“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”
Autoimmune Fatigue
Chronic fatigue syndrome (ME/CFS) and fibromyalgia aren’t the only disorders being shortchanged by the paucity of “fatigue”research. We’re not talking about ordinary fatigue. There’s a dramatic difference between normal everyday “fatigue” and the kind of “profoundly debilitating fatigue” that can affect every part of one’s life.
Citing a nearly 8,000 person online survey, the American Autoimmune and Related Diseases Association asserted that the often disabling fatigue found in autoimmune disorders should become a serious research focus.
The survey indicated that profound fatigue is probably the most common, debilitating and most poorly treated symptom people with autoimmune disorders have to deal with.
- Almost sixty percent of all people with autoimmune disorders said it was “probably their most debilitating symptom”.
- Two-thirds said their fatigue prevented them from doing “the simplest tasks”.
- Almost sixty percent said they were given no treatments for their fatigue
- Over twenty percent reported they had lost their jobs because of it.
The NIH reports that about 25 million people in the U.S. have an autoimmune disorder. By adding in autoimmune disorders without good epidemiological studies the AARDA doubles that number. If the AARDA is correct as many as 30 million Americans with autoimmune disorders suffer from severe and untreated fatigue.
More Fatigue!
“The prevalence of fatigue in motor neuron diseases is remarkably high, and may contribute significantly to patients’ disability and a poor quality of life. Despite its high prevalence, fatigue is an understudied clinical problem in motor neuron diseases and is often overlooked.” Abraham
That’s just the beginning of the fatigue issue, however. Fatigue is also common in neurological disorders
“Chronic fatigue is a typical symptom of neurological diseases, and is most disabling in multiple sclerosis, postpoliomyelitis, poststroke, and in chronic fatigue syndrome.” Chaudhuri and Behan
and depression
“Fatigue shows a slow response to antidepressant treatment and psychotherapy. Improved work performance is strongly correlated to improvement in energy. However, the assessment and treatment of fatigue in depressive disorder remains understudied. “
and, of course in ME/CFS and FM. Add the perhaps 15 million ME/CFS and/or FM patients and significant numbers of post-cancer patients in and you are surely well-past fifty million people in the US with severe, untreated fatigue.
That’s a lot of suffering and a lot of productivity lost.
Numerous things can cause fatigue but in a recent overview Maes proposes that a single factor in the brain – astrocyte degradation – could underlies many disorders associated with profound fatigue. Maes points to a suite of abnormalities (increased levels of oxidative stress, peripheral inflammation, gray matter atrophy, reduced glucose metabolism and reduced brain blood flows) common to ME/CFS, Parkinson’s disease and multiple sclerosis. Whether the triggering factor is a pathogen, toxin or other factor Maes proposes that a feed forward process driven by inflammation, oxidative stress and mitochondrial dysfunction underlies many severely fatiguing disorders.
That is a very fair way of putting this issue. Even the term “fatigue” in its normal sense, does not really describe what happens to CFS victims. The term generally conveys that someone has done a lot of hard work and just needs a rest.
“Debilitation” might be better. It really is like a disability, not just a bit of tiredness that will come right with rest. It is a condition getting close to “paralysis” in terms of its impact on sufferers, but that would be the wrong word too. “Malaise” is another word that is almost right.
I believe what causes fatigue, in depression, and what causes fatigue, in anxiety are both very misunderstood. Many people believe that depression and anxiety are both depression, but anxiety, is not depression. When talking about the fatigue caused by depression and the fatigue caused by anxiety, I believe we are talking about two very different reasons for the source of the fatigue. This should be taken into consideration when evaluating why someone with ME/CFS is experiencing fatigue. Is the fatigue caused from being down-regulated, or is the fatigue caused by being up-regulated? Both depression and anxiety can invoke immune system changes.
