Pacing problem: Overwhelming urges to do more than I should

[Kieran]

I am bed bound and have severe/very severe ME. I believe the main reason I became so ill is because of my inability to stop myself from doing too much activity i.e. not pacing correctly. ME patients are advised to pace their activities carefully throughout each day but as most of you will know this can be very difficult to achieve. I pace my activities extremely carefully now but on my better days I still feel very restless/overexcited/hyperactive with extremely strong urges to to do more than I should. I’ve tried extremely hard over the last seven years and I’ve tried many different things from mind-body techniques to drugs and supplements to help me with this and to slow me down but the only thing that really works is taking Olanzapine. I’m so ill now that I can’t afford to get any worse which is why I resorted to taking this medication.

10-15mg olanzapine helps me with my tendency to overdo it because it makes me too tired/sleepy to do much. It puts me into a very nice relaxed/sleepy state and I would just lie back (sometimes half-doze off), listen to music and get the rest I need for a couple of hours. I only take it now and again on the days when I feel over-excited/hyperactive - too restless to manage with mind-body techniques alone. Unfortunately Olanzapine is causing significant weight gain and I feel I cant afford to risk putting on anymore weight now - the weight I’ve gained is already causing me to exert myself more to move around the bed and this makes me more tired/unwell.

I’ve been trying other supplements and drugs that have drowsiness as a side effect (but not weight gain) in an effort to make me too relaxed/tired/sleepy to do much on those restless days i.e. an alternative to olanzapine. The anti-histamine drugs Piritin and Phenergan didn’t help. I’ve worked my way through a number of supplements on Health Rising’s survey ‘ME/CFS and FM Patients on Supplements That Help Them Sleep’ but no luck yet. I’ve tried a large dose of organic hemp/CBD oil but didn’t notice any difference. I also tried a strong dose of cannabis oil but it caused my heart rate to soar and the ‘stoned’ feeling was very unpleasant and I was unable to concentrate properly on my breath (meditation/relaxation technique) or the music in order to get the rest I needed.

Since I’m bed bound I’ve also tried leaving my phone, ipad, magazines, radio etc out of reach on those hyper days so that I can’t get at them! However it’s too hard (and quite unnatural) to get through a whole day doing absolutely no activity at all and as soon as I get my hands on the iPad etc on my restless days I tend to do too much.

So, I’m wondering: how do other people overcome their overwhelmingly strong urges to do more than they should on their better days and what drugs/supplements, if any, helped them to achieve this? (I’m looking for a drug/supplement that really knocks you out for a couple of hours but not in an unpleasant way)

p.s. It's taken me a month to write this!

 

[dejurgen]

I had extremely strong surges of adrenaline in the past.

It helped me realizing what was probably going on:
* my breathing often was very weak without "aid"
* the blood flow (to my brain) was often too weak without "aid"

* adrenaline and nor-adrenaline do two things very well:
- increase breathing (it's a pretty good known bronchodilator so it "opens up" the lungs)
- redirect more blood to the brain, away from "less urgent" organs

=> So very strong surges of adrenaline help you A LOT when YOU ARE AT YOUR WEAKEST!

However, strong surges of adrenaline are like that emergency push that helps a frail person lift a car and believe he can lift it without doubt when he needs to save his children.

=> So these very strong surges of ADRENALINE let you FEEL AT YOUR STRONGEST WHEN YOU ARE AT YOUR WEAKEST! And it makes perfectly sane people completely blind to the fact that they are at their weakest and not at their strongest when they feel so "energized". Adrenaline is "designed" to not let you question a single bit how super strong you are!

Realizing this helped me to avoid this pitfall over and over again. It still stays difficult to not do much or anything when feeling so energized but know I know why I do this. And knowing this makes me feel like doing nothing at all is actually an activity by itself. So I try to actively focus my mind on doing very few at all.

Really needing this adrenaline is probably why meditation and relaxation techniques failed me time and again when I felt this way. I used energy to try reduce a hormone I needed to survive. That wasted energy and made me feel even more wired.

You could say I replaced a normal and futile attempt to meditate by a "focused effort to do as few as possible". While that may sound the same, I did NOT try to calm my mind but to actively interrupt activity each time I noticed it. If you have trouble breathing focusing on better breathing may help. What works even better for me is counting my hart beats as that is just the effort needed to interrupt other thoughts and activity. So I often replaced meditation by counting hart rate. Less effort, better result.

