Creating a Surplus

[Mij]

I had no symptoms at all when I was jogging. The symptoms hit me around 3 weeks later.

How did you feel between the time you jogged and the three week period? Do you think this was the distinctive PEM symptoms that you experienced or symptoms in general?

 

[Dr.Patient]

How did you feel between the time you jogged and the three week period? Do you think this was the distinctive PEM symptoms that you experienced or symptoms in general?

Completely normal while I was jogging for the whole 3 weeks, and at the end of that, was down with fatigue, and couldn't leave the house.

 

[WillowJ]

For me it is the opposite - better mental health with keeping physically active. When I was pacing and resting I found that I would be feeling sorry for myself all of the time.

Might have related to too much activity in that particular paper (as in, GET will be an actual cure... pretty sad when it turns out it's not a cure and/or too much activity makes one worse).

And yes, I understand not being able to do things is discouraging. Finding something I can do (however little, and for me usually not physical, as I am not well enough any more) is a help to me, too.

 

[SwanRonson]

@SwanRonson you have a higher threshold than most of us, but a lot of us in the early part of our illness were at your level. If you continue walking they way you are now, you will end up like us where even your mailbox seems like 5 miles away. I would suggest finding nonphysical things to not make you feel lousy.

Thanks much for the advice and concern. It's really appreciated.

Just for clarity, I mean that I get a mile in over the course of an entire day. I have a desk job, but it's an IT support job, so I have to walk around off and on during the day. Usually I look at my pedometer when I get home and it's right around a mile. If I had to walk that mile all at once I could, but I'd really regret it. And it better be really important.

The only way I could walk 5 miles is if my wife or kids lives were at stake. If it were my life at stake it'd be iffy. I was just using that as an example of something that would be way too much.

I just looked at my iphone and it says 1.09 miles today. Most of that came from going to get groceries tonight. By the time I got home there was nothing left in the tank. My kids had to bring them in from the car.

BTW, I have a love/hate relationship with my job. We are a single income homeschooling family, so I have to work or go on disability. Some days I'm really jealous of CFS people who have a spouse that brings in the money so they can set their own pace. That alarm clock every morning is torture. But, at the same time, I worry that if I didn't have a job to push me to some mild level of activity that I'd just stay in the bed all day. And everybody says that's not good either unless you have no choice.

Sometimes you have to make your own grass green, rather than thinking about what other people have I guess.

 

[alex3619]

I have a desk job, but it's an IT support job, so I have to walk around off and on during the day.

This is an entirely different thing from walking a mile. In fact, this is how many of us pace ourselves, though a mile is beyond what the more severe can do safely. A little walk, another little walk, it adds up. In fact, this is a form of pacing in my view. Alternating activity and rest is something that can help us, and is supported by science.

 

[Valentijn]

Wow. That was unnecessary.

You're right, and I apologize.

That said, I think it's extremely important to distinguish between "I feel better if I walk a mile daily", and "I walk up to a mile total throughout the course of the entire day" as you eventually clarified in a later post. The latter is pretty normal in mild-moderate ME/SEID, but the former sounds a lot like the "exercise makes you better" claims which certain pro-psychosomatic groups heavily promote, and which have damaged a lot of ME/SEID patients.

My symptoms fit the new 4 out of 5 diagnostic criteria for CFS, but finding a CFS aware doctor is hard, so I have no diagnosis yet.

Presuming one of those symptoms is PEM (exacerbation of immune and neurological symptoms after an excess of exertion, usually delayed by about 24 hours), you really need to see your doctor and start getting your symptoms recorded. If things get worse, you're going to be dealing with leaves of absence, disability applications, and fighting with a lot of people who are out to prove that you don't have a physical illness.

For my first 6 months or so I was going to class 4 days per week, and doing volunteer work the 5th day. I was walking 1-2 miles per day, in the process of taking buses and trains. It was not sustainable, and by the 12 month mark I wasn't able to do any of that without being laid out for several days afterward.