Depression generates emotions such as hopelessness, despair and anger. The fatigue from depression makes you feel down; unmotivated. You lose interest in things, that once gave you pleasure. Depressed people have a lack of energy. They suffer from aches and pains. Depression can affect the ability to fight off infections/viruses and lends you more vulnerable to illnesses of a less than optimal immune system eg cancer, diabetes.
The fatigue from anxiety can make you feel wired, edgy, manic, unable to relax, or sleep. You feel overwhelmed much of the time, and unable to handle stress. Anxious people are more likely to suffer from IBS, nausea, headaches, cognitive difficulties, allergies and dizziness. People who experience the fight-or-flight response often think that is a manifestation of depression, when in actuality, it is a manifestation of anxiety. It has been suggested, that people who suffer from anxiety are more likely to develop autoimmune illnesses eg lupus, MS.
Perhaps, this is why some people with ME/CFS seem to need stimulation/exercise in order to get some relief from their symptoms. They have the depressed version of ME/CFS and are in need of a boost. Stimulation/exercise for others with ME/CFS will only make their symptoms worse; flare. These people have the anxiety version of ME/CFS and need agents to calm their overactive systems down.
Well said. I think you have a good point.
In your last paragraph you mention something I haven’t seen addressed before, namely that some of us with ME/CFS get some symptomatic relief from stimulation/exercise. It’s really true for me. When I’m able to be active at a low level (playing guitar, having a conversation, walking, etc.) my symptoms are reduced. The Catch-22 is PEM – even that very low level of activity for more than 10 or 15 minutes causes an exacerbation of symptoms (the customary mash-up of headaches, exhaustion, malaise) when I stop.
It’s what makes pacing so difficult. To be doing something and to feel better, even for a little while, is such a welcome reprieve. But the blessing is a curse when I find myself back in bed, in the dark and with an ice-bag on my head.
I’d be interested to know what proportion of ME/CFS/SEID patients find some symptomatic relief during short periods of low level activity.
I do feel better when I am doing something enjoyable like having a chat with someone or standing next to my bird’s cage talking to him or even walking onto my balcony and standing leaning on the railing smelling the fresh air. I feel better when having my bath, and even afterward many times. I think it is about my sense of normalcy in these things, and of tasting the ‘forbidden fruit’ that is now so rare. Like you, the payback comes and it is probably not worth it, but at the time when the endorphins are flowing and I am feeling the sensations of those nice things, I don’t want to stop.
I can’t do these things for very long, and after two minutes standing leaning on the balcony railing, I will be back in bed. But the next day I will pay for it.
I think the sense of symptoms lifting for awhile is partially due to endorphins, partially due to a short term indulgence in the fantasy that I can be well again… if not now, then soon. When I am doing these things, I feel that I can get better. Also, the good feelings and distraction from lying in bed are enough to disrupt my body and interrupt the pain signals for a few minutes. I have the same effect when I am typing in conversation with an online friend or working on some digital art. It doesn’t last, and it is sometimes overridden with pain so intense I have to stop.
The bath helps my fibromyalgia pain and makes my muscles feel better until the later when the exertion payback hits me.
I have never managed to work out how much of these tiny doses of normal pleasurable sensation I should allow myself, and in what way I should try to bring the gates down and drag myself back to my sickness reality. So often I persist just that little bit longer, and take the punishment when it comes.
This seems like such an inhumane thing to have to fight and struggle with. It is far bigger and more insidious than I know how to manage. Pacing for a person with a creative and life craving mind that never stops seems impossible, even if I could work out how to do it.
I do have a carer for an hour and a half a day. on good days that seems about right, but on bad days it seems woefully insufficient. Just dragging myself to the kitchen twice to put a frozen dinner in and take it out 10 minutes later can be more than I can handle.
I believe that more of us need aids such as bath lifts or walk in baths, recliner chairs, and others to help us several times a day at minimum. Why should bathing be a luxury we have to deny ourselves, and weigh up against the good feeling of being really clean and fresh and feeling like a normal person instead of a smelly, sweaty invalid?
