Is this a crash?

[TiredSam]

I just thought pacing generally applies to physical exertion, but maybe I should consider applying it also to mental exertion (i.e. sitting in front of the computer).

Sitting is physical exertion. Before I had ME I used to stand in front of my computer for hours (I had a desk I could raise and lower, so I could alternately sit and stand, which was good for my back. I ended up standing nearly all of the time). After my ME started I ended up sitting in front of my computer all the time, but that got too tiring too. Now I lie on my sofa with a laptop. Changing from standing to sitting made a big difference, and now changing from sitting to lying is making a big difference too.

My symptoms are all brought on by physical activity, so if I'm feeling well and lying on my sofa I can keep going for a few hours mentally. But if I overdo it physically, which can be just sitting to long, either at my computer or at a table at a social gathering (one hour of that can be enough), then my symptoms include mental ones (headaches, brain fog, memory goes blank). That's just me, I know other people get symptoms from too much mental activity.

If I can I always lie down 2-3 hours after getting up in the morning for 30 minutes. If I don't, the mini-crash hits anyway just like yours, so I try to pre-empt it by lying down before it happens. 4 hours of computer work with breakfast would be too much for me in the morning, I lie down after 2-3 hours, whatever activities I've been doing, before the mini-crash hits, and I keep doing that throughout the day, so I usually lie down 3 times throughout the day, and save my heavier activities for later in the day when I seem to be fitter, and just do light stuff in the morning. I established that 2-3 hours is the right period for me by noting when my first mini-crash happens in the day and making my up-and-doing-stuff period a bit shorter than that.

I've noticed recently that I am often only sleeping 5-6 hours a night instead of 7-8, so I seem to be actually getting back the time I spend sleeping during the day (edit: should have said "resting" here, it's more like heavy dozing than sleeping, and the goal isn't to sleep during these rests), which makes it easier for me to make myself lie down during the day.

I'd suggest reducing your first morning session to 3 hours and then lie down for 30-60 minutes no matter how you feel, and see how that goes. For me lying down before the mini-crash comes is much better than keeping going until it arrives.

 

[justy]

I agree that there is no language to describe all of our experiences, but this is a common one for PWME (people with M.E). I would call a crash more like something brought on by too much activity (for me) that then leads to days or even weeks of recovery - as someone else said, very similar to relapses in autoimmune conditions. But every day I have mini 'episodes' like this where I have simply overdone it and need to stop completely what I am doing.

The threshold for overdoing it is different according to your level of dis/ability, and can certainly include mental and physical activity, as well as emotional activity and even talking. So for me I can start to feel really unwell if I talk and laugh too much, or get angry and cry, or stay on the computer for too long (for me this is more like 10 -15 minutes although does fluctuate).

This may be one of the reasons you cant pinpoint exactly your PEM kicking in etc as you have heard others on here do - because you are exceeding your energy envelope all the time so never reaching a recognisable baseline.

I would suggest that what you need to be doing is cutting up your mental activity into smaller chunks and resting more frequently so that you don't allow yourself to get into this state in the first place. Constantly pushing past your energy limits will only lead to more problems in the end, and I suggest you also make sure you are adequately hydrated, adequately and appropriately eating so that you can rule those out as causes.

 

[Valentijn]

OK, so what is it then? I've had this for years and found no explanation so far.

Orthostatic intolerance and/or more generic exercise intolerance.

 

[SOC]

@TiredSam.
What you described above also sounds like OI. Are you being treated for OI at all? If not, it might be worth looking into. It's not going to cure ME, but reducing that particular set of symptoms might increase your functionality.

 

[TiredSam]

@TiredSam.
What you described above also sounds like OI. Are you being treated for OI at all? If not, it might be worth looking into. It's not going to cure ME, but reducing that particular set of symptoms might increase your functionality.

Thanks for that. OI isn't something I've looked into specifically. I've always had a very low pulse and gone a bit dizzy/dopey if I stand up too quickly, but have thought of it as just one of those things that lots of people have and not serious enough to look into medically. I put a lot of salt on my food these days.

