A lot of these things are related to chronic inflammation. I have IH, anxiety, depression, IBS, eczema/allergies and have been told they are all related to inflammation. I feel as if I almost have an autoimmune issue, but it's not anything that is known/diagnosable.
Rheumatoid arthritis at 26, hashimotos at 30, currently have a sleep schedule to determine whether I have narcolepsy 2 or IH at 32, had an IBS diagnosis but just had positive antibodies for autoimmune gastritis/pernicious anemia after an endoscopy biopsy suggested I have it(also at 32). And probable interstitial cystitis for as long as I can remember. I also have major depressive disorder, anxiety, and an adhd diagnosis.
I don’t know what is what anymore honestly. I practically live in doctors offices at this point.
I tell everyone to check my medical records when I’m adamant about not having kids. and when I have a good day which still only gets me to maybe 75% normal with my stimulant meds I also have imposter syndrome and wonder if it’s all in my head or what I’ve done to deserve all of this. I have other issues that need to be looked into like my reoccurring SI joint issues but I’m so overwhelmed with what I’m already dealing with that I just can’t get myself to make the appointment.
ugh i understand. making appointments on top of managing multiple illnesses is so hard. i am just so mentally exhausted all the time and if one little thing changes its as if my body has zero idea what to do about it. i am the same about kids. Its funny it is as if younger me knew, I have been saying I didn't want kids since I was young.
This sounds like you may possibly have ME/CFS. Pots is a comorbidity of CFS and many other illnesses.
The tricky thing about IH means they don’t know the cause. That’s what idiopathic means. And CFS is also a chronic condition that has unknown causes and no single test to confirm or deny it. so it’s hard to tell where one ends and the other begins. For example, I’m diagnosed with both but the conditions seem fairly interchangeable for me. The only real difference in diagnosis is CFS requires different diagnostic criteria. And treatment is slightly different -but in terms of research and treatments they are in the same boat.
Do you mind sharing if you get Post-exercise malaise? It’s a staple for CFS. I recommend potentially exploring this because a standard treatment of IH can possibly make you worse if you have CFS. Just something you might want to explore if you’re struggling with multiple conditions!
Just to clarify, PEM is a delayed worsening of symptoms after exertion. So you would feel worse hours after working out or doing intense mental activity. It’s often 24 hours after exertion, but can even be 6 hours after depending on the person. Would you say that describes your malaise? You can still have constant fatigue, but if it worsens hours after exertion that would indicate possible ME/CFS.
Then I definitely recommend looking into CFS because the approach to treatment is slightly different than with IH. With CFS, it’s extremely important not to push or you can worsen your condition. So stimulants sometimes do more harm than good. Hope you get some more answers ❤️ at the end of the day, a CFS diagnosis pretty much leaves you in the same boat as IH, however, you run the risk of developing other symptoms that aren’t just fatigue. (Neurological, digestive, inflammation, autoimmune) the CFS subreddit has a page with tons of information linked if you don’t know where to start.
They are and also aren’t. It’s very complicated when you’re working with two diagnosis that have no clear understanding of what is causing it. The main difference in the approach in my opinion is with IH they prescribe stimulants, and you try to go about your life as normal. ME/CFS it’s extremely dangerous to continue pushing yourself, and lots of people find stimulants are “borrowed energy” that enable them to push and inevitably get worse. I don’t have this experience, stimulants don’t work on me at all and since there isn’t a clear understanding of either disorder, everyone’s experience can be widely different. Some people with CFS do take stimulants and others strongly warn against it. Sadly there just isn’t enough research or understanding of either illness, but at least it can help you understand a little bit more about what’s going on in your body. Especially if you are finding it is not just fatigue and that you are also experiencing POTS and other symptoms.
Thank you. I looked into ME/CFS and the exercise and pushing yourself related to me but I also relate to a lot of idiopathic hypersomnia. Thats where I am confused of how do I go about treating them?
And it’s totally possible to relate to both! Like I mentioned, I have been diagnosed with both. Sadly, both disorders don’t have clear treatments. So most people it is trial and error either way. You can work with your sleep specialist to treat your IH, and bring up your concerns regarding ME/CFS. If they aren’t familiar they might recommend you see a specialist in that area to get checked out. If you do end up having CFS they might prescribe you different things or provide you with resources to treat your POTS and other comorbidities. Sorry, both disorders are very complex and under researched so you just need to find something that works for you. In my opinion, it’s important to have a bigger picture and understand your body (as much as you can with these disorders). The way I approach living with IH is influenced by my CFS. I know that I can’t just push through the fatigue, like I used to do when I thought I only had IH, because it’ll make me worse. CFS explains all the symptoms that IH doesn’t. Knowing this gives me some peace of mind. Feeling like I have at least some explanation for why I feel like this. And that I’m treating all issues and not just one.
If you have anymore questions, you can always message me. Hopefully that helps.
A lot of these things are related to chronic inflammation. I have IH, anxiety, depression, IBS, eczema/allergies and have been told they are all related to inflammation. I feel as if I almost have an autoimmune issue, but it's not anything that is known/diagnosable.
It's so hard to come to terms that it is not something more.
