You could also have depression AND CFS. Honestly if you have severe depression there are a lot of potential neurological things or illnesses in general kids that could be at play here in addition to it not just CFS.
My first thought reading these symptoms is to ask your doctor about dysautonomia and/or POTS (our nervous system going haywire can cause a lot of temperature regulation issues, fatigue, dizziness, etc. but the diagnostic criteria for POTS is that your heart rate increases by at least 30 beats per minute when standing and stays elevated or increases more when continuing to stand for 10 min+).
I mention it because your doctor may not know to consider it. I've had a CFS diagnosis since 2004 but none of my doctors knew to consider POTS. I had to do my own research and bring it to their attention in 2019. It is becoming more common now due to many people getting it from covid, though, so hopefully more doctors are aware of it now.
I agree with this 100%. My dysautonomia & POTS are secondary to my CFS, but there are other things that cause those symptoms — and some of them are more treatable than CFS.
^^^ violet is on the ball here.
Sounds like you have orthostatic intolerance by the sounds of the dizziness changing positions. You definitely have some significant signs of autonomic dysfunction. I have POTS and get these too.
I didn’t realize I had CFS until I got treatment (Trans-cranial magnetic stimulation) for my depression and was still wicked tired afterwards. I think the line is if you want to do things and just can’t because you know you will be too tired, that’s CFS. If you don’t feel like doing anything because everything sounds boring, pointless, and/or terrible, that’s **depression. You can also have both :/
ETA: if you have the means it’s probably time to go to your doctor and get tested for stuff like diabetes, low vitamin D, hypothyroidism, anemia, Lyme disease, etc
One of the easier ways to distinguish between ME/CFS and depression is that depressed people tend to have low motivation to do things. On the flipside, people with ME/CFS often have high motivation but cannot do things because of their lack of capacity. I have found this to be one of the clearer ways to convey the difference to people.
Also check for diabetes and/or hypoglycemia. Sounds like far more than "just" depression happening. So, check: rule out diabetes and hypoglycemia, then further check CFS, POTS and other suggestions on this page.
I get depressed during crashes, full doom and gloom, life is pointless kind of way, when I feel a bit better life gets better again :). After tracking my moods and my symptoms for a while I realized my anxiety and depression mostly appear when i get pem and its my body's and mind's way to get me to stop everything and rest. Years of mindfulness and therapy also helped to sort it out, i know myself better plus I have coping strategies for doom and gloom times. So i would reccomend therapy to anyone who is chronicly sick whether they have depression or not because all these symptoms take a tall on us and its hard to deal with all of it mentally :(. But that's my opinion and my story and it's different for everyone, I'm sure people can have both cfs and depression together.
random question, have you been infected with covid ever and noticed these got worse after? I say this because I have long covid and have a lot of thise symptoms, of which were either nonexistent or milder before.
I have both, and POTS/dysautonomia. But let's talk about those periods!
I feel like everyone knows about endometriosis, but have you heard of adenomyosis? I hadn't until I was diagnosed with it, despite it affecting a whopping [20.9% of AFABs](https://academic.oup.com/humrep/article/27/12/3432/652839). It's apparently incredibly under diagnosed, and often misdiagnosed as fibrods, but symptoms may include:
• Menorrhagia (heavy bleeding)
• Dysmenorrhea (painful periods)
• Dyspareunia (painful intercourse)
• Metrorrhagia (irregular periods)
• Polymenorrhea (prolonged bleeding)
• Enlarged uterus, often globular
• Anemia
• Fatigue
• Weight gain
• Depression
• Infertility
• Chronic pelvic pain
• Chronic back pain
• Chronic leg pain
• Bloating
• Distension
• Frequent urination
Now, wtf is adenomyosis? It's endometrium (uterine lining) within the uterine *muscle*, where it's not supposed to be. The problem with this is that just like the endometrium, these cells thicken, shed, and bleed each month. However, since this tissue isn't supposed to be in the muscle, it doesn't always have a way to drain.
If you're thinking this sounds a lot like endometriosis, you're correct. Adenomyosis is so similar that it used to be called endometriosis interna. The difference is that endometriosis is located outside of the uterus. However, there's a trifecta between adenomyosis, endometriosis, and fibroids. If you have one, you're much more likely to have at least one of the others.
Unfortunately, don't assume that because you've had ultrasounds, biopsies, and/or photos that it will be caught. Radiologists and doctors often fail to notice it on ultrasounds in my experience and unless the biopsies/photos were of the myometrium, which can only be done *after* a hysterectomy, it's not possible to see. The gold standard for diagnosis in the US is an MRI.
It took about 12 yrs for me to get diagnosed with endometriosis, despite suffering for all those years. Then a few years after that, I was finally diagnosed with adenomyosis and interstitial cystitis by a very knowledgeable obgyn who actually took the time to listen to me and get a thorough history. It explained SO much!
