Good Days v/s Bad Days?

[VeganMonkey]

Does anyone here have changes in how they feel? For me it's strange it goes up and down and there is no way to predict it. I have times where I feel kind of 'good', not like a normal person of course but good that I can do more than usual. Other days I'm bedridden or don't even wake up (in winter I can sometimes sleep 48 hours in a row where I only get up for one hour to eat and drink, and also interrupted sleep for 5 minutes to go to the bathroom)

In the old criteria for ME/CFS they said that it common but not anymore. I don't know why they have taken it out. Is this common to feel like this with ups and downs?

 

[vamah]

I think it is. My ups and downs are not as dramatic as yours, but I certainly have them. Sometimes they follow a predictable pattern -- I have a day where I'm feeling better, overdo it and then crash for several days. Other times the ups and downs seem to be without cause.

 

[Sparrow]

As far as I know, this is perfectly normal. But the current consensus tends to be that the bad days are the result of trying to do too much in the days before. If you cut back your activity level overall, you should find that you're able to keep a more consistent level of functioning (which seems to be the advice from most experts now).

 

[roxie60]

Sounds like my experience. Who said this was not part of the 'illness'? Do you have a link. That is what has been so dang frustrating, I cant predict one day to the next (sometimes one hour to the next) how I'm going to feel or if I'll be able to do anything. After reading Sparrow's comments I agree. I have been on leave and cutting back the number of tasks and exertion has helped me feel a little better. However being someone who use to multitasks, get a ton of things done each day this has been a frustrating adjustment.

 

[golden]

As far as I know, this is perfectly normal. But the current consensus tends to be that the bad days are the result of trying to do too much in the days before. If you cut back your activity level overall, you should find that you're able to keep a more consistent level of functioning (which seems to be the advice from most experts now).

For me, I just dont think this is true.

The theory is energetically each day you are credited with £10 pounds (worth of energy )

You are told to spend it wisely, perhaps leaving £5 pounds left.

Then the next day, you can begin with £15 pounds....and so on.

Utter rubbish in my experience.

Not only do the rules change and i am not consistently given a starter £10 fund automatically each day ...

I find sometimes that i have my £10 - and if I dont make the most of it and spend it all that day...
It just gets cleared anyway....(it doesnt build up )

The common idea that we stop ourselves doing what we can do today , so that we can save ouselves for tomorrow and find each day energy is more even - i just dont find this to be true in practice.

Sorry for the silly analogy.

 

[golden]

I also dont use the phrase 'ups and downs' because its too easy to plaster negative connotations onto it...

But in practice, feeling the energy its more appropriate to describe an an 'ins and outs' , an expansion and contraction of energy.

When its expanded i can do more.

 

[Sparrow]

For me, I just dont think this is true.

The theory is energetically each day you are credited with £10 pounds (worth of energy )

You are told to spend it wisely, perhaps leaving £5 pounds left.

Then the next day, you can begin with £15 pounds....and so on.

Utter rubbish in my experience.

Not only do the rules change and i am not consistently given a starter £10 fund automatically each day ...

I find sometimes that i have my £10 - and if I dont make the most of it and spend it all that day...
It just gets cleared anyway....(it doesnt build up )

The common idea that we stop ourselves doing what we can do today , so that we can save ouselves for tomorrow and find each day energy is more even - i just dont find this to be true in practice.

Sorry for the silly analogy.

I think your analogy's fine. It's tough to find something that sums up our experience exactly.

I think what you took from what I said wasn't quite what I intended. For me, I get my $10 a day of energy (since my funds are Canadian ). If I choose to save $5, the next day I will still get only $10 on waking. Maybe $11. But there's a definite cap on how much I can save (i.e. I couldn't just lie still for a week and then go hiking or something). There's a baseline of activity that my body can handle, and whatever I do, it will try to normalize itself back to that baseline. If I really overdo it badly or consistently, my baseline shifts downward permanently. If I'm really good about resting consistently over a long period of time, my baseline will shift slightly up permanently (though unfortunately the trip down seems much faster than the trip back up). I'm finding that now that I've been better about only spending $5 or so consistently every day (and not too much in any one place), the amount that I receive each day is very slowly increasing over time. My baseline functioning now is much higher than it was a year ago. When I was trying to spend $8-$10 per day, I was on a roller coaster of functioning, and I wasn't improving much at all. Before that when I was going into debt, I was getting very quickly worse.

I don't think we can save ourselves one day and therefore do more the next. I think we can save ourselves one day and therefore not crash, or avoid triggering debilitating and unpleasant symptoms. And that avoiding crashes allows healing to happen very slowly over time. At least, this has definitely been the case for me. It just took me a really long time to realize that even when I felt like I was "still okay", I was really still overdoing it a lot.

