Can someone help me interpret this please.

[xlynx]

Hi,

I have been coming out of a crash for the last week but it has been a steady improvement.

Today have been feeling great and having been pacing really well to ensure that I keep things moving smoothly.

I ate lunch at 3pm, relaxed on sofa for 30 mins and then went to bed for 1 hour meditating. Whilst meditating I started to feel really emotional and after about 15 mins of feeling emotional I was into full blown symptoms, Brain fog, slight breathing issues, confusion and some heart palps a kind of poisoned feeling.

Whats killing me is that I can never work out why I get symptoms. Do you think I should interpret this as something I ate caused me the problem as I was perfectly calm and resting for 1 hour 30 mins and had been relaxing the whole day. I ate a roast dinner that I have once a month and normally am fine with it. Do you think I should avoid this food?

I know I am picking at straws here but I am so desperate to understand why I get ill so I can get better.

Do I just have to accept that illness can come out the air like that or do you think I am right to accuse the food?

Many thanks for any help

 

[Jody]

xlynx,

My starting guess would not be the food this time.

I'd start with, the emotional time after meditating.

What kind of emotion? Tears, anger, frightened, happiness?

 

[xlynx]

The emotion was a mixture of sadness, fear and confusion and then I become instantly exhausted so compounding all the emotions further but it wasn't aimed at anything in particular and my mind was just wandering quite happily and then zap I feel all emotional

 

[Jenny]

Hi Xlynx

After 28 years of trying to work out what causes increased symptoms and relapses, I've come to the conclusion that this thing has a life of its own. I've tried to link increased symptoms to stress, overexertion, diet, drugs, supplements and there is no pattern at all.

I can be relaxed, happy and resting a lot and I get a bad relapse. On the other hand I can be going through months of stress and periods of not eating well and I can be mostly fine for several years.

I think its tempting to attribute exacerbations of symptoms to something that has happened just before, like a particular food or a stressful period, but for me anyway most of the time these are just coincidences.

All I can do is get complete rest during relapses (can't do anything else anyway) and keep trying different medications and supplements. There must be something out there that helps!

Jenny

 

[Jody]

I agree with Jenny that it is so often impossible to know what triggered symptoms. We try anyway, and alot of the time there is no answer.

Why did I lose most of this past fall? Change of season? Seasonal allergies (though I know of none)? Too much activity? ... Don't know.

Just for the heck of it, though, I'd like to meander along your meditation time that day, and what followed after.

This is pure speculation, keep in mind. Similar things as what I'm going to describe have happened to me.

I've gone from feeling ok to thinking about something that triggers a panic reaction. Might not be something I'm afraid of ... might be something as simple as making a mental note that I have to write a grocery list ... or thinking about something I need to do in the future, could easily be something I like and am looking forward to.

It seems like our sympathetic nervous systems have an itchy trigger finger. They can get set off over ... literally, nothing. But then the Fight of Flight reaction is in full force, and we get taken, once more, on the ride of our life.

What I'd suggest, if your symptoms are seeming to come out of nowhere, is maybe not worry too much about what triggered them, but rather, what to do after they're triggered. All of the ones you described can be activated by what I described. (Doesn't necessarily mean they were, ok? Just, it's one possibility.)

Move from your sympathetic nervous system into your parasympathetic nervous system. You turn off the SNS by turning on the PNS. How do you do that?

Breathe slow and deep and regularly. If music helps, put some on. Maybe sing. If quiet helps, stay in the quiet. Rest your way through it. Remind yourself that these symptoms can go away. Sleep. Yield yourself to rest. As fearful thoughts about the symptoms come up, do your best to push them aside. Try some peaceful visualization, see yourself in some lovely relaxing place.

All this stuff helps to send different (healing) chemicals through us, as opposed to the breaking-down chemicals from the sympathetic nervous system on overdrive.

As I think about it now, I guess my best advice is, when it's not apparent what set things off, don't spend too much time on that. Put your attentions to ... smooooothening yourself out of them.

