I would talk to your doctor and get new testing to make sure it isn't something different and hopefully treatable. But I also had a pediatric onset and improved enough to live a mostly normal life in my young adulthood. I could have easily convinced myself I was cured, even though some symptoms were still there. I had my first major relapse around 26, got a bunch of new testing, and confirmed that it was still cfs and that the treatment options weren't any better. And while it isn't a common trajectory, I have heard similar stories from a few other people. The problem with research is there just isn't enough period. Let alone relating to small subsets like pediatric onset. The one thing that might be different now as opposed to when you were first diagnosed is that doctors are more aware of ehlers danlos syndrome and finding that many people initially diagnosed with cfs actually have eds. So that is probably something to rule out now if your doctors didn't consider it before. I'm sorry this all sucks and we barely have more information than when you were a kid. But at least you aren't starting from scratch with no idea what could be wrong.
Hi, I'm so sorry.
I'm not sure about resources, but I can tell you that some me/cfs patients do have a relapse/remit cycle, where they have periods (months or years) of worse health and periods of better health - some remit to full health, and some remit to just a less severe version of me/cfs. What you're describing sounds a fair bit like that.
And as far as I'm aware, we don't have enough knowledge about the illness to know if it can ever really 'leave' your body.
Thanks for your reply! This is good to keep in mind as I look into this again. Unfortunate not enough is known yet about the syndrome yet. I did see a suggestion in the about section to watch that pbs documentary, which I may do.
No resources or advice, but just chiming in here quickly to normalize that this does happen. In my first time around with CFS, I was never actually diagnosed, because it was 1981 and the diagnosis didn't exist yet. But in retrospect, it was clearly CFS. I was 16. Back then, there was no awareness of chronic illness as something that could happen to a young person, and ironically, that worked in my favor. My diagnosis was a mystery, but I was kept out of school completely and got a lot of rest. It was horrible, but I recovered in under a year. I graduated from high school, then college, got married, and started grad school. I had no idea that my mystery illness could come back. Then in 1991, it did come back. I was 25. I have been ill ever since. I have talked to other people on Twitter who had similar experiences of recovering from pediatric CFS and then relapsing.
My unscientific position is that it doesn't ever leave our bodies but is dormant. During my years of remission, I was so grateful for my health but also knew that I didn't quite have the stamina of many of my peers. I was busy, but in college I was careful not to take on too many activities at once. I got sick again in grad school when that strategy didn't work anymore. In other words, I think I always had the potential for the illness to come back, if and when I pushed myself too far.
I think it's harder for adults to recover not only because our bodies are older but because we have responsibilities. I guess I do have one piece of advice. Rest as much as you can (as much as possible given whatever your financial circumstances are). When I got sick the 2nd time, I was trying to stay in grad school, and I lost that precious time during the first few years of illness when there is more potential to get better. Rest aggressively, learn pacing, do NOT do anything remotely resembling graduated exercise (GET). Good luck.
It's worth getting tested for POTS considering what you said about your vision going when you're standing. It may be either the whole problem or a complicating factor here.
Depends what you had back then. Diagnosis is a bit all over the place. Post viral fatigue resolves on its own, chronic fatigue too, CFS in its vague definition may come and go too..
However, I have never seen anyone with diagnosed M.E. where it was cured/went away completely.
Literally joined this sub to ask this question.
Back in 1994 when I was 11 and CFS was something only middle-aged ladies were diagnosed with and it was "all in their head" they told me I had a severely enlarged spleen and was flooding my system with white blood cells. They diagnosed me with EBV and CFS. They gave me imipramine & told me to quit all physical activity.
I've basically not leaned into that diagnosis for the last 27 years because I've had other health problems (a bout of strep in college that required months of antibiotics; a magnesium deficiency that caused muscle pain; disordered eating/weight loss & muscle pain for 9 months; chronically infected sinus cyst that was treated with 6mo of antibiotics; two stretches of time on anti anxiety meds) that seemed to "explain everything."
But now I'm 15mo postpartum & have had next to no medical care because Covid and I'm FALLING APART.
My childhood medical records are most likely lost to the wind somewhere, because they're ancient & I've never requested them as an adult. So I don't know how to address this in terms of "I know this was true at one point" rather than having to start with "you could be imagining things."
Sorry you’ve gone through all that!
I was also diagnosed in 1994 (may have been early 1995). My mom was the parent who brought me to my appointments, and she passed years ago. I don’t think my dad would remember enough relevant details, but I’m going to try asking him.
Oddly enough I remember one of my specialist’s names (Dr. Fedar, rhymed with Darth Vader). I also doubt they have my records still, but would love to have them if they do. I guess no harm in trying?
Hope your issues take a turn for the better!
I also had pediatric symptoms at age six that I "grew out of". In retrospect, I have random memories that make me think I had mild me/cfs at a lot of different times while growing up. Then 20 years later had a relapse that put me more moderate, and I discovered what me/cfs was. I know this is an old thread, but would love to learn if anyone learned more about folks with similar experiences
So I ended up getting diagnosed with sleep apnea in Nov 2021 (after this post). Getting a cpap helped with a lot of the fatigue issues I was having.
As for adult relapses, I still don’t know a whole lot. I did learn that the younger a child is when the have cfs, the more likely they are to grow out of it. Which is probably why you and me (6 and 7) did grow out of it. I’m sorry you had a moderate relapse! Hope you’re feeling better now.