Over time, this decreased the overdo and crash cycle depths so my health was more stable, I got less PEMs and less moments of desiring to "run through the wall".

 

[dejurgen]

The origin of my very high adrenaline levels was likely in a big part:
* my breathing that often was very weak without "aid"
* the blood flow (to my brain) that was often too weak without "aid"

Trying to improve those did make sense to me. Less problems to compensate by high adrenaline levels likely would mean less high adrenaline levels.

So I tried to slowly improve breathing and blood flow. Notice that IMPROVING IS NOT INCREASING! It is making breathing and blood flow more efficient (less effort for the same result) and giving the body more options to increase them WHEN THE BODY FEELS IT'S NECESSARY.

Doing so saves energy and exhaustion when the need is not at its highest, by for example breathing the same amount but doing more efficient so saving precious energy. Not exhausting the diaphragm and chest muscles leaves them in a better average shape. When trouble really hits you you have both muscles in better shape and a more efficient technique to offer better breathing for the same effort. When the body really gets in trouble it has a nice spare capacity to use and save you from deep trouble and bad adrenaline spikes.

So doing small series of low intensity and slow "circulation exercises" during the day and learning to (diaphragm) breathe well helped me a lot improving my health. I did both under the guidance of a good intuitive physical therapist. I recommend against trying to do it on your own or by reading a book. I failed achieving results that way. I even got some back firing due to trying on my own. Know it'll take many months to achieve some results. That does not mean you need to see and pay the therapist that often. In the beginning I went every two weeks and did exercises she gave me at home by myself. Now, about two years later I go about every month or fewer but still learn a few small tricks improving my health from time to time. Those may sound meaningless but they add up over time.

 

[dejurgen]

I learned that for me, trying to sleep better and for longer periods when I was so flooded with adrenaline was worse then a waste: it worked negatively.

I used to wake up the first time about 1 to 2 hours after I fell asleep. Then this increased to about every half hour and most of the night I woke up every 15 minutes. By the early morning that went to about every 5 minutes to sometimes even every single minute.

Some medications made me better sleep but didn't improve my awake health a single bit.

Then I learned that my body was very likely PURPOSELY AWAKING ME SO OFTEN. It encouraged me to roll over each time I awoke and with it I stimulated my blood circulation and breathing that became often troublesome at night.

When I started to realize this and got out of bed (after moving the legs and arms slowly a bit first to get circulation restarted and muscles "warmed up") and walked to the toilet and did some small movement and breathing exercise something surprising happened.

I was getting up for 5 to 10 times a night for about 20 to 30 minutes each time, doing these small exercise. I broke my night to smithereens. It should break a healthy persons mind and body. But I actually slowly got better. I still needed my sleep and the procedure caused me too few hours to sleep. Still I got better. Now I learned to spread my sleep more over the day, further helping me both get enough sleep and improving health.

The result: improved health, improved sleep quality and being better in the morning, waking up far less then before.

For me, I learned that even getting up (at night) and sitting on a chair for 15 minutes helped me.

Recently I figured out I probably get too much water in my lungs during the night. High amounts of inflammation do block capillaries and the lungs are having a very large amount of capillaries. As stuck capillaries make especially getting blood/liquid back to the hart very difficult it increases the chance for liquid pooling in the lungs a lot. Lying flat (like being bed bound and when sleeping) makes this worse. It's apparently a known medical problem: https://en.wikipedia.org/wiki/Orthopnea.

I fit symptoms very well. When waking up late night / early morning I often found myself breathing like a horse and still being short of breath. getting out of bed improved that. I realize that for bed bound patients it is often difficult to do so. Being bed bound and not being able to sit does however not rule out this orthopnea thing. I believe I have both this orthopnea thing and some amount of orthostatic intolerance (difficulty standing up). The orthopnea thing is the worst for me.

Still, when having both it probably remains important to sit somewhat more upright from time to time to prevent too much accumulation of water in the lungs and allow it to drain. That's how I evolved to having a pattern of having both periods of sleep and being awake spread over night and day.

For people with a strong amount of orthostatic intolerance and some orthopnea a bed that temporarily can be inclined on the head side may help IMO. I now tend to believe that most ME patients have some amount of both problems in the mix, making observing how lying down, sitting, walking... affects them very difficult.

It would help explain why so many of use experience a strong air hunger when still breathing like a horse. (Too) Wet lungs give you a feeling of drowning and make good breathing near impossible. It also helps explain why it so often happens are to strong exertion: too much exertion causes a strong inflammatory reflex that can block blood flow in capillaries a lot above average. In the lungs that would mean a rapid pilling up of water in much of the lungs.

