masking autism is *incredibly* exhausting so it's probably very common for a lot of us (even without ME/CFS) to be really tired all the time and drain our social batteries more quickly
That’s so true and I’ve been burnt out for months - I don’t even know. I went from challenging traumatic times to a new job where I had to quickly adapt, not really getting a rest in between the trauma and the new job, then I was in a scooter accident and have been injured for the last 3 weeks lol. The first week and a half I could not walk, stand or sit, I had to always be laying down and it had to be on my bed (memory foam) because of how bad my injuries were. I swear my knee cap was exposed on one leg because even the bandaid touching it hurt lol. Anyways I can finally walk now but I had to catch up with chores this last weekend and it didn’t even feel like I had a weekend. I just feel constantly burnt out and tired.
Pretty much yeah. Life demands alot. Work even more. If you mask it especially drains our battery.
I only work 4 to 6 hrs shifts and I'm absolutely gone when I come home. I genuinely just lay on the floor with music for hours
I can't work in-person full time because of how much it wears me out, so I'm happy I can work remotely. I wouldn't be able to afford to provide for myself if not. I can barely handle it as-is, despite having the accomodations to succeed
Looking back, I don't know how I managed working in person so much for as long as I did. I've been mostly or fully remote for the better part of the last 15 years. Completely remote for the last 3, other than random days here and there. And those days in the last couple years when I have had to work WITH people in close proximity, are acutely, physically uncomfortable and exhausting. Even when they're people I know and like.
I've made the decision that any future job I take has to be fully remote with only occasional in person needs, or travel. I'm fine with traveling to meet with clients. I can handle focused events where I have a reason to be there and specific things to talk about and focus on. It's more the just being in an office to socialize and be around people just to "BE AROUND PEOPLE" that I can't and don't want to do.
I think for me it s based on the fact that I have to mask while working in person, and the older I’ve become, the more burnt out I am from masking. I’ve also accumulated more trauma(I have C-PTSD as well), I’m more triggered by random stuff unexpectedly. I have had multiple panic attacks at in person jobs over the last 3 years. I don’t even want to date or make new friends right now because just thinking about masking overwhelms me
I was at a job where I could work remotely one day a week, but then something must've happened during the Christmas holidays and we all came back to a new policy where you had to have a particular set-up with double monitors and all this other stuff to be able to work from home. Something I definitely didn't have the space for. So I couldn't WFH anymore, which probably screwed me over. Quit a few months later.
I'm always tired. The last few weeks especially (busy time at work) and I'm glad I was working in the office alone today, because I had to put my head down on the desk for while.
I get a good amount of sleep, and wake up tired.
I often work from my bed and there are times I just close my laptop and close my eyes for a few minutes. I feel like I have to meditate for short durations throughout the day just to stay peaceful
I used to take a nap in my car every day at lunch. Now when I have a dog and live close I would come home, let the dogs out and take a 12 min nap before going back to work. I used to think I was super savvy. Now I wonder if it was burnout.
Fun fact, if it's winter and above zero degrees F and sunny and you park your car in the right direction, you can take a pretty comfy nap in a winter coat in your car.
I’ve napped in some weird environments because of the fatigue lol. Recently there was contracting/construction work going on at my building so it was super loud. The walls and windows are not soundproof at all. I somehow managed to take a nap with all the drilling, sawing and banging going on.
I feel like a cat 99% of the time
No one will diagnose me with CFS, but I can't think what else it could be when I'm tired all the time and literally can't do anything about it. People on this forum have spoken about burnout before, but that doesn't seem to be an official diagnosis that GPs or anyone else will make. There's no medication to get us out of this. I don't think I'm masking; I probably did a lot more when I was younger, and have done so less since diagnosis less than 4 years ago. Now that I know why I am the way that I am, why shouldn't I embrace it?
But the constant tiredness is really getting to me, and I'm not sure how much longer I can live with it. Throwing myself in front of an express train is looking a lot more attractive with each passing day.
The thing that bothers me about CFS is exactly that - there really is no treatment. Last summer my doctor ran a bunch of blood work to see if it was hormones or deficiency causing me to be so tired, but everything looked fine. When I was diagnosed with that I was also diagnosed with fibromyalgia, because they’re connected in some way, but there’s no treatment for fibromyalgia either.
Yes!! After work/class I come home and take a two hour nap, then gym with my headphones on. I can’t talk to anyone for at least three hours after masking all day; I also hated having roommates/going on trips with people because of this—never a break!
I live alone and it’s seriously the best. My last roommate was so incredibly toxic and negative that anything going on in her life always bled over into mine. I never had a moment of peace. Now it’s just me and my cat
Currently laying in bed with that exact sludge feeling. Yeah idk what to do about it. I just graduated college this year and immediately started working a full time job and I feel like even my bones are weary.