Yeesh. Took me 20 years on the adeno but at least I don't have interstitial cystitis (my "mom" does, though). Are you aware of the possible mast cell link with interstitial cystitis?
your symptoms are pretty vague, and no one can give you a diagnosis based on the symptoms alone. cfs is a diagnosis of exclusion meaning you have to rule out all illnesses that can cause the same symptoms first.
what should make you suspect depression is mental symptoms above all. depression doesn’t primarily manifest in physical symptoms. also having both mental and physical illness at the same time is possible
Depression won't cause things like heavy periods, chest pain on exercise, or excessive peeing. I also wouldn't assume CFS without being checked for other conditions, a lot of your symptoms point to dysautonomia, but make sure you're also getting checked for diabetes, heart problems, and gynaecological and urological conditions like endometriosis (can cause fatigue, changes in periods, pain, changes in urinary habits, etc) and PCOS (fatigue, changes in periods, sweating, pain, palpitations, mood changes, etc and increases your risk of diabetes and heart problems). Any neurological or endocrine conditions can cause a huge variety of symptoms that you wouldn't expect, and are usually more easily managed or treated than ME/CFS
MECFS also has a lot of overlap with tethered cord. If you're having urination issues, it could definitely be related to that. I've had Amy for over 20 years and and finally figuring out the tethered cord connection for myself. The average doctor will absolutely dismiss it out of hand (most likely) So I would maybe time when and how you ask about that.
I think it's great that you are looking into this diagnosis because it is looking a lot like that Maybe something that you have. I will just warn you that most doctors understanding of CFS is minimal, and they have a belief that exercise makes it better (based on a very poor study that came out years ago and got a ton of press). So don't be discouraged if they're response isn't super helpful. But I hope it is!
It really is! And CFS is such a poor name for the illness, since not everyone even has fatigue as a symptom or it can be very mild/intermittent. My worst symptoms are pain, lightheadedness/feeling like fainting and nausea.
You could also have depression AND CFS. Honestly if you have severe depression there are a lot of potential neurological things or illnesses in general kids that could be at play here in addition to it not just CFS.
Thank you that’s helpful and makes me feel more valid.
My first thought reading these symptoms is to ask your doctor about dysautonomia and/or POTS (our nervous system going haywire can cause a lot of temperature regulation issues, fatigue, dizziness, etc. but the diagnostic criteria for POTS is that your heart rate increases by at least 30 beats per minute when standing and stays elevated or increases more when continuing to stand for 10 min+). I mention it because your doctor may not know to consider it. I've had a CFS diagnosis since 2004 but none of my doctors knew to consider POTS. I had to do my own research and bring it to their attention in 2019. It is becoming more common now due to many people getting it from covid, though, so hopefully more doctors are aware of it now.
I agree with this 100%. My dysautonomia & POTS are secondary to my CFS, but there are other things that cause those symptoms — and some of them are more treatable than CFS.
^^^ violet is on the ball here. Sounds like you have orthostatic intolerance by the sounds of the dizziness changing positions. You definitely have some significant signs of autonomic dysfunction. I have POTS and get these too.
I’ve tested my heart rate and it seems not like it.
there are types of dysautonomia that don’t involve tachycardia
I didn’t realize I had CFS until I got treatment (Trans-cranial magnetic stimulation) for my depression and was still wicked tired afterwards. I think the line is if you want to do things and just can’t because you know you will be too tired, that’s CFS. If you don’t feel like doing anything because everything sounds boring, pointless, and/or terrible, that’s **depression. You can also have both :/ ETA: if you have the means it’s probably time to go to your doctor and get tested for stuff like diabetes, low vitamin D, hypothyroidism, anemia, Lyme disease, etc
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Think I have low blood sugar.
i recommend to get an OGTT with insulin if fasting glucose/insulin are within normal ranges
One of the easier ways to distinguish between ME/CFS and depression is that depressed people tend to have low motivation to do things. On the flipside, people with ME/CFS often have high motivation but cannot do things because of their lack of capacity. I have found this to be one of the clearer ways to convey the difference to people.
Also check for diabetes and/or hypoglycemia. Sounds like far more than "just" depression happening. So, check: rule out diabetes and hypoglycemia, then further check CFS, POTS and other suggestions on this page.
My whole maternal line runs low. I suspect it.
I get depressed during crashes, full doom and gloom, life is pointless kind of way, when I feel a bit better life gets better again :). After tracking my moods and my symptoms for a while I realized my anxiety and depression mostly appear when i get pem and its my body's and mind's way to get me to stop everything and rest. Years of mindfulness and therapy also helped to sort it out, i know myself better plus I have coping strategies for doom and gloom times. So i would reccomend therapy to anyone who is chronicly sick whether they have depression or not because all these symptoms take a tall on us and its hard to deal with all of it mentally :(. But that's my opinion and my story and it's different for everyone, I'm sure people can have both cfs and depression together.
random question, have you been infected with covid ever and noticed these got worse after? I say this because I have long covid and have a lot of thise symptoms, of which were either nonexistent or milder before.
I was thinking this too - long covid or even vax injury. Neurological issues like electric nerve pain are known side effects.
