Fluctuations

[Martin aka paused||M.E.]

I experience enormous fluctuations of my symptoms. One day can be "good" and the next a total mess. And that has not to be correlated with exercise. Furthermore there are enormous ups and downs on one single day.

Is that normal in ME?

 

[Tammy]

The enormous fluctuations VERY NORMAL.............even within a single day.

 

[ljimbo423]

I experience enormous fluctuations of my symptoms. One day can be "good" and the next a total mess. And that has not to be correlated with exercise. Furthermore there are enormous ups and downs on one single day.

Is that normal in ME?

I agree with @Tammy. It would be more abnormal if you didn't.

Jim

 

[ukxmrv]

I experience enormous fluctuations of my symptoms. One day can be "good" and the next a total mess. And that has not to be correlated with exercise. Furthermore there are enormous ups and downs on one single day.

Is that normal in ME?

Can you describe your fluctuations during one day please (i.e time, activity level and if that causes PEM)

My daily rhythm in general is to start off badly and then have symptoms improve as the day goes on.

 

[Martin aka paused||M.E.]

Can you describe your fluctuations during one day please (i.e time, activity level and if that causes PEM)

My daily rhythm in general is to start off badly and then have symptoms improve as the day goes on.

Puh, quite difficult to answer. Because there often is no structure or system in these fluctuations (or I haven't noticed it yet). Main symptoms are: Dizziness, weakness, sometimes fatigue (but not too strong), digestive problems, feeling ill (like having a flu).

But this week was really (!) good compared to last week were I had a massive crash after a cold and was bed bound for about four days. That means: I wake up, feeling dizzy. After breakfast my energy level gets better. So from Monday to Thursday I worked until nearly noon (home office)... then my energy level falls down so I know I need some food (fats!). I have lunch. After that I can work until four o'clock. Then my energy levels fall down slowly. Then in the evening I had some crashs this week. They lastet two or three hours.

The thing is: I don't really know why. On other days the structure of ups and downs is completely different. So it can be horrible in the morning, better in the evening or the opposite. But what I think I already know is: It's worse when there are digestive problems!

 

[ukxmrv]

Maybe keep a diary and see what comes up? From your description above it sounds as your fluctuations are based around food and needing to eat for energy.

I don;t know if this helps at all but I notice that if I keep my mornings very quiet and don't do any physical exertion in the afternoon my evenings can leave me feelings almost human. It's the only circumstances that create this "good " time.

 

[Martin aka paused||M.E.]

Maybe keep a diary and see what comes up? From your description above it sounds as your fluctuations are based around food and needing to eat for energy.

I don;t know if this helps at all but I notice that if I keep my mornings very quiet and don't do any physical exertion in the afternoon my evenings can leave me feelings almost human. It's the only circumstances that create this "good " time.

Hm I don't know. The thing is (without physical exercise) my crashes are non-reproduciable. But yes, it definitely has to do with digestion. But I can't figure out what to eat or what to do to improve digestion.

 

[ljimbo423]

But yes, it definitely has to do with digestion. But I can't figure out what to eat or what to do to improve digestion.

A very simple place to start would be a very strong digestive enzyme with every meal if you are not already taking one.

Capsules work best because you don't need to break them down like pills. Gut dysbiosis is extremely common in CFS and impairs digestion.

Jim

 

[Martin aka paused||M.E.]

A very simple place to start would be a very strong digestive enzyme with every meal if you are not already taking one.

Capsules work best because you don't need to break them down like pills. Gut dysbiosis is extremely common in CFS and impairs digestion.

Jim

Do you have any recommendations?

 

[CFS_for_19_years]

Do you have any recommendations?

These work well for me. I take one capsule at lunchtime and I'm good for the day:
Life Extension Enhanced Super Digestive Enzymes
https://www.amazon.com/Life-Extension-Enhanced-Digestive-Vegetarian/dp/B00J8SSJRQ

 

[ljimbo423]

Do you have any recommendations?

The one @CFS_for_19_years mentioned looks like a good one. Here is a less expensive one that isn't as strong but still very good.

It's probably best to take one with every meal. Especially if what Chris Armstrong says about us not digesting fats and proteins in the small intestine where we should is right.

He says the undigested fats and proteins make it into the large intestine where they cause problems. Digestive enzymes will help prevent that from happening.

Jim

 

[Martin aka paused||M.E.]

