Navigating The Site for Relevant Info

[*GG*]

Use the search function - The little magnifying glass icon in the top right corner.

Do you know what caused your relapse in Feb? Do you crash after exertion and suffer from PEM (post exertional malaise)?

Also, Going to this page, will help you narrow down what you see:

http://forums.phoenixrising.me/index.php

GG

 

[MargUK]

It's not easy to get a good overview. It happens to me that I think I have a good idea of the main topics and then I just found out about Lupus testing or Copper Toxicity.

Here's a "raodmap" that gives an overview over things to test for with ME/CFS
http://phoenixrising.me/roadmap-for-testing-and-treatment

For me Phoenixrising is most helpful when I figured out a new topic or supplement to then find experiences and information with the searchbar or google. Also if you have a question on a topic you can post and people share their experiences.

Some other health issues that I know of, just to look through and see if something could fit:
-Leaky gut Syndrome/ gut health/ food intolerances
-Histamine Intolerance
- Detox
- Copper Toxicity
-Adrenal Fatigue like you mentioned above also in connection with important calming neurotranmitters, activation of the sympathetic nervous system and parasympathetic nervous system
-figure out what basic tests to do: mineral or vitamin levels in the blood, Hair Mineral Analysis, neurotransmitter/ cortisol testing,..

THAT is exactly what I needed @PinkPanda - thank you so much! Perfect

 

[MargUK]

I simply click on New Posts, and then read any threads that looks interesting. You will slowly learn over time. The threads are sorted into forums of specific topics.

Also remember that most of the tests and treatments discussed here are completely speculative. One example is the "adrenal fatigue" you mentioned, which is nothing more than a fantasy internet illness.

Oh no really? Super glad I didn't spend too much time on research on it then @adreno! Your suggestion was exactly what I was doing previously but I was getting bogged down seeing all sorts of different things and not really getting anywhere positive. However now that I have the roadmap I think that'll help a lot.

 

[MargUK]

Hi @MargUK

If there is a specific topic that catches your interest the best way to search for threads on this is to scroll down the forums page to the bottom. There you will see the Resources Projects section. Select google site search and a page with a search box will open. Type your search in there.

Also, if you find something interesting that you want to come back to use the bookmark tab at the bottom left of the post. Then when you want to retrieve it you simply click bookmarks on the upper right hand side of the page you are on.

Thanks @Snowdrop - that was working fine if I knew what I was looking for but there appeared to be a myriad of different topics which I felt I wasn't tapping into just from what was being said in posts. I was also struggling to understand a lot of posts because what was being discussed was so foreign to me. I think the roadmap will make a big difference though!

 

[MargUK]

Anxiety symptoms (generalized anxiety disorder as it is called) and/or panic attacks are not uncommon in ME/CFS. Here is what worked very well for my anxiety symptoms:

Completely eliminated my severe anxiety symptoms with three supplements!


With beginners in mind, I compiled a roadmap document to guide patients to the treatments that well-known ME/CFS doctors use. This roadmap might give you a starting point, and then when you want to find more info, you can search these forums on a particular topic.

There are also lots of good introductory books that you could read to get a better overview of ME/CFS. Your local library or bookshop may stock one or more of these.

Erica F. Verrillo's book, Chronic Fatigue Syndrome: A Treatment Guide, is available online for free here, but for bedtime reading purposes, a paper book might be better.

That thread @Hip was the one I mentioned earlier that took me almost a week to get through! Although it was super helpful that's what made me despair because I thought if it's going to take that long just to read ONE thread on anxiety I'll never get through anything! But the roadmap is a really good idea - I think that will be just what I need And thanks for the link to the book - hadn't heard of that one.

 

[MargUK]

I have to say that I agree with this...years ago, my husband came across Adrenal Fatigue and we thought it applied to him, but after MUCH research we realized that not only is there no cure for Adrenal Fatigue, but in our endless reading of everything we could get our hands on about the topic, we did not come across a single person who had Adrenal Fatigue and was able to cure or improve it.

The common recommendation to improve Adrenal Fatigue is to avoid stress. Well, number 1: that's impossible for most people. And number 2: even when people had reduced their stress they were not improving at all.

So I think the Adrenal Fatigue is a bit of rabbit hole that will end up sucking away a lot of your time and you will not have anything to show for it. If you feel strongly about pursuing it, then do by all means, as this is just my opinion.

I'm so glad I started this thread because I could have wasted a lot of valuable time reading up on this @Basilico. And I totally agree that 'avoiding stress' is useless advice! You might as well say 'avoid life'!

 

[MargUK]

Also, Going to this page, will help you narrow down what you see:

http://forums.phoenixrising.me/index.php

GG

Thanks @GG!

 

[Basilico]

And I totally agree that 'avoiding stress' is useless advice! You might as well say 'avoid life'!

Very true!


I have no doubt that in many people, especially with CFS the adrenal glands are not functioning properly. But it seems more likely that it's a symptom of a larger problem (or a "downstream" problem) rather than being the cause, itself.

I think that trying to handle stress in a better way is a good for all people...and there's nothing wrong in trying some strategies to improve how we react when faced with stressful situations (doing some deep-breathing, yoga, meditation, a distracting hobby to shift focus, etc...)

I know you are having a hard time with pacing, since you can do something one day and it doesn't cause a problem, but on another day it does make you crash. My husband has this issue, his PEM is really volatile and tough to predict. His strategy is keep checking in with himself after he does each thing, and rests for about 20 min after he's done something even if he doesn't feel it's completely necessary. After 20 minutes, it's often easier to tell if it's ok for him to do something else or not.

Since you are feeling overwhelmed with what to focus on, my suggestion would be to start with PEM interventions. Check out the threads I linked to Hip's PEM busters and the liposomal glutathione thread I linked. I think there's a good chance something there will help. Unless you feel like the anxiety is a much bigger problem at the moment, then focus on the link that Hip sent on anxiety.

 

[Hip]

That thread @Hip was the one I mentioned earlier that took me almost a week to get through! Although it was super helpful that's what made me despair because I thought if it's going to take that long just to read ONE thread on anxiety I'll never get through anything!

Super-long threads are a problem for everyone on this forum. It's not just you!

You are looking for info, and then you see a thread with 39 pages, and you think" "Oh my God, it is going to take me days to read through all that!". You hope that most of the important information will be in the first few pages of the thread; but you never know if there is something important said at say 20 pages into the thread. But you have to be judicious about reading.

What I tend to do is read the first two or three pages of a thread, and then read the last (most recent) page of the thread, and then hope that covers most of it. It depends on how important the topic is to you. If it's not very important, then you can just read a few pages in a long thread. But if you feel the subject is vital to you, you may want to read more.


Another tip when looking for info is to search the forum on important keywords. So for example, in my anti-anxiety thread, I mention that N-acetyl-glucosamine has good anxiolytics effects. So then you can search the forum for more info on N-acetyl-glucosamine, using the search box on the top right of the page.

Such a forum search will give you the results shown HERE. Then you can quickly scan through those results, and see if there is anything of interest, which can then take you to new threads.