It's important to be prepared for that to happen, and a diagnosis from your doctor, and their careful recording of your symptoms, is one way to prepare. It can also be very helpful to get further investigation and rule out other diagnoses, especially if you aren't 100% sure if you have PEM. There are a lot of other disease which feature exercise intolerance, and many/most are treatable, and some NEED to be treated promptly to avoid complications. And many ME/SEID symptoms can at least be treated on their own merits, which also might help improve your prognosis.

What I said is no different than what a few others in this thread have said, so I have no idea how it could be construed as dangerous.

There are a couple of people in the thread without PEM, and who accordingly do not have ME/SEID. They have said as much in previous posts in different threads. They are heavily pushing some nasty psychological theories which have coincidentally been proven incorrect repeatedly in published research. They are the reason myself (and probably others) are hypersensitive to claims that any amount of exercise makes any ME/SEID patient feel better.

 

[lansbergen]

This is an entirely different thing from walking a mile. In fact, this is how many of us pace ourselves, though a mile is beyond what the more severe can do safely. A little walk, another little walk, it adds up. In fact, this is a form of pacing in my view. Alternating activity and rest is something that can help us, and is supported by science.

I agree.

 

[Mij]

I can relate and agree with @Valentijn experience. During the initial stages of this illness "pacing" as @SwanRonson describes was not working for me when I was going to school and working. I was just hanging on, I never felt that sense of, "ok, I feel a little more restored now" even though I was sitting or just doing short walks from here to there. I don't feel it's the same type of physical and mental pacing as we are describe presently; when you can takes breaks for days or as long as you feel the need. When you are working and have commitments, you are always "on". Just knowing that you have to get up for work drains the brain and adrenaline supply. I was saddened to quit my job, but at the same time I was relieved! I also feel that if I would have quit earlier I would have been better off long term.

I think it also depends on what is the underlying cause of the illness.

Some of us can continue to work part-time at a job that is not too demanding. If you have family help at home it certainly helps. Some of us can work again with treatments and being self employed.

 

[taniaaust1]

A few things I noticed when I was pacing and resting a lot was that my brain fog increased considerably and my sleep was much worse.

Interesting as Im the opposite with both those two things. The more rest the better I can sleep and the less brain fog I have.

Pacing is a natural reaction to our symptoms, so it's counterintuitive and difficult to avoid doing especially because we are constantly reminded that stress exacerbates symptoms. The key, I've found, is to adopt a mindset of resolve, resilience and confidence and not worry about 'crashes' at all.

Wow, Id be in hospital all the time if I did that!!, I end up there too often now when I over do being on my feet too much etc. (You should try standing when your BP has ditched to ZERO or is up to near 200 due to the autonomic dysfunction of ME.. it can get very dangerous!!) I don't think you have the same illness I do. In my case its nothing at all to do with resolve or resilience.

Ive had my optic discs swell due to the orthostatic hypertension some of us get with this disease when standing which puts me at risk of blindness.. hospital dr very worried about my kidneys as my blood test showed they were starting to show damage during one of my collapses due to the low blood volume I get. If some of us don't pace well, we could end up dead.

Pacing is more then a "natural reaction", for most ME patients (or all?) it is essential and in fact the pacing we do at times is anything but "natural" as we are having to cut back far more then what we really want to do so we don't end up in hospital or bedbound.

If just a "mindset of resolve, resilience and confidence" gets you through without making your whole condition worst, I don't think you could have ME." CFS but not ME. Here's a question I have cause Im curious. Do you think you fit into the new SEID definition? (I have serious concern over that definition being too vaguish and Im suspecting that you will say yes).

I had an episode tonight where my HR went into the 160's (this used to occur in my sleep but I was fully awake for this one.) When I get severe autonomic issues like this, I really am not sure if any amount of pacing would make any difference.

It is also incredibly difficult to just rest when you have a family and commitments. But I rest every single day and use a wheelchair every time we go out. Sometimes I feel if I rested anymore I would be bed bound which would make me feel more depressed and more excluded from the tiny amount that I do now.

