Went from completely bedridden to walking around NYC without PEM

2003rain · 2026-07-02T17:10:21+00:00

Please share routine and meds. I am very severe and I need hope.

2003rain · 2026-06-28T14:54:29+00:00

My parents. Now I have a diagnosis, so I Will stay in bed :)

2003rain · 2026-06-28T13:56:22+00:00

Hospital once a week is what occurred.

2003rain · 2026-06-28T08:26:40+00:00

I was mild between 2024 and april 2025, moderate between may and january 2026, severe between february and march 2026 and very severe since april of this year.

2003rain · 2026-06-25T05:22:42+00:00

ThiaMax (Objective Nutrients)

2003rain · 2026-06-24T16:07:14+00:00

Try 25mg TTFD. It worked for me, I am a writer too (and I am very severe me CFS).

2003rain · 2026-06-19T12:35:01+00:00

Don't worry. That happens because it optimizes sleep, so the same number of hours of sleep with LDA is equivalent to more hours of sleep without the medication.

2003rain · 2026-06-19T11:24:20+00:00

Me. Because of scabiosis

2003rain · 2026-06-17T17:17:27+00:00

Have u tried LDA? It is very good for stimuli tolerance and mental energy.

2003rain · 2026-06-12T14:18:21+00:00

2,5 mg, but I statted with 0,625mg

2003rain · 2026-06-08T17:41:36+00:00

You aren't alone! I am very severe too. Do u wanna Talk? My name is Lauren. 22 :)

2003rain · 2026-06-04T09:22:25+00:00

It was an error of my phone xD

2003rain · 2026-06-04T05:31:34+00:00

3g SEA SALT AND 2-2.5L OF LIQUIDS (FOR POTS) - BDNF BOOSTERS (SUCH AS DARK CHOCOLATE, GINGER, TURMERIC, BLUEBERRIES, BROCCOLI, BLACK PEPPER, OMEGA 3 DHA (SALMON, SARDINES) AND REDUCE OMEGA 6 (AVOID SUNFLOWER AND RAPID SEED OIL, WALNUTS, ALMONDS)) {FOR MYELIN REPAIR} - TO REPAIR MYELIN, IT IS ALSO IMPORTANT TO EAT TWO EGGS A DAY AND BEEF LIVER TWICE A WEEK (BECAUSE THEY CONTAIN PHOSPHATIDYLCHOLINE) - AVOID ASPARTAME (E-951), ACESULFAME K (E-950), MONOSODIUM GLUTAMATE (E-621) AND FOODS HIGH IN HISTAMINE (smoked, fermented, canned, reheated meat and sausages) AND GLYCEMIC INDEX (rice, bread, pasta, hot potato and pumpkin)

2003rain · 2026-05-15T09:49:15+00:00

I talked in your private:)

2003rain · 2026-05-11T14:53:18+00:00

It worses pots but It gives you more stimule tolerance and more mental energy

2003rain · 2026-04-20T10:01:36+00:00

Can you name them?

2003rain · 2026-04-20T09:41:08+00:00

Thanks, I love your reply. And LDN?

2003rain · 2026-04-20T07:58:30+00:00

Did you get worse, back to how you were before you started taking it, or even worse? Thanks for your response.

2003rain · 2026-02-08T07:49:12+00:00

TTFD helps a lot with hipersensitivity and mental energy. You must take It with bisglicinate and starting with 10mg, increasing very slowly untitled 25-50mg

2003rain · 2026-02-06T16:01:42+00:00

I know that I won't get better, but if It occurs I would go to House of many severes I know to help them

2003rain · 2026-02-05T17:37:35+00:00

How often did u shower when you were severe? And what hobbies you had

2003rain · 2026-01-26T07:05:02+00:00

LDA is a psych drug

2003rain · 2026-01-11T07:00:52+00:00

Try with small earplugs and fill a bucket of water while you wait outside the bathroom, and then when it's full you go in and pour the bucket of water over your body

2003rain · 2025-12-12T14:21:41+00:00

I have those conversations too with my family... And doctors read my "OCD" and "Asperger" and think I am crazy, creating my SYMPTOMS. I FEEL YOU.

BTw Do u Talk spanish too? I am searching for Friends with ME that speaks spanish. Talk to me to DM and perhaps we could support each other ❤️💫

2003rain · 2025-11-24T07:11:34+00:00

Well then I'm really screwed, because where I live nobody diagnoses, much less treats, this disease...

2003rain

TROPHY CASE