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MITOCHONDRIA RED HERRING !!

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Posted 8/13/2015 2:15 PM (GMT 0)
I know we all hurt and are more than frustrated. This hopelessness drives people to try unfounded treatments and spend large sums of money with charlatans that say they can cure you.

I have been in the medical field and research for over 40 years and please let me make this clear. All the credible research on fibro and possibly CFS and MCS shows it is the bodies HPA axis stress response system that is stuck on is the cause of fibro.

Hundreds of muscle biopsies and other peripheral tests have shown our muscles and their biological processes and 100% OK.

We know why this tends to occur but not how to fix it. We also know drugs do not fix it and can actually stop recovery through a process known as neuronal-anesthesia...or simply the drugs keep the body from knowing where normal homeostasis is and it can not repair itself when intoxicated by chemicals.

I have been in touch with several medical people in New Zealand who have fibro and are having some success in recovery -I am just recently in touch with them and will know more later - I can say that it involves retraining the parasympathetic nervous system to shut off the stress response.

This running to the next cure promise or unproven research paper reminds me of a Robert Frost poem:

"Round and Round The Circle We Go - The Answer Sits In The Middle And Knows"
Posted 8/14/2015 2:18 AM (GMT 0)
I think i read that atp is the engine of the cell? All i know is when i use things that claim to increase atp...i do better...ie; d ribose m, microcurrent therapy, low laser therapy..these things all help..so i am not so sure about the red herring...

Lj
Posted 8/14/2015 11:49 AM (GMT 0)
Ok my brain did not want to absorb all that , but i think we agree about Atp.. : )
Posted 8/14/2015 10:25 PM (GMT 0)
Rockon and Ljm,
I too agree about our cells need for Atp. Atp also works with the actions of the HPA. I too am hypersensitive about the idea that we "get" Fibro because we can not handle stress. There is no "one" answer to as to why or what Fibromyalgia is or, why one gets this syndrome and the other doesn't. Having stated that, I would have preferred that we allowed this member/peer to state an opinion and then state ours. I feel upset by this thread. I know that when I was in my first several years, I went through lots of my own opinions about why I have it. I was also part of forums that disallowed my opinions if someone, or many someones, disagreed. I felt attacked.
Rockon,
I have learned so very much from you! I enjoy how much information you have at your fingertips and how much you share with me/us. As a MSW, empirical research and practice is just that, empirical. However, the empirical data is in a constant state of flux, yes? I would really like to have this safe space to give opinions and agree to disagree. Please, please keep informing us.
AndreM,
I stated all the above, now, I am going to state that while you are "in" the medical field, that does not make you "the" expert, correct? I understand that perhaps you have a trigger about what you believe is not a cure, nor helps us fibro survivors. I am giving you this benefit as I know I can come on too strong and people get hurt or upset. Stress and living with fibro is a huge issue but causing more stress is not helping. Many people use alternate medicines and modalities. There is no "one" answer. There just isn't. Please consider this as you continue posting your opinion and thoughts.
I sincerely hope that all on this thread understand I just wish for Fibro Peers to allow each and every opinion. If you don't agree, say it, but with care. :)
Posted 8/16/2015 6:02 AM (GMT 0)
Thank you Rockon
I am glad you understood me, people don't always, especially in posts/ texts. Taking away body language in these days of tech is strange.
No, I did not know these "red herring" titles were all over and could create isues. That a shame. We are here to seek heart felt help. Thank you for informing me of this.
Triggers are such a huge part of my staying Well! I avoid them if at all possible. Let's carry on now that the storm has been sent off to clearer sky's :)
Posted 8/16/2015 10:45 AM (GMT 0)
I've been hearing for years that fibromyalgia can be caused by our fight or flight response becoming stuck from ongoing stress.

As my chiropractor would say to those who asked, "But Dr., I was just brushing my teeth when the pain came on." There is probably delayed response to life's stresses too.

Here is an article that talks about this:

http://www.healthcentral.com/chronic-pain/fibromyalgia-38174-5.html
Posted 8/16/2015 3:51 PM (GMT 0)
I have a genetic form of fibro, stress definitely plays a roll in the disease..

It is just my opinion from my own study, and trial and error , that Atp also, plays a role...

He was just sharing his opinion and i am sharing mine..no problem
Posted 8/16/2015 8:37 PM (GMT 0)
I agree stress is a potential aggravator. I've posted many times that CRH, the first stress hormone, is a mast cell activator.
I walked to the grocery store last might, cuz a girl needs her toilet paper. Got going with lighter muscle spasms after the one block down the hill, and checking out the occipitals started up. Then I dealt with asthma trying to get home. It was the frst time my throat constricted a bit, too. I've never been able to use a rescue inhaler cuz the propellant makes my asthma worse. This goes back to 1985, long before I ever heard of MCS.
I reminded myself this has happened before, and I would make it home eventually, no matter how many times I had to sit down.

I like being up the hill a little higher out of the pollution, but sometimes there's more pollution and I don't know it at night. Its dark, So I don't see the haze, & Saturday traffic was busier. Now I will pay attention to When I go shopping. Tho I did say that to myself
the last time this happened, lol.

Post Edited (Rockon) : 8/16/2015 2:40:26 PM (GMT-6)

Posted 8/16/2015 9:41 PM (GMT 0)
Sorry to hear about your pollution, Rockon, but it's good to mention it because not everybody is aware it can be a problem for some.

Interesting about your throat constricting, I have vocal cord dysfunction which causes my vocal cords to close most of the way when they're suppose to open when I breathe. I went to an ear, nose, and throat doctor for this then he hooked me up with a speech pathologist.

She recommended that I do special breathing when my throat tightens. It helps me some. Breathe in expanding your belly, then breathe out doing the opposite.

My throat constricts so severely sometimes I feel like I'm choking on bits of food. I do the special breathing and it helps. My speech pathologist says triggers like allergens, pollution, stress, and cigarette smoke make the issue worse for me.

Yes, you might want to pay attention to when you go shopping just as I have to pay attention to when the asphalt plant 1/2 mile from us is operating.
Posted 8/17/2015 5:09 AM (GMT 0)
LJM: I forgot to say fibro is a family thing for me to.

Almost medfree
"Yikes" to having an asphalt plant to deal with.
I tried that breathing out. Its weird how that relieves some tension in the throat. I prolly need practice to build stamina to do it for long. Thanks for the tip!

Post Edited (Rockon) : 8/17/2015 1:27:55 AM (GMT-6)

Posted 8/17/2015 10:22 AM (GMT 0)
Your welcome, Rockon. My speech pathologist had me read passages out loud to practice the specialized breathing technique. This came in very handy because in a place like church a person tends to elongate the time between breaths when singing and such. Now I take care. I'm glad to be aware of it.
Posted 8/21/2015 2:45 AM (GMT 0)
Most of my muscle spasms and weakness, trigger knots, migraine started after I lost my sister suddenly seven years ago. I did try adrenal hydrocortisone for almost a year but it didn't help.

I wasn't diagnosed until last sept. I also had low thyroid at the same time symptoms started. Once I got on a good dose my pains got better. Then last year it returned. I was then diagnosed with lyme.

Still not sure about lyme. Just went to another doctor who sent blood to Igenex fir more testing.

He said fibro can be lyme.
Posted 8/21/2015 6:13 AM (GMT 0)
Fibro and Lyme disease are two separate illnesses. But you can have both Fibro and Lyme at the same time. Both share many of the same symptoms but they each have different treatments so it's important to try to get the correct diagnosis. Sending blood work to Igenex Labs is good to do. I hope you get your answers soon.

Sherrine
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