The problem is that we don't get any savings, and if we go into debt, we can't just pay it off by scrimping the next day. It's the kind of debt where when you don't pay up, some large scary man comes to break your kneecaps.

 

[Sparrow]

Sounds like my experience. Who said this was not part of the 'illness'? Do you have a link. That is what has been so dang frustrating, I cant predict one day to the next (sometimes one hour to the next) how I'm going to feel or if I'll be able to do anything. After reading Sparrow's comments I agree. I have been on leave and cutting back the number of tasks and exertion has helped me feel a little better. However being someone who use to multitasks, get a ton of things done each day this has been a frustrating adjustment.

It's been a hugely frustrating adjustment for me as well. I think it probably is for everybody. And it came with a period of mourning of what I've lost. When it feels like we're already doing so very little, cutting down even further is brutally hard. I still can't always manage it either, even knowing how much it has helped me overall.

 

[Seven7]

I am so glad I am not alone, if you read my blog you can see I can go from a 9 to a 3 and back and forth like nothing, I felt a weird case because I crash and back up again. I live a pretty unstable unpredictable life, which makes it hard for work and normal life and people around me to understand me.

 

[golden]

Sparrow

I know what you mean - thanks for taking the time out to further explain.



The definition of normal would be to 1) Be able to save and 2) Even if you go into debt and push yourself to minus £10-or£20 - and all one would feel is 'normal' aches and pains for a day or two ???

And then one would be recovered again -as new.

'Normal' Is also having the ability to dip into debt when the need arises without too much difficultu or 'payback'.

i have experienced the quick deterioration from 'debt' mode.

But I was never a 'burning the candle at both ends ' type. I was never overdoing it to begin with.
I was also never a perfectionist or 'driven' type.

I am trying to put what is normal into my new silly analogy ha ha as its a practical way I can understand it.

Normal people also maybe get £50-100 each day to start with...

I have a more confusing analogy too describing M.E. and its the ten different stages my clothes are left in. I cant even conceive of what an iron is for these days

 

[VeganMonkey]

It's quite like The Spoon Theory. But for me each day I get handed out different money even if I have been resting or pacing myself. In summer I get more money, in winter nearly nothing. But then suddenly out of the blue I can have days whe there is a bit more for no reason. Or less. Frustrating. Even after a gazillion years living like this (since I was little, so I don't know any better) it's still annoying. Except in better times, then I can have peace with it, but not in the very bad times.

 

[Creekee]

The problem is that we don't get any savings, and if we go into debt, we can't just pay it off by scrimping the next day. It's the kind of debt where when you don't pay up, some large scary man comes to break your kneecaps.

Exactly! You can go backwards immediately, but forward progress only comes at a very slow pace.

I used to get so frustrated that we were supposed to follow "the 80% rule." On any given day, use only 80% of your available energy. What lame advice! As far as I ever figured out, the only way you know what 80% is, is to hit 100% and crash and burn. And wallow in regret!

My latest approach is to map an active/inactive schedule each day. I will work a maximum of 30 minutes, then lay down for 20, no matter how strong I feel. Or work an hour and lay down for 30, if I'm having a really good day. That seems to have overcome the inevitable failure of having to divine that ethereal spot where I've gone too far. I'm much happier with this strategy. Frustration is low and energy is improving. It's a keeper for me.

 

[VeganMonkey]

I'm doing that too, so far I do not know if it helps but that's because I am having trouble with a broken back, the pain causes a lot of energy. So I'm not my normal self, makes it hard to compare.

I have been reading through ths thread:
http://forums.phoenixrising.me/inde...-ehlers-danlos-syndrome-stretchy-veins.20351/

and some peope think it is being upright that causes the problem rather than just any energy use. Creekee have you thought of doing the work (if you can) lying down rather than sitting or standing up and see if that makes any difference? I have been trying it out for a while now (since I broke my back) and for computer work (I use an iPad) it works, it also makes a huge different for my back pain.
But I have to wait till my back is fully healed (takes 2 years) to really be able to judge it well of course.

Anyone else tried this?

 

[Creekee]

I'm doing that too, so far I do not know if it helps but that's because I am having trouble with a broken back, the pain causes a lot of energy. So I'm not my normal self, makes it hard to compare.

I have been reading through ths thread:
http://forums.phoenixrising.me/inde...-ehlers-danlos-syndrome-stretchy-veins.20351/

and some peope think it is being upright that causes the problem rather than just any energy use. Creekee have you thought of doing the work (if you can) lying down rather than sitting or standing up and see if that makes any difference? I have been trying it out for a while now (since I broke my back) and for computer work (I use an iPad) it works, it also makes a huge different for my back pain.
But I have to wait till my back is fully healed (takes 2 years) to really be able to judge it well of course.

