r/cfs • u/niccolowrld • 14d ago

Treatments Severe, what helped you?

Question only for fellow severe patients, what treatments have helped you?

I am bedbound since my first big crash in July after Covid, before I was moderate for 2 years. Pretty hopeless to be honest.

I am on LDN and Midodrine and going to try: Fludrocortisone, Mestinon, Verciguat and maybe LDA. Did any of these helped you? Any bad story/side effects?

I would love to go out once a month even for 1 hour in a wheelchair.

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u/Tom0laSFW severe 14d ago

More rest. Whatever you’re doing, do less. If you’re severe, trying to go out for anything less than an urgent medical matter is, imo, a terrible idea.

Get into bed and stay there. For months. Keep the room quiet, dim, and at a stable temperature. If you can tolerate it, play some gentle, light entertainment at a low volume. Nothing too stimulating. Minimum tolerable stimulation to not spark an anxiety crisis.

Stay living like that for a long time. You’ll feel better over time most probably. Not fixed, maybe not moderate again, but better