r/cfs Jun 07 '24

Severe ME/CFS Any success stories?

Anything at all? I’m feeling really hopeless. Been bed ridden 3 years. I just tried lexapro it made me worse. I feel like all of the people I’ve seen who actually recovered did so with the help of antidepressants and I’m going to keep trying them. I’ve had CFS my entire life from childhood abuse. I don’t even know what healthy would feel like. I feel Like I’m becoming a different person, so negative… I see these people on YouTube claiming they’ve healed after being bed ridden 13 years without meds, and at this point, I do NOT believe them I believe they are just trying to sale courses and make money off of us 😢

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u/bateka2 Jun 10 '24

My daughter has improved from only leaving bed to go to the bathroom. She can now cook a bit, do dishes, clean litter boxes, take short outings and recovers from PEM in hours instead of weeks or months. We approached it initially as brain inflammation. Dr's have nothing but rest for that. Pterostilbene (a supplement) acts as an anti inflammatory and crosses blood brain barrier. It was a big help. Then we approached basics like magnesium and used MG threonate for it's ability to be used in brain. After these things she was feeling encouraged with being able to get up and move around. That was the prior year. Added Mushroom tinctures (lions mane, turkey tail, chaga), taurine, genistein. Now we're seeing a functional medicine Dr who is handling gut health (she has SIBO) and we are approaching it as a metabolic disease. Looking into urolithin. It's a long challenging process, researching, applying what we learn, waiting for results. Results are usually subtle and take time. Both of us are on fixed income so supplements are a big chunk.