Dr.Patient
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Has the unbearable, wanting to die, intensity of your fatigue gone down over time? Please help, I want to know...
Thank you.
Thank you.
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Has the intensity of your fatigue gone down over time?
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minkeygirl
But I Look So Good.
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No
*GG*
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Yes. Why? Not sure. Had a crash in 2009 and changed many things, have been suffering since 2003. So after 6 plus years of making very little gains. I changed lots! Was it a better sleep drug so I awoke more refreshed? Was it Low Dose Naltrexone (LDN)? The stopping of caffeine and alcohol, and starting of Meditation and gently Yoga? CPAP machine?
Not sure, lots changed in a short period of time!
GG
Not sure, lots changed in a short period of time!
GG
ahmo
Senior Member
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It appears that the intensity of my fatigue has lessened because of my strategies for managing it. Pacing + antioxidants, and most recently AlphaGPC choline + citicoline. Antioxidants and stopping have kept me from crashing this past year.
Kati
Patient in training
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This is not fatigue.
It did ease up for me after the first 4-5 years from severe onset. I then moved to moderate level but 3 years ago I deteriorated and I now swing from moderate to severe.
I'm now into my 14th year since severe onset, 22nd year since mild onset and 32 years since when I believe it all began.
I agree @Kati , it's not plain fatigue itself, it's neuroimmune induced weakness that sucks the life out of you.
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PDXhausted
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I was bedridden with soul-crushing "fatigue" or whatever you want to call it, to the point where I would crash just from trying to roll onto my side or bend my toes. I guess I would call it cellular fatigue but not exactly sure of the cause. Mine was progressive and severe, and I felt close to death. I tried many things. The only thing that stopped it and turned it around for me was Equilibrant.
I started at 1/8th of a pill and gradually increased to 1/4 pill and it took about one month until I really noticed a difference. After two months I was able to sit up for a few minutes in bed when I ate and I stopped crashing on a daily basis. Some of my cognitive/neurological sensitivities improved too (eg I could only speak a few words to my husband per day and could not tolerate anyone in my room for more than 30 sec prior to equilibrant. After 2 months of equilibrant, I could talk to my husband for 5min at a time)
I have since had ups and downs from other issues and treatments (severe endometriosis among other things) so I wouldn't say that I'm any kind of success story, but I've stayed on a small dose of equilibrant for about 1.5 years and the only time I relapsed into that level of fatigue again was when I had to stop taking it for a month because it conflicted with another treatment I was working on.
Another caveat, I consider myself to be probably a separate subset or possibly different disease than many with ME/CFS in that I had a gradual onset and did not have a sudden flu-like onset or flu-like symptoms. But I do have extreme exertion intolerance, cognitive problems, muscle problems, brain fog, severe sound/light intolerance, etc.
I started at 1/8th of a pill and gradually increased to 1/4 pill and it took about one month until I really noticed a difference. After two months I was able to sit up for a few minutes in bed when I ate and I stopped crashing on a daily basis. Some of my cognitive/neurological sensitivities improved too (eg I could only speak a few words to my husband per day and could not tolerate anyone in my room for more than 30 sec prior to equilibrant. After 2 months of equilibrant, I could talk to my husband for 5min at a time)
I have since had ups and downs from other issues and treatments (severe endometriosis among other things) so I wouldn't say that I'm any kind of success story, but I've stayed on a small dose of equilibrant for about 1.5 years and the only time I relapsed into that level of fatigue again was when I had to stop taking it for a month because it conflicted with another treatment I was working on.
Another caveat, I consider myself to be probably a separate subset or possibly different disease than many with ME/CFS in that I had a gradual onset and did not have a sudden flu-like onset or flu-like symptoms. But I do have extreme exertion intolerance, cognitive problems, muscle problems, brain fog, severe sound/light intolerance, etc.
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alex3619
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Yes, over a very long time frame though.
However if you are asking about energy, no.
Energy and fatigue are not the same. Fatigue is the sensation. Lack of energy is a primary disabling symptom.
PEM episodes have become rarer and less intense as well. They last for a shorter time too. However the range of things that trigger PEM seems to have increased.
However if you are asking about energy, no.
Energy and fatigue are not the same. Fatigue is the sensation. Lack of energy is a primary disabling symptom.
PEM episodes have become rarer and less intense as well. They last for a shorter time too. However the range of things that trigger PEM seems to have increased.
Gingergrrl
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I am in the minority in that I truly do not feel fatigue versus complete autonomic dysfunction and shortness of breath. It's completely disabling but it is not something that I could ever label as fatigue (for me.)
ETA: When I had mono from EBV in early 2012, that was debilitating fatigue unlike anything I have ever experienced but I do not have that component now.
ETA: When I had mono from EBV in early 2012, that was debilitating fatigue unlike anything I have ever experienced but I do not have that component now.
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Misfit Toy
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When I first got sick, I was in a coma. For about 8 months. Nothing would stir me. I was sleeping beauty waiting for something, anything to wake me up. It would stop me in my tracks.
The phone would be ringing in the same room I was sleeping in and I didn't hear it. I was seriously comatose. I would wake up dizzy, go to class, come home and sleep.
Then, I was wide awake. In one month I could not sleep.
Yes, I had fatigue but it wasn't fatigue in the true sense of the word. My whole body was affected.
A few years later it went from comatose to awake and crazy ass symptoms that were letting me know, my body has gone berserk.
The phone would be ringing in the same room I was sleeping in and I didn't hear it. I was seriously comatose. I would wake up dizzy, go to class, come home and sleep.
