Naive question - what to do during the crash?

[deuce]

Hi all. I'm not new to ME/CFS (26 years ago diagnosed) but I mostly had a routine for toughing out a crash with pretty much lying in bed for a couple of days and getting good sleep.

Now I'm in a new ME/CFS experience and I am hoping for a bit of wisdom if you could offer me.

By way of backstory: - I've mostly been in the mild category - eg maintaining jobs badly and a bit of a (small) social life. In reality I've constantly failed at desk jobs and on a few occasions being fired because I couldn't keep up. I've had terrible periods (a few days at a time, every fortnight or so) where I felt I couldn't get out of bed, sore throats etc, but I managed to eventually get going. Most of my life has been terrible brain fog but I've managed to live my life and work a bit I guess. Then a few months ago I went on an overseas trip. During the sunshine and my own time to rest and take my time, I managed to get into a great mental space. I managed to walk around the place, sometimes doing 5km walks per day and feeling really proud of myself. After a month of this I got back onto the 27 hour flight journey back to Australia, with time zone shifts and into a cold Australian winter climate ( I guess isn't that bad compared to other places on the globe). Then the unthinkable happened. I noticed I was feeling tired and shivery as soon I got back. Its now been 3 months and for a few hours per day I'm bed ridden, weak muscles, cold shivers, horrible fatigue, headaches, dizziness.

I must say that in 26 years of ME/CFS I have never got to this low point and it's worrying me since its been 3 months now of this crash with no change.

So my question is - for you guys whom have had a lot of crashes, what do you do to get out of them? What is the best things to undertake and adopt to try and get back to a baseline?

Thanks for your guidance. I'm really in a bit of a bind here.

 

[Moof]

So sorry to hear this, you must be very fed up. Travelling – specially air travel – wipes me out like nothing else, to the point that I haven't left the country since 1994! It's possible that the return journey to Australia, on top of a modest 'energy debt' that you'd built up during your trip, was enough to set you back.

I've had a similar level of illness to yours for 40+ years and a number of big relapses, and patience and being kind to myself is the only thing that's really worked. In the past I've ascribed gains I made towards the end of a relapse to this or that strategy, but in truth I don't really think they contributed very much. It was more that I recovered naturally by just sitting it out.

I hope someone can suggest something that helps, as waiting for an upturn is enormously frustrating...but if things are tight financially, I wouldn't go spending lots of money on supplements in the hope of hurrying things along. We've probably all done this at some point, and the main thing I've learned is that it's much more enjoyable to save that money till I'm feeling better, then spend it on treating myself!

When I finally accepted I had to give up work in 2013, I was really unwell for eight months, and not great for another five. It felt as if it would never end, and I honestly thought that I'd never make any further gains. It did come to an end, though, and I'm now better than I've been in decades. Keep positive, it will remit at some point.

 

[deuce]

Thank you Moof. I appreciate your support

I guess I also wondered whether doing nothing but staying in bed and having no stimulus for a few days is required or whether it's just pointless and simply waiting it out as you noted is the only answer?

 

[Moof]

It'd be well worth trying different things, as long as it won't make you worse because it's too energetic. I just try to tune in as well as I can to what my body's asking for, which varies quite a lot through the day. I wouldn't cut yourself off from stimuli for too long at a time, though, because you need keep an eye on your mental wellbeing. It's bad enough feeling so crap, without being bored witless and lonely as well!

I happen to like speech radio (I know it's not everyone's thing), and it's a good friend to me at these times. With the volume on low, there's enough stimulation to keep my mind occupied, without being as demanding as TV. Audio books tend to send me to sleep, but sometimes that's actually helpful, specially if I need a nap but it's noisy outside.

I also have an arrangement with a couple of understanding friends, whereby they'll come and visit, but I give them a signal when I need to bring the visit to an end. I do this because I tend to hit the wall suddenly and without warning when I'm really unwell, and trying to keep myself going out of politeness always sets me back.