Just after my ME started, for a few months last summer, I would feel terrible, then lie on my sofa and immediately feel completely fine. So I'd watch an episode of something for an hour, then stand up again and immediately feel completely terrible and have to lie down and watch the next episode, feeling completely fine again. This went on all summer, I got through all seasons of Breaking Bad and established a reputation for myself of a lazy good-for-nothing. I've since learnt that lying down in silence with my eyes shut buys me at least another 2-3 hours of feeling ok again on a good day.

I have an appointment at an immunology clinic specialising in CFS next May (long waiting list!), so I was hoping they'd bring up OI then, if they don't I will, maybe they'll put me on a tilt table. I wasn't aware that there was any treatment for OI except eating salt and wearing tight socks, but I haven't really looked into it. Is there much that can be done about it?

 

[SOC]

I wasn't aware that there was any treatment for OI except eating salt and wearing tight socks, but I haven't really looked into it. Is there much that can be done about it?

There are a variety of treatments depending on the type of OI you have. Be aware that a tilt table test does not necessarily pick up all types at all degrees.

PWME often have low blood volume, so medications that help with that work for quite a few PWME. Florinef and Desmopressin fall in that category, I believe. I've heard of Midodrine working well for some PWME. I know there are other medications that help, especially with the less common forms of OI, but they're slipping my mind atm. Perhaps @Valentijn or @Sushi can help us out here.

If you have low blood volume, there are management techniques that can help some, but only in limited way without a medication to keep your body from simply excreting all the extra fluid you take in.

Based on what I've been hearing, PWME with low blood volume are advised to drink 3-4 liters of fluid daily, one or two of which should be a well-balanced electrolyte drink like ElectroMix (there are others, of course). Fluid-loading can help by reducing the impact of overnight dehydration. You accomplish this by drinking 500-750 ml of water right at bedtime and as soon as you wake up in the morning, then wait half an hour before going about your day so fluid has time to get into your blood. The bedtime dosing may be more trouble than it's worth without meds if the fluid just goes straight through you and forces you to get up in the night to urinate.

Potassium is as important, if not more so, than sodium in maintaining blood volume and electrolyte balance, so you might want to consider increasing potassium in addition to the extra salt in your food.

I've been told that when increasing fluid intake, ice water works better than room-temperature water (I have no idea why), and that regular fluid boluses work better than sipping all day. I don't know if this is universally true, but it does seem to be true for me.

Another behavioral thing that might help a bit is to keep your feet elevated as much as possible. For example, work with your feet up on your desk when you can, and propped up on a chair when you can't. Sit in a recliner or use a footstool instead of sitting in an upright chair with your feet on the floor.

You can probably get a lot more information by searching PR for orthostatic intolerance or the names of OI medications. There has been a lot of discussion about OI over the years.

 

[TiredSam]

Thanks very much for that

 

[SOC]

Thanks very much for that

I forgot to say -- you might be able to get a cooperative local doc to test for vasopressin and/or aldosterone deficiency which would justify replacement therapy (desmopressin and florinef, respectively). Or the doctor might just trial the meds to see if they help rather than run lab tests. This assumes, of course, that you can find a doctor that believes you have actual physical symptoms rather than assuming you are making it all up.

 

[ukxmrv]

After my morning activies, I often end up lying on the couch, unable to think of anything (or to do anything, even light reading), with my eyes closed but not really sleeping, trying to warm my icy-cold hands by placing them between my thighs. This usually lasts between 30 and 60 minutes.

Is this what you guys call a crash in ME lingo?

What happens if you have no morning activities?

How do you feel when you first wake up?

 

[SOC]

I just thought pacing generally applies to physical exertion, but maybe I should consider applying it also to mental exertion (i.e. sitting in front of the computer).

IIRC, the brain uses more energy than any other organ (or muscle) so mental exertion is very likely to cause problems if you have ME (as opposed to pure OI only). Many, if not most, PWME have problems with mental exertion and/or mental fatigueability. Pacing of mental activities is just as important as pacing of physical activities if energy limitations exist.

OTOH, if what you're having is primarily an OI problem, getting the OI treated might eliminate or reduce the need for aggressive pacing of mental activities since the problem would be more a blood flow issue than an energy production issue.

 

[Sushi]

I've heard of Midodrine working well for some PWME. I know there are other medications that help, especially with the less common forms of OI, but they're slipping my mind atm. Perhaps @Valentijn or @Sushi can help us out here.

