut problems
I have nausea/vomiting with food due to PoTS and Gastroparesis
In context ↗ - Light & noise sensitivity
Sensitive to light and sound.
In context ↗ - Muscle weakness
im still recovering from my year and a half of inactivity so im weak
In context ↗ - Neuropathy & tingling
And yeah some weird nerve pains.
In context ↗ - Anxiety & low mood
my mental health dived, nearly killed myself, could not cope at all.
In context ↗ - Flu-like symptoms
the cold symptoms and swollen glands i thought was just ME was actuallly hayfever
In context ↗
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