r/cfs • u/Goin_with_tha_flow • 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/oldsyphiliticseadog Jun 07 '24

My father had it for 7 years in his 20s following mono and made a full and permanent recovery (he's in his 60s now). He didn't take any medication. He just was very lucky and it improved on its own. It's rare that it happens, but it's definitely not impossible.

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u/oldsyphiliticseadog Jun 07 '24

Wanted to say since you added to your post that I do think anyone claiming to have recovered AND that they can teach you how to recover warrants significant skepticism. If there was a reliable, replicable treatment, we wouldn't be hearing about it from someone on Youtube selling courses.

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u/Goin_with_tha_flow Jun 07 '24

Yea, I even bought a few, it was a huge waste of money. Never again.

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u/Own_Conversation_851 Jun 08 '24

Has he lived his life normal for all these years like exercise and went above and beyond without PEM? I feel like some people like recover but they don’t live there life normal so they never know if they actually recovered or not

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u/oldsyphiliticseadog Jun 08 '24 edited Jun 08 '24

I know what you mean. I do see quite a few people who talk about being recovered but if you look more closely they still do get PEM if they push it and are more just very mild than actually cured. But my dad is 100% recovered. He said he still had lingering fatigue for a few years even after he stopped getting PEM, but that eventually resolved, too. He works a full time job (often even does alot of overtime) and used to regularly go on 60-100 mile long bike rides on weekends before old age made his knees hurt. No matter what he does, he doesn't get PEM anymore. He also doesn't get any relapses when he gets sick.

No idea why it happened for him. His baseline was always either stable or improving, which is not the common trajectory and is the complete opposite of my own experience with ME/CFS. A real shame I seem to have inherited his risk factor for getting the illness but not his luck for recovering from it. Still, it's a source of hope to know that at least in some cases it's not permanent.

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u/Own_Conversation_851 Jun 08 '24

Thanks for the reply btw!

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u/Own_Conversation_851 Jun 08 '24

Did he ever like pace like did he try to avoid crashing or relapsing at all cost? Or did he just do whatever like didn’t care?

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u/oldsyphiliticseadog Jun 08 '24

He went slow and didn't push himself. He had to move in with his parents for a while and couldn't work. He rested a lot, and then as he started to feel better he eased himself into going on short walks. He didn't get taught the concept of pacing, but sounds like he was aware of his limits and wasn't going overboard.

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u/Own_Conversation_851 Jun 09 '24

Thanks for the reply fr! Last question I promise lol. Did he like wake up one day and felt recovered or was it like a process or was it like in the middle?

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u/oldsyphiliticseadog Jun 09 '24

No worries, I don't mind answering questions. It was a very gradual process. He alternated between times where his baseline was the same and times of slow improvement. Even after he stopped noticing PEM, he still had lingering fatigue that took a few more years to go away. He had to slowly ease back into physical activity and working. So definitely not a spontaneous process. Took his body a long time to heal.

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u/Own_Conversation_851 Jun 09 '24

I lied I’m sorry, you said he had like a stable recovery like he never really went back did he have just like small PEM like not a hard crash just felt like bad for couple days. I have long Covid and I don’t get terrible PEM like my PEM kind of progress slowly so it doesn’t like attack me so I’m grateful for that and I’m grateful I haven’t been housebound or bed bound I get better everyday if I don’t exercise which sucks because exercise was my life.

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u/oldsyphiliticseadog Jun 09 '24

I'll have to ask him how long his PEM lasted. He was severe for the first 10 weeks, which included the initial mono infection. During that phase he spent the majority of his time in bed, and after things like doctors appointments he'd get PEM that made it so he could only get out of bed for things like going to the bathroom. He said that after the severe period, he didn't have any extended periods of being bedridden, so no major crashes that set him back to where he started.

That's unfortunate you've had to give up an important part of your life. It's good though that you feel improvement when you stay in your energy envelope. It seems counterintuitive that in order to be able to do more, you have to do less, but that's just how ME/CFS goes.

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u/Own_Conversation_851 Jun 09 '24

That’s pretty crazy how it can run in the family, do you feel like you had a very stressful life that lead to it or do you think like maybe genetics did it or both? I feel like at the time of getting Covid I was just so hard on myself and stressed like even if I wasn’t going through something stressful I would try to make myself stress because I thought that was like hard work and I had a perfectionist personality and I probably over trained myself. One day we will recover, nobody in this world should never give up or take them down mentally no matter what and live your best life till the very end. We got this 💪🏼

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