My chronic coat stems from extreme childhood trauma. I was also diagnosed with adrenal fatigue. Now that I’m working on my healing journey and therapy my fatigue has been alleviated somewhat. Thank you for this post. I appreciate your insight and how transparent you are.
Wow, it's interesting to hear you say that... I have long held suspicions that trauma is a root cause of fatigue (and indeed all disease - "dis-ease"), and alternative medicines have recognised that for millennia. Unfortunately it's often not considered in regards to Western medicine. Thank you for your kind comments and for sharing :)
As a person with ADHD who also experiences fatigue on the daily, the closest thing to a solution I've found is just being medicated for both waking and sleeping. I take a stimulant in the morning and an antidepressant for sleep at night. It was near impossible to get doctors to take fatigue seriously, at least in my case. This is a great read though, and made me feel less alone.
Hi Fi, I'm so glad this post made you feel less alone 💕 That was completely my intention, as well as to talk about a topic that I feel doesn't receive enough airtime.
As someone pretty anti-medication (for various reasons), your solution is an interesting one to me. What is your diagnosis, if you don't mind me asking? (ie CFS etc)
I don't have a diagnosis for anything related to my fatigue because my doctors dismissed it as being related to my depression and ADHD. I think those conditions could absolutely be impacting my fatigue, but I'm almost certain that it isn't the whole story. The medication helps me manage to function through the day, but it doesn't fix it entirely.
I’ve got autism and ADHD. I also have ME, the medical diagnosis for what people call chronic fatigue. There are various stages and I’m in the worst 25%: severe status.
It’s very possible to have a more mild version but the primary symptom people experience is most exertion malaise.
Hi fellow Jess! 👋🏻 I have looked into ME/fibromyalgia before, but as I said in the post I don't have some of the symptoms. Also, it's generally only diagnosed when there are no other reasonable explanations - in my case I might be deficient in something, which my dr is currently trying to rule out. Thank you for the info & I will check out the link :)
In my experience, the vast majority of doctors are not well informed about ME. (Which is very distinct from fibromyalgia enough that I don’t put them in the same sentence.) I would recommend this as the most current, research based criteria for evaluating ME aka CFS.
With such an under researched and under diagnosed condition, it’s so important to start with the right list. It’s hard to find competent care in my experience so let me know if you have any questions I can try to direct you. Currently, I live in central NC near Duke and UNC and cannot find a competent provider. It’s rough out there.
I hope you are able to find some relief from your symptoms.
Thank you Jess for the info & recommendations :) I'm in Australia and currently under the care of the best doctor, who was actually voted the best doctor in NSW & ACT!! He is extraordinarily thorough and has already picked up on possible deficiencies that others haven't.
But thank you again - and once again I will check out the link :)
Hi Jessica, have you looked into autistic/neurodivergent perimenopause? I think it could be a contributing factor. You’re welcome to reach out if you want to discuss it. It’s incredibly insidious and can put us at risk rapidly without warning. But once we identify it, there’s help and community out here! It’s great that everything else has been ruled out. Hang in there x
Hi Sam, I haven't because I'm not even 30 yet, so didn't think it would apply. I did start my cycle as a pre-teen though so it wouldn't surprise me if I was perimenopausal early (but maybe not this early!). Thanks :)
Oh it would be early, but not impossible. Have you looked into Primary Ovarian Insufficiency? Maybe it’s not a good fit now, but good to know about these things if it comes up for you, or a friend, later. Sorry, unintentionally info dumping on you!
Thank you for sharing this. I feel I mirror your circumstances and can empathise with you deeply. I'm autistic and ADHD and have suffered with varying levels of fatigue for many years. They won't diagnose me with CFS because I'm Coeliac - an autoimmune condition which for a low percentage of sufferers also means persistent fatigue. I found trying to fit in all the worlds typical boxes has been a major component of feeling exhausted. I definitely feel it if I over exert myself, especially socially. I've just gone self employed, while it has its own set of triggers I find that I can manage my time and exposure better. I hope you find a way that works for you.
Hi Kym, thanks for sharing. I agree that being self-employed definitely allows for greater flexibility. You might enjoy my posts on living a low-demand lifestyle, which are linked in the post :)
Sorry to hear Alice - I, unfortunately feel you on this. Mine has been related to POTS/ long covid. I have started taking low dose Naltrexone and I have heard that others swear by this for chronic fatigue. But might not be related to what you are going through. Sending you healing energy and good energy your way!
Reading this after another very poor nights sleep, mixture of external factors and just waking up for no reason. I’m not sure what if anything helps with the low level fatigue I seem to constantly live with now but finding fellow neurodivergents stories is a lifeline for me at the moment, reassurance I’m not “weak” or just need to “try harder” Thank you (I also have unconfirmed endo and fully believe there is just not enough research around the fatigue element!)
Hi Rach, I was diagnosed with endometriosis last year but nobody has ever talked to me about the fatigue element. Its definitely not researched or discussed enough. I'm glad my post was a help to you in a troubled time, and I hope to write more about this in the future xx
My chronic coat stems from extreme childhood trauma. I was also diagnosed with adrenal fatigue. Now that I’m working on my healing journey and therapy my fatigue has been alleviated somewhat. Thank you for this post. I appreciate your insight and how transparent you are.
