ME/CFS
Severe → somewhat better
Bedbound with ME/CFS, now somewhat better with IV saline and heart-rate pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
my ME/CFS has improved since I got it
In context ↗ - At worst: Severe
Now I am bed bound.
In context ↗ - Now: Somewhat better
I'm coming out of PEM and going on vacation/on a plane in a week.
In context ↗
Read from 31 of their posts and comments; links to the 22 this page draws on
Summary
Coast 43042 dates her ME/CFS to isotretinoin (Accutane), followed by a constant headache and years of decline, with POTS and severe ME; by 2019 she needed to lie down during and after meals, and by 2020 was bed bound. She credits weekly IV saline, electrolytes, heart-rate pacing, rest, compression and a low-histamine diet with partial gains. In early 2023 she was coming out of PEM and planning to fly in a week, and found ketosis and fasting raised her energy.
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What they tried
What they credit
5-day fast· Helped a lotHeart rate pacing· Helped a lot · mainDuloxetine· Helped a lotIV saline· Helped a lot · mainElectrolytes· Helped a lotAggressive rest· Helped a lot · mainEating less· HelpedElectric wheelchair· HelpedAbdominal binder / compression· HelpedPropranolol· HelpedLow-histamine diet· HelpedMidodrine· Helped
Also tried
Effexor· Helped a lotKetogenic diet· HelpedMCT oil· HelpedMagnesium· HelpedElectric shower chair· HelpedB12 shots / B vitamins· HelpedB12 shots / B vitamins· HelpedIron· HelpedMeditation· HelpedNoise cancelling headphones· HelpedSmall salty high-protein low-carb meals· HelpedSmall salty high-protein low-carb meals· HelpedReducing dairy· HelpedMelatonin· HelpedmHBOT· HelpedCrying· HelpedOTC pain meds· No changeCreatine· No changeAminos· No changeMethylfolate· No changeRibose· No changeFloat tank· WorseTopamax· Much worseIsotretinoin / Accutane· Much worseImplanon· Not saidDAO· Not saidHeat packs· Not saidIbuprofen· Not saidLightly sedating meds· Not saidFludrocortisone· Not saidDesmopressin· Not saidMestinon· Not saidIvabradine· Not said
Their words about each treatment
- Topamax · Much worse
Be careful with topamax. I got seriously ill with it, got metabolic acidosis and could not talk in full sentences.
In context ↗ - Ketogenic diet · Helped
I was trying to eat ketogenically, as I feel very, very good in ketosis (pain reduction).
In context ↗ - 5-day fast · Helped a lot
I ended up fasting for 5 days. I was only going to fast a day but felt so good I kept going. I felt 80% cured.
In context ↗ - Eating less · Helped
if I eat less I have more energy.
In context ↗ - MCT oil · Helped
Also feel good on MCT oil.
In context ↗ - Electric wheelchair · Helped
I recently got an electric one and my ME/CFS has improved since I got it :)
In context ↗ - Abdominal binder / compression · Helped
I wear compression around my abdomen whenever I am upright and it really, really helps.
In context ↗ - OTC pain meds · No change
OTC meds not working.
In context ↗ - Heart rate pacing · Helped a lot
Saline therapy, aggressive rest and heart rate pacing have helped me the most.
In context ↗ - Magnesium · Helped
Magnesium has been helpful for pain though.
In context ↗ - Electric shower chair · Helped
I also got an electric chair. Which saved me enough energy to be able to shower/bath 2-3x a week now.
In context ↗ - Float tank · Worse
Afterward getting out of the tank I found I became hypersensitive.
In context ↗ - Propranolol · Helped
Propranol for POTS and migraine. ... For me that is low dose propranolol, midodrine and Iv saline.
- Effexor · Helped a lot
Effexor for anxiety ... I've also responded very well to SNRI's effexor and duloxetine.
- Duloxetine · Helped a lot
I've also responded very well to SNRI's effexor and duloxetine.
In context ↗ - IV saline · Helped a lot
2L of IV saline/week and drinking 4L a day- significant increase in energy and ability to be upright
In context ↗ - B12 shots / B vitamins · Helped
Regular B12 shots. ... I also think B vitamins have been helpful.
- Implanon · Not said
I am on the implanon (arm implant).
