Importance of rest and no-PEMs with treatment

[MartinK]

Hi all,
I saw many doctors in last 6 years in Europe - most here in Czech Republic, and primarily Lyme specialists. These days Im really disappointed, because Im after many, many treatments - priparily for Lyme and Viruses + immune boost. My CFS is crazy now, after frequent PEMs.
Status - mostly in bed last 3-4 months...

So I get to my question - how do you think it is essential not to have PEMs in treatment. Because - I want to tell - its really hard to not have PEM. I know - many of patients try to work - make PEMs and more PEMs... for me just sleep a little and next day - PEM.

I haven't met a doctor yet to explain importance of not to have PEM or exhaustions... All are focused on treatment, atbs... but not on these surrounding things.

Only stay in bed is bad I think - lymph does not flow, muscles disappear...

I was wondering if you saw someone dealing with the importance of avoiding PEM - and was more interested in how fatal it was in our treatments...

It is not possible to buy a nurse and do nothing :-/

Martin

 

[used_to_race]

for me just sleep a little and next day - PEM.

I think that if your symptoms appear to worsen the day after you take a nap (if I'm understanding you right) it's not PEM. I think you are really sick and I wish you had access to better treatment. I don't have an answer for you and my personal experience is so different from yours that I can't even really imagine what you've been going through. I'm really sorry Martin, and I hope there is a breakthrough soon so you can get treatment that works.

Unless I missed something big, I don't think we understand the mechanisms behind PEM yet, and it is likely a different combination of many factors for each individual. Some of us don't really even get PEM.

 

[MartinK]

@used_to_race Oh, sorry - my poor english skills :-/
I think, when I sleep less than need - I need sleep all night good for minimum 8-9 hours. And when I sleep only 6-5 hours - next day is really bad - PEM for 2 days...
Hope this is better explained Sorry!
And hope, now that makes sense!

Martin

 

[used_to_race]

@used_to_race Oh, sorry - my poor english skills :-/
I think, when I sleep less than need - I need sleep all night good for minimum 8-9 hours. And when I sleep only 6-5 hours - next day is really bad - PEM for 2 days...
Hope this is better explained Sorry!
And hope, now that makes sense!

No worries buddy, I'm sure your English is better than my ability to speak your native language. What are you doing during the day when you are getting less sleep? Maybe it's that causing the PEM rather than the poor sleep. Or are you saying that you sometimes incidentally can't fall asleep or whatever and that causes PEM? Either way I'd say that it's probably hard to do much for this unless you're getting major treatment, and there are issues of scientific knowledge and access to care standing in your way (and my way, and everyone else on here).

 

[Rufous McKinney]

I haven't met a doctor yet to explain importance of not to have PEM or exhaustions.

Currently I'm experimenting with: just Not Exerting and therefore not CRASHING. So I"ve managed to go four weeks without a crash, but that has required a very very low level of physical activity and zero appointments and zero contact with others out.

So pushing is MINUTE at the moment. Just sortta watching that. I don't like unable to walk more than a couple of 100 feet before I want to rather collapse. But I am gradually feeling a little better so the general trajectory is: positive. Avoid Crashes. Do no use Spoons you don't possess. Do not borrow tomorrows spoons.

Sorry: some people here use a Spoon Analogy. Its just that you have only a limited number of energy units (spoons); if you use them up, your toasted.

But several researchers have commented on this so I am trying to forgo Crash rather than: do something anyway and then get punished by , say a 10-14 day crash.

Not sure if that has helped you with your question...

 

[jesse's mom]

I was very sick when I began to learn about ME/CFS. I was a few months after a long hospital stay when I saw the movie Unrest. I found this board and realized that I had been pushing myself into one crash or PEM after another.

Each time I would have a lower baseline. When I push too hard I get bronchitis and it is always viral. This had been happening for decades. No doctor gave me the diagnosis of ME/CFS until that long hospital stay in 2017. I got worse and worse over the years. Until finally in 2017 I was totally bedridden and could hardly hold my head up to drink water for a few months.

Learning to pace myself has helped me to be much more functional overall, and to stay healthier.

Pacing for me is to rest before I get tired. When I start to get the least bit tired my blood pressure goes up 20 points or more when I stand for more than 5 or 10 minutes. I have learned to feel that now.

I journal every thing I do, eat, and all the meds and supplements for about 5 months now. I can see trends from doing this. I take my blood pressure many times a day. So I can see how different activities affect me.

I have gone from severe 1 on the scale to 3 in two years. I can concentrate for about an hour take a break and another hour all throughout the day. I can work on the computer and enjoy my life much more now that I am getting the hang of pacing without gong into PEM.