@CFS_for_19_years @ljimbo423
How long does it take to note any effect? I am testing these https://www.amazon.com/NOW-Super-Enzymes-180-Capsules/dp/B0013OXKHC/ref=sr_1_3_a_it?ie=UTF8&qid=1510826075&sr=8-3&keywords=super enzymes and there is no noticeable benefit. I've even raised the dosage. hmmmm...

 

[ljimbo423]

@CFS_for_19_years @ljimbo423
How long does it take to note any effect? I am testing these https://www.amazon.com/NOW-Super-Enzymes-180-Capsules/dp/B0013OXKHC/ref=sr_1_3_a_it?ie=UTF8&qid=1510826075&sr=8-3&keywords=super enzymes and there is no noticeable benefit. I've even raised the dosage. hmmmm...

That looks like a pretty good digestive enzyme. It seems like noticeable improvement varies from person to person. It could be something that takes weeks to make a significant difference.

It can be and often is, difficult to treat digestive issues. Dysbiosis is EXTREMELY common in CFS. Dysbiosis is something I am working on and have been fairly aggressively for about 7 months.

I have made really good improvements, however, I have had digestive issues for many, many years. So the dysbiosis I have is well established and more difficult to treat than say somebody that has had digestive issues for several months.

The improvements have been greatly reduced flu-like symptoms, improved mental clarity, increased energy and even more-so in just feeling much,much happier! I am sure these are a result of cleaning up my digestive tract.

Jim

 

[Martin aka paused||M.E.]

@ljimbo423 yep and from my point of view the whole gut issue is at least one of maybe three main problems going on in my body. So digestion is in fact the first part to focus on.

May I come back to you per PM to ask about your treatment?

 

[CFS_for_19_years]

@CFS_for_19_years @ljimbo423
How long does it take to note any effect?

When I started taking the Life Extension Enhanced Super Digestive Enzymes it only took a few days to go from bloated and uncomfortable to feeling much better. If I happen to run out of them I suffer.

 

[Martin aka paused||M.E.]

When I started taking the Life Extension Enhanced Super Digestive Enzymes it only took a few days to go from bloated and uncomfortable to feeling much better. If I happen to run out of them I suffer.

Thank you! Maybe I have the wrong supplement. I didn't buy the product you have recommended because I have to pay 40 Euros for 60 capsules :-/

My other idea is a link to cortisol, mentioned here http://forums.phoenixrising.me/index.php?threads/symptoms-and-cortisol-a-causal-relationship.56174/

 

[CFS_for_19_years]

Thank you! Maybe I have the wrong supplement. I didn't buy the product you have recommended because I have to pay 40 Euros for 60 capsules :-/

My other idea is a link to cortisol, mentioned here http://forums.phoenixrising.me/index.php?threads/symptoms-and-cortisol-a-causal-relationship.56174/

Take a look at the price here:
https://www.lifeextensioneurope.com/enzymes/enhanced-super-digestive-enzymes-60-vegetarian-capsules
You can RECEIVE €10 OFF YOUR FIRST ORDER by subscribing to their newsletter. Go to the bottom of this page to enter your name and email:
https://www.lifeextensioneurope.com/order-service/

Or try this:
https://de.iherb.com/pr/life-extension-enhanced-super-digestive-enzymes-60-veggie-caps/67043

Or this:
https://www.ebay.de/sch/i.html?_odk...ion+Enhanced+Super+Digestive+Enzymes&_sacat=0

 

[Martin aka paused||M.E.]

Take a look at the price here:
https://www.lifeextensioneurope.com/enzymes/enhanced-super-digestive-enzymes-60-vegetarian-capsules
You can RECEIVE €10 OFF YOUR FIRST ORDER by subscribing to their newsletter. Go to the bottom of this page to enter your name and email:
https://www.lifeextensioneurope.com/order-service/

Or try this:
https://de.iherb.com/pr/life-extension-enhanced-super-digestive-enzymes-60-veggie-caps/67043

Or this:
https://www.ebay.de/sch/i.html?_odkw=Life Extension, Enhanced Super Digestive Enzymes&LH_PrefLoc=3&_fcid=77&_clu=2&gbr=1&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.XLife Extension Enhanced Super Digestive Enzymes.TRS0&_nkw=Life Extension Enhanced Super Digestive Enzymes&_sacat=0

Ah thank you!