Pacing - Can You Improve Without It? An ME/CFS and FM Poll

[Cort]

[fright]

[/fright]This woman with fibromyalgia found that she got benefit from D-Ribose but that the benefits were short-lived - until she added pacing to her program. That was when she found real benefits. She certainly wasn't well but she found that she was sleeping better and starting to experience feelings of wellness...

I began taking D-ribose on the 29th of September. I bought this brand because it is about half the price of Corvalen (which I couldn’t afford due to the amount I already spend on supplements). I noticed a difference from the first dose. It made me feel more awake and alert. However, I was finding the effects short-lived. I was taking 5g, 3 times daily as is often suggested. I was also finding that this dose was causing some mild bloating.

I decided to experiment and began taking 2.5g, 6 times daily.....I seem to tolerate the smaller dose well and taking D-ribose more frequently was when I really started to notice the affect it was having on me.

I decided to go back to basics with pacing, along with taking D-ribose. After just one week, I was beginning to have moments of feeling well at rest. My husband and mum have both noted that I seem to be doing better. Other improvements include:

• Less delayed fatigue (though keep in mind what I just said above about pacing)
• Reduced feeling of being unwell
• I feel I am getting better quality sleep some nights
• Improved mental clarity and concentration
• Reduced achiness

I think the improvements I have felt are great but I know if I push myself too much that I will still get a surge of increased symptoms. D-ribose is not a miracle cure. It is a useful supplement to aid your body’s recovery. I am going to continue taking D-ribose and it will be interesting to see if it helps me to progress any further in terms of my physical abilities.

That brought up for me the question of how important pacing is the success of any treatment program. Dr. Lerner was emphatic that his chronic fatigue syndrome (ME/CFS) patients on his antiviral program must be careful about pacing. No pacing - no success. Recently I've been pacing better physically and mentally and feeling better because of it.

It's possible that what happens in our bodies when we overdo it simply overwhelms any progress we might make on many treatments. It's also possible that some treatments are powerful enough so that pacing is not critical to their success.

What is your experience? How important has pacing been to getting benefits from treatments?

• Find Resources on Pacing here

 

[weyland]

It's hard for me to say because I can't not pace, I get really sick otherwise. I have to imagine that not pacing would reverse any of the improvements I've had on treatment though.

 

[Who Me?]

I'm forced to pace because I run out of gas. Days I do feel good I try not to overdo it because I'll pay, but it doesn't help me "get better". Just keeps me from total collapse.

I always heard do 50% of what you think you can do.

 

[weyland]

I always heard do 50% of what you think you can do.

I forget who said it first, but my favorite is don't do something standing if you could be doing it sitting, and don't do something sitting if you could be doing it laying down.

 

[Who Me?]

I forget who said it first, but my favorite is don't do something standing if you could be doing it sitting, and don't do something sitting if you could be doing it laying down.

Well I'm good! I'm always laying down. Even when I eat.

 

[Cort]

It's hard for me to say because I can't not pace, I get really sick otherwise. I have to imagine that not pacing would reverse any of the improvements I've had on treatment though.

I think the best pacers are the people who are forced into it. I think that Dan Moricoli's extreme reaction to overdoing it (arms flapping around, etc.) forced him into being a really good pacer. The alternative was too bad for him not to be very careful.

 

[Cort]

There is also a subset of people with ME/CFS who don't seem to improve with pacing. I'm not a good pacer but I know that I improve substantially with pacing. I may not be close to being able to do what healthy people do but I feel much better when I pace more rigorously physically and mentally.

For some people that's not true; pacing doesn't really help much.

 

[Who Me?]

I'm not a good pacer but I know that I improve substantially with pacing.

Hate you so much! lol.

 

[Cort]

Hate you so much! lol.

Your only consolation is that I'm really, really lousy at pacing (lol)...

 

[IrisRV]

Dr. Lerner was emphatic that his chronic fatigue syndrome (ME/CFS) patients on his antiviral program must be careful about pacing. No pacing - no success.

He was absolutely right for my daughter and I. If we couldn't pace, progress would stall. It was almost uncanny how clear it was. If we weren't sure before, we were sure then that Dr Lerner knew his stuff.

We found this to be true of all treatments -- if we paced properly using HR monitors, we made good progress. If we didn't, progress stalled. That was hard when treatments were working so we wanted to do more. Nope. Gotta keep pacing. The good news is that over time we could do more while staying in our HR target zone so we weren't stuck at the same low level of activity forever.

Daughter went from not being able to finish her college semester to fully functional (with treatment). I went from bedbound to able to walk around stores and do very, very careful strength exercise. I'm far from fully functional, but I'm a heck of a lot better than bedbound and unable to read. Neither of us stays where we are without a lot of symptomatic treatments, so pacing alone is not the answer for us, but without it treatments don't work.

 

[weyland]

We found this to be true of all treatments -- if we paced properly using HR monitors, we made good progress. If we didn't, progress stalled. That was hard when treatments were working so we wanted to do more. Nope. Gotta keep pacing. The good news is that over time we could do more while staying in our HR target zone so we weren't stuck at the same low level of activity forever.

What HR zone did you have to stay in?

 

[bobby]

I forget who said it first, but my favorite is don't do something standing if you could be doing it sitting, and don't do something sitting if you could be doing it laying down.