If you have low norepinephrine in the synapses, meds like strattera can help. It took away OI entirely for me. It is a norep reuptake inhibitor. But not so many are low in norep.

 

[Effi]

ice water works better than room-temperature water (I have no idea why)

Our bodies process cold water more slowly than warmer water - this is why people in hot climates tend to drink hot beverages to stay hydrated, as opposed to icy cold beverages. My guess is the slower the uptake, the longer it stays in the body, so the better it works for increasing blood volume. Drinking icy cold water takes more energy from our bodies to process though, so I'm not sure if that part might be counterproductive for PWME for energy reasons... I never drink anything cold cause it slows down my already sluggish digestion. But from a blood volume point of view it does make a lot of sense.

 

[Hip]

The fact you have to lay with eyes shut shows a brain overload state, you've over done it (you are shutting your eyes trying to tune out stimuli I suppose and the issue is that rather then PEM). You need to change how you are doing things and stop and rest your brain before you get like this (I often alternate between doing brain stuff, doing non thinking physical stuff and doing resting to avoid issues)

I agree with taniaaust1's view that what @bananabas is experiencing may be brain information overload; it's not really PEM.

I get in a similar overload state almost every day after several hours of reading research, reading/answering Phoenix Rising posts, reading/answering emails, etc on the computer. For me this state is like a "numbness of the brain," in which after around 4 hours of reading, writing and information processing, my brain sort of seizes up a bit, and my ability to think clearly and productively vanishes.

This is not PEM, but I think it is an indication that an hour or two's break from information processing activity is needed. For me, a break may involve a short nap, a nice hot bath, or watching an hour or two of TV.

I find myself mentally rejuvenated after such break, and I can then continue working. The brain numbness slowly clears up during the break.

This brain numbness is not dissimilar to what a healthy person may experience at the end of a long day of hard work involving lots of information processing, or dealing with fact and figures. At the end of the day, that healthy person may become a little mentally fatigued, such that his ability to think and function starts waning. This is a well-recognized phenomenon in the airline industry, and even for long-distance lorry drivers.

So for me this brain numbness is a bit like what a healthy person may experience, but it is much more exaggerated, and I experience it kicking in after say 4 hours work, rather than after a long day's work.

If I have a two-hour break (and preferably a nap) after my first 4 hour working shift of the day, I can then manage a second shift of 4 hours on the same day. By "work," I just mean writing a post like this, or reading some info or research online.

 

[bananabas]

It could also be a sign of orthostatic intolerance. Could you try having your feet raised whilst using your computer? Or buy a laptop!

I do have a laptop, I just don't see the mechanics of using it with my feet raised. How do you suggest doing that in practice?

A useful investigation would be to check your BP and HR when you feel rotten, but before you lie down, after you've been lying down for a while, and once again after you feel better. You might find this PR article on orthostatic intolerance helpful, especially the section on diagnosis. Dysautonomia can be much more than just OI, and OI can be much more than POTS, although few doctors understand this. It's a specialist field that many doctors think they know more about than they do.

In my understanding, dysautonomia can be anything affecting the autonomic nervous system, which regulates things like the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. OI is the development of symptoms when standing upright which are relieved when reclining and POTS is a particular case of this where the symptom is an abnormally large increase in heart rate when standing. The tilt table test seems to be the golden standard for diagnosis.

hypoglycaemia can be tricky to pick up if you don't have it at the very time you have a blood test. A person can be quite severely hypoglycemic at some times but not at others . eg after eating breakfast if a person has an insulin issue it can cause the insulin to spike up too high and then cause the glucose to crash into a hypoglycaemia state. 2hr glucose tolerance test with the insulin results included came pick up problems such as this with insulin/glucose. Hypoglycemia is more common in ME.

I will try to schedule a glucose tolerance test, is there an official name for it?

Be aware that if you have low blood volume, mornings can be worst time to be doing stuff as one can be still trying to get the body rehydrated from overnight. Sometimes it can pay to put off activities till afternoon if this is your issue.

I do feel particularly bad in the mornings. Is there a dignostic test for low effective blood volume?

 

[bananabas]

There are a variety of treatments depending on the type of OI you have. Be aware that a tilt table test does not necessarily pick up all types at all degrees.

The article you linked to only seems to mention the tilt table test for diagnosis. Are there other tests as well?

