Thoughts inducing PEM

[Woof!]

After I wrote what I did above, in response to @Sizzle's question, I remembered feeling strongly that something else was helping me recover from being couch-bound. Since it took sooooo much energy for me to digest any food, for many years I ate only twice a day, and one of those meals was oatmeal with home-cultured unsweetened yogurt. I think this helped me de-tox in many ways (and the yogurt probably helped a lot with any gut bug issues I may - or may not - have been having).

When I began to get stronger, I could tolerate occasional snacks, and this gradually transitioned to being able to eat three meals a day again.

 

[lenora]

Hello Everyone......@Woof, I've never been able to return to eating 3 meals/day. It's just too much for my system, but I agree that things like yogurt help our gut issues. 3 meals is certainly closer to normal for us.
I hardly ever eat breakfast (but that's been my entire life).....just can't do it, have a good lunch/dinner and then, perhaps, a nutritious snack in the early evening. All eating and drinking has to be finished by 5:00 p.m. at the very latest.
Again, it's simply that we're individuals, not that we haven't tried. In some ways I feel better after all these years, in others worse.
Yours, Lenora.

 

[Sizzle]

Thanks to all of the above, that's a lot of info
Copied the tips over to our discord server, because we talk as little as possible

@lenora she asked for the ice-pack; don't know yet if it helped her
only have the non-wrapped kind here and Ace isn't in the shops, will look for a similar kind
She is bedridden, but she can go to the toilet by herself. Her sleeping room is on the top floor, but she stays one floor below that during the day because of the toilet being nearby
Same discord server has a research channel, in which I post all relevant info
She is 23, symptoms started probably a long time ago (exercise-induced asthma - the strange migraine attack years ago, which we thought it could be a sunstroke - pain lower legs, we will never know)
She has been diagnosed with ADD couple of years ago, was presumably brainfog already
Been diagnosed with MECFS/POTS a year ago and it has gotten worse
especially over a month ago , when she got bedridden

@ljimbo423 ; you answered my question

@Woof! ; yes, yt = youtube. It's to much for her right now to watch but will keep The Hornet King, the ASMR and mindless yt in mind hopefully for the near future

Still reading into all of this and gonna copy the next bit over the apheresis thread, but we've tried this scheme for 6 days (aspirin and nattokinase)
https://www.researchgate.net/public...o-elFe9UjQQTvDMGCYIeiRK6jmA1wuoH8rCoOQk77zptU,

She reported back; a bit less fatique, less pain while walking the stairs, a bit less Pots. Now we've stopped with the scheme, so check if it's persistent or not
Meanwhile I'm diving into the diet and nutriton (antihistamine) bit to see if the combo of Resting\Nutrition and the above scheme helps her out, at least a bit

 

[lenora]

Hello @Sizzle......you both have a lot on your hands, don't you? I'm sure it's very disheartening a lot of the time. I hope you find some help on our Forum. Wishing you both well. Yours, Lenora.

 

[lenora]

Hello @Rufous McKinney......It's true that we often feel drained just by being around others, especially those who are highly energetic. It's as if their battery is sapping all of our available energy also. My husband can drain me when he's exceptionally energetic....and a word doesn't even have to be spoken. I can feel it. Yours, L.

 

[Woof!]

Hello @Rufous McKinney......It's true that we often feel drained just by being around others, especially those who are highly energetic. It's as if their battery is sapping all of our available energy also. My husband can drain me when he's exceptionally energetic....and a word doesn't even have to be spoken. I can feel it. Yours, L.

Sooooo true, @lenora ! Talking with others takes a lot more energy that most people realize... and some people can drain my energy reserves without a word spoken!

 

[crypt0cu1t]

Yup, this is how I’ve been for the last year. Simple thoughts seem to make me Ill.

 

[xena]

My daughter is in a severe crash now for over a month and completely bedbound.
She thinks or knows that her thoughts worsen her PEM. She describes it as her head is burning.
Don't know what to do or what to tell her.

Could she be right ? Any tips?

yes- @Sizzle

Check out- the gupta programme, ANS rewire. DNRS is okay too but less tailored to CFS.

I've done these and they DEFINITELY have an impact on my fatigue.

brain/hpa axis is involved in regulating our fatigue directly. as well as immune system, digestion, liver, etc.
(and yes its a bidirectional thing and yes this is definitely a real physical illness). But there are many cases where folks have recovered through brain retraining. She sounds like a great candidate to benefit.

