PEM - what's caused it this time?

[melc23]

Can anyone advise me about general management of my ME and pacing so I can avoid crashes?

Almost every week I end up crashing at some point, but often find it hard to identify what has caused it. Sometimes I get so fed up with trying to figure it out and feeling bad because I'm wondering if I've unintentionally overdone it again that I just conclude that it's just the illness and not anything I've done. Sends my head in knots sometimes.

This week I've tried to pace myself - I'm a mum so always have to do school run and keep things going between 3:30 and 7pm. But during the day I've been resting lots and walking less than I normally do. I've tried to keep my activities to no longer than an hour at a time - computer time, adult colouring etc.

On Wednesday my eldest son had a guitar exam. I managed to arrange a lift for us from a friend as I knew driving myself would have been too much. But saying that it did mean I had to spend the morning being sociable to my kind friend who helped. Then yesterday he played guitar in assembly which I went to for an hour.

The only other thing this week is that I've spent an hour writing the last two mornings. I used to blog and have wanted to restart it to give me a feeling of purpose again.

So today I'm feeling fluey with PEM. I'm wondering have I done too much, was it guitar exam Wednesday and assembly yesterday, or is it due to starting to write again and trying to use my brain... Or just a combination of everything?

I realise it might be hard for folks to tell but I just don't feel like I'm really getting to grips with pacing and wondered if anyone could speak into my situation? Sorry for the long post - if anyone can help I'd be most grateful. Thanks
Mel

 

[PNR2008]

I have a hard time keeping my activities down especially when I'm feeling better. For me I could be in excruciating pain for days feeling like death is eminent and get some energy to shop, repair things, exercise the dog, make food.

The only thing that may help me is to measure my heart rate but finding the right number is a challenge.

Still do you remember cleaning a whole room until done and feeling accomplished? Now it's dishes here, lamp there, sink there and how difficult it is to be presentable in public. Take care.

 

[Seven7]

Buy yourself a heart rate monitor is the best to know when you are overdoing. Also, is not about resting a lot, but doing it in batches. Example: I go anaerobic every 5 min so I have to supposedly (I am a mom also) to rest every 5, so activity 5 and rest 5 but dinner time is a killer for me. There is no way to do it under 5min and resting in between, I have a high chair now in the kitchen.

 

[melc23]

I have got a hr monitor and do tend to find that my HR is quite high. I find that it's often high first thing in the morning and in the afternoons. (I often have quite a lot of salt in my lunch - don't know if that's why its high in the afternoons) So it can be quite hard to keep it down say when I'm getting ready in the mornings.

I also try and walk to do the school run in the morning and then collect them in the car (I was walking both runs but realised it was too much) and so it can be quite hard to keep it down then as well.

I have got a high chair on castors in the kitchen now too which has helped a lot.

It's trying to get to the bottom of what is causing me to crash as of course trying to stay below AT is one thing but that doesn't account for mental energy used or for example when we socialise which can be particularly exhausting.

As I say I find it really hard to directly work out the cause and effect between my activity and my symptoms. I keep an activity and symptom diary as well but still get situations like today where I'm confused as to what has caused the crash.

 

[Valentijn]

@melc23 - Hour-long chunks of activities is pretty huge for most activities. Scaling that back and keeping your heart rate lower could both help a lot.

Walking for more than a minute or two can be especially problematic. It might help to drive to the school both times instead of trying to walk one way, even if the school is close by.

Showers are also a notorious trigger for both crashes and Orthostatic Intolerance. Using a shower chair and avoiding hot water can help quite a lot.

Is it possible to avoid some of the morning rush by preparing a bit the previous day or evening? Such as by any lunch-making being part of your daily paced activity, or getting the table set for breakfast before bedtime, after you've had some time to recover from dinner.

Sitting with at least one leg elevated, such as on another chair or crossed over your other leg, can help as well, both with keeping heart rate lower and with avoiding consequent crashes. That can be awkward in public settings, if seats are closely packed, etc, but people are usually very understanding if you just explain that you have chronically low blood pressure.

 

[dancer]

Another thing that complicates my efforts to avoid PEM or control it, is that sometimes my health takes a steep downturn for no discernible reason. I've come to see this illness having a life/cycle of its own. It's still worthwhile trying to pace and not trigger EXTRA downturns...but I've needed to accept that no matter how carefully I pace, I can still have crashes where all symptoms getting worse.

