Are there many conditions that have the very severe exhaustion where someone can barely move that can be seen in ME/CFS? Can it help with diagnosis?

In some ways this is a very basic question and maybe I should know the answer:

I was talking with an enquirer to an ME/CFS group I volunteer with yesterday who wasn’t sure whether they had ME/CFS and they mentioned that the exhaustion can get so bad that they can barely move an inch, that if the house went on fire, they’re not sure they could move when they dip this low (it’s not a permanent state).

I was just wondering whether that should be able to help with diagnosis? I know fatigue is common in lots of conditions but does it get this bad in many? Is there research that looks at it?

 

I’d like to know the answer.

I often go by “how much money would you force yourself out of bed and jogging to x for”

Some days I’d give it a go for £20k, others I would need to be offered £1million

 

I'm pretty sure it could get this bad in an abundance of conditions if those are left untreated, typically they might come with some other symptoms as well (but so does ME/CFS). Luckily those conditions are often treated and research looking at "how bad could this get if we don't treat this" then seems unethical to me.

Which would lead to my first conclusion being that the first thing that would help with diagnosis would be to see a doctor (or several), even if that is just to rule out such conditions. Some conditions (if left untreated) that would come to mind would be: Chronic infection or chronic inflammation, HIV/AIDS (the later stage), Graves disease (or other causes of hyperthyroidism), Hashimoto's (or other causes of Hypothyroidism), certain cancers… That is not to say any of those things are remotely likely but I would think that fatigue alone, even if it is unimaginable bad cannot itself be used to diagnose basically anything and I don't think any doctor would go that down path immediately without doing any testing or examination first.

 

Yeah, I used to be sure that something serious had been missed based on me having red flags in the blood etc done over the years but absolutely no real investigations ever done.

But I'd get the crap from people around me of 'don't wish that on yourself'

Yet these days as I'm going through the list as a I finally have a slightly better GP, but am a lot more ill I find myself thinking of the things it might be and realising it is pointless because apart from the things you thing I'd probably be dead by now unless it was some unusual slow version, there is the common sense part of me taking those same contenders and thinking it's not that 'thing that apparently is too serious for it to be me' because they only end up flat on their back for a few days every so often vs it being the default state with the odd 'good' hour in a week.

It's actually a pretty shocking illness, but I think only because of the abuse of invalidation so you get iller in the moderate and maybe mild stages.

 

I had a different analogy I use to use (before I got even more ill) but yes, particularly when I was having to work I used to know I could sleep through things that no other human being would sleep through, pretty much at any point outside of work - I won't use the example I used but people would reply as if I was so dumb I didn't realise the human body reaction to that, rather than them being the ones who were supposed to realise it was an example of their time to learn and educate themselves in soemthing they didn't know. Hey ho.

I do have a few other things on top of my ME which might contribute, happy to give more detail by PM if it is of use just drop me a message. But I'd be surprised if it's not 'just' the ME if you are pushing through hard enough when you have to.

 

I have this too. I live in a high-rise and I pray the fire alarm doesn't go off when I'm feeling this way. The elevators shut off and I would have to take the stairs. Then I have periods when I can go power walking 2-3x/week. Who knows.

 

Yes when I was mild and still working, the only person who understood/had the same level of fatigue had HIV and wasn’t getting the right combination of drugs. After a lot of changes to find the right ones, he’s lived a near enough normal life and had a successful demanding career.

 

Yes, there are a range of conditions that will produce 'fatigue' this severe. Not many of them give intermittent symptoms this severe, but some can. It isn't really covered by specific research. It is just a reality of clinical documentation.

In general, isolated question about diagnosis like this tend to have no simple answer. The decision making process used in diagnosis is way more complicated than we think. It involves integrating a whole range of bits of information. The traditional history-taking process elicits the relevant information in most cases using about a hundred questions but these are often just starting points.

 

I can feel this exhausted with my muscular dystrophy.