It would also help explain why so many ME patients seem to have very low blood volumes: too much water in the lungs increases chemicals that help reduce water from the body a lot (by removing sodium and increasing urinating a lot). Our low blood volumes would hence be in large part due to the strong inflammation in our lung capillaries drowning our lungs and sending out a very strong signal "remove liquid from the body to the max".

The inflammation would be body wide, but it happening also in the lungs would be a very strong driver to reduce blood volumes. With low blood volumes it's far more difficult to have liquid and blood pooling.

Those low blood volumes by themselves would just cause a whole cascade of other nasty symptoms and also help this disease getting stuck.

 

[dejurgen]

Having a partial flooding of the lungs, like for example having much of the smaller out-most parts of the lungs being wet but having the bigger parts being dry, could offer a reasonable explanation as to why we do have *EDIT* HYPOcapnia and still do hyperventilate.

Hyperventilating causes oxygen in the blood to be high and CO2 to be (too) low. Doing so on a near constant base as ME patients do seems very wasteful: it costs plenty of energy we can't really spare to breath so much, it makes oxygenation of the cells difficult due to the Bohr effect as too low levels of CO2 in the blood make the RBC releasing their oxygen more difficult and too low CO2 does constrict the blood vessels quite a lot making good blood flow more difficult (especially in the capillaries).

So why do we do it? Why don't we just breath less and still have enough oxygen but normal CO2 levels? I don't buy the "anxiety/psychological" explanation.

If our smallest lung sacs would be flooded then their probably is a much more logic explanation:
* CO2 in the blood in the lungs should have no problem to travel/diffuse/migrate from the blood in the capillaries to the water in these smallest lung pockets. Much of the CO2 is stored into the blood anyways as H2CO3 and if I recall correctly the release mechanism for getting CO2 out of the RBC and into the air into the lungs is by first moving CO2 from the RBC to H2CO3 into the blood liquid. So there would be near no hindrance to move CO2 from the blood into the wetter parts of the lungs.
* Once the H2CO3 is in the water in the wet parts of the lungs, it probably can just "bubble out" of the liquid and find its escape route into the air that is breath out.
* I can only imagine breathing in O2 and getting it from the air in the wet parts of the lungs into the blood would be far more difficult. It just is describing drowning isn't it?

If this is correct, the the normal ratio of how much O2 is transferred into the blood per each breath we take would be reduced a lot. The ratio of how much CO2 is transferred out of the blood per each breath we take is barely reduced. That results into a completely skewed ratio of O2 moved into the blood versus CO2 mover out off the blood per each breath.

Now that would cause either:
* Breath "a normal amount" and have normal CO2 levels but far too low O2 levels in the blood. That would deprive our cells of vital oxygen way too much.
* Breath a lot more in order to get normal O2 levels but far too low CO2 levels. These too low CO2 levels would harm our health too, but at least we would survive longer then a single day.

=> If my view on the topic is correct and if we indeed have (time varying) problems with (part of) the lungs be flooded by water then hyperventilating and decreasing blood volumes a lot would be (as good as) the ONLY reasonable reaction of our body!

This problem could be very easily overlooked as the typical patient that would drown in his own lungs has a face and legs filled with water so much that it is very easily diagnosed. We borderline the opposite. The problem wouldn't show up on most lung tests nor on most X-rays. The lung test is normally done while seated, something which decreases the effect a lot. The X-ray scan is most often done while lying down. But getting such scan is often done after the patient has been walking by himself or has been sitting in a wheelchair again masking the potential problem quite a lot (by draining the excess water from the lungs).

Also, we have an often strongly time varying amount of inflammation in the capillaries and for many of us our hart rates and hart beat strength (and according drainage of the potentially wet lungs) vary a great deal. That adds to the (lung flooding of the) horizontal versus vertical position effect.

Also, having likely already really constricted arteries, veins and capillaries makes the impact of a burst of inflammation quite likely a lot more pronounced then in healthy people. With that I mean that some extra amount of inflammation could yield a far larger effect on how wet/dry our lungs are compared to a person with normal blood vessel constriction/dilation making the condition far more variable then the typical "flooded lung patient's" case.