 

[minkeygirl]

I do something for 5-10 minutes then rest for an hour. I always pay if I push it. As others said, resting for an hour after doing something for 2 hours isn't the best.

 

[AaroninOregon]

I have a hard time keeping my activities down especially when I'm feeling better. For me I could be in excruciating pain for days feeling like death is eminent and get some energy to shop, repair things, exercise the dog, make food.

The only thing that may help me is to measure my heart rate but finding the right number is a challenge.

Still do you remember cleaning a whole room until done and feeling accomplished? Now it's dishes here, lamp there, sink there and how difficult it is to be presentable in public. Take care.

I try to do the same thing regarding heart rate...I aim for keeping it below 106, which can be very challenging. If it reaches 120 I take a break and lie down.

 

[Mij]

Mornings are very difficult. I feel almost normal after 6pm in general. The other day I walked over to the bank and bakery 3 blocks away before noon thinking I felt well enough to go out- my heart started racing, my chest had pressure/shortness of breath and I almost collapsed.

In the evenings i can power walk for an hour and feel good after, this of course is because I prepare myself during the day by not overdoing and getting adequate rest between activities. if i can't do anything- I do nothing!

 

[AaroninOregon]

Mornings are very difficult. I feel almost normal after 6pm in general. The other day I walked over to the bank and bakery 3 blocks away before noon thinking I felt well enough to go out- my heart started racing, my chest had pressure/shortness of breath and I almost collapsed.

In the evenings i can power walk for an hour and feel good after, this of course is because I prepare myself during the day by not overdoing and getting adequate rest between activities. if i can't do anything- I do nothing!

Intetesting...I also typically feel better after 6pm and have no idea why. :/

 

[Mij]

Intetesting...I also typically feel better after 6pm and have no idea why. :/

could be high cortisol in the morning or OI as Val pointed out. I've never been tested for OI but I suspect this is the case. This can be treated

 

[AaroninOregon]

could be high cortisol in the morning or OI as Val pointed out. I've never been tested for OI but I suspect this is the case. This can be treated

I did a saliva cortisol/DHEA test last October and my cortisol level was really high until about 5pm and my DHEA-S was so high that it was off the graph.

I do have some OI (not severe) and it also tends to get better in the evening as well.

Thanks @Mij for the input. I' ll discuss OI with my doc at my next appointment.

 

[TiredSam]

Everyone's different of course, but if it was me the two most likely suspects would be walking and socialising.

I'm very functional and still working, but to do that I don't walk at all if it's not neccesary. If I have free time in the morning the last thing I would do with it is go for a walk, that really costs me energy and could make me crash. Avoiding walks (and I used to walk every weekend, at least just round the village) gives me the energy to sit in front of my computer getting my work done for as long as I want. I always worry when I hear that an ME patient has voluntarily been for a walk, but that's just me because walking is right on my borderline, not walking allows me to get so many less physically demanding tasks done.

Socialising is another activity that is very energy costly for me, even if I don't notice it at the time, so I have to strictly limit it by eg cutting people off on the phone after 20 minutes or sending them home if they're not showing any signs of going soon.

I also find that if I survive a week of work well, I really have to make sure I slow down at the end of it. Sometimes I reach Friday and I'm so pleased I got through the week with minimal symptoms that I think I can keep going at the weekend. The correct thing for me to do when the week is over is to make myself rest even if I feel fine, because pushing a little bit on Friday can be the last straw that when added to the cumulative efforts of the week makes me crash for 2 days. Even if I feel I've had a good week, the cumulative effect of what I've been doing could mean that I'm extremely close to crashing, so it's especially important to keep following my rules then.

This happened a couple of weeks ago when my wife phoned me from her work on Friday morning asking if I'd get the lunch ready, which was a small job. So I did, and while I was in the kitchen I thought I might as well take the bins out and empty the dishwasher. Total 30 mins. My limit is 20 minutes. There followed a 2-day crash where I was no use to anyone, it would have been better to say I can only help with the lunch if it will take less than 20 minutes. But I'd had a good week and thought I was probably up to it, and didn't want to say no. Big mistake.

