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Was my advice good advice?

Messages
12
Location
Lancashire, UK
I apologise if this is gibberish - I am not having the best day symptom/brain fog wise...

When I first got ME (about 2 years ago today), thankfully I knew a couple of other people who have had this illness for decades and so were full of advice for my early days. A Lot of it has been very helpful regarding keeping a stiff upper lip and not letting the illness mentally drag you down as much as it successfully does so physically.

The parts of the advice that I have struggled to put into action are the following two points:

1) do an equal amount of activity every day - if responsibility take over and you find yourself having done a lot on one day: try not to do absolutely nothing the next day.

2) avoid going to bed as much as possible, under the assumption that once you take refuge in bed it gets harder and harder to get out of it.

Obviously, there are times when I get so ill that I have no choice but to get to bed until it passes.
I understand this advice as being based around pacing, and avoiding deconditioning. However, I struggle to balance this advice with other advice that I have received re:aggressive rest.

what are others opinions and experience of this?
 

Dechi

Senior Member
Messages
1,454
Maybe it works for you, but this is not advice I would follow. I plan my days according to my limitations. If I’ve done more on a specific day and feel great the next, then I’ll just do my usual routine, which is less. If I feel bad after doing too much, then the next days will be spent resting.

It’s all about my symptoms. If they’re in check, I’m okay. If they’re stronger, then rest is needed.

About being in bed, I think you need to listen to your body. If you need it, sleep ! I try not to sleep in my bed other than during the night. This helps with my sleep pattern. So I nap on the couch, sometimes twice a day.
 
Messages
12
Location
Lancashire, UK
It’s all about my symptoms. If they’re in check, I’m okay. If they’re stronger, then rest is needed.

About being in bed, I think you need to listen to your body. If you need it, sleep ! I try not to sleep in my bed other than during the night. This helps with my sleep pattern. So I nap on the couch, sometimes twice a day.

Thank you for your input Dechi. I do try to rest more than the advice suggests. And I had a lot of insomnia in my earlier days so I definitely only lay down on the sofa during the day - strangely I can never sleep during the day - "sleepiness" isnt a symptom for me, it's more of a weakness/pain/lightheadedness.
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
The parts of the advice that I have struggled to put into action are the following two points:

1) do an equal amount of activity every day - if responsibility take over and you find yourself having done a lot on one day: try not to do absolutely nothing the next day.

2) avoid going to bed as much as possible, under the assumption that once you take refuge in bed it gets harder and harder to get out of it.

That's dangerous advice. :cautious:

I have found it inevitable that I will sometimes, hell many times, push myself too far. The ensuing crash is to be respected, or else.

Aggressive Rest Therapy gets my vote. :thumbsup:

As I wonder where I first heard this term (ART), a quick Google search leads me to none other than the infamous Simon Wessely, informing me that I know so very little about the illness that I am living with.
Screenshot-2018-3-29 Meet Willow, dysautonomia service dog in-training .png
 

Diwi9

Administrator
Messages
1,780
Location
USA
I think the bad advice is coming out of the NHS system. I watched a video yesterday on YouTube of a young woman with ME/CFS and she said her physio was impressing the concept of "consistency" on her, with the hopes of slow and gradual improvement. Whatever one calls it, it's Graded Exercise Therapy. News flash...if we could do more without getting sicker, we would ;) I'm sure her physio meant well, but unfortunately these therapists are giving ideological advice based on poorly conducted science.

@besedaris - this illness is fluctuating and pacing is an inexact measure to guide the care for yourself...only you can tell where your energy reserves are at on a given day. At a minimum, investment in a cheap heart rate monitor can help you with pacing, and help you to avoid crashes if you also have POTS...one with a pedometer can also help you monitor activity trends.

I go to bed whenever I need to. I seem to go through phases of needing lots of sleep; and when I'm doing better, not much sleep at all.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
I don't consider it strange to be unable to sleep during the day. I can't do it unless I'm seriously ill (flu). The people who can sleep during the day must be the ones with a sleep disorder. ;)

For how much you can do, you need to learn--and respect--your own limits. I haven't noticed any long-term harm from exceeding my limits, but others certainly have, and you really don't want to discover too late that you're in the latter group.

If you want to avoid becoming unfit due to lack of exercise, figure out what activities you have been regularly doing (ie. walking, biking) and find your limits there. It seems that muscle-damaging activities (straining muscles beyond their normal daily use) is the trigger for PEM, rather than the duration of using muscles.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
@Diwi9, do you find that depleting your energy reserves triggers PEM, or is it muscle-damaging activities? For me it's very definitely the latter. I haven't noticed any PEM or worsening of other ME symptoms from simple exertion, such as a 6-hr bike ride. However, a few minutes of straining my muscles beyond their normal limits does trigger PEM, even though that's hardly reducing energy reserves.
 

