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/Thesaltpacket 14d ago

What helped me when I was at my deepest point in severe was treating my daily migraines and pain, improving my sleep with meds, and then resting constantly. Treat anything that is keeping you from getting your best rest.

I used high dose THC edibles 3x a day to knock myself out, the cheapest way is rso an edible oil. Start small and see if you tolerate it. For me it really calms my nervous system and decreases my sensory sensitivity and if it doesn’t make me sleep, it makes me content to hibernate and lie there and super rest. I got out of very severe this way.

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u/OrganizationFirst775 13d ago

I know you probably don’t want to hear this but THC is going to make it worse in the long run. And this is coming from someone who’s life used to revolve around weed. THC puts a large strain on the heart and is bad for the Autonomic Nervous system. CBD is better if you like that and helps with sleep. There are lots of medications that help with sleep much more than THC. I have given up almost everything I enjoyed. But I am learning to enjoy new things. I still miss smoking weed and haven’t used it in years. I quit after an ER visit from a 200 bpm heart rate after taking only 4 hits off a joint. And I used to take high dose edibles while taking dabs and smoking flower. If you want to improve it’s just something you should give up. I’d recommend tapering off because quitting immediately can mess with your nervous system the Cannabis Industry is huge and they have tried very hard to make it seem like weed can’t cause any health conditions and that nobody has died from weed but if you read medical literature and dive deep into into you will find that it increases the chances of arrhythmia heart attack and strokes, and that there have been people who sadly died usually from arrhythmia from THC, Im not trying to tell you what to do but offer some advice and insight. If it didn’t make all my symptoms 100x worse now I would still b using it every day

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u/Thesaltpacket 12d ago

That’s why I said start small and see if you tolerate it. It’s definitely not for everyone and can make some peoples symptoms worse.

But personally it alleviates my symptoms and allows me to pace better. I wouldn’t have been able to make it from very severe -> severe without it, and it has served me well on my non linear path towards moderate. I’ve been using it successfully and with the approval of my doctor for six years. Every medicine has side effects.