Conference info for those interested

[niaholt]

Here is a thread from Phoenix Rising newsletter on the Australian CFs Conference held at Bond UNi. http://forums.aboutmecfs.org/content.ph ... d-Vallings

I only read what I believe relates to me....23 yrs tired of reading the other goobily gook.

I like this bit presented at the bottom on the blog from research from a Dr. Baraniuk Spinal tapping that Cort Johnson was involved in at Georgetown University. I feel it applies to me. He also recommends the AR for treating this as the amygdala is involved.


"Focus on the Brainstem - In particular he’s focused on the gating mechanisms in the lower part of the brain that filter the amount of information that the upper part of the brain receives. He believes that the neural circuits running from the spinal cord to the brainstem are not working properly and that the system that should close and latch those gates is dysfunctional.

These gates filter out unnecessary information and protect the brain from being flooded with too much information. He believes they’ve been left wide open in chronic fatigue syndrome (ME/CFS). The most critical neural circuit appears to be the Papez Circuit which ties together the anterior cingulate, amygdala and hippocampus. It’s associated with heightened awareness and anxiety and effects autonomic nervous system functioning.

Interestingly studies have shown that the gating mechanisms involving pain are wide open in fibromyalgia patients. (FM patients display over activation of the pain producing and under activation of the pain inhibiting circuits in the brain. Dr. Baraniuk believes ME/CFS, FM, GWS, etc. are all subsets of each other.) Which problem is accentuated in each person may depend on where small ruptures in the blood vessels occur."

For a longer version...http://www.aboutmecfs.org/News/BrainProteomeMar10.aspx

[lili2701]

Thank you Nia!

How are you feeling at the moment? Is your pain getting better?

By the way, have you heard of Donna Eden exercises? I guess you have, like the homolateral crossover, we talked about this before. There's another exercise for women, for hormone balance, I do that every day now, also the hook-up exercise to calm down etc, this is good, I feel good doing it cos I know I'm at last trying sthg! And then the EFT etc..

Have a nice day!

[niaholt]

Thank you Caro,
If I stay off the computer I can manage the pain better. However what does one do if you cant get off the couch all day when you are too tired to read. I had started to have glorious sleep after about 3 yrs but since the flood I have not...images in my head I guess.
Yes I did look at Donna Eden some time back and was doing that. You know I am getting on in yrs I just plain forget to do stuff and am too tired to do most of it all. If I get sleep I can manage better.

I spend most of my day thinking cal...m. That is why the above theoryI posted is I believe my problem.If I have a short outing right now, I dont sleep that night.

I am involved in the Australian trials at Bond Uni but not going to go on with them...treat us like cattle...too upsetting. When I was in bed for 3 1/2 yrs, not able to do much for myself, I was put on Xyprexa, it stopped the anxiety,panic attacks and I got out of bed and began to live again....still at a low level. Since I can no longer take it, I believe that stopping and calming the anxiety allowed my body to do what it was meant to do...function in a normal way. I was by no means well but I could go out and look after myself. I dont think it is all of the answer but part of it..... our brains are being bombarded with stuff we are not aware of.

[lili2701]

Nia, what is Xyprexia? why cant u take it anymore? because ur liver cant process it?

I hope you sleep well tonight Nia, thats a good thing you got news from your daughter!

send you my lovexx

[niaholt]

Xyprexa is heavy duty for Schizophrenia and other anxiety disorders. Yes it was my liver that stopped everything.
A Dr had given me certain less "harmless" drugs to make me sleep and I developed Parkinsons symptoms from them...a real mess i was in 2001

The neurolgist in hospital said he had to be careful what he could give me as the drugs were all still in my body so he chose this drug. Suddenly I came alive, could sit up after 3 yrs, and look after myself so he said stay on it. It is not a nice drug.....gives you diabetes but i slept, could socialize a little. Now I dont sleep well and little stress sends me over the top. it toned down the Autonomic nervous system.

[lili2701]

Nia,

it's such a long path! you're real inspiration to me, you are so brave. =I understand the stress problem, I argued with a friend yesterday and couldnt sleep, its getting worse and I4m trembling cos she sent me a long mail full of asty stuff, well not her but a friend of her I dont even know, pff pathetic, like a 4yo kid. Anyway so now Im hyper and need to calm down!

btw i stopped the HC, i was scared, will see how it goes without it. will try licorice instead.

[neil25]

(Quote)A Dr had given me certain less "harmless" drugs to make me sleep and I developed Parkinsons symptoms (Unquote). (Nia)

Hi Nia

What was the name of the drug that gave you these symptoms? I'm interested?

[niaholt]

Neil,
I dont think you have Parkinsons.....I did not get a fast heart beat.....could not hold a fork etc
One drug was Seranase and I forget the other.

[niaholt]

Lilli,
That is exactly how I behave after a nasty family member says even the slightest thing about me. ...complete over reaction. I have walked around saying STOP STOP making songs with Stops every time the stupid thought came into my brain. These people know their target and with your sweet personality they got at you.

Distraction is the key but it becomes like an obsession that takes you over. i got accused of taking over the CFS support group when I had been in bed for a year!!! ....try and work out how impossible that would be.

We love you here so that is all that matters...after all we are the people who matter the mostest !!!!

[kenvj]

Thanks for this Nia - I find the bit about Dr Barauik and the brain stem connections and gates extremely interesting. This brings us back to the Autonomic Nervous System and interestingly enough to the Amygdala.
Ever since I was diagnosed as having Asperger's Syndrome I have wondered about a possible connection with CFS. The brain can be seen as a super computer and as the brain itself is controlled by electrical impulses it makes it more understandable that "gates" could remain closed or be left open if the wiring is wrong. The connection with Aspergers is that people with this syndrome have a brain that is wired differently than Neuro Typical people. As Dr Barauik is saying the different wiring is affecting the Autonomic Nervous System and causing anxiety which of course is setting up Flight or Fight response - because they have a differently wired brain Asperger people seem to be born with an Anxiety/Depression Disorder, it occurs to a lesser or greater degree in different Aspies. For me it was quite severe and is the reason for much grief in my life and I believe for my CFS.
Food for thought indeed.

[neil25]

Kenjv if you have been diagnosed with autism do you not think this could be causing your symptoms. Why do you label yourself with CFS if you have aspergers?

[lili2701]

thanks Nia, well I dont care what she thinks really, we were usually out with another friend who also turned her back on her, she's a very difficult person and oesnt have many friends, she never understood my CFS, she would put pressure on me for being there at her bd party every year (she doesnt live close to me) and that would bugger me big time because she doesnt care wether i was feeling ok or not, i just had to be there and please her. Lately she has been complaining all the time because she cant find a boyfriend, she's healthy she doesnt work and lives at her parents, to me she's lazy really and I cant stand people complaining for nothing so I told her what I thought cos when I'm feeling bad she tells me to pull myself together that i need "a kick in the arse", she told me that the last time I had a bulimia crisis cos to her its just a quuestion of will power, I hate that, i dont need a kick in the arse, i need friends who are there for me not people who think i'm a weak cow. so I told her cos I was so fed up with all this and my other friend too, well now I wont be seeing her again, we're so much different, she even let a friend of hers who we dont even know, send us a long mail full of insults, I felt we were in primary school, that was so ridiculous my other friend and I actually laughed! it was pathetic! a real kid, poor girl she'll turn30 soon that's sad. And i'm sad cos we had laughs together and ill remmeber them always.. but she's changed and she's too immature and selfish. pity!