Doctors talk about “fatigue” like it’s a single entity and it is listed as a symptom in dozens of diseases and conditions like we all are experiencing the same problem, when we most definitely are not. It’s a bit like headaches. You can get tension headaches, concussion headaches, hangover headaches, seizure headaches, migraines and hormone headaches to name but a few, each with different causes and characteristics and needing different treatments. Yet for some reason fatigue is treated like it’s the same for everyone regardless of cause, when it actually differs widely and needs various management and coping strategies.
Fatigue is a symptom of 4 of my diseases and conditions (menopause isn’t a disease though it sodding well feels like one some days!) so I thought I’d have a go at explaining how it differs for me and how I manage each type.
The term “fatigue” is so inappropriate when trying to explain this M.E. related symptom that I hestitate to use it, but so far I haven’t been able to think of a better word so it will have to do. M.E. fatigue is the easiest for me to recognize. It is totally unlike the normal “tired” or “exhausted” that everyone feels and much more like the fatigue you get when you’re poorly. My body feels poisoned and ill, a bit like the feeling you get just before you vomit. That weak, clammy feeling where the blood drains from your face, you are green to the gills, your legs buckle from under you and you end up lying on the bathroom floor groaning, unable to move or think as the weakness and sickness consumes every ounce of your being. Only it’s like that 24/7. And it’s not a fatigue that you can push through, at least not for any length of time. I just hit a brick wall and it is absolutely impossible to carry on. If I try I either collapse, faint, have a seizure and/or end up puking. Depending how severe your M.E. is, this brick wall can come about after walking to the shop and back, talking on the phone for 15 minutes, taking a shower or simply sitting upright to eat a meal. The fatigue doesn’t just affect the muscles, it also affects the brain which feels like it’s permanently stuffed with cotton wool. Any act of thinking, eg. writing a shopping list, reading a book or making a decision about what to eat for dinner, robs the brain of energy and makes it even more fuzzy to the point where it can be physically painful and thought becomes impossible.
It is not a fatigue which responds to rest. You can sleep for 20 hours and wake still feeling utterly and absolutely wiped out. I have felt completely wiped for over two decades and not for a single second of that time have I ever feel well, rested or energized, either mentally or physically.
The fact that M.E. was re-branded Chronic Fatigue Syndrome is an absolute travesty. M.E. has nothing to do with fatigue, at least not the fatigue that healthy people recognize. The word “malaise” is much more appropriate, though I still think we need to invent a word which describes the poisoned, weak, collapse which epitomizes M.E.. I even take issue with “post-exertional malaise” which makes it sound like you only get symptoms after activity, which definitely isn’t the case. I have felt weak, poisoned and ill every second of the last 23 years. Yes activity makes it worse, but the absence of activity doesn’t mean the absence of symptoms – if only! When I see people online query if they have M.E. because they are chronically tired I want to scream. If being fatigued was the only diagnostic criteria for having M.E. half the world’s population would have it.
The only way to manage the fatigue of M.E. is to lie down. Sitting won’t cut it. At the severe end of the spectrum you have to lie down every second of the day and at the more mild end of the spectrum you have to lie down for portions of the day, but if you can remain upright for the entire day I’d query whether you have M.E. at all. Having “rested” you don’t feel recovered, you just feel like you’re not dying or about to pass out, which is a bonus.
The fatigue associated with my hEDS (and I can only speak for myself) is a totally different kettle of fish. It’s more akin to normal, if exaggerated, fatigue. Imagine you’ve just climbed to the top of Ben Nevis and back. Everything is hurting and aching, your muscles feel strained and overworked, stiffness is setting in and you’re desperate to collapse into a warm bath or onto a soft couch. That’s what my hEDS feels like, only every second of every day. There is no ill feeling or feeling of weakness, seizure or collapse, and I can push through the fatigue if I really need to although it does get to a point where the pain is so bad I have to stop whatever I’m doing.
Rest does help and in particular the avoidance of activity. It doesn’t make the pain, aching and stiffness go but it becomes less severe.
Some people with EDS complain of brain fog but this isn’t part of the diagnostic criteria. As I already have brain fog from my M.E. I have no idea if I’d have this with EDS or not if I didn’t have M.E. too. I do think that some people with EDS may also have M.E. and go undiagnosed and that some people have brain fog due to POTS or some other type of dysautonomia rather than EDS per se (POTS & dysautonomia are common secondary symptoms of both M.E. and EDS).
Managing this type of fatigue requires planning and pacing, including switching to different kinds of activities and not doing anything repetitive for long periods of time. I find it the most simple to treat of all my conditions as it does respond to rest and careful pacing, making the fatigue easier to manage although obviously not cure.
Mast Cell Activation Disorder
Again I can only speak from my own experience but the only time I have fatigue associated with my MCAD is when I’ve had an anaphylactic event. The fatigue which follows makes me very weak and drained and can sometimes make me sleepy while other times not. I absolutely have to lie down, often for several hours, and it can be days or even weeks (depending on the severity of the anaphylaxis) before I return to some semblance of normality.
I don’t really get brain fatigue with MCAD. After an anaphylactic event I feel totally spaced out and my brain feels kind’ve battered and bruised, but not foggy like with M.E. It’s hard to tell to be honest, because having anaphylaxis completely buggers my M.E. up and causes a flare which can last for months, so then it becomes impossible to tell which symptom has been triggered by which disease.
The only way of managing this fatigue is to rest in bed until it passes. Antihistamines seem to have zero effect.
I am in year 6 of peri-menopause. For the first 5 years I didn’t notice any significant fatigue but this year I’ve been poleaxed by it. It came on out of the blue in the new year and literally overnight I felt like I’d been coshed over the head. Having researched this online it is fairly common and the name given to this symptom of menopause is “crashing fatigue”.
It’s different again to the fatigue mentioned above and feels much more like I’ve been sedated. My eyelids feel like cement and are permanently down to my kneecaps, my body feels relaxed and heavy and I just want to sleep, sleep and sleep some more. However, having slept for 9 hours I wake feeling no better and could cheerfully go back to sleep only 2 hours after getting up. And then again in the afternoon. Having slept half the day away, however, I still can’t keep my eyes open past 9pm at night.
This fatigue definitely affects my brain not to mention my memory! But it’s not so much foggy as sleepy and confused, a bit like I’ve been woken from a deep sleep at 3am.
I haven’t found anything which alleviates my menopause fatigue and can only hope it settles once I’ve gone through The Change and come out the other side.
Having written this blog post I’ve realized how difficult fatigue is to explain and how easily it can be misunderstood by healthy people who have only ever experienced normal tiredness. I’ve never been asked by medical staff to explain my fatigue, how it feels or how I manage it – they just hear the F word and assume it’s akin to being tired all the time, when it’s anything but. I’ve thought for a lonnnng time that we need a new word to explain the malaise-like weakness experienced by M.E. patients, so that it can be differentiated from other types of “chronic fatigue” and more importantly from normal fatigue, so if you have any suggestions let me know!