Good days, bad days

[confetti11]

For all of you out there who've studied this at length (which is everyone I'm sure)...can you tell me what is the reason behind the good day, bad day pattern? I know you can over exert yourself on a good day and then obviously follow it with a bad day...but what about when your activity level is the same? What's going on in the body, do you know? Is it an adrenal pattern? I'm in a backslide and so frustrated with thinking I'm doing better, only to be incredibly uneasy and ill the next day. Talk about not being able to plan anything. Yet, I remember this pattern before. But it's so discouraging because it feels like you just can't get better.

 

[TigerLilea]

Most of the time I have no idea what causes my bad days. I've come to accept that this is a part of CFS/ME that I have no control over and is one of the reasons why I could never work at an outside job.

 

[Snowdrop]

I expect that, apart from PEM after overexertion the experience of random bad days is simply part of the disease process and possibly progression. Because of all the information out there about how to heal naturally it's hard to accept that ME is a disease not a condition and anything we do is unlikely to result in remission.

It does make it hard to plan. One idea is to simply have contingencies for random bad days. And accept when you cannot follow through with something that cannot be rescheduled.

 

[Dechi]

There are bad days that I honestly have no idea why they happen.

But I have noticed that stress has a big impact. Even small stressors that I don't even notice at first will raise my anxiety, increase my insomnia and decrease my sleep and overall increase my symptoms. Medical tests, also, even if I don't feel anything particularly painful when I have them, will make me worse for a good amount of time, sometimes 2-3 weeks.

 

[Kati]

In the 8+ year I have been sick there has been no good days. There is very little fluctuations on a day to day basis at least in my case.

 

[Mary]

@confetti11 - actually I seem to have a pretty good handle on why some days are good and some are bad. The causes range from PEM, being sick (usually with sinus problems), depleted adrenals (often after some type of stressor), low potassium (which I had off and on for years but only identified 7 years ago), depleted phosphorous and herxheimer reaction - all of these things cause fatigue. Also sometimes I will react badly to a new supplement (e.g., it may make my cortisol go too low). I've often thought we have to be detectives with this illness.

Through a lot of reading and also muscle testing done by my chiropractor and by myself, I can usually identify what is going on and then take steps to remedy it - e.g., add in potassium or V8, drink kefir for phosphorous, or increase my adrenal glandular if need be. These are all things I have learned about (slowly) over the years. I have also often thought I would be lost without muscle testing. It's cleared so many mysteries, I cannot imagine dealing with this illness without it.

If anyone is interested in muscle testing, I strongly urge them to first see a chiropractor or other trained practitioner so they can see and experience how it works. I've gotten pretty good at identifying symptoms, but sometimes I'm not sure what something is and will do muscle testing but then will see the chiropractor to see if we agree, and most often we do. A good place to start in locating a chiro who does muscle testing is the Standard Process website - they have a search feature for practitioners who use their products, which are very often used by chiropractors, etc.

 

[Dechi]

@Mary Are you in Canada ? I would be interested in muscle testing. I used to see a chiro, he was good with that but he persisted in cracking parts of my body even though I specifically asked him not to. Does your chiro use the cracking technique ?

 

[Mary]

Hi @Dechi - no, I'm in California. But I did a google search for "applied kinesiology Canada" and came up with this: http://www.icakcanada.ca/find-an-ak-practitioner.html - you might be able to find someone through this website.

My chiro uses the activator, it's a little clicker that doesn't hurt at all, he never does the cracking technique - yours should not have done that after you asked him not to!

 

[Mary]

One more thing that used to cause fatigue for me was detoxing. Many herbs, supplements and even foods used to cause a detox reaction - I would be extra tired, feel fluish, digestion would be off, or I'd be spacey, like I was drugged! and this went on for several years. It was an intermittent but chronic problem. It's a long story but I hardly ever detox any more. Here's a thread that tells more about it: http://forums.phoenixrising.me/inde...n-methylation-is-increased.49212/#post-811596

Again, muscle testing was invaluable here. e.g., the amino acid glycine initially caused a huge detox reaction for me (I was trying to take it for sleep) and would not have been able to continue with it, but I learned about its role in detoxing (it seems to be crucial - see link above) and with muscle testing was able to titrate up very gradually with small doses. The chiropractor also was invaluable here.

And I have detox symptoms so rarely now, I'd forgotten that it used to be a major part of my life.

 

[Dechi]

Hi @Dechi - no, I'm in California. But I did a google search for "applied kinesiology Canada" and came up with this: http://www.icakcanada.ca/find-an-ak-practitioner.html - you might be able to find someone through this website.

My chiro uses the activator, it's a little clicker that doesn't hurt at all, he never does the cracking technique - yours should not have done that after you asked him not to!

What a coincidence ! I just made an appointment with the first one on the list... and the one who cracked me also appears on the list, but I won't give any names...

Thanks you !

 

[Snowdrop]

In the 8+ year I have been sick there has been no good days. There is very little fluctuations on a day to day basis at least in my case.

I interpreted the phrase to mean better days, as in I have a baseline but some days for no apparent reason I feel more energy if only for a few hours. So now I'm not sure what the poster was in fact meaning.

Although, for me with slow onset I know there was a great deal of fluctuation but I think PEM was often the culprit then.

 

[Kati]

I interpreted the phrase to mean better days, as in I have a baseline but some days for no apparent reason I feel more energy if only for a few hours. So now I'm not sure what the poster was in fact meaning.

Although, for me with slow onset I know there was a great deal of fluctuation but I think PEM was often the culprit then.

And I mean i don't have better days, no fluctuation on a day to day basis.

 

[confetti11]

@TigerLilea
@Snowdrop
@Kati
@Dechi
@Mary

Thanks for all of your input. I agree it could be possibly for any of the reasons you mentioned. There are so many factors that it's hard to stay positive. Like today, I had a day without a ton of symptoms for some reason. So grateful. I wish it could just stay this way.