 

[Jody]

The emotion was a mixture of sadness, fear and confusion and then I become instantly exhausted so compounding all the emotions further but it wasn't aimed at anything in particular and my mind was just wandering quite happily and then zap I feel all emotional

xlynx,

Looking at the post again.

The type of emotions you were feeling, could easily lead to a triggering of the sympathetic nervous system as I mentioned in my above post. It is the Fight of Flight one, the one that is triggered by a perception of danger.

One thing you could look into for this type of situation is EFT. (Emotional Freedom Therapy, I think?). Involved tapping, similar to acupressure. I don't know much about it myself. Some people get limited results, I know someone who has had spectacular results with it though.

Something else you could try is Rescue Remedy. All natural -- made from flowers I believe -- I get mine in drops in a bottle. It helps stem panic attacks and also many symptoms of CFS. Has helped me and my husband quite a bit. Also used to help him go to sleep when his insomnia was very bad. It helps make the switch from Sympathetic to Parasympathetic.

 

[xlynx]

Hi Jenny,

Wow 28 years. Ive had this 8 months and I am already wanting out. I wish there was a pattern to have some sense of normality.

During those 28 years have you had the same symptom and severity or have they changed?

Thank you

 

[xlynx]

Hi Jody,

Thanks for the advice, again!

I will definitely try this rescue remedy out.

I heard about EFT I think it might be part of the amygdala retraining I think I am going to order it and try it out. At the very least it will be something relaxing to watch when down.

Thanks again

 

[Lily]

Hmmm......

I too am always trying to figure the trigger to crashing, as well as the trigger to the good days. For me, one is as elusive as the other.

In my own experience sudden strong emotions can trigger an immediate downward spiral and crash. Admittedly, the emotions seeming to arise from meditation is different, but emotions are emotions, regardless of etiology (I guess). Your body doesn't know the difference, after all.

Upon first reading your description of the day, my immediate feeling was that even though you were pacing yourself 'really well', was that you actually over did it. This happens to me. I can think that I have been very careful and most certainly did not overdo. I rest and then after a bit of rest all the symptoms start. It has happened to me many times. Sometimes I don't even realize it until I start to get up from resting and it feels as if all my muscles have seized up, then the nausea, then the internal vibrating (as if I've been plugged into an electical socket), and on and on the symptoms pile up.

It has happened if I have a large meal, too. I always have to keep my portions small. If I happen to enjoy a particular meal and eat too much, I will react.

Regarding, emotions - during the summer I was having a few fair days (not good enought to get out of the house, but being up and around in the house). My daughter called to say my 8 yr old grand-daughter had passed out at beach camp and was taken by ambulance to the hospital where they were assessing her and that she may need a blood transfusion. This was of course alarming to me, but I did not 'feel' the reaction at that time. I wanted to know the hemoglobin and hematocrit and she said she would let me know. A bit later she sent me and email saying "hemoglobin 3 and hematocrit 10". In that instant, my body reacted as if you would have told me she was dead - I guess in my mind that's what those numbers equated to, but my point is (and I'm getting there) my body reacted violently, and progressed into a full blown horrible crash within minutes. This continued despite the fact that I was in contact with my daughter, knew that my grand-daughter was conscious and obviously the severe anemia had occurred over a long period of time and although she was very seriously ill, she was receiving transfusions and she was going to be OK (at least for the short term, while other diagnostics were being performed). This crash, while extremely profound, lasted only 2 weeks.

I've had a similar symptom reaction, although not quite as bad, from being simply overjoyed with good news as well. It amazes me.

When I could still go out to a movie once in a while, I once had a very bad reaction to the noise during the previews of coming attactions, had to hold my ears even tho I had put earplugs in, it was extremely painful. I managed to stay through the movie, which was a quiet one, with no special effects, but I could feel myself crashing and felt as though I could barely drive home afterwards. The sun felt as if it was piercing my eyes with my sunglasses on. This triggered a major crash - really worse than I've ever had, effecting me on every front. The worst of it lasted 5 weeks.