That's a good one!! Very true, and btw I just broke that rule and am paying for it as we speak...

There is also a subset of people with ME/CFS who don't seem to improve with pacing. I'm not a good pacer but I know that I improve substantially with pacing.

I wonder though... does pacing really lead to improvement? I think pacing leads to not deteriorating. Maybe I'm nitpicking... I'm pretty good at pacing most of the time, mostly because I instantly pay for it when I don't (see above).

Pacing to me leads to more stability in my condition, and less of the up and down. It does mean that I can achieve less than I would if I'd push myself, but it also means I am spared of the really bad lows. So pacing is invaluable, but I wouldn't say it leads to improvement. Cause in my mind that would mean that if you pace hard and long enough, you'll be cured. And I'm sure we've all tried that and failed.

 

[Cort]

That's a good one!! Very true, and btw I just broke that rule and am paying for it as we speak...

I wonder though... does pacing really lead to improvement? I think pacing leads to not deteriorating. Maybe I'm nitpicking... I'm pretty good at pacing most of the time, mostly because I instantly pay for it when I don't (see above).

Pacing to me leads to more stability in my condition, and less of the up and down. It does mean that I can achieve less than I would if I'd push myself, but it also means I am spared of the really bad lows. So pacing is invaluable, but I wouldn't say it leads to improvement. Cause in my mind that would mean that if you pace hard and long enough, you'll be cured. And I'm sure we've all tried that and failed.

I think the studies found that once people started pacing their symptoms went down and their functioning - their ability to do things - went up a bit. I don't think it went up that much but it did improve over what it was when they weren't pacing. I doubt that it means if you just pace and pace and pace that you'll steadily improve. That does happen for some people but not for many I don't think.

 

[bobby]

I think the studies found that once people started pacing their symptoms went down and their functioning - their ability to do things - went up a bit. I don't think it went up that much but it did improve over what it was when they weren't pacing. .

I wonder if I'm the only one who doesn't have that experience... My ability to do certain things goes up, but only because I stopped doing other things (aka pacing). So that to me is not a net increase. I think what pacing mainly does is raise your overall, daily life quality, cause you avoid the extreme lows.

 

[Cort]

I wonder if I'm the only one who doesn't have that experience... My ability to do certain things goes up, but only because I stopped doing other things (aka pacing). So that to me is not a net increase. I think what pacing mainly does is raise your overall, daily life quality, cause you avoid the extreme lows.

I think your experience is probably pretty common... You stopped hurting your body and it recovered to a certain extent but the problem is still there. I imagine that's probably happens to the vast majority of people who pace...

 

[Stella Heath]

[fright]View attachment 1173 [/fright]This woman with fibromyalgia found that she got benefit from D-Ribose but that the benefits were short-lived - until she added pacing to her program. That was when she found real benefits. She certainly wasn't well but she found that she was sleeping better and starting to experience feelings of wellness...



That brought up for me the question of how important pacing is the success of any treatment program. Dr. Lerner was emphatic that his chronic fatigue syndrome (ME/CFS) patients on his antiviral program must be careful about pacing. No pacing - no success. Recently I've been pacing better physically and mentally and feeling better because of it.

It's possible that what happens in our bodies when we overdo it simply overwhelms any progress we might make on many treatments. It's also possible that some treatments are powerful enough so that pacing is not critical to their success.

What is your experience? How important has pacing been to getting benefits from treatments?

• Find Resources on Pacing here

If by pacing you mean adapting your lifestyle to your limitations, I find it's the only way I can maintain a certain standard of living.

Medication leads to allergies, and exercise, however gentle, floors me for days; so I've developed a daily routine of sleep and vigilance, including the observance of a "second sleep". I almost invariably wake up at some time in the small hours, but instead of fretting and worrying when I'm going to get back to sleep, I watch television for as long as it takes for the drowsiness to return.

This second sleep is the most restorative, and if for some reason I can't enjoy it - if I have to get up for an appointment, for example, I function badly during the day, whereas with it, and allowing myself an hour or so between waking up and actually getting up (I do crosswords, visit Facebook etc.) I can have a reasonably productive day (I cook, knit, crochet and take my dogs out, me on my disability scooter)

 

[lisaadele]

I find the pacing thing pretty elusive... I think I've got it figured out and then things change!

I feel like I'm always having to re-figure out the pacing for where I'm at health wise - my winters are different enough for me from summers for example. Or even within a month when we have a lot of weather changes.

It leaves me wondering as well when I have a good stretch if it is because of my pacing or just a period of improvement independent of the pacing. It is confusing.

 

[bobby]

It leaves me wondering as well when I have a good stretch if it is because of my pacing or just a period of improvement independent of the pacing.

I've wondered about this too... I guess we'll never know!

 

[Veet]

I wonder though... does pacing really lead to improvement? I think pacing leads to not deteriorating....I think what pacing mainly does is raise your overall, daily life quality, cause you avoid the extreme lows.

This is what it seems for me.

 

[PamJ]

I don't know, because I haven't found any treatments that work much. I MUST pace, or I'm miserable. But treatments I try either do nothing, or they work for a short time then stop, or require a higher dose for the same benefit.