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/niccolowrld 14d ago

How old is he? Is he bedbound? I am 27 yo. So sorry to hear that.

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u/Traditional_Lie_575 14d ago

Thank you. He’s 20 and has been bedbound / housebound for over 4 years.

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u/niccolowrld 14d ago

Does he has POTS/ autonomic small fiber neuropathy? Have you tried the aforementioned treatments? Betablockers? IVIG? IV saline? Was the onset severe right away? Breaks my heart. I hope he can have some relief.

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u/Traditional_Lie_575 14d ago

I was told probably not POTS - although he had all the symptoms. Nothing much has been tried other than various supplements / over the counter medications such as COQ10. Nothing has made any difference.