It seems to be a constant surprise. I try to keep a diary and a speadsheet in order to see some type of pattern and gain some control, but there are constant surprises. It honestly makes me want to wall myself off from everything and just stay in bed, but of course that's not an answer, and the increased deconditioning then plays into the whole crash phenomenon.

To me, it is beyond fascinating - I just wish I weren't experiencing it from this vantage point, but then again I could never possibly begin to understand what it's really like otherwise.

Sorry to ramble on so.

 

[Jenny]

Hi again Xlynx

I was able do very little for 3 years when I first became ill when pregnant and had to spend most of the time in bed. My then husband left. After a while I slowly began to improve while I was having colonic irrigation and doing a huge amount of juicing (but I don't think these had much effect - I was starting to improve anyway). Then over the next couple of years I got well enough to work full time and and look after my two young children. During this time I was having acupuncture and Chinese herbs.It's possible they helped but again I think it's more likely to be a coincidence as I've tried these again several times more recently and there's been no improvement.

Then I had 8-10 years of almost complete 'wellness'. During this period I was working full time and looking after the children and regularly hiking and ski-ing.

In 2002 things got a lot easier - children had grown up and left home and I remarried. But in 2003 I started to have longer and longer relapses, with more neurological symptoms and more pain. I still have very good periods - for 8 months this year I was pretty good - but I've been in bed feeling very ill since the end of Sept.

My lovely husband has to do everything.

Most people do recover significantly, but I think the infection (if that's what it is) is still there in a latent form. Perhaps as I've got older (59 now), the immune system is less good at suppressing it.

I'm really hopeful though - there is so much more known now than in 1982 when I first got ill - and I'm sure we'll all find ways to improve, with or without any confirmation of XMRV.

Jenny

 

[starcycle]

I agree with Jody - the sympathetic/parasympathetic balance in CFS is really sensitive and can be out of whack, not to mention different transmitters systems, amygdala "fight or flight" reactions, etc. If I get into the "zone" when meditating, the next day I will have really severe anxiety and panic attacks all day. So who knows what is really getting kicked up.

When you meditate, you are also often raising alpha waves, which can cause repressed material to come to the forefront. I've done a lot of EEG neurofeedback, and they call that an "abreaction." I've had a few very bad ones myself. Even though supposedly raising alpha, for example, would in a particular case be beneficial, sometimes it's too much, or there are imbalances in other parts of the brain or frequency spectrum that allow depression, anxiety, or other "abreactions" to occur.

So it's best always to just take things very slowly and gently. If meditating for one hour was too much, reduce by at least half for a while. If that still triggers symptoms, reduce by half again until you're okay with it. Then gradually build up from there. Or just start slower to begin with. The important thing is to "listen" to what your brain/body is telling you, and to stay within your comfort zone. If you have a good therapist, going into the reaction might be the way to work through it, but if you are on your own and it's too overwhelming, just back off until you are in your comfort zone again.

 

[Jody]

starcycle,

Welcome to the forums.

So what you are saying, is that the abreaction might be comparable to a detox reaction of symptoms? That, it is possibly a "clearing out", and not necessarily just a "kicking up"? And also similarly, just as you want a detox to be just enough to do some cleansing, you don't want to overwhelm the body with too many toxins being released at a time?

I found your post very interesting reading. Seems to fit with some of my own speculations recently. Thanks.

 

[starcycle]

starcycle,

Welcome to the forums.

So what you are saying, is that the abreaction might be comparable to a detox reaction of symptoms? That, it is possibly a "clearing out", and not necessarily just a "kicking up"? And also similarly, just as you want a detox to be just enough to do some cleansing, you don't want to overwhelm the body with too many toxins being released at a time?

I found your post very interesting reading. Seems to fit with some of my own speculations recently. Thanks.

Yes, I think that's a great analogy, in fact. There can be a lot of depression, repressed emotions -- whatever -- and relaxing the mind in meditation, or shifting the brainwaves with neurofeedback, etc. can allow it to "break through" and come to the surface. You can get really stuck in it, too. So like you said, you don't want to overwhelm yourself with too much of that cruddy stuff at once.