Exactly, pacing is very difficult precisely because the activities that are beneficial for you are what you are at risk of overdoing.
Very interested that playing the guitar is one of them for you.
My experience, although I have fibro not CFS, is that a properly paced activity within my threshold, I can do pretty much for an indefinite length of time and it is all beneficial.
Go over the threshold for 3 minutes and I will have a crash.
What this means for some people is that many activities, they simply cannot do at all. By the way, it has as much to do with posture as with level of exertion, it is like a variation on Postural Orthostatic Tachycardia Syndrome.
I think driving a car is bad for people with a very low threshold because of the type of load on the system that is involved in holding arms out straight. This is bad practice from a driving point of view, but maybe holding the steering wheel at the bottom would be less of a strain.
Playing the guitar – can you do this lying down and with your elbows supported as much as possible?
One of my tactics with something that is over my threshold – climbing stairs – is to go very slowly and leaning as much of my weight as possible on the arm-rails at the side. Then I can do it without going over the threshold. It is one of the oddities of the postural aspect, that I can exert my arm muscles to quite a high level as long as the elbow is supported or there is some other direct fulcrum effect such as pushing against something – but holding my arms out straight from my body is very quickly too much. And doing something with the arm out straight, like painting, is murder.
It has to be something to do with certain postures cutting off the flow of something – blood to the muscle, or oxygen, or intersticial fluids, or something. But this might be unique to fibro not CFS – but it would go a long way to explaining the mysterious exhaustion of CFS if it was the case there too, maybe even worse.
fascinating piece, thank you. Would love to know if these people have PEM, as well as fatigue
Fascinating – thank you. I’d be interested to know what proportion of people with fatigue also experience PEM.
I’ve been doing some research on neuroinflammation.
Found this on Wikipedia:
“Peripheral Immune Response[edit]
The blood brain barrier is a structure composed of endothelial cells and astrocytes that forms a barrier between the brain and circulating blood. Physiologically, this enables the brain to be protected from potentially toxic molecules and cells in the blood. Astrocytes form tight junctions and therefore may strictly regulate what may pass the blood brain barrier and enter the interstitial space.[5] After injury and sustained release of inflammatory factors such as chemokines, the blood brain barrier may be compromised, becoming permeable to circulating blood components and peripheral immune cells. Cells involved in the innate and adaptive immune responses, such as macrophages, T Cells, and B Cells, may then enter into the brain. This exacerbates the inflammatory environment of the brain and contributes to chronic neuroinflammation and neurodegeneration.”
The text halfway through this quote really interested me – “after sustained release of inflammatory factors such as chemokines, the blood brain barrier may be compromised…”
So how bout this for a CFS theory. An Initial viral onslaught – of a highly virulent nature – whacks susceptible person. Immunity is activated for a period of time and this breaks down blood brain barrier. Immune cells then enter brain and chronic neuroinflammation is generated.
Treatment? Restore BBB, or reduce inflammation.
.
Bingo! I think this is exactly what happens in many cases but probably not all.I also think the T2 hyperintensities that many of us have in the white matter of our brains on MRI imaging may indicate the areas of breakdown in the blood-brain barrier. This breakdown may explain why so many of us are sensitive to chemicals and medications.
Exactly…research please
Wow, this could be part of the problem that leads to what I think of as “Postural Orthostatic Tachycardia Syndrome” type effects. The mysterious turbo-charged overload of the cardio-vascular system when trying to do certain simple activities involving a particular posture. Squatting is like this for me, and anything with arms out straight and unsupported. Climbing stairs is also far too exhausting given my other capabilities for activities that do not take me over my energy threshold.
I just commented above before reading this, that I think there are problems with blood flow or intersticial fluid flows, but I presumed the problem is blockages. Maybe the problem is “things that should be blocked, permeating through”? Or does the permeation cause the blockages to evolve, such as the blood vessel wall stiffness and myofascial tension?