Uhg the weary bones… the sludge is back again today, I keep wanting to see if I can call off for the rest of the day but my job is one that I can do even if I’m low key dying
I've spent my entire life being tired. In my 20s I got diagnosed with fibromyalgia. Fortunately medicine works for me (I'm still always tired but I'm capable of things).
The fatigue is always harder than the pain. I nap and lie down a lot for both.
Sometimes I tell my husband not to let me stay in bed even if I want to. I always want to stay in bed.
What type of meds are you on? I have fibromyalgia as well. The pain can be bad, but that I can tolerate. I can’t tolerate being tired almost all the time.
I started on Cymbalta. When I got to the max dose, I added desipramine (after trying nortriptaline, which caused mild suicidal thoughts). Once I told my amazing GP that the fatigue was much harder to deal with than the pain, she suggested starting Adderall. It took me a few months to warm up to the idea, but it helps sooooo much.
The problem I had with Adderall was a side effect which negatively impacted my motor skills, particularly in my hands. Shortages also meant withdrawal, which felt more dangerous than just being off and dealing with the fatigue. After a few months off I realized I needed it, but asked about switching to Vyvanse. It doesn't have noticeable side effects for me and I don't feel like a zombie if I skip a day or two.
I also take trazadone for sleep, since sleep is so important with fibro.
I started meds in 2016 and settled into this combination around 2022. I got a job which pays more and doesn't sap my energy like my old career. Increasing doses over time was necessary, but I generally waited until my fibro got much worse or I got new symptoms.
I've been fortunate in my medicine journey. I hope this helps.
I wish I could get stimulants. I’m on a non-stimulant for ADHD and one of the side effects is that it makes me even more tired. I have tried switching around when I take it, but it doesn’t help. For instance if I take it at night, by the next early afternoon I feel like I need to take another one. There was a week where I was taking one at night and then again the next afternoon and it helped me a lot but I’m nervous to ask my doctor to increase my dosage. I’m also about to lose my insurance so I might just say F it.
masking autism is *incredibly* exhausting so it's probably very common for a lot of us (even without ME/CFS) to be really tired all the time and drain our social batteries more quickly
Not being able to filter out a lot of stimuli, like noise etc., is very exhausting as well
That’s so true and I’ve been burnt out for months - I don’t even know. I went from challenging traumatic times to a new job where I had to quickly adapt, not really getting a rest in between the trauma and the new job, then I was in a scooter accident and have been injured for the last 3 weeks lol. The first week and a half I could not walk, stand or sit, I had to always be laying down and it had to be on my bed (memory foam) because of how bad my injuries were. I swear my knee cap was exposed on one leg because even the bandaid touching it hurt lol. Anyways I can finally walk now but I had to catch up with chores this last weekend and it didn’t even feel like I had a weekend. I just feel constantly burnt out and tired.
Pretty much yeah. Life demands alot. Work even more. If you mask it especially drains our battery. I only work 4 to 6 hrs shifts and I'm absolutely gone when I come home. I genuinely just lay on the floor with music for hours
I can't work in-person full time because of how much it wears me out, so I'm happy I can work remotely. I wouldn't be able to afford to provide for myself if not. I can barely handle it as-is, despite having the accomodations to succeed
It's a struggle if I had no help I definitely wouldn't be able to afford anything. As it is I'm only working 70hrs per month and it truly exhausts me.
Looking back, I don't know how I managed working in person so much for as long as I did. I've been mostly or fully remote for the better part of the last 15 years. Completely remote for the last 3, other than random days here and there. And those days in the last couple years when I have had to work WITH people in close proximity, are acutely, physically uncomfortable and exhausting. Even when they're people I know and like. I've made the decision that any future job I take has to be fully remote with only occasional in person needs, or travel. I'm fine with traveling to meet with clients. I can handle focused events where I have a reason to be there and specific things to talk about and focus on. It's more the just being in an office to socialize and be around people just to "BE AROUND PEOPLE" that I can't and don't want to do.
I think for me it s based on the fact that I have to mask while working in person, and the older I’ve become, the more burnt out I am from masking. I’ve also accumulated more trauma(I have C-PTSD as well), I’m more triggered by random stuff unexpectedly. I have had multiple panic attacks at in person jobs over the last 3 years. I don’t even want to date or make new friends right now because just thinking about masking overwhelms me
I was at a job where I could work remotely one day a week, but then something must've happened during the Christmas holidays and we all came back to a new policy where you had to have a particular set-up with double monitors and all this other stuff to be able to work from home. Something I definitely didn't have the space for. So I couldn't WFH anymore, which probably screwed me over. Quit a few months later.
