Am I really getting better?

[Murph]

@Murph Yeah it's the start of summer here!

Try to bank all the improvements you can because you may need them at the start of winter! (hopefully this advice doesn't sound too negative!! I do believe we can improve!)

 

[hellytheelephant]

@AdamS that is great news that you are able to do more...and it is totally understandable that you are thinking
about how much to do.

In my 20's I was very sick for about 10 years and then got better to about 75% of normal. Like those above I did push it too hard and kind of thought I was well, had ticked that box etc. ...I really pushed myself for years and then crashed big style over 3 years ago after repeated episodes of acute health problems turning chronic. I was on my own and abroad teaching TEFL so had to keep myself going...coffee, sugar etc...

I now function at 20% of normal in Winter and 30% in Summer.

If I have advice it would be: listen to what your body is telling you when it is NOT cranked up on alcohol, caffeine or sugar- it can be all too tempting to do that bit more with a few empty calories or caffeine giving you a rush of energy that you don't have. Alcohol is full of sugar too. As part of my pain management I set my alarm to go off every 2 hours and I check if I need pain meds and also how I am doing? Do I feel ill any symptoms? What is my body telling me- does it need rest/ lie down/ darkness, meditation etc.

I also find keeping a very brief daily diary has helped me to understand ME better...and I can flag potential problems earlier.

The other thing is that there can always be other things that can overbalance you- emotional situations, bereavements, moving house, infections, operations, pollutants.....all these things are out of your control...and probably will affect your symptoms.

Wishing you well

BTW: I also have POTS and take an electrolyte that has no sugar or sweetener https://www.amazon.co.uk/gp/product/B00L7WXIFE/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1 I also eat every 2 hrs but not sugar!

 

[ljimbo423]

In my own non medical opinion i believe CFS is initiated by gut hyperpermeability, in my case this is true. For others I cant say. I have many many reasons for that, angioedema, aggressive food responses, leaky gut test etc. This causes a immune reaction to shut down krebs to protect mito, or something to that effect. I also think in some way high stress changes microbiome to allow this to exist. Quite often I read CFS started with gut flu, infection, etc.

I couldn't agree more! I think gut hyper-permeability is also the core issue with my cfs. I have taken 35-40 courses of antibiotics in my life, also had a very high junk food diet and very high stress life. All of which can cause or worsen a leaky gut. I was tested for dysbiosis at one point and the test came back as a 18 out of 20.

Zero on the test showed no dysbiosis at all, 20 was as high as the test could measure and I was an 18 = severe dysbiosis!! I'm just really starting to get my gut re-balanced and it's not easy but I am convinced if I don't, I can't get healthy.

I had no idea treating the gut would be so difficult, but it is. I also agree that the leaky gut causes and immune response. From there, I think the immune system activation and dysfunction cause enough oxidative stress to impair the mitochondria and cause all other symptoms. Continued good luck on your healing!

@AdamS - I think you have a very good chance of getting healthy with the right interventions! Never give up!!

EDIT- I was also taking nonsteroidal antiinflammatory drugs (nsaids) like Aleve every day, 1-2 years before my cfs got really bad. Nsaids, are also known to cause ulcers and intestinal damage when taken long term.

 

[Tammy]

Yes I found this even when I was mild, i'd have to take snacks to work with me and eat them at around 10:30am between breakfast and lunch otherwise i'd start to feel spaced out. It would also happen on long walks > 5 miles. The funny thing was, I didn't think I had ME then, I just thought that was normal!

I haven't taken anything to support adrenals, what would you suggest?

A light balanced snack for the adrenals every couple of hrs. such as a fruit (for glucose and potassium) with a vegetable for mineral salts (sodium). Some supplements to help support the adrenals include:

Chromium
Eleuthero
Astragalus
Ashwagandha
Licorice root
Vit. C
...........I'm sure there's more

 

[AdamS]

@ljimbo423 @gregh286 Agreed on the gut issues. Before my decline into full blown ME, I had two pretty significant spells of illness related to the gut, the first was a bad case of dysentery and the second was severe abdominal pains followed by what felt like PEM for the next few days/weeks. I believe it was these episodes which started my downward spiral, I was never the same after them. Pehaps they changed metabolic pathways or something?

If this was software and I was troubleshooting i'd try the following:

- Replace gut with new healthy one to see if it fixes the energy problem.
- Reset immune system (system restore for windows users haha).
- Get rid of any viruses/bacteria (Spyware, adware, trojans etc lol).

Wishful thinking ey!