Low blood volumes should have a particularly large impact on how much percentage of the blood flows in capillaries versus in bigger blood vessels. Again a small change in blood volume (having drunk something, urinated...), blood CO2 and NO levels, position, inflammation should have an exaggerated change in how much water is in the smaller pockets of the lungs.

In addition, with plenty of us having some form of orthostatic intolerance, having this (partial and time varying) orthopnea problem would seem impossible as in direct contradiction with having orthostatic intolerance (and with having low blood volumes). I too didn't consider both to be possible together until recently. Like in one can't have X and simultaneously have the opposite of X too. But they are not opposites, they just appear to be IMO.

All of it would make it for an easily missed diagnosis. Yet, for many of us it may be happening and have a major affect on our health.

 

[Abrin]

So, I’m wondering: how do other people overcome their overwhelmingly strong urges to do more than they should on their better days and what drugs/supplements, if any, helped them to achieve this? (I’m looking for a drug/supplement that really knocks you out for a couple of hours but not in an unpleasant way)

I am not sure if this will be useful to you because I am on the more moderate part of the illness spectrum but I've been having really good luck over these last five months pacing by using heart rate variability. Until I started using it and was able to chart actually numbers I just really couldn't wrap my mind around how much damage that mental work can cause to my system because it feels like so are putting in so much less effort than physical exercise.

Now that I can see the effects in a graph it makes a lot easier to not overdo things for me.

 

[Danesh]

Hello Kieran. I am almost as severe as you. I understand what you are struggling with. I have the same problem. Part of my overdoing is because I have no choice, as I am also a mother of an adult child with ME/CFS and FM, and who is dependent on me on bad days for food, water, etc. On good days, for hugs and bits of conversation, if I can manage it. But I also get adrenaline surges, as deJurgen explains, as there is always a stressor of some kind in our home of illness and needs. I use Klonopin to help with sleep, and recently added LDN which also helps. But nothing I've found will calm my body down during an adrenalin surge, or hyperactive state that comes at times. It's like my body is boiling and I have to move or do something. I'm sorry you are so sick now. You are not alone. I pray someone helps find you a med to work for you during those times. And I hope you didn't crash too badly after spending a month writing your post.

 

[roxi]

I am not sure if this will be useful to you because I am on the more moderate part of the illness spectrum but I've been having really good luck over these last five months pacing by using heart rate variability. Until I started using it and was able to chart actually numbers I just really couldn't wrap my mind around how much damage that mental work can cause to my system because it feels like so are putting in so much less effort than physical exercise.

Now that I can see the effects in a graph it makes a lot easier to not overdo things for me.

Dear Abrin

Would you mind explaining how you monitor the HRV in the case of both phisical and mental activity? How do you go about it? Thank you so much.

 

[Abrin]

Dear Abrin

Would you mind explaining how you monitor the HRV in the case of both phisical and mental activity? How do you go about it? Thank you so much.

I found out all about it here on this forum!

Here is the link to the article.

https://www.healthrising.org/forums...sting-could-help-you-improve-your-health.353/

 

[Issie]

Dejurgen, have you been checked for sleep apena? What you describe sounds like this.

Also, I have ideas (my hypothesis) on CO2 issues. I'll copy and paste some comments I made on DINET forum in 2013.

"http://forums.dinet.org/index.php?/topic/18979-standing-co2-clue-to-why-we-get-lightheaded/page-2?hl=+carbon +dioxide

Here's a post where we were talking about this. CO2 also can cause dilation. So, maybe there is too much dilation going on and we are also trying to eliminate the CO2 and cause more vasoconstriction. I know there is a fine line with me as to constriction and dilation.

Snorkels also constitute respiratory dead space. When the user takes in a fresh breath, some of the previously exhaled air which remains in the snorkel is recycled into the lungs, reducing breathing efficiency and causing a build up of carbon dioxide in the blood, which can result in hypercapnia. The greater the volume of the tube, and the smaller the tidal volume of breathing, the more this problem is exacerbated. A smaller diameter tube reduces the dead volume, but also increases resistance to airflow and so increases the work of breathing. Occasional exhalation through the nose while snorkeling will reduce the build up of carbon dioxide, and help in keeping the mask clear of water.

http://en.wikipedia.org/wiki/Snorkeling

Here's info on rebreathing with snorkels increasing CO2. There's lots of info on this in dive information.

I'm not sure about the CO2 thing. When I had the hyperventilate thing in a horizontal position with swimming the only thing I think it could have been was either a mast cell response from the exercise or too much CO2 from rebreathing CO2 that built up in the bottom of the snorkel. Only things I can come up with. I have had them at other times too - but, this seems to make the most sense with the swimming episodes."