What happens if you have no morning activities?

Depends what you mean by "no activities". Staying in bed till noon?

How do you feel when you first wake up?

I usually feel like I climbed up a mountain in my sleep. Exhausted, with dry mouth and dry throat and quite a bit of nausea usually.

OTOH, if what you're having is primarily an OI problem, getting the OI treated might eliminate or reduce the need for aggressive pacing of mental activities since the problem would be more a blood flow issue than an energy production issue.

Is low blood volume a symptom of OI? I'm having trouble connecting the two.

To summarize the discussion so far, it seems I have to discriminate between my mini-crash being caused by 1) low mental energy due to ME, 2) not enough blood flowing to the brain (due to dysautonomia) or 3) sensory overload, due to ME (as @Hip is suggesting).

 

[SOC]

The article you linked to only seems to mention the tilt table test for diagnosis. Are there other tests as well?

I don't know. I haven't had any, but I think there are. Perhaps another PR member can chime in here. My doctors have just treated based on symptoms -- if the treatment works than you probably have the condition. Not very scientific, but reasonably effective and cheaper than a lot of tests.

I usually feel like I climbed up a mountain in my sleep. Exhausted, with dry mouth and dry throat and quite a bit of nausea usually.

That sounds very much like low blood volume as a result of aldosterone or vasopressin deficiency. You dehydrate overnight because your body is taking too much water out of your blood and you're not drinking to make up for it because you're asleep. You wake up very dehydrated and with low BP so you feel like crap. It takes hours to get your blood volume up, but even then it's probably not normal.

Low pulse pressure is one indicator (not a definite test, just an indicator) of low blood volume. You could check your PP first thing in the morning and see if it's normal (~40) or low (<30 or 35).

Is low blood volume a symptom of OI? I'm having trouble connecting the two.

It's more like a cause of OI. It's one form of dysautomia, I suppose. If your blood volume is low then you have difficulty maintaining blood flow, especially to the brain and so you have OI.

To summarize the discussion so far, it seems I have to discriminate between my mini-crash being caused by 1) low mental energy due to ME, 2) not enough blood flowing to the brain (due to dysautonomia) or 3) sensory overload, due to ME (as @Hip is suggesting).

Sounds about right. It could be any one of the above or any combination of the three. Many PWME have all three problems.

 

[SOC]

I do have a laptop, I just don't see the mechanics of using it with my feet raised. How do you suggest doing that in practice?

It's a laptop. Put it on top of your lap.

I put my feet up in a recliner or on a footstool and put the laptop on my lap... or more specifically I rest it on my thighs at an comfortable distance for typing. Very easy, I'm doing it right now.

 

[Sushi]

It's a laptop. Put it on top of your lap.

Or, for me, having my laptop right on my lap gives me some kind of symptoms, so I put the laptop on a wooden tray--actually one like this so that I can use it with or without legs.

 

[ahimsa]

It's a laptop. Put it on top of your lap.

I put my feet up in a recliner or on a footstool and put the laptop on my lap... or more specifically I rest it on my thighs at an comfortable distance for typing. Very easy, I'm doing it right now.

I haven't been reading this whole thread but I also use my laptop while in a recliner (inexpensive La-Z-Boy) with my feet up. There's even room for me to shift around a bit. Sometimes my legs are extended and other times I cross my legs.

One thing that helps is a comfortable lap desk to protect your body from the heat generated by the computer. The one that I use is from Ikea - plastic top, soft "bean bag" filling underside - http://www.ikea.com/us/en/catalog/products/10278243/

And here's a link with some other options:

http://mashable.com/2010/11/16/best-lap-desks/

PS. Even when using the computer in a relatively comfortable position it does take energy (mental energy, arms used for typing, etc.). So it's still best for me to do it in spurts with lots of rests.

 

[Valentijn]

I do have a laptop, I just don't see the mechanics of using it with my feet raised. How do you suggest doing that in practice?

I sit cross-legged on the couch or on my bed. The rear of the base of the laptop (where it hinges with the screen) rests on the bed/couch while the front of the laptop, below the keyboard, rests on my legs. Sometimes I sit with one leg sticking out, instead of having both legs crossed.

That way my forearms are resting on my legs and the laptop, and it's fewer muscles getting worn out.