Diwi9

Administrator
Messages
1,780
Location
USA
@Diwi9, do you find that depleting your energy reserves triggers PEM, or is it muscle-damaging activities? For me it's very definitely the latter. I haven't noticed any PEM or worsening of other ME symptoms from simple exertion, such as a 6-hr bike ride. However, a few minutes of straining my muscles beyond their normal limits does trigger PEM, even though that's hardly reducing energy reserves.
I'm glad you asked because we are different in this respect. I can sometimes walk a fair bit, so long as it is flat ground. Steps and inclines, which raise my heart rate, will trigger PEM. I lift weights nearly every evening (which is when I feel best) in an effort to maintain some conditioning. I do the weights sitting or laying down and it's very limited, but I don't seem to pay for straining the muscles with PEM...just muscle soreness on occasion.

If you can do a 6 hour bike ride, are you at any point doing speed work? I'm a bit envious, but happy that you are able to have this activity in your life!
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
The steps and inclines also change how you use your muscles, so there might be tissue damage from that. I suppose it would take a cytokine test to know for sure. I'm just guessing that your weight lifting is in the range that is straining but not actually tearing muscles.

No speed work. That 6-hr ride was just to see if I could do it (ride to town and back). It took longer than it should have because I kept stopping to pick up cans and bottles. :rolleyes: It only took 3 hrs the second time. I go biking because sometimes I'm just desperate to get out doing something and seeing something new. In previous years, I'd feel the urge to go for a <20 km ride once a week or so, and a 40 km ride every two weeks or so. I did get PEM while working up to those limits. I mostly rode on gravel roads (very hilly too) through the woods, so it was very relaxing--aside from the pedalling.

Last year I just didn't feel the urge to go riding. I'm hoping that now that I have an effective PEM blocker, I can build my riding muscles back up to fitness.
 

Diwi9

Administrator
Messages
1,780
Location
USA
In previous years, I'd feel the urge to go for a <20 km ride once a week or so, and a 40 km ride every two weeks or so. I did get PEM while working up to those limits. I mostly rode on gravel roads (very hilly too) through the woods, so it was very relaxing--aside from the pedalling.

Last year I just didn't feel the urge to go riding. I'm hoping that now that I have an effective PEM blocker, I can build my riding muscles back up to fitness.
I'm willing to suffer PEM to ride my horse now and again. I have had short periods of remission (ten days to three weeks) and was able to do more than normal. What are you using as a PEM blocker? I don't know how to block PEM other than pacing/heart rate monitoring, but I do treat it with creatine and amino acids.

@besedaris - Hope we are not traveling to far off topic from the original post, but in line with your original questions...it's always interesting to learn how different we are in our physical expenditure and where activity and PEM meet.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
What blocks physically-triggered PEM for me is cumin (regular, not black). For more details, see the thread: http://forums.phoenixrising.me/index.php?threads/possible-pem-blocker.56232/

A level tsp of ground cumin blocks my PEM completely for three days. With it, I can do all sort of strenuous physical activities without suffering PEM. If you try it and it works for you, please report on it so other people can benefit.
 

Diwi9

Administrator
Messages
1,780
Location
USA
What blocks physically-triggered PEM for me is cumin (regular, not black). For more details, see the thread: http://forums.phoenixrising.me/index.php?threads/possible-pem-blocker.56232/

A level tsp of ground cumin blocks my PEM completely for three days. With it, I can do all sort of strenuous physical activities without suffering PEM. If you try it and it works for you, please report on it so other people can benefit.
Thanks! I think I remember seeing the thread some time ago, will review it again.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
From WebMD:

CUMIN - Uses & Effectiveness

Insufficient Evidence for:
  • Diarrhea.
  • Colic.
  • Gas.
  • Bowel spasms.
  • Fluid retention.
  • Menstrual problems.
  • Increasing sexual desire.
  • Other conditions.
I find my energy varies dramatically from day to day so I have found exercising to fit my energy capacity on a given day works better than doing the same every day, where I could run the risk of overdoing it on some days and not exercising enough on others.

As for going to bed, I try to keep my bed for night time, but I have slept everywhere from the couch to the floor of a store or office or gym to a parking lot or trail. Just depends on where I happen to be when I'm sleeping.

For energy, depending on what problem I'm trying to solve, thyroid hormones, hydrocortisone, NAD+, NADH, branched chain amino acids, citrulline, ornithine, and glutathione have played helpful roles. They do different things, so the trick is knowing when to use what. I have had no effect from trying cumin, however.
 