 

[Jody]

Hi Jody,

Thanks for the advice, again!

I will definitely try this rescue remedy out.

I heard about EFT I think it might be part of the amygdala retraining I think I am going to order it and try it out. At the very least it will be something relaxing to watch when down.

Thanks again

EFT is not part of amydgala training as far as I know. There is alot of information about EFT on the net and I think there is a thread or two on the forums on the subject.

Amygdala training also has some threads here I believe. Both things are worth looking into. EFT doesn't cost anything, mind you, and requires no types of equipment but your fingers for tapping with.

 

[Chris]

that "why" question

Hi, Xlynx; I am not sure what you mean when you say you have been "pacing really well"; I find that when I improve a bit, and walk further, I improve slowly up to a certain point, and then take a step further--and wham, I am pushed back again. So let me repeat, probably needlessly, that always do less than you can, or think you can. Going repeatedly to your present limit is very likely to trigger a retreat or even crash, that may not show up for a day or two or more.

My second question would be about that "roast dinner"; it sounds like a lot of meat (high protein) and fat, and that could do a variety of things that could precipitate a retreat / crash. You are stressing your digestive system, and we are all learning how important that is.

So it could have been the meditation, but I would suspect these other factors myself. But one never, or seldom, as others have said, knows for sure! Keep notes, though, and patterns may begin to emerge.

Good luck, Chris

 

[Jody]

I too am always trying to figure the trigger to crashing, as well as the trigger to the good days. For me, one is as elusive as the other.

In my own experience sudden strong emotions can trigger an immediate downward spiral and crash. Admittedly, the emotions seeming to arise from meditation is different, but emotions are emotions, regardless of etiology (I guess). Your body doesn't know the difference, after all.

Upon first reading your description of the day, my immediate feeling was that even though you were pacing yourself 'really well', was that you actually over did it. This happens to me. I can think that I have been very careful and most certainly did not overdue. I rest and then after a bit of rest all the symptoms start. It has happened to me many times. Sometimes I don't even realize it until I start to get up from resting and it feels as if all my muscles have seized up, then the nausea, then the internal vibrating (as if I've been plugged into an electical socket), and on and on the symptoms pile up.

It has happened if I have a large meal, too. I always have to keep my portions small. If I happen to enjoy a particular meal and eat too much, I will react.

Regarding, emotions - during the summer I was having a few fair days (not good enought to get out of the house, but being up and around in the house). My daughter called to say my 8 yr old grand-daughter had passed out at beach camp and was taken by ambulance to the hospital where they were assessing her and that she may need a blood transfusion. This was of course alarming to me, but I did not 'feel' the reaction at that time. I wanted to know the hemoglobin and hematocrit and she said she would let me know. A bit later she sent me and email saying "hemoglobin 3 and hematocrit 10". In that instant, my body reacted as if you would have told me she was dead - I guess in my mind that's what those numbers equated to, but my point is (and I'm getting there) my body reacted violently, and progressed into a full blown horrible crash within minutes. This continued despite the fact that I was in contact with my daughter, knew that my grand-daughter was conscious and obviously the severe anemia had occurred over a long period of time and although she was very seriously ill, she was receiving transfusions and she was going to be OK (at least for the short term, while other diagnostics were being performed). This crash, while extremely profound, lasted only 2 weeks.

I've had a similar symptom reaction, although not quite as bad, from being simply overjoyed with good news as well. It amazes me.

When I could still go out to a movie once in a while, I once had a very bad reaction to the noise during the previews of coming attactions, had to hold my ears even tho I had put earplugs in, it was extremely painful. I managed to stay through the movie, which was a quiet one, with no special effects, but I could feel myself crashing and felt as though I could barely drive home afterwards. The sun felt as if it was piercing my eyes with my sunglasses on. This triggered a major crash - really worse than I've ever had, effecting me on every front. The worst of it lasted 5 weeks.