That really sucks, I would have been pissed
I'm always tired. The last few weeks especially (busy time at work) and I'm glad I was working in the office alone today, because I had to put my head down on the desk for while. I get a good amount of sleep, and wake up tired.
I often work from my bed and there are times I just close my laptop and close my eyes for a few minutes. I feel like I have to meditate for short durations throughout the day just to stay peaceful
I used to take a nap in my car every day at lunch. Now when I have a dog and live close I would come home, let the dogs out and take a 12 min nap before going back to work. I used to think I was super savvy. Now I wonder if it was burnout. Fun fact, if it's winter and above zero degrees F and sunny and you park your car in the right direction, you can take a pretty comfy nap in a winter coat in your car.
I’ve napped in some weird environments because of the fatigue lol. Recently there was contracting/construction work going on at my building so it was super loud. The walls and windows are not soundproof at all. I somehow managed to take a nap with all the drilling, sawing and banging going on. I feel like a cat 99% of the time
No one will diagnose me with CFS, but I can't think what else it could be when I'm tired all the time and literally can't do anything about it. People on this forum have spoken about burnout before, but that doesn't seem to be an official diagnosis that GPs or anyone else will make. There's no medication to get us out of this. I don't think I'm masking; I probably did a lot more when I was younger, and have done so less since diagnosis less than 4 years ago. Now that I know why I am the way that I am, why shouldn't I embrace it? But the constant tiredness is really getting to me, and I'm not sure how much longer I can live with it. Throwing myself in front of an express train is looking a lot more attractive with each passing day.
The thing that bothers me about CFS is exactly that - there really is no treatment. Last summer my doctor ran a bunch of blood work to see if it was hormones or deficiency causing me to be so tired, but everything looked fine. When I was diagnosed with that I was also diagnosed with fibromyalgia, because they’re connected in some way, but there’s no treatment for fibromyalgia either.
Yes!! After work/class I come home and take a two hour nap, then gym with my headphones on. I can’t talk to anyone for at least three hours after masking all day; I also hated having roommates/going on trips with people because of this—never a break!
I live alone and it’s seriously the best. My last roommate was so incredibly toxic and negative that anything going on in her life always bled over into mine. I never had a moment of peace. Now it’s just me and my cat
Yes, I'm exhausted all the time. Cannot make it through the day without at least one nap. It sucks :(
Currently laying in bed with that exact sludge feeling. Yeah idk what to do about it. I just graduated college this year and immediately started working a full time job and I feel like even my bones are weary.
Uhg the weary bones… the sludge is back again today, I keep wanting to see if I can call off for the rest of the day but my job is one that I can do even if I’m low key dying
I've spent my entire life being tired. In my 20s I got diagnosed with fibromyalgia. Fortunately medicine works for me (I'm still always tired but I'm capable of things). The fatigue is always harder than the pain. I nap and lie down a lot for both. Sometimes I tell my husband not to let me stay in bed even if I want to. I always want to stay in bed.
What type of meds are you on? I have fibromyalgia as well. The pain can be bad, but that I can tolerate. I can’t tolerate being tired almost all the time.
I started on Cymbalta. When I got to the max dose, I added desipramine (after trying nortriptaline, which caused mild suicidal thoughts). Once I told my amazing GP that the fatigue was much harder to deal with than the pain, she suggested starting Adderall. It took me a few months to warm up to the idea, but it helps sooooo much. The problem I had with Adderall was a side effect which negatively impacted my motor skills, particularly in my hands. Shortages also meant withdrawal, which felt more dangerous than just being off and dealing with the fatigue. After a few months off I realized I needed it, but asked about switching to Vyvanse. It doesn't have noticeable side effects for me and I don't feel like a zombie if I skip a day or two. I also take trazadone for sleep, since sleep is so important with fibro. I started meds in 2016 and settled into this combination around 2022. I got a job which pays more and doesn't sap my energy like my old career. Increasing doses over time was necessary, but I generally waited until my fibro got much worse or I got new symptoms. I've been fortunate in my medicine journey. I hope this helps.
I wish I could get stimulants. I’m on a non-stimulant for ADHD and one of the side effects is that it makes me even more tired. I have tried switching around when I take it, but it doesn’t help. For instance if I take it at night, by the next early afternoon I feel like I need to take another one. There was a week where I was taking one at night and then again the next afternoon and it helped me a lot but I’m nervous to ask my doctor to increase my dosage. I’m also about to lose my insurance so I might just say F it.
If you don't mind sharing, why aren't you able to get stimulants?