Gingergrrl.. There are some symptoms of this which pacing doesn't help (well at least for me) Aggressive rest therapy doesn't fix my autonomic dysfunctions..eg IBS and the BP stuff which kicks in very fast (eg my BP can ditch to 0 or ditch to near 200 in abound 1 minute of being on my feet (though I can avoid a POTS collapse by not staying upright too long so pacing in a way with that). Also unless the whole ME is improving at baseline level with more rest, it also doesn't help FM, MCS or the food intollerances.

So if autonomic dysfunction is your worst symptom causing issues, you may not notice improvements as much then someone who hasn't got this as their top ME symptoms..

Pacing though in my case really stops the immune kind of flare and all the symptoms that causes.. fever, sore throat, headache, fatigue, cough etc. It's like it stops the virus??? thingy activating and hence making my ME worst through that (which of cause long term "may" help the autonomic system? if it was under attack of something but it wouldn't be noticeable it helping that short term)

 

[Gingergrrl]

Gingergrrl.. There are some symptoms of this which pacing doesn't help (well at least for me) Aggressive rest therapy doesn't fix my autonomic dysfunctions..eg IBS and the BP stuff which kicks in very fast (eg my BP can ditch to 0 or ditch to near 200 in abound 1 minute of being on my feet (though I can avoid a POTS collapse by not staying upright too long so pacing in a way with that). Also unless the whole ME is improving at baseline level with more rest, it also doesn't help FM, MCS or the food intollerances.

So if autonomic dysfunction is your worst symptom causing issues, you may not notice improvements as much then someone who hasn't got this as their top ME symptoms..

@taniaaust1 Thank you for validating this and it is true, I can be resting and pacing perfectly and still get an episode of very high tachycardia or low BP and am constantly wondering what I did wrong or what I could have done differently?

Some things are obvious as in typing is making my neck and arm pain worse but I am choosing to do it right now any way b/c I am stubborn. But some things are not obvious (at least for me) and just seem random!

Sometimes I do wish my top ME symptoms were not autonomic/cardiac related and then I might have a better chance of walking without the wheelchair.

In general, I do not get sore throats and some of the other PEM symptoms that are very common for people. But I did have a constant "sickly fatigue" prior to taking Famvir that is now gone so this may be the reason why.

 

[Misfit Toy]

I pace and rest only because I have no choice. There are times where I'm just so tired that that's where it's at. But what's interesting is that the more I lay around, sometimes the worse I feel. I wake up in the morning feeling like death. I woke up and my heart was beating fast and for what reason? I've been lying in bed for 6-7 hours.

Sometimes I find there is no rhyme or reason to this thing. There have been times where I've been tremendously busy and have crashed the next day but not too bad and then there's been times where I have done hardly anything and I crash.

I spend many days indoors watching TV or resting. But even on days where I feel horrible it always makes you feel better to be a little active. I think the endorphins from taking a small walk help with my pain but also getting out in the sun boosts my mood.

Being indoors all the time reminds me of how sick I am which only makes me feel worse. So I think there has to be a balance.

For some people there is just no choice. Some people have to do nothing. That makes sense. For me, doing nothing can drive me absolutely crazy and make me feel worse. Plus, moving and walking helps my pain.

If I have a good day I enjoy it to the fullest. We only get one life and since my good days are so infrequent I plan on enjoying them to the max.

Plus, for me, too much pacing means that I am obsessing about this condition and should I pick up the salt-and-pepper shaker, or should I not? Will drive me nuts. I don't want to think about this condition all of the time. Sometimes you just need to do and not think. Having said that, I'm not talking doing anything "normal" either...like skiing. That's out of the question.

For me, this illness is so bizarre. Last week I had a day where I was in bed all day and in horrible pain. Two days later I had no pain and I had energy, a lot of energy. Why? I just don't get it. How can one go from being on deaths door to having a semi-life for a day? I always feel like I'm being tricked.

 

[cmt12]

Wow, Id be in hospital all the time if I did that!!, I end up there too often now when I over do being on my feet too much etc. (You should try standing when your BP has ditched to ZERO or is up to near 200 due to the autonomic dysfunction of ME.. it can get very dangerous!!) I don't think you have the same illness I do. In my case its nothing at all to do with resolve or resilience.