I am another who perks up in conversations of short duration–up to 30 minutes–or walking/gardening for short periods, but I crash after it is over.
But can you “pace” better? Like reclining comfortably while you converse?
Or walking with a support frame? Please do not feel insulted, finding the level at which one can “work out” below one’s threshold is I think crucial to turning the condition around.
I agree with this whole heartedly. I am “legally” disabled with fibromyalgia. Meaning in 2007 @ 49 I got Social Security Disability for a Syndrome they said they didn’t recognize and I was too young to receive it, but receive I did. I won’t give you my laundry list, though this ” non progressive” Syndrome has progressed to include symptoms I get weeks, months, or years leaving Doctors scratching their heads, all tests negative, just inflammation of unknown origin. Then low and behold it pops up as a new Fibromyalgia symptom, to my friend who think I am a faker, lazy, attention seeking, or crazy, they scratch their heads. Of course Fibromyalgia still doesn’t exist I am the Fibromyalgia Psychic and can predict new symptoms or maybe just psycho. But one nasty, nasty, things these multitude of maladies in this “non-progressive” have in common is each time it knocks me off my socks. And each time it is harder to rebound. My kidneys have been losing functionality, again, a mystery. Almost 2 years ago I almost lost my life because my Kidney Specialist, more like Cognitively Challenged Special Needs, who had just seen, but never examined me two weeks before let a bladder infection become a kidney infection. On a sunny afternoon my daughter just happened to want to hang. She saved my life. Just an few hours into shopping with a hospital around the corner I lost total feeling of my body collapsed and was slurring my words. The Ambulance wanted to take me across town to a Cardiac Hospital, they didn’t have time. I was in and out. I was my usual I am the party self and they thought I might have intentionally tried to harm myself. Then I was accused of being an addict because all my medicines levels were off the Chart. Seriously, I am gonna get high on estrogen and blood pressure pills, too? Finally they realized I was drowning in my own sewage and overdosing myself. Because a Doctor checked only for blood instead of bacteria. All that to say two years into recovery on good days I have two hours energy. If I have to go out to the doctors or a family occasion, I will sleep for a day and a half to two after, people try to rouse me it’s near impossible. Because of kidney incident I am hyper sensitive to drugs. I can’t take any if I go out because I don’t know how even the smallest dose will affect me. The doctor tells me my trip to ICU will take 2 more years to recover. Before that I ate a healthy diet, was able to keep my house straight. My husband vacuumed, mopped, and cleaned bathrooms. I golfed 3 times a week and walked the course, shot a 92. We went when I could take breaks but I felt accomplished. Now if I shave my legs, do my hair, get dressed up, I need a break. My non-progressive non-existent syndrome that was non diagnosed in 1993 has made me a slug. I am tough. I had a fractured spine for two days and still helped my family move before my mother noticed my odd gait. I am a veteran. I can take the spasms, the IBS cramps, IC porcupine stings, no sleep, all that crap, even the Fibro goofies, but I want back my energy. I am a type A personality,creative,life of the party person stuck in limbo. And none of the Doctors could care, I am not depressed, I am angry. I am not invisible, I want to be heard. Thanks for letting me B!#CH FIT.
Wow, I can relate to a lot of that. I have rebounded considerably from my fibro, but I think kidney function and fluid control and “drowning in your own sewage” is part of the condition that messes up everything.
One of the earliest signs I ever had that something was wrong, 25 years ago, was excessive need to urinate regardless of whether I drank much or not. I was a fanatically fit cyclist. Eventually this unwanted loss of fluid made me prone to getting cramps. Refluidation only increased the urination. It was as if my body was desperately trying to flush something out and never succeeding.
The GP after getting a few basic tests done, told me there was nothing wrong with me. I was going down with fibro at that very time without knowing anything about it. It is almost as if the fibro was the way my body ended up coping when the urination did not succeed.