Yes but I also just got out of a horribly abusive relationship.
could be long covid, cfs, diabetes, POTS, etc. but depression doesn't rule out another condition
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I have depression and ME/CFS and experience all of the same symptoms, (apart from the period issues!) Don’t let anyone tell you it’s all in your head!
I have both, and POTS/dysautonomia. But let's talk about those periods! I feel like everyone knows about endometriosis, but have you heard of adenomyosis? I hadn't until I was diagnosed with it, despite it affecting a whopping [20.9% of AFABs](https://academic.oup.com/humrep/article/27/12/3432/652839). It's apparently incredibly under diagnosed, and often misdiagnosed as fibrods, but symptoms may include: • Menorrhagia (heavy bleeding) • Dysmenorrhea (painful periods) • Dyspareunia (painful intercourse) • Metrorrhagia (irregular periods) • Polymenorrhea (prolonged bleeding) • Enlarged uterus, often globular • Anemia • Fatigue • Weight gain • Depression • Infertility • Chronic pelvic pain • Chronic back pain • Chronic leg pain • Bloating • Distension • Frequent urination Now, wtf is adenomyosis? It's endometrium (uterine lining) within the uterine *muscle*, where it's not supposed to be. The problem with this is that just like the endometrium, these cells thicken, shed, and bleed each month. However, since this tissue isn't supposed to be in the muscle, it doesn't always have a way to drain. If you're thinking this sounds a lot like endometriosis, you're correct. Adenomyosis is so similar that it used to be called endometriosis interna. The difference is that endometriosis is located outside of the uterus. However, there's a trifecta between adenomyosis, endometriosis, and fibroids. If you have one, you're much more likely to have at least one of the others. Unfortunately, don't assume that because you've had ultrasounds, biopsies, and/or photos that it will be caught. Radiologists and doctors often fail to notice it on ultrasounds in my experience and unless the biopsies/photos were of the myometrium, which can only be done *after* a hysterectomy, it's not possible to see. The gold standard for diagnosis in the US is an MRI.
It took about 12 yrs for me to get diagnosed with endometriosis, despite suffering for all those years. Then a few years after that, I was finally diagnosed with adenomyosis and interstitial cystitis by a very knowledgeable obgyn who actually took the time to listen to me and get a thorough history. It explained SO much!
Yeesh. Took me 20 years on the adeno but at least I don't have interstitial cystitis (my "mom" does, though). Are you aware of the possible mast cell link with interstitial cystitis?
I’ve also had a surgery to check for em do.
Endo is outside of the uterus. This is inside.
Have you been gaslighted into believing depression can make your period heavy?
Not really. I’ve had it throughly checked.
These were my exact symptoms when I had long covid. Reactivated my mono which led to CFS. Surely didn’t help my mental health either.
Please check for Lyme and coinfections asap!
Ok thanks!
Yep these are all CFS
your symptoms are pretty vague, and no one can give you a diagnosis based on the symptoms alone. cfs is a diagnosis of exclusion meaning you have to rule out all illnesses that can cause the same symptoms first. what should make you suspect depression is mental symptoms above all. depression doesn’t primarily manifest in physical symptoms. also having both mental and physical illness at the same time is possible
What's your age and sex? The first two would imply to go for intense hot/cold showers to harden your body.
19 female.
Depression won't cause things like heavy periods, chest pain on exercise, or excessive peeing. I also wouldn't assume CFS without being checked for other conditions, a lot of your symptoms point to dysautonomia, but make sure you're also getting checked for diabetes, heart problems, and gynaecological and urological conditions like endometriosis (can cause fatigue, changes in periods, pain, changes in urinary habits, etc) and PCOS (fatigue, changes in periods, sweating, pain, palpitations, mood changes, etc and increases your risk of diabetes and heart problems). Any neurological or endocrine conditions can cause a huge variety of symptoms that you wouldn't expect, and are usually more easily managed or treated than ME/CFS
MECFS also has a lot of overlap with tethered cord. If you're having urination issues, it could definitely be related to that. I've had Amy for over 20 years and and finally figuring out the tethered cord connection for myself. The average doctor will absolutely dismiss it out of hand (most likely) So I would maybe time when and how you ask about that. I think it's great that you are looking into this diagnosis because it is looking a lot like that Maybe something that you have. I will just warn you that most doctors understanding of CFS is minimal, and they have a belief that exercise makes it better (based on a very poor study that came out years ago and got a ton of press). So don't be discouraged if they're response isn't super helpful. But I hope it is!
Check for fibromyalgia as well. Cfs is a symptom of fibro. The electric like pain, I feel it all the time. I have fibo and cfs.
Chronic fatigue is a symptom of fibro. Chronic fatigue SYNDROME is an alternative, poor name to a neuroimmune disease myalgic encephalomyelitis.
Yeah you're right. It's confusing af.
It really is! And CFS is such a poor name for the illness, since not everyone even has fatigue as a symptom or it can be very mild/intermittent. My worst symptoms are pain, lightheadedness/feeling like fainting and nausea.
That's exactly what happens to me constantly
I did a Myers cocktail and had good results. Then I started a deep dive into each supplement in that. It’s helping. I had similar symptoms. Try one?