Ive had my optic discs swell due to the orthostatic hypertension some of us get with this disease when standing which puts me at risk of blindness.. hospital dr very worried about my kidneys as my blood test showed they were starting to show damage during one of my collapses due to the low blood volume I get. If some of us don't pace well, we could end up dead.

Pacing is more then a "natural reaction", for most ME patients (or all?) it is essential and in fact the pacing we do at times is anything but "natural" as we are having to cut back far more then what we really want to do so we don't end up in hospital or bedbound.

If just a "mindset of resolve, resilience and confidence" gets you through without making your whole condition worst, I don't think you could have ME." CFS but not ME. Here's a question I have cause Im curious. Do you think you fit into the new SEID definition? (I have serious concern over that definition being too vaguish and Im suspecting that you will say yes).

I know this is a sensitive topic and I'm reluctant to pursue it further because what would be the point of discussing something if it isn't productive and just offends people right? With that said, I do feel like I have enough shared experience and insight to be potentially helpful.

After getting over the denial stage, I spiraled downward which took awhile to get out of. It hurt to move, I wore ear plugs all the time and lived in darkness due to sensory sensitivity, and there were times I remember that I couldn't even look at a computer monitor for a moment without being severely affected. And yes I do have PEM and all other necessary symptoms of this condition FYI .

That pain is 100% real. The problem of deconditioning IMO is not that you mentally create that pain or exaggerate it; the problem is that it prevents you from developing a pain tolerance.

This condition puts us in a continuous pain state as evidenced by the sympathetic nervous system activity. The result is that our natural protective mechanism to avoid pain is turned up full blast. Take an extreme example of smashing your finger. After you've smashed your finger, everything bothers you right? At that moment, you just want to get away from everything that you are sensitive to until the pain subsides.

The way I climbed out is to adopt that mindset that I mentioned in order to build up my pain tolerance to the point where I was no longer as sensitive. You have to fight to override that instinct constantly, to not recoil and stand your ground, which means you have to be conscious of it all the time. Don't get me wrong, I still avoid stress and over exertion but my baseline is way better than it was when I was struggling.

 

[ahimsa]

I woke up and my heart was beating fast and for what reason? I've been lying in bed for 6-7 hours.

Just a thought (and this may not be true for you since everyone is so different!) but when that type of thing happens to me during sleep it is usually delayed payback from overdoing it. It's a form of PEM from something I did 1-3 days earlier (either overdoing it, getting overheated, forgetting my midodrine, something like that).

In my case it appears to be part of the OI or autonomic dysfunction. When I rest more my sleep problems are somewhat reduced. But, of course, it could be something different in your case!

I do have my share of unexpected ups and downs where I can't figure out the cause. And I completely understand the struggle to balance resting enough and pushing through symptoms. If I rested all the time I would go stark raving mad.

When I was so sick that walking across the room was a struggle there was not much choice. But ever since I improved from that point I've been searching for the right balance between resting and activities (whether tasks or fun things). It's a struggle.

Plus, for me, too much pacing means that I am obsessing about this condition and should I pick up the salt-and-pepper shaker, or should I not?

Luckily, I have never run into a problem with obsessing over little things like that! I agree that it's wise to avoid that kind of thing.

I just make a decision, based on how I'm feeling that day (and maybe the last few days before that), and I hope for the best! And even then my so-called "plans" for what to do that day often change. It's definitely not an exact science.

 

[Misfit Toy]

@ahimsa -A lot of times for me it can be hormonal. Yesterday I took a two-hour nap after I went to acupuncture. I really didn't do much of anything yesterday and I was exhausted last night after my nap. You would think I would go to sleep easily because of having more sleep but I was up half the night awake due to that nap. But sometimes I just can't keep my eyes open.

I probably write more here than anyone about hormone dysfunction. But my hormones are mess and it's that time of month and I just stop sleeping. So then I crash. Hormones, night sweats, insomnia.....oh my! My hormones are the biggest catalyst in keeping me Ill.