The urination became less of an issue over time but other things took over. Now, 25 years later as I have rebounded from fibro via a range of protocols (see my many other comments on this forum) I am experiencing episodes of excessive urination all over again. I am debilitated every time it happens, I suffer from symptoms of heat stroke and dehydration – and I almost certainly AM dehydrated at the time it is happening! Pounding heart, cramp twinges, etc All I can do is drink, drink, drink (and supplement) and urinate, urinate, urinate until it passes. This can last for 8 hours. Cooling my body is also very important, just like treating heat stroke. Then I feel great (relatively) again for days or even weeks.
Somewhere in all this, is the mystery of fibromyalgia. Body fluid dysfunction is heavily implicated. It is as if I have taken my body back through the phases of fibro to the point where the earliest problem I experienced is what I am now working through again.
For what it is worth, my improvements are due to the following among others: pacing and building up paced exercise daily; an enjoyable low stress occupation; low carb diet; Qi Gong massage; daily stretching exercises in a spa pool; megadoses of magnesium supplementation (I have constantly rediscovered that I am not yet taking “enough” magnesium). But the magnesium is not the “cause” of the fluid problems as far as I can tell; if I stop taking it I am definitely in big trouble with dehydration in no time. When I am having a urination episode, taking magnesium with the water I am drinking does help to mitigate the dehydration symptoms; but the urination itself persists until it decides to go away. I have no idea why.
I have fibromyalgia and Cfs and now possible sjogrens too. I had recovered from fatigue and pain but now fatigue is back. I also need magnesium daily and a low carb diet. I am hypoglycemic big time. So diet is critical.
Try being tested for Fabry’s Disease. This can affect the kidney’s and there is treatment.
Thanks Susan for responding to my rant/vent. It’s one I haven’t come across. My non flight/fight instinct with this I fear gets me in trouble. I guess the word is Frustration, but then aren’t we all, in between our success to adapt in our storm tossed lives balance and calm then comes another wave. Thankful for faith, or I WOULD be a total ex type A personality wreck.
You say “non flight/fight instinct”
Do you mean you don’t get the flight-fight reactions, or you do?
I think flight-fight reactions almost constantly in a chronic-stress job was what caused me to succumb to fibro. I thought I was immune because I was so fit and exercised so much.
It did not surprise me to read in the newspaper a few days ago, of some medical study that says that daily workouts (before AND after work) are NOT effective as a preventative to harm suffered in the course of sedentary work for hours every day. That is my own experience!
Hi Deborah,
You can research fabry’s disease by going to http://www.Fabry.org
I would advise anyone with FM symptoms to look at this site.
No Phil, it’s a family joke, my son even nicknamed me the Debinator. They say I have no flight syndrome. Except for sounds in the house late at, then the hubby and dog can handle it. He’s insured. The hubby not dog, but he, the dog doesn’t need it. Yes, stress can suck me in. I have learned to master my feelings on the outside, but doesn’t mean there is a real, storm inside. My family says when I get quiet be afraid. I, no matter, how I feel can put on a laugh, smile for someone else. I am boisterous, no matter. As the song goes, ” Smile through the pain,”
Thanks Phil, so sick as was writing this, didn’t see your reply. Thank God, don’t have Farby, but right I am dehydrated in am, in fact wake up and drink all night. Dehydration means extremely, dangerously low BP to me. But will try Magnesium. Thanks!
Would you include a link or reference for the Maes article that you referenced? I couldn’t find one. Thanks.
http://www.ncbi.nlm.nih.gov/pubmed/25779727
Just remember fatigue can be a PROTECTIVE response of the body – keeping you from damaging yourself further.
No point in fixing the fatigue if it just lets us overdo things – and make ourselves worse.
Fatigue can be a sensitive (though delayed – but you learn) indicator for pacing.
I need a good heart rate monitor that works on a wrist – anybody have recommendations? I don’t want to have to stop doing what I’m doing and push buttons – I want a continuous display.
Thanks!