Pacing has helped me to be a part of my family again, I can visit some now without crashing.

I hope this answered your question.

 

[MartinK]

Thanks all, you are awesome!
All that 6 years I'm learning how to treat everything with humility and tranquility...sometimes selfishness is needed - think about yourself, no on others, who are health.
In the past, I tried a lot to get back on my bike...5-4 years ago. It was crazy...but I was little higher on scale, Now, last year Im on 2...
I'm sure I still want to get back on the bike, but now it's no good to worry about it...the time will come.

I have learned good mode for the last 2 years (but even though I try, I can't avoid PEM sometimes). I make some copywriting work from bed, 2x day yoga, some walk around house...and best is put bed mattress into my wagon Subaru and go to forest, open sunroof and boot ...relax... take some photos... and go home.
It keeps my head alright!
But I have to be careful - more than 10 minutes on my feet or more like 30-40 minutes sit = PEM.

I think small movement and activity are very important - but all with carefully.

Bad is, when I need go for shoping or for doctor...or, when I stuck in traffic jam... etc...external influences may be badly samotimes... and then come PEM!

Martin

 

[Rufous McKinney]

best is put bed mattress into my wagon Subaru and go to forest, open sunroof and boot ...relax... take some photos... and go home.

That sure sounds like a nice: outing! Great Plan!

When I was working....(retired recently).. and it was very hard, but I was able to PACE myself to some degree so I would only schedule like one day a week for: go out and go to meetings. I could then get work done from a home office, which is likely the only reason I was able to work at all. That let me: PACE. I could just lie down and read that report. And I had alot of leave so I could work short days using leave and accumulated vacation.

A concern I have now is I think much more attention should be paid to: the trajectory here and how to prevent further decline. How to keep mild from becoming Moderate. Moderate from becoming Serious. ETc .

Continuing to work with this ME was: a major mistake I now believe and not noble. Adrenals run thru a meat grinder.

 

[Rufous McKinney]

Pacing for me is to rest before I get tired. When I start to get the least bit tired my blood pressure goes up 20 points or more when I stand for more than 5 or 10 minutes. I have learned to feel that now.

Thats all so tough, you've been thru some tough stuff and yet doing so well now in terms of: understanding and taking care of yourself. And of course that wasn't the plan: stopping ones life, giving up careers and interests...

My personality is very : inconsistent, undisciplined, erratic. Gemini type. Why be consistent, how boring. Why not be adventurous, how fun. Six air planets: don't try to pin me down, opinion will change tomorrow.

So: just the consistency of deployment of: tools to improve- is quite challenging here.

So now I've started Notes, calenders, making note of THis and THAt....and its actually been helpful.

 

[jesse's mom]

I'm sure I still want to get back on the bike, but now it's no good to worry about it...the time will come.

I agree @MartinK I have a goal to go fishing again, in my husband's boat. I will settle for a little ride in smooth waters in the rivers or backwaters. I am going to the beach with friends all next week, but I mostly trade one bed for another.

If I had not learned to pace I could not do this.

There is always hope.

I started taking BCAAs (branched chain amino acids) and I really think they help shorten PEM!

I also got a Dr who is taking blood at least every three months. I had a really bad vitamin D deficiency. It has taken almost a year to tirate up on D3 and make a real difference in how I feel. I start everything low and slow.

I am glad you joined us here and hope you get a lot out of your membership!

 

[panckage]

According to the Bateman horn centre educational videos PEM is ok as long as it lasts 24hrs or less


In my own anecdotal experience I have no idea! But I find I am most productive when I am able to "push" (not like a regular person of course) and then I become completely exhausted and crash... but I can sleep properly!

Whereas if I try to avoid PEM 100% I find I am just a zombie. I am mostly brain dead. I feel like I should rest but I can't. Things get really bad for me

So yeah I need to be able to exhaust myself so I can sleep properly. What is the limit for this? I am not sure but for example 30min on an exercise bike (with low resistance) improves my symptoms generally... although I'm not always well enough to do this. OTOH a 15min jog is too much for me and worsens symptoms

In conclusion I think I will agree with the Bateman horn centre. A little is great (does wonders for sleep) but too much and I worsen

 

[MartinK]

Hey @panckage this is how I feel too...
A little fatigue after exricise or activity is good - make that limit before PEM next day...

when I'm just lying, I'm also a zombie - it is strongly felt that the body does not work at all when no-moves.
certainly missing a lot of oxygen in the tissues and it is not healthy when we only visit our beds.

Yoga makes me better... little bit but more times at day.