 

[ahimsa]

@Misfit Toy, sorry to hear that you have hormonal problems. At least you have some idea what's causing the problems. That's small comfort, though, I'm sure.

Speaking of naps, for some reason I can never sleep during the day.

Bringing the thread back on topic (since I veered off topic earlier...), the term pacing *for me* means resting but not sleeping during the day. I only sleep at night.

I know I've see ME/CFS patients posting about taking naps but I don't know whether that is the minority or the majority. Anyone know? Is that part of pacing for most folks?

 

[Valentijn]

That pain is 100% real. The problem of deconditioning IMO is not that you mentally create that pain or exaggerate it; the problem is that it prevents you from developing a pain tolerance.

You just really have no idea what ME/SEID is. We tolerate a great deal of pain every day. Amounts of pain that freak out healthy people are the norm for many of us. We are not experiencing the same amount of pain as being more intense - rather we are desensitized to it and usually ignoring it.

Pushing at those activity limits does not reduce pain. It increases it drastically, as well as other ME/SEID symptoms. If we let our muscles rest, pain subsides. If we use the muscles steadily, they ache. There is no relevant deconditioning or sensitization.

 

[lansbergen]

With that said, I do feel like I have enough shared experience and insight to be potentially helpful.

Your posts show you have no idea what ME pain is.

 

[jeff_w]

I would guess that there is a high correlation of those that are or near bedridden with the belief in the efficacy of pacing.

The key, I've found, is to adopt a mindset of resolve, resilience and confidence and not worry about 'crashes' at all.

@cmt12

As someone who spent over 6 months bedridden with ME/CFS, I know this isn't true. When I was bedridden, there was nothing that was psychologically causing it.

I am now no longer bedridden as a result of antivirals, numerous other medications and supplements, and resting and pacing.

You have your theories about ME/CFS, and I know you catch a lot of flack for them. I don't want to ream you, because you seem to be trying to help, which is cool. However, you are (unintentionally) insulting many people, over and over -- in several other threads, too. It seems as though you haven't lived one day of your life with ME/CFS, yet you impose your view of this illness on people who live this life everyday. I don't know what your deal is.

Your statement that I quoted above, about bedridden people, was just so off-base. Severe ME/CFS is sheer hell that has nothing to do with someone's belief systems about pacing. I knew nothing about pacing when I first became bedridden. Your statement sounds like it came straight from the mental health professionals who believe that ME/CFS is not real. What you wrote is also dangerous, as it could mislead newcomers to believe that they are bedridden for psychological reasons.

It is very clear that you've never been bedridden with this illness. Only someone entirely ignorant of that experience would have posted what you did.

 

[Mij]

@Misfit Toy, sorry to hear that you have hormonal problems. At least you have some idea what's causing the problems. That's small comfort, though, I'm sure.

Speaking of naps, for some reason I can never sleep during the day.

Bringing the thread back on topic (since I veered off topic earlier...), the term pacing *for me* means resting but not sleeping during the day. I only sleep at night.

I know I've see ME/CFS patients posting about taking naps but I don't know whether that is the minority or the majority. Anyone know? Is that part of pacing for most folks?

I'm not sure if I would call napping pacing. There are days when I need to sleep during the day, sometimes even a few hours after I've had breakfast, this I attribute to my immune system acting up.

Sometimes pacing can be planned and sometimes I need to stop and lie down because I'm beginning to slur my sentences or my gait is off. I really **try** if I can, to stop and lie down before I feel symptoms. It takes a lot of discipline and knowing your limits, this takes time to understand. The first 5 1/2 yrs of illness I was horizontal most of the day but I didn't feel any better for it and it was very discouraging. I hit a 'turning point' at the 6yr mark.

 

[cmt12]

I would like to see a thorough discussion on this forum about whether ME is degenerative. I did a search and couldn't find much.

The progression from non-symptomatic to symptomatic is fluid of course, but once one is fully symptomatic, do people believe that it is degenerative? To me, that would be a tough argument to make.

That's kind of the heart of the disagreement here right? You guys must believe it is degenerative?