One other thing I realized with this was I didn't need to breathe into a paper bag with hyperventilating as that would create more CO2 and cause more vasoconstriction and more problems. And, water in itself compresses on the body and combined with salt of sea water.......too much of a combination of things and I have problems.

 

[Issie]

Stagnant Hypoxia - Where Chronic Fatigue Syndrome and Hyperadrenergic POTS Meet? - Health Rising
https://www.healthrising.org/blog/2...tigue-syndrome-and-hyperadrenergic-pots-meet/

Another thread on this.

 

[GrammaLinda]

I am bed bound and have severe/very severe ME. I believe the main reason I became so ill is because of my inability to stop myself from doing too much activity i.e. not pacing correctly. ME patients are advised to pace their activities carefully throughout each day but as most of you will know this can be very difficult to achieve. I pace my activities extremely carefully now but on my better days I still feel very restless/overexcited/hyperactive with extremely strong urges to to do more than I should. I’ve tried extremely hard over the last seven years and I’ve tried many different things from mind-body techniques to drugs and supplements to help me with this and to slow me down but the only thing that really works is taking Olanzapine. I’m so ill now that I can’t afford to get any worse which is why I resorted to taking this medication.

10-15mg olanzapine helps me with my tendency to overdo it because it makes me too tired/sleepy to do much. It puts me into a very nice relaxed/sleepy state and I would just lie back (sometimes half-doze off), listen to music and get the rest I need for a couple of hours. I only take it now and again on the days when I feel over-excited/hyperactive - too restless to manage with mind-body techniques alone. Unfortunately Olanzapine is causing significant weight gain and I feel I cant afford to risk putting on anymore weight now - the weight I’ve gained is already causing me to exert myself more to move around the bed and this makes me more tired/unwell.

I’ve been trying other supplements and drugs that have drowsiness as a side effect (but not weight gain) in an effort to make me too relaxed/tired/sleepy to do much on those restless days i.e. an alternative to olanzapine. The anti-histamine drugs Piritin and Phenergan didn’t help. I’ve worked my way through a number of supplements on Health Rising’s survey ‘ME/CFS and FM Patients on Supplements That Help Them Sleep’ but no luck yet. I’ve tried a large dose of organic hemp/CBD oil but didn’t notice any difference. I also tried a strong dose of cannabis oil but it caused my heart rate to soar and the ‘stoned’ feeling was very unpleasant and I was unable to concentrate properly on my breath (meditation/relaxation technique) or the music in order to get the rest I needed.

Since I’m bed bound I’ve also tried leaving my phone, ipad, magazines, radio etc out of reach on those hyper days so that I can’t get at them! However it’s too hard (and quite unnatural) to get through a whole day doing absolutely no activity at all and as soon as I get my hands on the iPad etc on my restless days I tend to do too much.

So, I’m wondering: how do other people overcome their overwhelmingly strong urges to do more than they should on their better days and what drugs/supplements, if any, helped them to achieve this? (I’m looking for a drug/supplement that really knocks you out for a couple of hours but not in an unpleasant way)

p.s. It's taken me a month to write this!

I am in the same boat. I have always been active. On the farm, in the house, physical activities. It seems immoral to NOT do my daily chores but I do pay for it. Some days I can barely leave my bed for the bathroom. Like today. Totally bedbound. But if I rally a bit the next day I will overdo it and slide backwards. I refuse to be helpless.
And I absolutely despise sleeping during the day. Life is too short. Lately, as in times over the years, I have an overwhelming need to sleep during the day, starting in the morning soon after awakening lasting all day, and I fight it. I am 72 yrs old and I still have a lot to do!
I also live in WA state , near Seattle. Schools and businesses around me have closed. Not to mention Flu type A and B not responding to the flu shots. I did not get the flu shot as I sometimes become ill for a day just following. I didn't need that kind of help and preferred to take my chances. In 6 months I have only been able to leave the house for limited blood work.
I try pacing and even then I become bedbound.
My Neuro Rx 7.5 Naltrexone. I sleep so much better with vivid dreams and I have been having headaches. Thankful for sleep and somewhat diminished pain in all areas. He also Rx a lightbox. Living in the Pac NW vitamin D3 is necessary and we seldom see the sun for months. So I am doing the lightbox. He said it has helped some. But I am getting worse.