Usually, the signal is just moving a little ceramic sculpture of a seal off the table. The friends know then that they need to leave straight away, and not fuss around for too long saying goodbye, wishing me better, or arranging to meet again. There's no awkwardness – I don't have to find a way of saying that I need to be on my own now, or wait for an appropriate moment in the conversation. Friends who'll do that are worth their weight in gold!

EDIT: I say 'friends', but they only visit one at a time. I definitely couldn't cope with several folk being there all at once!

 

[deuce]

Yes friends like this are worth their weight. It's a very good strategy you have adopted Moof. I am guessing you've had a lot of experience having such a long stretch on the ME journey.

 

[Moof]

Oooh, long and bitter experience! It was actually a 91-year-old great auntie with motor neurone disease who gave me the idea of making a signal. She couldn't speak during her last couple of months, and she got tired very quickly too, so she had to come up with a way of letting us know when she needed a break (my sis and I were annoying, fidgety teenagers at the time). You're allowed not to give a damn when you've made it to that age, so she'd just glare at the door!!

I hope you make some progress soon.

 

[percyval577]

I happen to like speech radio (I know it's not everyone's thing), and it's a good friend to me at these times. With the volume on low, there's enough stimulation to keep my mind occupied, without being as demanding as TV.

Funnily it´s just the other way round in my case. When Ive gotten worse Ive bought a tv, but had to stop listening radio.

I think of it as a kind of simultanous pacing. Listening to the radio ever made me focused (and calm ... it was so nice), which would somehow involve more nerves.

I tend to hit the wall suddenly and without warning

Me too, I have been running away.


Naive answere, @deuce : Since I am long-term-improving from a restricting-manganese-diet (say to the min of the RDA) I could/can? sometimes drink beer with a lot of hops to diminish pem at the next day (or in respect of physical exertion at the moment). But it has stopped now, and about 50% report positive resp negative experiences with alcohol (in generel). Naive further answere: Three weeks ago Ive read that fat und sugar diminsh acetylcholinesterase, and now it´s fine for me to eat my beloved fat only one time a day.

Oooh, long and bitter experience! It was actually a 91-year-old great auntie with motor neurone disease who gave me the idea of making a signal.

How clever. I felt older but havn´t been such adroit.

 

[Wishful]

Have you checked to make sure you didn't contract an infection of some sort? Maybe it's a true ME/CFS crash, but it could also be an infection that could be treated. I sure would hate to suffer in bed for months, getting worse, and then find out that I could have gotten a simple treatment and felt okay within days.

The supplements game is tricky. Some people do benefit from supplementing specific nutrients; I would say that most don't. I think supplements help because of their health claims of 'being good for you!' I think that for ME/CFS victims, supplemental nutrients can affect a biochemical pathway in a way that is good for you, even though the effect isn't covered in any understanding of how that nutrient normally benefits people. What it comes down to is that you have to decide how much money/effort you want to put into testing nutrients and herbal remedies to see if they benefit you.

Rest is also victim-specific. Some people benefit from it; others don't, at least not for recovering from ME/CFS crashes. Some might benefit from light activity, and some from pushing their limits. If rest seemed to be beneficial for baseline symptoms before the crash, that's probably good for a major crash. If some activities seemed to slow your recovery from lesser crashes before, avoid them.

I wish we did have general answers for these sorts of questions, but ME/CFS varies so much from victim to victim that we don't. If we could determine clear sub-groups, we might be able to provide some better answers. I'm still hoping that there's one specific malfunction that we all have in common, which would mean one treatment for all.

 

[deuce]

Thanks Wishful, I did go to my GP just for normal blood tests and nothing was found - although I accept that part of the problem with ME is that infections if they are relevant to ME don't show up in normal blood screening.

I take your point about having to follow what is "normal" for each person

 

[Wishful]

Nothing abnormal showed up in my GP's (and specialists') medical tests either (except for borderline elevated Tsh). I did get two blood tests done privately, and the cytokine profile showed half a dozen 'elevated' or "mildly elevated' cytokines, and my kynurenine/tryptophan ration was abnormally low. However, neither of those specialists could give a useful interpretation of those results. Maybe in a few decades an ME/CFS expert could review those test results and say 'Yes, those are consistent with ME/CFS', but not today.