Dechi

Senior Member
Messages
1,454
I don't consider it strange to be unable to sleep during the day. I can't do it unless I'm seriously ill (flu). The people who can sleep during the day must be the ones with a sleep disorder. ;).

To me it’s rather odd that you wouldn’t sleep during the day, ever. I think most pwme sleep during the day, some people need to sleep a lot, some will nap once in a while, but I believe most people do sleep during the day.

I do need to sleep 2-4 hours during the day, about 70% of the time. I just need it, even though I feel worse for a while when I wake up. I don’t have a sleeping disorder that I know of (awaiting testing in 2019).
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
My point was that whatever we personally are accustomed to is what we consider 'normal', and anything else is weird. Just human nature.

I suppose I could nap in the daytime when I was young. I lost that ability somewhere along the way. To me, falling asleep during the day is a clear sign of viral infection, because I can't seem to do it otherwise. It usually takes me an hour or more to fall asleep in the evening too. That's just how I am.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
- strangely I can never sleep during the day -

I just came across something about this. I've been reading a book (Sync, by Steven Strogatz) about coupled oscillators. One example is our sleep/wake cycles. The basic circadian rhythm is our body's temperature cycle, peaking around 6PM, lowest around 6AM for normal people following a normal day cycle (sleeping 11PM-7AM). There's a peak period for falling asleep around 6AM, with a second peak after noon. There are also two 'forbidden zones' during the day when it is much harder to fall asleep; one in the morning after we wake up, and also in the evening, before midnight.

I guess your and my forbidden zones squish our afternoon nap zone. It's good to know there's an actual physiological explanation for having difficulty falling asleep during the day.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
1) do an equal amount of activity every day - if responsibility take over and you find yourself having done a lot on one day: try not to do absolutely nothing the next day.

2) avoid going to bed as much as possible, under the assumption that once you take refuge in bed it gets harder and harder to get out of it.

I'm glad you found those bits of "advice" hard to follow! Sounds like awful advice to me. I would suggest that the amount of activity you do is the amount you can do without making yourself feel worse. This may take some experience, if you are one whose post-exertional malaise is delayed by a day or two. Certainly, if you have overdone it one day, you should try to rest as soon as possible, but it's not going to be an exact formula, such as, "I was up for 3 extra hours yesterday, so 3 extra hours of rest today will make it all right..." Rest when you feel the need to rest. Do things when you can, but be careful...

Which brings me to my second point. This is advice you were supposed to be following when you first got ill? My advice at that point (a bit late now) would be to GO TO BED and STAY THERE as long as you can. I, and many other here, wish they had done so, rather than pushing to be normal. Perhaps with that initial rest, my body would have had the chance to recover.

No, there really is no data to support this approach, just anecdotal evidence that those who did engage in "Aggressive Rest Therapy" (regardless of whether the term was coined by SW :depressed: it is a good description) seemed to have a better chance of recovery.

And, if you feel more like being active at 3 AM, that seems to be par for this disease. I don't thing efforts to reset the clock are warranted if you find you are feel better functioning in the middle of the night, go with it, and rest when your body wants it. Fighting your body's inclinations is likely to be a losing battle. You wouldn't tell someone with the flu to tough it out and stay out of bed (unless you are a medical school attending talking to one of your residents...:mad:). You are sick, so rest if your body wants rest!
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@valentinelynx, good advice. Some days I sleep at night and get up in the afternoon, other times I sleep during the day and get up in the late evening. It's based on staying in bed as long as I can, and then being active and awake whenever I happen to be alert.

I try to counter any excess stimulation at night by reading a book from a paperwhite Kindle while reclining on a couch. After I've dropped the Kindle on the floor a few times from falling asleep, I will then succumb to sleeping and not try to read any more. I don't try to watch TV after 1 a.m. or do any computer stuff after 10 p.m.
 
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Messages
85
I'm willing to suffer PEM to ride my horse now and again. I have had short periods of remission (ten days to three weeks) and was able to do more than normal. What are you using as a PEM blocker? I don't know how to block PEM other than pacing/heart rate monitoring, but I do treat it with creatine and amino acids.

@besedaris - Hope we are not traveling to far off topic from the original post, but in line with your original questions...it's always interesting to learn how different we are in our physical expenditure and where activity and PEM meet.
I am frequently asked about whether a patient should or should not go to a family or friends party because they will suffer thr next day or there after. My advice is ,if they can, go and enjoy the party. We know there may be consequences later, however balance the little enjoyment with the PEM. This condition is depressing , not caused by depression. Getting a little enjoyment may be good for the spirit if not for the body. Of course sadly there are the situations where even a little party is not possible