@crypt0cu1t might benefit you as well.

 

[Jphutch]

Thanks guys, she is very severe now so tasks switching of any kind will be a problem I'm afraid
will suggest the "mindless yt", though she will probably say this is not possible

@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November

Another thing that's starting to worry me.
If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?

How is she now

 

[Sizzle]

Thanks for asking

Still severe, still in bed. Trying to do as little as humanly possible
Because this includes not speaking (only through app) I sometimes have to guess
She has asked for an icepack 4-5 times in 2 months, I think this is for her "burning head feeling"

Completely resting does help a little it seems, but every time she is a bit better something disturbs her sleep/resting pattern making it worse again
We live on a corner, outside for 2 days they were cleaning the streets Power generator on the back, Pressure washer on the front, no escape from the sound. Terrible

Her tinnitus has become hyperacusis (I think)
Will ask a question about this in the appropriate thread

The little silver linings
Still interested in what's happening in the Ukraine
has a feeling the creatine helps
GP changed his mind from mental illness to "well, maybe..."

 

[lenora]

Hi @Sizzle....Your daughter's sleeping pattern may not ever return to what was considered "normal." She'll have a new normal and what it will be remains to be seen. Meds & vitamins (some) can affect sleep, so please check side-effects.

I do wish you had access to the Ace ice packs...they're so much easier to use (mold the head easier) and she may be more amenable to them. However, you may come across them one day. Here's hoping.

As far as noise goes, has she tried earplugs. It does take time to get used to them, but I swear they changed my life once I did. I use them daily and find them to be a great help.

I know it doesn't sound like she'll be interested, but what about super-soft music that may be comforting to her? As far as muscle tone that's a big problem for us.

I'm just now recovering from a pelvis that was broken in 4 places, plus a vertebra in the lower part of my back (a fall...I'm older). I've been doing very gentle leg exercises in bed...not stressful at all, but they may be too much for a person in an acute stage of the illness. Let's just say that she'll gain things back again although it may take somewhat longer. There's a big difference between gentle PT to keep you moving and PT that's meant to build the body up. I find both types to be painful, but the first is a good pain and I can see results immediately without feeling that I've been tortured. PT's are now more aware of our condition (in the U.S. at least) and I can convey my misgivings to them.

She's young, she has that going for her and combined with really good nutrition her body has a basis for fighting back. The GP sounds like he's listening and has probably taken it upon him/herself to learn more about the illness. That's excellent and is just the type of person you want to have on your side.

I hope things will soon change for both of you. It can be very disheartening not only for the patient, but for the loved ones. Yours, Lenora.

 

[Stretched]

Sooooo true, @lenora ! Talking with others takes a lot more energy that most people realize... and some people can drain my energy reserves without a word spoken!

So true. Words are symbols of thought; a conversation can zap me because it’s thinking. Then worry.
‘all worry is thinking but not all thinking is worry. Work enters the equation somewhere; maybe all thinking is work… .

 

[aquariusgirl]

The intestinal tract has 100's of different bacteria that live there. Usually in harmony, with a balance of healthy and unhealthy bacteria. Many of the unhealthy bacteria cause inflammation when there levels become too high. This is called dysbiosis and can lead to increased intestinal permeability (leaky gut) from the inflammation.

Leaky gut allows excess toxins like lipopolysaccharides (LPS) to enter the bloodstream in higher than normal amounts. LPS are toxins found in the cell membranes of inflammatory bacteria in the gut.

When I and many of us with ME/CFS take herbs that kill inflammatory bacteria in the gut, it often causes a worsening of our current symptoms.

When the bacteria are killed off with herbs, these toxins (LPS) from the cell membranes can enter the bloodstream causing an immune system reaction, which worsens symptoms in many of us.

This worsening of symptoms from the bacteria dying off and their toxins entering the bloodstream, we often refer to as "die-off" symptoms.

Did this answer your question?

Just getting to grips with gut bugs..imbalance ...whatever...like how high did you go with the herbal stuff? tnx

 

[ljimbo423]

Just getting to grips with gut bugs..imbalance ...whatever...like how high did you go with the herbal stuff? tnx

I was taking a fairly high dose at one time. I think it was equal to about 14-16 grams of herbs, but I was taking extracts and oils too.