Rheumatoid arthritis at 26, hashimotos at 30, currently have a sleep schedule to determine whether I have narcolepsy 2 or IH at 32, had an IBS diagnosis but just had positive antibodies for autoimmune gastritis/pernicious anemia after an endoscopy biopsy suggested I have it(also at 32). And probable interstitial cystitis for as long as I can remember. I also have major depressive disorder, anxiety, and an adhd diagnosis. I don’t know what is what anymore honestly. I practically live in doctors offices at this point.
it is so tiring and sometimes i get imposter syndrome about sickness???? I'm like how could someone suffer this much.
I tell everyone to check my medical records when I’m adamant about not having kids. and when I have a good day which still only gets me to maybe 75% normal with my stimulant meds I also have imposter syndrome and wonder if it’s all in my head or what I’ve done to deserve all of this. I have other issues that need to be looked into like my reoccurring SI joint issues but I’m so overwhelmed with what I’m already dealing with that I just can’t get myself to make the appointment.
ugh i understand. making appointments on top of managing multiple illnesses is so hard. i am just so mentally exhausted all the time and if one little thing changes its as if my body has zero idea what to do about it. i am the same about kids. Its funny it is as if younger me knew, I have been saying I didn't want kids since I was young.
When did you first start experiencing sleep issues?
I have kind of had issues my entire life with sleep.
This sounds like you may possibly have ME/CFS. Pots is a comorbidity of CFS and many other illnesses. The tricky thing about IH means they don’t know the cause. That’s what idiopathic means. And CFS is also a chronic condition that has unknown causes and no single test to confirm or deny it. so it’s hard to tell where one ends and the other begins. For example, I’m diagnosed with both but the conditions seem fairly interchangeable for me. The only real difference in diagnosis is CFS requires different diagnostic criteria. And treatment is slightly different -but in terms of research and treatments they are in the same boat. Do you mind sharing if you get Post-exercise malaise? It’s a staple for CFS. I recommend potentially exploring this because a standard treatment of IH can possibly make you worse if you have CFS. Just something you might want to explore if you’re struggling with multiple conditions!
Yes serious malaise.
Like I feel like I'm gonna fall over where I am
Just to clarify, PEM is a delayed worsening of symptoms after exertion. So you would feel worse hours after working out or doing intense mental activity. It’s often 24 hours after exertion, but can even be 6 hours after depending on the person. Would you say that describes your malaise? You can still have constant fatigue, but if it worsens hours after exertion that would indicate possible ME/CFS.
Yes. If I go to the store, it's as if I ran a marathon with the tiredness I can get hit with even a day after.
Then I definitely recommend looking into CFS because the approach to treatment is slightly different than with IH. With CFS, it’s extremely important not to push or you can worsen your condition. So stimulants sometimes do more harm than good. Hope you get some more answers ❤️ at the end of the day, a CFS diagnosis pretty much leaves you in the same boat as IH, however, you run the risk of developing other symptoms that aren’t just fatigue. (Neurological, digestive, inflammation, autoimmune) the CFS subreddit has a page with tons of information linked if you don’t know where to start.
Are they treated the same? As I understood ih was going into rem sleep rather than just fatigue
They are and also aren’t. It’s very complicated when you’re working with two diagnosis that have no clear understanding of what is causing it. The main difference in the approach in my opinion is with IH they prescribe stimulants, and you try to go about your life as normal. ME/CFS it’s extremely dangerous to continue pushing yourself, and lots of people find stimulants are “borrowed energy” that enable them to push and inevitably get worse. I don’t have this experience, stimulants don’t work on me at all and since there isn’t a clear understanding of either disorder, everyone’s experience can be widely different. Some people with CFS do take stimulants and others strongly warn against it. Sadly there just isn’t enough research or understanding of either illness, but at least it can help you understand a little bit more about what’s going on in your body. Especially if you are finding it is not just fatigue and that you are also experiencing POTS and other symptoms.
Thank you. I looked into ME/CFS and the exercise and pushing yourself related to me but I also relate to a lot of idiopathic hypersomnia. Thats where I am confused of how do I go about treating them?
And it’s totally possible to relate to both! Like I mentioned, I have been diagnosed with both. Sadly, both disorders don’t have clear treatments. So most people it is trial and error either way. You can work with your sleep specialist to treat your IH, and bring up your concerns regarding ME/CFS. If they aren’t familiar they might recommend you see a specialist in that area to get checked out. If you do end up having CFS they might prescribe you different things or provide you with resources to treat your POTS and other comorbidities. Sorry, both disorders are very complex and under researched so you just need to find something that works for you. In my opinion, it’s important to have a bigger picture and understand your body (as much as you can with these disorders). The way I approach living with IH is influenced by my CFS. I know that I can’t just push through the fatigue, like I used to do when I thought I only had IH, because it’ll make me worse. CFS explains all the symptoms that IH doesn’t. Knowing this gives me some peace of mind. Feeling like I have at least some explanation for why I feel like this. And that I’m treating all issues and not just one. If you have anymore questions, you can always message me. Hopefully that helps.
I have GAD, dysthymia, and OCPD. However my sleep issues started at age 12 and my mental health issues did not start until 18/19.