 

[overtheedge]

@TiredSam I feel ya on the problems sitting in front of a computer. What has really worked for me is buying a laptop tray, like this I can just lie in bed and deal with whatever I need to, of course this is assuming you have a laptop. Having a wireless mouse and keyboard have helped as well

 

[TiredSam]

@TiredSam I feel ya on the problems sitting in front of a computer. What has really worked for me is buying a laptop tray, like this I can just lie in bed and deal with whatever I need to, of course this is assuming you have a laptop. Having a wireless mouse and keyboard have helped as well

Thanks, I appreciate the reply. I spend most of my day on the sofa with my laptop, so I can still get a lot done that way. There are some things that I like to do from the desktop in my office though, where I can reach my files, use the printer and copier etc, and being in the living room means I get disturbed a lot by people wanting to watch the TV or just sitting down for a chat when I'm BUSY. So longterm I'd like to be able to do a day's work on my desktop in the office, it's more convenient to work in there and it's a good test of whether I'm ready to do any of the stuff higher up on my list.

 

[ljimbo423]

Agreed on the gut issues. Before my decline into full blown ME, I had two pretty significant spells of illness related to the gut, the first was a bad case of dysentery and the second was severe abdominal pains followed by what felt like PEM for the next few days/weeks. I believe it was these episodes which started my downward spiral, I was never the same after them.

I see comments like this VERY often here at PR. It sounds to me like whatever caused the dysentery, probably altered your microbiome enough to either cause, or worsen, intestinal hyper-permeability.

Then, lipopolysaccharies(LPS) from bacteria in the gut, get into the bloodstream, cause immune system dysfunction, mito. dysfunction and other symptoms.

Like gregh286 said, I think it's the LPS that are causing the dauer effect in the mito that Robert Naviaux talks about. Causing them to hunker down and go into a state of hypo-metabolism. This is what I believe anyway.

Treating the gut is very difficult for most, me included. If it pays off in the end, like I think it will, it would have been more than worth the effort!!

 

[rebar]

Adam do you know about Ken Lassessen, I started to use his recommendation about a month ago, all his information about altering the gut comes from pubmed. It's a very reasoned out approach. Herbs to diminish the unwelcome overgrowth and proper probiotics to reset. There is a great deal of information on his site. Lipkin's recent works ties in closely to what Ken does.
It gives you a plan, an approach to correct the disfunction.

https://cfsremission.com/author/lassesen/

 

[AdamS]

@rebar Yes i'm aware of Ken's work but haven't actually tried it. Maybe it's worth a shot!

 

[gregh286]

I see comments like this VERY often here at PR. It sounds to me like whatever caused the dysentery, probably altered your microbiome enough to either cause, or worsen, intestinal hyper-permeability.

Then, lipopolysaccharies(LPS) from bacteria in the gut, get into the bloodstream, cause immune system dysfunction, mito. dysfunction and other symptoms.

Like gregh286 said, I think it's the LPS that are causing the dauer effect in the mito that Robert Naviaux talks about. Causing them to hunker down and go into a state of hypo-metabolism. This is what I believe anyway.

Treating the gut is very difficult for most, me included. If it pays off in the end, like I think it will, it would have been more than worth the effort!!

Yea I think that's about the height of it.
Colostrum meant to be pretty good for leaky gut.

 

[ljimbo423]

Colostrum meant to be pretty good for leaky gut.

I have also heard that colostrum is good for a leaky gut. I am taking 2,400 mg a day and would like to take more but it's expensive and I can only stretch a dollar so far before it breaks.

 

[herpesbaby]

@AdamS how are you doing?

 

[AdamS]

@AdamS how are you doing?

Not great at the minute! I've come down with a throat/upper respiratory tract infection.

 

[dangermouse]

Not great at the minute! I've come down with a throat/upper respiratory tract infection.

Yep, seems to be a bug or two about. I had the upper respiratory one, then a weeks break, then I've got (for almost two weeks now) a stomach bug!

Hope you feel better soon.

 

[Alvin2]

I didn't read the whole thread but you are adapting to less energy as shown in your first post and might even be recovering a bit. This disease fluctuates in some people, but the same advice applies stay in your energy envelope. Some people do recover only to come down hard later, so if you do recover stay vigilant (and still within your expanded envelope).

Also people like to say your improving even if your about the same because they want to feel that your doing ok.

If your very lucky you don't actually have ME/CFS but something that mimics it and its going away

 

[AdamS]

Quick update for those interested.

My upper respiratory tract infection cleared pretty quick.

I also survived 4 hectic days in London last week, needed a few afternoon naps (45 mins max) but otherwise no PEM. I also attended various events and went to a few bars on an evening, few tiny dizzy spells but nothing major. Main issue was plantar fasciitis in my foot...got round that with stretching and taping though.

Also...it could be coincidence but it seems that as a result of my increased activity in London, i've been able to do marginally more in the gym. Super light and weights, 5 reps max, huge rests between, listening to my body, but feel a tiny bit stronger. Additionally i've been able to focus a bit more on projects on my laptop. I'm being super careful, the disease is still there, but i'm learning my limits a bit better each day.

Thanks for everyone's help in my journey so far, still got a long way to go but couldn't have made it to this stage without your advice.