Bedridden with ME/CFS for over a year, now slightly better after antihistamines and other meds
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
after a long year woth severe cfs/me
In context ↗ - At worst: Severe
bringing from extreme light and sound sensitive bedbound status to a little bit more functioning
In context ↗ - Now: Somewhat better
sadly it stopped at a low functioning existence, I mean better then laying in the dark but I hoped it would get me even further
In context ↗
Read from 49 of their posts and comments; links to the 28 this page draws on
Summary
Shore 67941 had ME/CFS for many years, at worst bedridden for over a year and sensitive to light and sound. Low-dose Abilify from spring 2022 and various supplements gave limited gains that stopped at a low-functioning level. Antihistamines, ivabradine, aspirin, Daflon, tramadol and a probiotic later left them slightly better, but they still crash and only rest helps. Smell and taste loss has recurred since 2023.
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What they tried
What they credit
Also tried
Their words about each treatment
- Ivabradin · Helped
Regarding POTs I got Ivabradin and I am taking it a month now, it helped a little bit.
In context ↗ - betablockers · Worse
Ivabradin doesnt have that calming effect like betablockers, I took them once or twice and I felt even more depressed energywise.
In context ↗ - Berberine · Helped
Ivabradin and berberine
In context ↗ - Vitamin A supplement · Not said
I take Vitamin A supplement and thats the only thing which comes to my mind.
In context ↗ - Ibuprofen · Helped
When I take some antiflammatory medicine the hot feeling goes away but I can't live daily on Ibuprofen.
In context ↗ - cold packs / icepacks · Helped
I take Ibuprofen and use cold packs, but far from a good solution.
In context ↗ - Ecgc · Not said
p.s I take Ecgc for the oxygen distribution
In context ↗ - Ld-Abilify · Helped a lot
Besides a ton of supplements. Ld-Abilify did it for me.
In context ↗ - spine surgery · No change
also after heavy disc prolapse, so now its caged ... nothing changed for me since the op symptom wise
In context ↗ - Apple vinegar and caprylic acid · Helped a lot
Apple vinegar and coconut oil or rather the acid in it, which name I can't remember right now, helped me immensely with eczema.
In context ↗ - pacing and rest · Helped
Reduce Brain inflammation, as another post said, was important for me as well and pacing, resting.
In context ↗ - Vitamin D · Not said
Supplement wise it's the D, C Vitamins a Multivitamin and nigella sativa.
In context ↗ - mushroom mix · Not said
Also some mushroom mix. Chaga, Cordyceps, Shitake, Reishi, Hericium and Maitake.
In context ↗ - electrolytes · Helped
Yes, I am drinking more electrolytes, it helps a little.
In context ↗ - Inosine · Helped
Lately I tried Inosine and Cordyceps. They give me a small boost for a little bit.
In context ↗ - Herbs · No change
Herbs but didn't help anything.
In context ↗ - Taurin · Helped
And for me personally Taurin is also something which does help a little bit.
In context ↗ - Antihistamines: Allegra and Desloratidin · Helped
2* Antihistamines: Allegra and Desloratidin (one mornings and one in the evening)
In context ↗ - mini Aspirin · Helped
mini Aspirin for anticoagulation ... So this combo got me in a better place.
In context ↗ - Daflon · Helped
Daflon for endothelial function ... So this combo got me in a better place.
In context ↗ - Tramal (tramadol) · Helped a lot
Tramadol helps immensely with the pain if you can get somehow a prescription
In context ↗ - Probiotic · Helped
And I started with a Probiotic as well ... So this combo got me in a better place.
In context ↗ - Pulmicort · Not said
I take also Pulmicort for a Bronchitis which I can't get rid of for months
In context ↗ - Inulin · Helped
Taurin and Inulin also kind of push the energy level a little bit
In context ↗ - Cumin tea · Not said
And for the constant inflammation (at least my brain feels on fire and I need most of the time constantly Icepacks) I drink Cumin tea.
In context ↗ - non-cow milk · No change
No. Just had no more symptoms of my lactose intolerance
In context ↗ - Journaling · No change
Well long time sufferer here and long time journaler, sadly didnt help
In context ↗ - Nicotine · No change
Didn't do much for me 🤷
In context ↗ - Rivastigmine · Not said
I just started but I am not sure the side affects are worth it.
In context ↗
Approaches: H1 antihistamines · Anticoagulants · Other drugs and medicines · Pacing · Supplements
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 | After |
|---|---|---|---|
| 2021-05-08 | severe ME/CFS, in bed most of the day and only able to think in short burstsI am slowly recovering. I am glad to be able to watch tv.again. browser reddit, eat something go shower and then be again not able to do amything useful. ... I never had it this severe this long before.In context ↗ | Severe | |
| 2021-08-27 | sudden remission after a severe year, with new anxietyafter a long year woth severe cfs/me, this week suddenly Infeel better and have as well elevated anxietyIn context ↗ | Not stated | |
| 2022-10-28 | severely bedridden for over a yearto the point of severely bedridden for over a year. Now I am better but stillIn context ↗ | Very severe | |
| 2022-11-04 | low-dose Abilify eased light/sound sensitivity and the overheated brain, from bedbound to a little more functioningMainly with bringing from extreme light and sound sensitive bedbound status to a little bit more functioning. ... Ld-Abilify did it for me. | Severe | Low-dose Abilify / aripiprazole |
| 2024-04-03 | combination of antihistamines, ivabradine, aspirin, Daflon, tramadol and a probiotic left them slightly betterI am feeling slightly better ... So this combo got me in a better place.In context ↗ | Severe | |
| 2025-04-25 | still crashing; rest improves itit does overlap with crashing. and it gets better if I rest enough.In context ↗ | Severe |
Adverse events
- Beta-blockers (unspecified)“I took them once or twice and I felt even more depressed energywise.” In context ↗ Made symptoms worse
- Berberine“this week suddenly Infeel better and have as well elevated anxiety!? Idk what it is from the Berberine I was taking for a month or just a baffling remission.” In context ↗ Mood or psychiatric effects
- Low-dose Abilify / aripiprazole“I was on 1,25 mg and I didn't went higher due to sideffects like dizziness (if I remember correctly).” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have the same or similar after over exertion.
In context ↗ - Brain fog
it killed my cognitive abilities and constant brainfog etc
In context ↗ - POTS & dysautonomia
I have also POTS diagnosed.
In context ↗ - Pain & fibromyalgia
but also joint pain
In context ↗ - Light & noise sensitivity
still like you say said light and sound sensitive
In context ↗ - Anxiety & low mood
this week suddenly Infeel better and have as well elevated anxiety
In context ↗ - Flu-like symptoms
heavy fluelike feeling
In context ↗ - Temperature regulation
Also my temperature is always at 37 degress Celsius )or 98,6 fahrenheit) at my forehead.
In context ↗
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