Anyone else tried this?

OMG, VeganMonkey, TWO YEARS? I am so sorry. Can't even imagine how you're coping. How did you hurt yourself so badly, if you don't mind me asking?

When I was at my worst, I only worked laying down. I'm fortunate that my work is all done on the computer. My sweet husband bought me a new laptop so I could lay in bed with laptop on tummy and do at least a little bit of client work most days. I ended up spending seven months earning money on my back (!).

And you're right: now that I'm doing better I'm very suspicious that it's standing that is my biggest problem. I'm still having trouble showering; almost always have to lay down afterward for a little recovery period. Waiting in line at a store is the kiss of death. Definitely need to explore this more.

The other thing I'm getting concerned about is the toll all this inactivity is taking on my body. I'm starting to notice visible muscle loss. Had low creatinine on a recent blood lab, which could indicate muscle loss. But I don't feel like I'm well enough to start exercising. Or maybe I'm just too terrified after crashing myself this last time. Is there a word for fear of exercise? Shake-your-bootie-a-phobia? How are handling your own inactivity while your back heals?

 

[VeganMonkey]

Creekee, just very stupid, I can't see well so I stepped on something in the tram and slipped. At that moment I didn't feel pain, that started only the next day. I got misdiagnosed two weeks later and 3 weeks later found out it was broken. It hurt like hell. The inactivity is taking its toll now, I think my muscles started to atrophy. It's a year ago so I got another year to go. It's a lot better but still bad enough that I don't have any energy, the pain and healing process seem to take every last bit out of me. Plus it's winter here and in winter I'm often quite ill.

 

[golden]

Summer issue an expansive energy and winter a contractive one

I am worse in winter -

I am sitting out in sun - its been an everlasting winter this one

Thats awful that its Winter where you are .... i am dreading winter coming again

 

[Snowdrop]

I can't wait for the day when science finally helps us sort this out. The range of ways ME manifests itself is broad. I have been sick for a very long time. It has certainly been my experience that I could feel like I was functioning reasonably well (for me, but not like my peers) and then could not sustain that level of functioning.

At first, I was still well enough that when I pushed too hard it would result in my needing extra sleep. But as the years went on and I tried to function as optimally as I could I would succumb to insomnia instead of sleeping alot (wired but tired).

I have noticed over the years as I have tried too 'fight' giving in to the fatigue (I didn't know what was wrong with me) that it has not just exacerbated the fatigue and pain but increased a whole variety of neurological symptoms (although it could be that it would have somewhat progressed over time anyway, I suppose).

Like others, I've noticed the difficulty (in the past) with functioning in winter. Now however, with my body having very poor temperature regulation I find summer heat to be worse.

I don't know how long you've been sick but from what I now know I think I would have benefitted from being more careful to think about how stressed I was and find ways to incorporate ways of reducing that stress.

Does anyone here have changes in how they feel? For me it's strange it goes up and down and there is no way to predict it. I have times where I feel kind of 'good', not like a normal person of course but good that I can do more than usual. Other days I'm bedridden or don't even wake up (in winter I can sometimes sleep 48 hours in a row where I only get up for one hour to eat and drink, and also interrupted sleep for 5 minutes to go to the bathroom)

In the old criteria for ME/CFS they said that it common but not anymore. I don't know why they have taken it out. Is this common to feel like this with ups and downs?

 

[ahimsa]

... some people think it is being upright that causes the problem rather than just any energy use.

Hi VeganMonkey,

If an ME or CFS patient has some type of Orthostatic Intolerance (POTS, NMH/NCS, etc.) then posture will definitely cause problems. It's not just that "some people think" being upright is part of the problem.

There are a lot of research studies supporting this point. Not all ME or CFS patients have this problem, of course. But those who do can at least try to treat it.

The only debate that I know about is over how big of a subset of patients have this problem. And one could argue the point about whether it is co-morbid diagnosis or is an integral part of ME or CFS. It's not included in some diagnostic criteria but it is one of the optional criteria in the Myalgic encephalomyelitis: International Consensus Criteria

Cardiovascular: e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

So, co-morbid vs. integral part is another possible debate.

But whether it's a co-morbid condition, or a part of ME, or a completely alternate diagnosis (Orthostatic Intolerance instead of ME), there is no doubt that Orthostatic Intolerance has been proven to cause symptoms. It's not just a theory.

Since you mentioned that thread about EDS perhaps that's where you first read about Orthostatic Intolerance? I just thought I'd mention that EDS is only one cause/contributing factor for OI. There are several other possible causes. A patient can have OI without having EDS.