Wow, it's interesting to hear you say that... I have long held suspicions that trauma is a root cause of fatigue (and indeed all disease - "dis-ease"), and alternative medicines have recognised that for millennia. Unfortunately it's often not considered in regards to Western medicine. Thank you for your kind comments and for sharing :)
As a person with ADHD who also experiences fatigue on the daily, the closest thing to a solution I've found is just being medicated for both waking and sleeping. I take a stimulant in the morning and an antidepressant for sleep at night. It was near impossible to get doctors to take fatigue seriously, at least in my case. This is a great read though, and made me feel less alone.
Hi Fi, I'm so glad this post made you feel less alone 💕 That was completely my intention, as well as to talk about a topic that I feel doesn't receive enough airtime.
As someone pretty anti-medication (for various reasons), your solution is an interesting one to me. What is your diagnosis, if you don't mind me asking? (ie CFS etc)
I don't have a diagnosis for anything related to my fatigue because my doctors dismissed it as being related to my depression and ADHD. I think those conditions could absolutely be impacting my fatigue, but I'm almost certain that it isn't the whole story. The medication helps me manage to function through the day, but it doesn't fix it entirely.
Thank you for sharing! I hope you find other solutions that are a good long-term fix.
I’ve got autism and ADHD. I also have ME, the medical diagnosis for what people call chronic fatigue. There are various stages and I’m in the worst 25%: severe status.
It’s very possible to have a more mild version but the primary symptom people experience is most exertion malaise.
https://open.substack.com/pub/jesshoneybadger/p/what-exactly-is-so-bad-about-severe
Hi fellow Jess! 👋🏻 I have looked into ME/fibromyalgia before, but as I said in the post I don't have some of the symptoms. Also, it's generally only diagnosed when there are no other reasonable explanations - in my case I might be deficient in something, which my dr is currently trying to rule out. Thank you for the info & I will check out the link :)
In my experience, the vast majority of doctors are not well informed about ME. (Which is very distinct from fibromyalgia enough that I don’t put them in the same sentence.) I would recommend this as the most current, research based criteria for evaluating ME aka CFS.
https://www.meresearch.org.uk/research/canadian-criteria/
With such an under researched and under diagnosed condition, it’s so important to start with the right list. It’s hard to find competent care in my experience so let me know if you have any questions I can try to direct you. Currently, I live in central NC near Duke and UNC and cannot find a competent provider. It’s rough out there.
I hope you are able to find some relief from your symptoms.
Thank you Jess for the info & recommendations :) I'm in Australia and currently under the care of the best doctor, who was actually voted the best doctor in NSW & ACT!! He is extraordinarily thorough and has already picked up on possible deficiencies that others haven't.
But thank you again - and once again I will check out the link :)
Hi Jessica, have you looked into autistic/neurodivergent perimenopause? I think it could be a contributing factor. You’re welcome to reach out if you want to discuss it. It’s incredibly insidious and can put us at risk rapidly without warning. But once we identify it, there’s help and community out here! It’s great that everything else has been ruled out. Hang in there x
Hi Sam, I haven't because I'm not even 30 yet, so didn't think it would apply. I did start my cycle as a pre-teen though so it wouldn't surprise me if I was perimenopausal early (but maybe not this early!). Thanks :)
Oh it would be early, but not impossible. Have you looked into Primary Ovarian Insufficiency? Maybe it’s not a good fit now, but good to know about these things if it comes up for you, or a friend, later. Sorry, unintentionally info dumping on you!
https://www.menopause.org.au/hp/studies-published/early-age-menstrual-periods-increases-risk-of-premature-and-early-menopause?highlight=WyJlYXJseSJd
Info-dumping welcome! 😄 I do have ovarian cysts so anything concerning ovaries is of interest to me. I will check out the link, thanks!
Thank you for sharing this. I feel I mirror your circumstances and can empathise with you deeply. I'm autistic and ADHD and have suffered with varying levels of fatigue for many years. They won't diagnose me with CFS because I'm Coeliac - an autoimmune condition which for a low percentage of sufferers also means persistent fatigue. I found trying to fit in all the worlds typical boxes has been a major component of feeling exhausted. I definitely feel it if I over exert myself, especially socially. I've just gone self employed, while it has its own set of triggers I find that I can manage my time and exposure better. I hope you find a way that works for you.
Hi Kym, thanks for sharing. I agree that being self-employed definitely allows for greater flexibility. You might enjoy my posts on living a low-demand lifestyle, which are linked in the post :)
Sorry to hear Alice - I, unfortunately feel you on this. Mine has been related to POTS/ long covid. I have started taking low dose Naltrexone and I have heard that others swear by this for chronic fatigue. But might not be related to what you are going through. Sending you healing energy and good energy your way!
I need to do more research on POTS, as I do struggle with low blood pressure as well. Thank you for sharing, and thanks for the advice!
Reading this after another very poor nights sleep, mixture of external factors and just waking up for no reason. I’m not sure what if anything helps with the low level fatigue I seem to constantly live with now but finding fellow neurodivergents stories is a lifeline for me at the moment, reassurance I’m not “weak” or just need to “try harder” Thank you (I also have unconfirmed endo and fully believe there is just not enough research around the fatigue element!)
Hi Rach, I was diagnosed with endometriosis last year but nobody has ever talked to me about the fatigue element. Its definitely not researched or discussed enough. I'm glad my post was a help to you in a troubled time, and I hope to write more about this in the future xx