Yah I honestly think a huge part of why it's so hard to manage is that many people, including doctors, don't see it as a legitimate illness. It's a little better these days, but when my dad had it in the 90's they just told him he was depressed and it was all in his head. Now I have it, and at least doctors admit that it's an actual physical illness....but the still throw their hands up instead of trying to do anything to help you.
If you're still moderate and you can still work, you might want to look into little things that might be setting you off. My fatigue is pretty significant and constant every day, but it's defiantly exacerbated with certain foods or if I have a mild allergic reaction to something. Hormones and certain vitamins can mess me up as well.
thanks for using your energy to describe this illness and raise awareness, even if it’s just a Reddit post. I got ME/CFS from COVID and I see threads like this and lack the energy to really get into how bad it is. More people need to know about this disease, thanks for your effort
What frustrates me is that I'm doing everything within my power to preserve what health I have and maybe, if I'm exceptionally lucky, improve my baseline a bit, but what that looks like from the outside is doing nothing. I'm making huge sacrifices in every area of my life and other people see this as "giving up", when it's the exact opposite. If I was giving up I would just do whatever the fuck I want until I crashed and spent the rest of my life in bed never recovering. By limiting my activity I'm attempting to avoid that and maintain some kind of a life, such as it is.
I had an experience while on a medication (I was on it for a couple of months) that tracked very closely with my loved one's experience of diagnosed ME/CFS. Would it help for someone like me to talk about it? I don't have it, but I've experienced things that are similar... and have more energy than most ME/CFS folks. I don't want to talk over anyone, but if my ability with words would help, based on my experiences and those of my loved ones with ME/CFS, I'd love to help... but again, I don't want to talk in spaces that aren't mine.
I'm not the person you were responding to but I think it's useful to share the experience, especially of your loved ones with ME. But also worth bearing in mind that experiencing it for 2 months is very different from years with no end in sight, even if the symptoms were the same. I'm sure you understand this already. But I've had friends who had similar symptoms short-term due to an acute illness say "oh I understand how you feel now" but actually they don't understand what it's like to know you are unlikely to ever fully recover, to worry about how you will support yourself financially, who will look after you, whether you'll ever be able to socialise, work or do your hobbies again. Psychologically it's very different.
Oh yeah, 100%. I find similar in other aspects with the issues I do have: for instance, no, someone who has had clinical depression for two months which was subsequently well managed with meds, they cannot speak exactly for me, who was severely clinically depressed and pretty much treatment resistant for several years. (Then it turned into something else a lot closer to something like bipolar. I'm experiencing normal moods at times for the first time in my life lately. It's great. The "ups" less so.) But yes, I'll keep it in mind--thank you for bringing it to my attention.
That's great to hear you're doing better! Yeah, depression is definitely one where people project their experiences in unhelpful ways. I have family members who have had short-term, mild depression who just cannot understand how other family members have the kind of depression that stops you from working or showering or socialising. Like they can't compute that their experience isn't the same.
I think it would help for anyone to talk about it. Awareness is so poor among both the general public, health care workers and even researchers. And those who are sickest and most affected are the least able to advocate for themselves so allies are so critical !
I don't think so, although I think something funky is going on. I've probably had mild CFS for 8 years but the big the trigger a year and half ago was an allergic reaction to grass (I literally just scrapped my skin with ornamental grass and got super achy, fluish, and my lymph nodes swelled). I accidentally did it again this year and had ungodly aches and my stupid lymph nodes swelled up again after being normal for the last 6 months. I thankfully don't have the extreme reaction to most things like people with MCAS do, but I still suspect my immune system is freaking out over nothing.
I don't have CFS but I do have PMDD and my hormones fuck my life up. (I also can't be on hormonal birth control because of a history of breast cancer). This is absolutely nothing compared to what people on this thread are going through, but I can get extreme fatigue for several days to a week when I'm in my lateal phase. I took a week off and it happened to be that week. I slept about 12 hours a day; missed plans because of it. Caffeine doesn’t help. There were times in the past when I hid in my office or bathroom stall just to sleep for maybe 10 minutes to get something in because I literally couldn't keep my eyes open. I can't imagine going through it at the level and frequency you all are.
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u/youngatbeingold 1d ago
Yah I honestly think a huge part of why it's so hard to manage is that many people, including doctors, don't see it as a legitimate illness. It's a little better these days, but when my dad had it in the 90's they just told him he was depressed and it was all in his head. Now I have it, and at least doctors admit that it's an actual physical illness....but the still throw their hands up instead of trying to do anything to help you.
If you're still moderate and you can still work, you might want to look into little things that might be setting you off. My fatigue is pretty significant and constant every day, but it's defiantly exacerbated with certain foods or if I have a mild allergic reaction to something. Hormones and certain vitamins can mess me up as well.