No matter what the cause, autonomic problems in ME/CFS patients (also Fibromyalgia patients) have been known about for a while. I got my diagnosis of OI back in 1995, for example. For those who have missed out on reading about autonomic dysfunction there's a forum section called "Problems Standing: Orthostatic Intolerance; POTS" here:
http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/

I hope I did not ramble on too long and that this is helpful for someone out there!

 

[VeganMonkey]

Since you mentioned that thread about EDS perhaps that's where you first read about Orthostatic Intolerance? I just thought I'd mention that EDS is only one cause/contributing factor for OI. There are several other possible causes. A patient can have OI without having EDS.

No matter what the cause, autonomic problems in ME/CFS patients (also Fibromyalgia patients) have been known about for a while. I got my diagnosis of OI back in 1995, for example. For those who have missed out on reading about autonomic dysfunction there's a forum section called "Problems Standing: Orthostatic Intolerance; POTS" here:
http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/

I hope I did not ramble on too long and that this is helpful for someone out there!

Yes I heard different theories from my doctors, it gets really confusing! One said that POTS/OI can be caused by a problem in the brain stem where things get regulated, so then you'd get issues with body temperature (which I have) and things like POTS/OI and heart rate issues.

I'm just checking every angle to figure out what it causes it for me. Maybe it's not just one thing that causes it on me? Who knows. I'm not sure if EDS patients have body temperature issues.

What is pretty weird with me is that most POTS/OI people don't tolerate warm weather well. I don't tolerate heat as in hot baths and hot showers, they make me crash instantly, but warm weather (of temperatures that other might find hot) does me good. Pains disappears and my blood flow seems a bit better. Plus some more energy than in winter. In winter last couple of years and this year I'm mostly bedridden and sleep crazy amounts. I always sleep many more hours per day in winter.

I have been ill for a very long time (it started 32 years ago with a very small symptom, brainfog, and got ill 6 years after my first symptoms) and it has been a downwards going thing, but with ups and downs, but if I compare decades or even blocks of 5 years I see a tendency of it going down.

Does anyone recognise these things?

 

[ahimsa]

Yes I heard different theories from my doctors, it gets really confusing!

I hear you. I keep reading all sorts of different theories for what causes Orthostatic Intolerance. And they keep using different names, too. So, it's complicated.

A brief rant -- some of the OI research seems to focus too much on syncope (fainting). Some of the research papers seem to imply (and maybe I'm reading them wrong) that if the patient's not fainting any more then there's no more problem. But what about the patients who have POTS or NMH/NMS/NCS without any fainting? We just get all the crappy symptoms, too sick to work or do anything at all, but many of us never actually faint "in real life" (only on the tilt table test).

Don't get me wrong. I am very happy that I don't faint. I'm so glad I don't have the risk of injury from that kind of fall! But not fainting does equal recovered or well. I'm still disabled. Even with treatment I still can get those terrible pre-syncope symptoms of nausea, dizziness, rapid heart rate, etc. It's just that there's enough time for me to sit down before I faint.

One said that POTS/OI can be caused by a problem in the brain stem where things get regulated, so then you'd get issues with body temperature (which I have) and things like POTS/OI and heart rate issues.
I'm just checking every angle to figure out what it causes it for me. Maybe it's not just one thing that causes it on me? Who knows. I'm not sure if EDS patients have body temperature issues.

It does seem that some folks might have multiple factors contributing to the problem so it makes sense to look into all of them.

What is pretty weird with me is that most POTS/OI people don't tolerate warm weather well. I don't tolerate heat as in hot baths and hot showers, they make me crash instantly, but warm weather (of temperatures that other might find hot) does me good.

That's interesting that warm weather does not bother you.

I'm one of the more typical patients, I guess, since I always like temperatures that range from cool to cold. But if I get too cold then I can start shivering and won't warm up properly. So, I do have to watch that.

I have been ill for a very long time (it started 32 years ago with a very small symptom, brainfog, and got ill 6 years after my first symptoms) and it has been a downwards going thing, but with ups and downs, but if I compare decades or even blocks of 5 years I see a tendency of it going down.

VeganMonkey, I'm so sorry to hear that you've been sick for that long! Sending you some extra hugs for the day...

My illness has not lasted quite that long (got sick in 1990). But it was the worst for me near the beginning, back in mid to late 1991. There does seem to be a slight downward trend for me over the last 8-9 years but I am still not at my worst. On really bad days, when I am searching for something positive, I will think to myself, "Well, at least I'm not as bad as I was in 1991..."

I'm sure I'm rambling again (I have some sort of flu...woke up with a fever of 100.5 this morning) but I needed a distraction so I thought I'd come on the forums.