In context ↗ - Electrolytes · Helped a lot
Electrolytes for improving blood volume has been the most helpful fatigue wise.
In context ↗ - Iron · Helped
Also taking iron when I became deficient.
In context ↗ - Creatine · No change
creatine, aminos, B12 shots, methylfolate, ribose, magnesium etc. Its mostly just made for expensive pee.
In context ↗ - Meditation · Helped
I found meditating does help give me cognitive test as well, but it's boring.
In context ↗ - Low-histamine diet · Helped
It's the most helpful diet change I have made.
In context ↗ - DAO · Not said
If I am going to eat something high histamine i take DAO beforehand.
In context ↗ - Isotretinoin / Accutane · Much worse
The isotrention - this is the medication which set off my MECFS!
In context ↗ - Noise cancelling headphones · Helped
NC headphones have provided huge energy savings.
In context ↗ - Small salty high-protein low-carb meals · Helped
Small, salty high protein meals and less heavy carbs
In context ↗ - Reducing dairy · Helped
Reducing dairy has helped inflammation, headaches, bowels
In context ↗ - mHBOT · Helped
mHBOT helps muscle pain
In context ↗ - Heat packs · Not said
Sometimes I also use heat packs, ibuprofen and lightly sedating meds to encourage a long sleep.
In context ↗ - Fludrocortisone · Not said
I have tried fludrocortisone, midodrine, desmopressin, mestinon, low dose beta blockers, ivabridrine and IV saline.
In context ↗ - Midodrine · Helped
For me that is low dose propranolol, midodrine and Iv saline.
In context ↗ - Crying · Helped
I discovered that crying helped my physical pain too
In context ↗
Approaches: POTS medication · SNRIs · Beta-blockers · Diet · Pacing · Radical rest
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. 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 |
|---|---|---|
| — | ME/CFS set off by isotretinoin (Accutane); constant headache beganThe isotrention - this is the medication which set off my MECFS!In context ↗ | Not stated |
| 2019-09-27 | got an electric wheelchairI recently got an electric one and my ME/CFS has improved since I got it :)In context ↗ | Severe |
| 2019-12-04 | weekly 2L IV saline; a bit more energy each weekI am getting a bit more energy and funtionality back each week :)In context ↗ | Severe |
| 2020-05-30 | bed bound after pushing through universityNow I am bed bound.In context ↗ | Severe |
| 2020-07-30 | combination of weekly IV saline, heart-rate pacing, magnesium and other measures2L of IV saline/week and drinking 4L a day- significant increase in energy and ability to be uprightIn context ↗ | Moderate |
| 2023-02-04 | coming out of PEM; in mild ketosis, high energy in deep ketosisI've been in mild ketosis this last week, but can definitely step it up.In context ↗ | Moderate |
Adverse events
- Topiramate (Topamax)“got metabolic acidosis and could not talk in full sentences. I got so confused on the medication I didn't even recognise the street i've lived on my whole life” In context ↗ Side effects
- Topiramate (Topamax)“It also caused psych side effects and I got intense anxiety bordering on paranoia and hypomania” In context ↗ Mood or psychiatric effects
- Float tank (sensory deprivation)“Afterward getting out of the tank I found I became hypersensitive.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I've been trying to pace but still in constant PEM.
In context ↗ - Brain fog
Improving blood flow to brain with saline and compression has helped my cognitive function.
In context ↗ - POTS & dysautonomia
I have POTS which is a type of orthostatic intolerance
In context ↗ - Mast cell (MCAS) & allergies
I am histamine sensitive - foods like dried fruit, cashews, spinach and soy sauce can trigger throat swelling, coughing and itchiness.
In context ↗ - Sleep problems
Treating orthostatic intolerance, sleep issues and pain have also been important.
In context ↗ - Pain & fibromyalgia
I have daily muscle pain from the MECFS.
In context ↗ - Headaches & migraine
I developed a 24/7 headache (I still have many years later)
In context ↗ - Gut problems
I have rapid gastric emptying / dumping syndrome, and I feel the sickest about 10 minutes after eating.
In context ↗ - Light & noise sensitivity
I have my noise cancelling earphones whenever I leave my bedroom
In context ↗ - Heart symptoms & palpitations
I get tachycardia and low BP for 30 minutes after each meal.
In context ↗ - Anxiety & low mood
Effexor for anxiety
In context ↗
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