If an activity can be done sitting down, I do it sitting down, even if I feel I can do it standing and standing doesn't cause me any problems in the moment, after 20 minutes it will, and my functionality will be reduced for quite a while (the rest of the day if I'm lucky) thereafter.

Instead of walking at the weekend or visiting a town where I'll have to walk around etc, I now look out for things we can do where I can sit down, eg theatre, cinema etc, in the summer there are open air events in the evening where I can sit down in nice weather that are very enjoyable and I can still do, making sure I don't drink or stay too late of course. Going to a son's performance at school would be in this category for me so not an obvious culprit for a crash.

If you're crashing every week maybe you're still functioning above your limits and need to redefine them further. First step for me from your description would be to reduce your activity limit from one hour to maybe 45 minutes or half an hour and see how that goes, and to add pre-emptive resting if you're not doing it already.

Pre-emptive resting for me means every 2.5 hours I lie down for 30 minutes, eyes closed in silence. So that's 3 times a day. Obviously as I'm still working that's not possible every day or even for a few days on the run, but when I can, I do it. It can seem a little strange to get up at say 07:00 and send yourself back to bed at 09:30, especially if you feel fine and are just getting going for the day and don't think you've done much yet, but that's my routine and when a busy stressful day comes up when I can't rest, I suspect I often get through it without crashing because a couple of days before and after I strictly rested when I could.

If you try this and it works for you, it gets easier to make it part of your routine as you notice what a positive difference it makes when you do it, and how much you go back to how things were when you don't. Of course every 2.5 hours for half an hour is just what works for me, you'll have to find what suits you. I started with one rest in the morning and one in the afternoon when I could, noticed that it helped, but that I still started shutting down after 2.5 hours so moved my rests to then.

I know everyone's different and has different limits, I hope my experience helps you. It sounds like you have a similar level of functionality to mine so I thought I'd let you know how I manage things. If I stick to my rules I can go for long periods without crashing. But I have to stick to them, and remember to stick to them even after things have been going well for a few days (which is the difficult part), or it's back to square one. I've stopped even thinking about expanding my energy envelope over time - if I can just keep going like this until a cure comes out of Norway in 3-5 years then I'm one of the very lucky ones.

 

[geraldt52]

"Socializing" = my absolute worst trigger for PEM...and the thing that people are least understanding of. The common reaction seems to be that anybody can sit and talk for a bit. Well, I can't, and I no longer pretend that I can.

 

[Battery Muncher]

Socialising is my one surefire way to crash. So energy intensive.

The only way I can function is by avoiding prolonged social interaction.

 

[AaroninOregon]

I have to agree with the above that socializing is a sure fire trigger.

Of course, my family/ friends think that because I am ill they need to come visit me more often than normal...ugh.

 

[butterfly7]

All very interesting, thought i might have been going bonkers....

 

[rahmama]

This post really caught my eye as I find it's the most frustrating part of this condition. I hate not knowing when my body is going to give out on me. Makes it hard to plan anything. Fortunately I'm retired so I can rest when I need to but I don't. Not until I can't go on.
When I'm feeling good I tend to overdo physical things. When it's something I love to do, like gardening, I lose all sense of time and pay dearly for it later.
I keep trying to increase my stamina, but I'm beginning to suspect I have to change my thinking. It's all about pacing. Thank you TiredSam for your in depth reply. It was helpful for me. I think part of me is still in denial about having CFS.

Question: is having low pressure a symptom of CFS? I saw that mentioned in this thread, but have never seen it listed as a symptom. I have chronically low blood pressure which the doctors always congratulate me on.

 

[Valentijn]

Question: is having low pressure a symptom of CFS? I saw that mentioned in this thread, but have never seen it listed as a symptom. I have chronically low blood pressure which the doctors always congratulate me on.

Low blood pressure and low pulse pressure can contribute to or cause Orthostatic Intolerance. Most ME patients have some form of Orthostatic Intolerance, and it can be highly debilitating even without PEM. But it is also usually treatable by prescription medications, supplements, fluids, and/or electrolytes.

 

[butterfly7]

Im sure theres something spiritual going on with it all ,talk about slow one down to gods pace,if I have a negative thought my heart jumps and i experience a slowing of my central nervous system ,of cause it was just to remind me that I Love and Accept myself just the way I AM.....