Cycle: Steady, Hype, relapse, crash...

[Ellea]

MDear all,

I am pretty new to CFS ( I think I had it for years but I didn't quite understand it as such). I have many of the symptoms but a mild form in comparison to many others, so I can live normally most of the time. I just wanted to ask others here that also work on normal to really good energy levels some of the time whether you can relate to intense energy cycles. I feel like being bipolar in a physical sense, that if I am well, I am really well and don't mind not sleeping a night, I am really happy, I have a lot of energy and I can deal with intense work phases quite well. However when I crash/relapse my energy levels fall below the normal threshold, I get a variety of physical symptoms etc. and fall into a state of weakness that lasts from days to weeks to months. I made the experience that after such a phase, events that combine a certain sleep deprivation and excitement get me out of this low-energy phases again and make me feel very good for some time. For example, flying and not sleeping two days having a two day flight or intense all-night parties. I also felt that the euphoria involved and e for example has at least not damaged me in any way, I didn't have a low but felt great for weeks in a go.

It doesn't always work like that of course, if I haven't gotten any rest-states more partying or more work just leaves me in a state of being constantly overwhelmed. It puzzles me though, how in those phases I feel so well, why physical symptoms mostly disappear or become almost unnoticeable and if this "feeling so well" just feels so good and better than for "normal people" because I for once don't feel shit or whether I actually have more energy than others. It is all very confusing as I don't quite know how to behave: if good and bad phases just come and go this whole pacing business doesn't really appeal to me as I don't just want to miss out on the good phases in life for nothing. On the other hand, if crashes were an ultimate result to every high, I would have to be more careful with not using that energy- however, not sure whether the relationship is that straightforward.

Thanks and would be great to hear if some of you can relate!

Cheers,
El

 

[A.B.]

There seem to be a few similarities between type 2 bipolar and CFS when it comes to symptom fluctuations. However, having so much energy to just skip a night's sleep, or feeling better than people in normal health, is not typical for CFS. That fits type 2 bipolar better. CFS is usually defined as resulting in prolonged and substantial reduction in activities.

 

[Ellea]

yes, good point. However, I am wondering whether that is just my normal self and it just feels so good because I feel so low usually. Also, bipolar would not have these physical symptoms. And I have many of the physical symptoms that make up CFS. Would astounds me actually is that the cyclical nature of CFS is only mentioned by some. Do some of you cope well in life a couple of months/ or at least weeks and are nearly symptom free and back to normal activity levels and only back to CFS substantial reduction in activity after a "crash"?

 

[Snowdrop]

Hi @Ellea

Welcome to PR.
Even with the relapsing and remitting nature that can be part of ME it doesn't sound quite like your symptoms fit.

There is often also a lot of cognitive issues with ME often referred to as fog (which isn't a helpful designation I think). Also a majority of ME sufferers have some sort of Orthostatic intolerance.
And many have other health issues (neurological/autoimmune/hormonal) along with the core symptoms. Fatigue can be an important symptom but it's not necessarily primary to ME. This is confusing because of the name.

It could be a mild case perhaps. But have you explored other diagnoses with your doctor?
Some other illnesses mimic some of the symptoms so that getting alternative diagnoses excluded is a first step. Many here are on an exploration of discovery and find they sometimes have treatable issues that get missed because of all the symptoms they have.
Although they may still have ME as well.

It's not an easy disease. And there is a long learning curve with ME in understanding just what it is. There is lots here to investigate further at any rate. Keep asking questions and maybe you may find some clarity.

 

[A.B.]

Would astounds me actually is that the cyclical nature of CFS is only mentioned by some.

It's definitely common. Ramsay first described ME as chronic disease with a characteristic relapsing pattern.

If you're concerned that doing too much might result in a crash later on, why not keep a diary to track symptoms and try pacing yourself to find out? That will give you a better answer than most patient / doctor opinions, in my opinion.

 

[Ellea]

Hi @Ellea

Welcome to PR.
Even with the relapsing and remitting nature that can be part of ME it doesn't sound quite like your symptoms fit.

There is often also a lot of cognitive issues with ME often referred to as fog (which isn't a helpful designation I think). Also a majority of ME sufferers have some sort of Orthostatic intolerance.
And many have other health issues (neurological/autoimmune/hormonal) along with the core symptoms. Fatigue can be an important symptom but it's not necessarily primary to ME. This is confusing because of the name.

It could be a mild case perhaps. But have you explored other diagnoses with your doctor?
Some other illnesses mimic some of the symptoms so that getting alternative diagnoses excluded is a first step. Many here are on an exploration of discovery and find they sometimes have treatable issues that get missed because of all the symptoms they have.
Although they may still have ME as well.

It's not an easy disease. And there is a long learning curve with ME in understanding just what it is. There is lots here to investigate further at any rate. Keep asking questions and maybe you may find some clarity.

I have recently and she gave me some information material but did not take it further as I was leaving the country too soon. In the UK it seems ME is more accepted though than in Germany, where non of my doctors picked up on it. I for a long time thought it should be something different as in comparison to earlier episodes where tiredness was the overwhelming issue, pain become more prominent for me. Do any of you experience a flux in symptoms. Also, I thought I have all sorts of issues, without putting it together.

I do have a variety of neurological and autoimmune problems. brain fog, weakness, tingling in my arms and legs, colds, sore throat, nausea, in general issues with stomach etc, headaches, low blood sure/volatile blood sugar, dehydration (or at least I sometimes have to drink a lot ), getting cold very easily, and more.

I cannot really tell for sure but I think the other symptoms come before the exhaustion, but that might have just been the last times.

I definitely consider it might be something different and will, as soon as I get a proper base investigate into that further but I've been tested for quite a few things and all came out negative. And ME gave me the first time comprehensive 'answer' where all things together seemed to make sense.

Thanks for your answer! That is definitely where I am now, considering the option M.E. but also investigating further!

 

[Snowdrop]

If you have dehydration which causes you to drink more you may want to drink an electrolyte mix. This may improve some symptoms a bit.

CFS is accepted in the UK but the treatment is harmful to people with the symptoms we have that we refer to as ME. They only do Cognitive behavioural therapy, and encourage activity too much.

I believe there is a clinic in Berlin that deals with ME.

There are a few useful information packages to look at that have been compiled here.
There's this: https://sites.google.com/site/cfstestingandtreatmentroadmap/
I made a document to share with friends and family to explain ME:
http://forums.phoenixrising.me/inde...pwme-get-accurate-info-out.38886/#post-621915

 

[Johnmac]

Whatever your true diagnosis, it's good that you have recognised the problem whilst it is merely intermittent.

IMO now is the time to begin peeling off the onion layers, finding the cause, then rectifying it.

 

[panckage]

Do some of you cope well in life a couple of months/ or at least weeks and are nearly symptom free and back to normal activity levels and only back to CFS substantial reduction in activity after a "crash"?

Sort of. My functioning is quite a bit lower than yours but in the past year or so I've had some really good days/weeks/months followed by some really poor functioning weeks/months. Can't identify with the going without sleep part. Proper sleep is a must for me!!!

But certainly exciting things help temporarily. I went skydiving a couple years ago. That whole day I had amazing energy, the best energy I had had in months . The next day I was back to CFS land however.

These days my body feels like an old car. Sometimes it has trouble starting. Sometimes it gets stuck in first gear. Sometimes it seems to work almost normally. Its extremely variable