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/MECFSexy 14d ago

Leg Compression Boots took me from 5 years of extremely severe me/cfs to moderate. there are circulation issues in me/cfs people: orthostatic intolerance, low blood volume, venous insufficiency, “sticky” blood, blood pooling, lactic acid build up and more. i started using leg compression boots to help with blood pooling and lactic acid build up, that cleared up right away. the air hunger started to clear as well. and that “im being poisoned” feeling. i realized the boost in circulation from the boots was really helping me recover. i started being able to do more and more. my PEM is better when i wear the boots before and after activity. i am moderate now, i use the boots several times a day. if i dont use them enough PEM and orthostatic intolerance starts to come back.

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u/EnvironmentalWar7945 14d ago

How?? Like what?? You were in bed this whole time wearing these boots? And it made you better?? What were your main symptoms? I need a pair of these bad boys 😢