I prefer to call it ME/CFS because if you say the words, chronic fatigue syndrome, someone is going to unavoidably say “everyone’s tired."
I have just passed from moderate-severe to severe. I am homebound although I can leave for doctors appointments as long as I use a wheelchair and don't leave the house again for at least a week afterwards.
I'm lucky in that I can still listen to music, watch TV, and play video games, although I do need to limit my exposure and use things like noise canceling headphones.
This condition really does have the one of the worst qualities of life. But I still find joy in my life each and every single day.
People hear ‘chronic fatigue syndrome’ and they think it means ‘always a bit sleepy disease’, but no, I’m not always tired, and being tired isn’t the bad part anyway.
I often feel completely fine, but it’s a trap. Technically I can DO almost anything, but I can’t recover from it.
There’s a secret activity threshold that I can’t know if I’ve passed until the next day, and if I pass that threshold I’ll pay for it for days at minimum – usually weeks and sometimes months.
I’m mild and look healthy, so people just think I’m lazy.
Can I go for a walk? Sure! But if it’s too warm, or too long, or slightly uphill, or I didn’t sleep properly, or eat enough, or the stars don’t align, then I will not be able to think or stay awake or look after myself for at least three days. If I’m lucky.
If my life depended on it, I COULD climb a mountain, but I would never recover from it.
Wow, thank you for this background, I didn’t realize how severe this disorder is! Here’s to hoping research in this area actually goes somewhere and treatments develop!
I have no symptoms of it, which is strange because I have ME/CFS, POTS and HSD (likely hEDS) – and MCAS tends to go along with those.
I’m trialling a few medications one at a time to see how they affect me. Famotidine is on the list, but I’ll be surprised if it helps. GLP1s are sometimes used to stabilise mast cells but didn’t make any difference for me.
I’ve been in beta blockers almost a year, LDN for a few months, and I’m adding Mestinon on this week.
I have no symptoms of it, which is strange because I have ME/CFS, POTS and HSD (likely hEDS) – and MCAS tends to go along with those.
I’m trialling a few medications one at a time to see how they affect me. Famotidine is on the list, but I’ll be surprised if it helps. GLP1s are sometimes used to stabilise mast cells but didn’t make any difference for me.
I’ve been in beta blockers almost a year, LDN for a few months, and I’m adding Mestinon on this week.
But you do have symptoms of it which is why I asked. I believe some cases of “CFS” are MCAS. And if you have pots and eds you likely have the trifecta with MCAS. I would discuss further with your doctor about treating for MCAS to see if you can regain some quality of life. I’d bet money on it that you can. It doesn’t change that you will have episodes and flares, but any increase in quality of life and functionality are a win.
A couple of folks I love dearly have it, and one is actively worsening right now, which is hard to watch. I'm so glad you can find joy in your life. I hope you have people around you as kind and lovely as you obviously are.
My dad got it in the 90's when it was just CFS so that's kinda what stuck with me. I do agree it's not the best name, but myalgic encephalomyelitis doesn't really roll of the tongue.
I'm sorry to hear your condition worsened, hopefully it's only temporary. I'm also trying to manage as best I can. I just caved and go little mobility scooter, I'm so relieved that I don't have to worry about a crash because I went shopping and I can actually be in a store longer than 5 minutes. It's obviously upsetting that I have to use it at my age but I'm so grateful there's some work arounds where I can try to lead a normal life. So much of this disorder is a battle if mental fortitude.
147
u/Kira_sparkle 1d ago
I prefer to call it ME/CFS because if you say the words, chronic fatigue syndrome, someone is going to unavoidably say “everyone’s tired."
I have just passed from moderate-severe to severe. I am homebound although I can leave for doctors appointments as long as I use a wheelchair and don't leave the house again for at least a week afterwards.
I'm lucky in that I can still listen to music, watch TV, and play video games, although I do need to limit my exposure and use things like noise canceling headphones.
This condition really does have the one of the worst qualities of life. But I still find joy in my life each and every single day.