It seems to be a constant surprise. I try to keep a diary and a speadsheet in order to see some type of pattern and gain some control, but there are constant surprises. It honestly makes me want to wall myself off from everything and just stay in bed, but of course that's not an answer, and the increased deconditioning then plays into the whole crash phenomenon.

To me, it is beyond fascinating - I just wish I weren't experiencing it from this vantage point, but then again I could never possibly begin to understand what it's really like otherwise.

Sorry to ramble on so.

I don't think you were rambling on. Everything you said was a piece of the picture you were making for us.

I'd have to agree on the constant surprise thing. And your description of what it's like when these meltdowns come out of the blue was very accurate.

And it's true. If we hadn't been through this crap, we would never be able to understand what it's like for the people who do go through it.

 

[Jody]

Yes, I think that's a great analogy, in fact. There can be a lot of depression, repressed emotions -- whatever -- and relaxing the mind in meditation, or shifting the brainwaves with neurofeedback, etc. can allow it to "break through" and come to the surface. You can get really stuck in it, too. So like you said, you don't want to overwhelm yourself with too much of that cruddy stuff at once.

Okay, thanks starcycle.

xlynx,

Starcycle just helped me put the last piece to something here.

I've mentioned EFT. I have a friend who's had good success with it. And they told me that they would often have negative emotions and old baggage rise up afterward. They would then "tap" their way through these, and would find it all less weighty later on. But they would often feel like low-grade crap for some time afterward. We both thought, it is clearing, detoxing so to speak. Later they would feel the long-term benefits of having done this.

 

[Jody]

Hi, Xlynx; I am not sure what you mean when you say you have been "pacing really well"; I find that when I improve a bit, and walk further, I improve slowly up to a certain point, and then take a step further--and wham, I am pushed back again. So let me repeat, probably needlessly, that always do less than you can, or think you can. Going repeatedly to your present limit is very likely to trigger a retreat or even crash, that may not show up for a day or two or more.

My second question would be about that "roast dinner"; it sounds like a lot of meat (high protein) and fat, and that could do a variety of things that could precipitate a retreat / crash. You are stressing your digestive system, and we are all learning how important that is.

So it could have been the meditation, but I would suspect these other factors myself. But one never, or seldom, as others have said, knows for sure! Keep notes, though, and patterns may begin to emerge.

Good luck, Chris

Hi Chris,

I'm afraid we can never hear it often enough, to always do less than we can. This is a lesson many chronics have a really hard time with. So I expect it's a very good thing for you to tell xlynx, especially so early in his illness.

It is so easy to overdo, and not realize it until later when the crash hits.

The dinner could have been a factor, but it's going to depend. For me, for instance, something like that would not be a problem. Likely because I am a protein / fats metabolic type. I never feel better than when I've had a meal that would knock some other people over. (of course, I get sick as a dog or weak as a baby if I eat a carb meal that for most of you might be ... a piece of cake. )

My guess here (and like the rest of this it's only a guess) is if he has had the same dinner in the past with no problems, it probably wasn't the food.

So, there. xlynx, we have looked at each component to your puzzle, and validated and then invalidated each and every one of them for you.

Welcome to CFS.

 

[xlynx]

Thank you

I would like to thank everyone for such great input, whats been so great about reading everyone's responses is that I must remind myself of the complexity of whats going on and not get down when my most obvious guess doesnt get it

I couldnt have wished for a better set of answers. I thought I was going to get answers from my doctor but I never expected my best and most reliable source of input would be from the cfs community.

I am also so glad to be around so many knowledgeable pros! Thank you all !! Its all starting to sink in, Ill get there eventually.

 

[fresh_eyes]

Hi xlynx, Your situation sounds so familiar, especially the part about trying to figure out what you've done to cause it! I have a bit of a different take on the emotions. I've found that, for me, the first symptom of a flare is always "emotional". I've come to realize that's just the first sign of the physiological, chemical shift in my body. It might be a pounding heart or a cold sweat, which my mind interprets as "I feel afraid" or whatever - but it's just a chemical symptom.

That said, everybody else is right too about pacing, food, and the thing just having a life of its own, too!