Then, I was wide awake. In one month I could not sleep.
Yes, I had fatigue but it wasn't fatigue in the true sense of the word. My whole body was affected.
A few years later it went from comatose to awake and crazy ass symptoms that were letting me know, my body has gone berserk.
lookinglass
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Yes. Except for relapsing last year when an infected tooth extraction needed heavy antibiotics.
I would agree it is not 'fatigue' but a total body crash with an inability to get out of bed. I am in the moderate range. Except for the outset of the condition when I was bedridden. I have been good for about 6 weeks now. Blessed state. I don't know how long it will last.
I would agree it is not 'fatigue' but a total body crash with an inability to get out of bed. I am in the moderate range. Except for the outset of the condition when I was bedridden. I have been good for about 6 weeks now. Blessed state. I don't know how long it will last.
I like this definition! And yes, it has gotten better in the sense that it's less up and down. I guess for me it was pacing and learning about how the illness works (i.e.: pushing through = feeling worse later). Pacing makes me more stable but doesn't make me able to increase activity in any way. But I'll take stable & weak over deep crashes any day.
alex3619
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I would not say you are in the minority. I was addressing fatigue not autonomic issues. They are two separate things, and perhaps the majority of us have both, while others have just fatigue or just autonomic issues.
Autonomic disorders and fatigue disorders outnumber just ME. Its not a minority. It might be a minority on this forum, but that is from the perspective of an ME and CFS forum ... its a bias.
alex3619
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Some more thoughts. The crushing fatigue I used to get I would now describe as chronic PEM. I would crash, and before I recovered I would crash one or several times more. The PEM merged together into monolithic exhaustion ups and downs. Once I stopped crashing so often, with stricter and stricter pacing, the PEM separated into distinct crashes.
More recently, several years back I was in hospital for nearly two months. The enforced bed rest saw my remaining chronic fatigue vanish. It did not improve my energy though. I get fatigue that comes and goes now, of different types. Fatigue is not from one cause. However 99% of the time I have no energy to do very much. That is the bedrock to my position. That 1% is for several minutes after waking from sleep that is not at the worst end of my sleep problems. Its not all the time. Even then we are talking light chores ... organizing rubbish, or washing dishes, or starting to prep for cooking.
I do have other symptoms though, a long list. They tend to get lost in fatigue discussions.
Fatigue is too broad a term. The unrelenting crushing exhaustion I had for years in the 90s is so very very different from just fatigue.
More recently, several years back I was in hospital for nearly two months. The enforced bed rest saw my remaining chronic fatigue vanish. It did not improve my energy though. I get fatigue that comes and goes now, of different types. Fatigue is not from one cause. However 99% of the time I have no energy to do very much. That is the bedrock to my position. That 1% is for several minutes after waking from sleep that is not at the worst end of my sleep problems. Its not all the time. Even then we are talking light chores ... organizing rubbish, or washing dishes, or starting to prep for cooking.
I do have other symptoms though, a long list. They tend to get lost in fatigue discussions.
Fatigue is too broad a term. The unrelenting crushing exhaustion I had for years in the 90s is so very very different from just fatigue.
lansbergen
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trails
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No. Still need Modafinil to keep me awake and Adavan to keep me asleep.
Old Bones
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Yes, the "can't hold my head up" and "it's absolute torture to be out of bed" fatigue I experienced in the early years is much improved. However, with a few cognitive exceptions, I am much more functionally impaired these days. As mentioned by others in other threads, each time I have exceeded my limits, my baseline activity level has dropped. I fear the next crash, and am actively trying to avoid it, because there is not much left to give up.
One of my current issues is low endurance, as opposed to fatigue -- one of the reasons, I understand, for the proposal to rename the illness Systemic Exertion Intolerance Disease.
One of my current issues is low endurance, as opposed to fatigue -- one of the reasons, I understand, for the proposal to rename the illness Systemic Exertion Intolerance Disease.
Timaca
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Yes. I am much better (most of the time). Antibiotics and antivirals have both helped me. Surprisingly, the last 3 years I've figured out that I have food allergies (by scratch test at the allergist's office) and food intolerances. I'm still trying to figure that out.
But, I've gone from not being able to function well at all, to doing some hikes and exercise classes at my athletic club. Having said that, on New Year's Eve I had what I believe to be a viral reactivation....neck pain, headache, then very disconnected from my body. Hard to walk...and I certainly didn't leave the house for 3 days. Then a week later I'm back to doing my exercise classes at the athletic club. (easy -- moderate exercise classes....but I can do it!) I'm grateful I pulled out of the reactivation. The big question to me is what set it off? A similar thing happened in July to me....
Here's one post on my blog. I don't have all my food issues figured out (by a long shot)....and certainly there seems to be a viral component to this in me....but I am more functional than I used to be and I am so grateful!
But, I've gone from not being able to function well at all, to doing some hikes and exercise classes at my athletic club. Having said that, on New Year's Eve I had what I believe to be a viral reactivation....neck pain, headache, then very disconnected from my body. Hard to walk...and I certainly didn't leave the house for 3 days. Then a week later I'm back to doing my exercise classes at the athletic club. (easy -- moderate exercise classes....but I can do it!) I'm grateful I pulled out of the reactivation. The big question to me is what set it off? A similar thing happened in July to me....
Here's one post on my blog. I don't have all my food issues figured out (by a long shot)....and certainly there seems to be a viral component to this in me....but I am more functional than I used to be and I am so grateful!