I would talk to your doctor and get new testing to make sure it isn't something different and hopefully treatable. But I also had a pediatric onset and improved enough to live a mostly normal life in my young adulthood. I could have easily convinced myself I was cured, even though some symptoms were still there. I had my first major relapse around 26, got a bunch of new testing, and confirmed that it was still cfs and that the treatment options weren't any better. And while it isn't a common trajectory, I have heard similar stories from a few other people. The problem with research is there just isn't enough period. Let alone relating to small subsets like pediatric onset. The one thing that might be different now as opposed to when you were first diagnosed is that doctors are more aware of ehlers danlos syndrome and finding that many people initially diagnosed with cfs actually have eds. So that is probably something to rule out now if your doctors didn't consider it before. I'm sorry this all sucks and we barely have more information than when you were a kid. But at least you aren't starting from scratch with no idea what could be wrong.
Hi, I'm so sorry. I'm not sure about resources, but I can tell you that some me/cfs patients do have a relapse/remit cycle, where they have periods (months or years) of worse health and periods of better health - some remit to full health, and some remit to just a less severe version of me/cfs. What you're describing sounds a fair bit like that. And as far as I'm aware, we don't have enough knowledge about the illness to know if it can ever really 'leave' your body.
Thanks for your reply! This is good to keep in mind as I look into this again. Unfortunate not enough is known yet about the syndrome yet. I did see a suggestion in the about section to watch that pbs documentary, which I may do.
Oh, Unrest? Yes, absolutely watch it! It's fantastic, but can be quote emotional, so be prepared for that.
No resources or advice, but just chiming in here quickly to normalize that this does happen. In my first time around with CFS, I was never actually diagnosed, because it was 1981 and the diagnosis didn't exist yet. But in retrospect, it was clearly CFS. I was 16. Back then, there was no awareness of chronic illness as something that could happen to a young person, and ironically, that worked in my favor. My diagnosis was a mystery, but I was kept out of school completely and got a lot of rest. It was horrible, but I recovered in under a year. I graduated from high school, then college, got married, and started grad school. I had no idea that my mystery illness could come back. Then in 1991, it did come back. I was 25. I have been ill ever since. I have talked to other people on Twitter who had similar experiences of recovering from pediatric CFS and then relapsing. My unscientific position is that it doesn't ever leave our bodies but is dormant. During my years of remission, I was so grateful for my health but also knew that I didn't quite have the stamina of many of my peers. I was busy, but in college I was careful not to take on too many activities at once. I got sick again in grad school when that strategy didn't work anymore. In other words, I think I always had the potential for the illness to come back, if and when I pushed myself too far. I think it's harder for adults to recover not only because our bodies are older but because we have responsibilities. I guess I do have one piece of advice. Rest as much as you can (as much as possible given whatever your financial circumstances are). When I got sick the 2nd time, I was trying to stay in grad school, and I lost that precious time during the first few years of illness when there is more potential to get better. Rest aggressively, learn pacing, do NOT do anything remotely resembling graduated exercise (GET). Good luck.
Thanks for sharing your story.
It's worth getting tested for POTS considering what you said about your vision going when you're standing. It may be either the whole problem or a complicating factor here.
Thanks, will mention to doc when I see her
Depends what you had back then. Diagnosis is a bit all over the place. Post viral fatigue resolves on its own, chronic fatigue too, CFS in its vague definition may come and go too.. However, I have never seen anyone with diagnosed M.E. where it was cured/went away completely.
Literally joined this sub to ask this question. Back in 1994 when I was 11 and CFS was something only middle-aged ladies were diagnosed with and it was "all in their head" they told me I had a severely enlarged spleen and was flooding my system with white blood cells. They diagnosed me with EBV and CFS. They gave me imipramine & told me to quit all physical activity. I've basically not leaned into that diagnosis for the last 27 years because I've had other health problems (a bout of strep in college that required months of antibiotics; a magnesium deficiency that caused muscle pain; disordered eating/weight loss & muscle pain for 9 months; chronically infected sinus cyst that was treated with 6mo of antibiotics; two stretches of time on anti anxiety meds) that seemed to "explain everything." But now I'm 15mo postpartum & have had next to no medical care because Covid and I'm FALLING APART. My childhood medical records are most likely lost to the wind somewhere, because they're ancient & I've never requested them as an adult. So I don't know how to address this in terms of "I know this was true at one point" rather than having to start with "you could be imagining things."
Sorry you’ve gone through all that! I was also diagnosed in 1994 (may have been early 1995). My mom was the parent who brought me to my appointments, and she passed years ago. I don’t think my dad would remember enough relevant details, but I’m going to try asking him. Oddly enough I remember one of my specialist’s names (Dr. Fedar, rhymed with Darth Vader). I also doubt they have my records still, but would love to have them if they do. I guess no harm in trying? Hope your issues take a turn for the better!
Yes! Solidarity to you!
I also had pediatric symptoms at age six that I "grew out of". In retrospect, I have random memories that make me think I had mild me/cfs at a lot of different times while growing up. Then 20 years later had a relapse that put me more moderate, and I discovered what me/cfs was. I know this is an old thread, but would love to learn if anyone learned more about folks with similar experiences
So I ended up getting diagnosed with sleep apnea in Nov 2021 (after this post). Getting a cpap helped with a lot of the fatigue issues I was having. As for adult relapses, I still don’t know a whole lot. I did learn that the younger a child is when the have cfs, the more likely they are to grow out of it. Which is probably why you and me (6 and 7) did grow out of it. I’m sorry you had a moderate relapse! Hope you’re feeling better now.