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katydid

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Hey guys!

This is not spam, I promise!

So I found some information about fibromyalgia that I really wanted to share with everyone...
I know most of us research our behinds off, but sometimes we don't see some of the good stuff...
I know people are always curious about new research being done and such, so I really really wanted to share this with you guys.

This link in my post is to a medical journal, no ads, no garbage claiming to be a cure etc, it's strictly research and information... That's why I want to share it..
The title is called "mitochondrial myopathy presenting itself as fibromyalgia" and it's an actual case study with a real patient!

One thing to keep in mind is this is a theory and research, they're not saying that this is the cause, just a theory..

Now, my aunt has what's called a mitochondrial myopathy, lactate dehydrogenase deficiency, type 11a, big name right?.... She sees one on the top specialists In our region for immunology, his names Dr Julian ambrus, well last summer she had asked him about me and my other cousin.. Apparently, and I've researched this also, but these mitochondrial myopathies can be genetic and run in families.. I have found other medical journals and documents showing the correlation, but I had to do some digging because most doctors don't know a whole lot about mitochondrial myopathy.. Also, I should mention, there are many types of mitochondrial myopathies...
Anyways, this Dr seems to think it runs in my family apparently, he wants to see me, but I haven't called yet, as I have had it with Dr's poking and prodding and wanted to explore my other options with treatments before I added yet another day into the mix...

But like I said, I really wanted to share this info with you guys because you just never know and I feel it's empowering for us to learn and explore and know what's going on in the medical community...

Also, if anyone has been keeping up with link56's posts about mayo clinic this week, he mentioned that they were taking about lactic acid levels being overactive and such, and this is why I felt like I really wanted to share this because if the mayo clinic is talking about similar stuff, maybe this has some weight to it then!

Check it out and let me know what you guys think!
And if you are intrigued, do some research and see what you can dig up!

Hope you guys find this as interesting as I do!
 

Siderea

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I read this abstract elsewhere. Is this related at all to myofascial pain? The name is so similar that I would guess there is a relation. I have a friend with fibro who has myofascial release therapy done regularly and she claims it helps her a lot with all of her pain.
 

katydid

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I read this abstract elsewhere. Is this related at all to myofascial pain? The name is so similar that I would guess there is a relation. I have a friend with fibro who has myofascial release therapy done regularly and she claims it helps her a lot with all of her pain.

I don't believe so, but I would think that mitochondrial myopathy could be presenting itself as other ailments as well besides fibro!... Mitochondrial myopathy is basically in a nut shell neuromuscular diseases caused by damage to the mitochondria, energy-producing structures in cells that serve as power plants. Nerve and muscle cells require a great deal of energy and are particularly impaired by mitochondrial dysfunction.
Mitochondria is part of our DNA.. So one could wonder, are we born with this?. Is this a possible reason for our pain and fatigue?.....
I know in my family's history (they know my aunt has it, my other aunt who passed had it, I believe they are in the process of diagnosing my uncle, they think my grandmother had it she passed over 2 decades ago, and they think my cousin and I have it! All of my mom's side of the family,!) but in my aunt, other aunt, uncle, cousins and my case, some form of trauma triggered the symptoms!... Weird right?
 

Trellum

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Katie, thanks a lot for thinking about us and sharing this! I will definitely read this carefully later, since right now I'm in such a hurry, but I'll surely check it out once I'm done with the things I need to get done today. I read some part of it, btw... and I had already heard this theory, I think there is a doctor in England who firmly believes in this theory.
 

Siderea

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Is the mitochondria associated with the ATP of muscles at all, since they're both muscular energy sources? One of my doctors wants me taking creatine supplements in order to raise the ATP of my muscles, believing my pain was coming from a lack of muscular energy. It did help, but caused insomnia issues that were not worth it. The fact that it helped raised a lot of questions about musical energy for me.

How are your family members with mitochondrial myopathy being treated? Is there any treatment? If DNA is damaged, what can we honestly do about it? I wonder if it would be worth trying these treatments on people with fibromyalgia.
 

katydid

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Katie, thanks a lot for thinking about us and sharing this! I will definitely read this carefully later, since right now I'm in such a hurry, but I'll surely check it out once I'm done with the things I need to get done today. I read some part of it, btw... and I had already heard this theory, I think there is a doctor in England who firmly believes in this theory.

Can't wait to hear what you think! And it's neat you've heard this theory!
 

katydid

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Is the mitochondria associated with the ATP of muscles at all, since they're both muscular energy sources? One of my doctors wants me taking creatine supplements in order to raise the ATP of my muscles, believing my pain was coming from a lack of muscular energy. It did help, but caused insomnia issues that were not worth it. The fact that it helped raised a lot of questions about musical energy for me.

How are your family members with mitochondrial myopathy being treated? Is there any treatment? If DNA is damaged, what can we honestly do about it? I wonder if it would be worth trying these treatments on people with fibromyalgia.

Atp? Not sure what that stands for, I probably know but can't think of it at the moment due to my brain has shut down for the night lol. I believe in the article they state they gave the patient creatine as well as other supplements/ medications in a cocktail for, basically one wouldn't fix the problem, they needed a mixture kinda like our Dr's try to do with us for fibro meds... But yes it deals with muscle energy! You're spot on with that!

And my aunt is treated with a cocktail of supplements/medications similar to the patient I the case study, my uncle is still in the process but they've started with supplements/ medications as well, and my cousin is In the process of all the extensive testing and what not but she's in a different state with different Dr's so they're looking at other things along with mitochondrial myopathy, and I haven't seen this Dr yet because I want to exhaust everything else first before adding yet another Dr to my long list!.... Lol its exhausting dealing with seeing as many Dr's as I do (I have other health issues besides all my pain issues...) I feel like it's a part time job just trying to keep up sometimes!
 

jo2012fm

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Great article and reference.

I added it to my Fibromyalgia Research wellboard:

*Advertising Link Not Allowed*



ATP is adenosine triphosphate. It's an adenosine molecule with three phosphates attached to it in a row. When the last phosphate of the row is broken off, the remaining molecule has only two phosphates -- it's ADP or adenosine diphosphate.

This process can happen over and over again.
1. ADP gets a phosphate stuck onto it, forming ATP. This process requires energy from the cell, and the energy is stored in the high energy bond between phosphates.
2. When the cell needs a small amount of energy to use, it breaks off one phosphate from the ATP. Energy is released to use. The molecule parts that remain are ADP and a phosphate.

The cycle:
-- build ADP and a phosphate into an ATP to store energy
-- break ATP into ADP and a phosphate to release energy to use

This is how the muscles in your body get the energy to move and function.
 
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bewitchedfencer

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Is the mitochondria associated with the ATP of muscles at all, since they're both muscular energy sources? One of my doctors wants me taking creatine supplements in order to raise the ATP of my muscles, believing my pain was coming from a lack of muscular energy. It did help, but caused insomnia issues that were not worth it. The fact that it helped raised a lot of questions about musical energy for me.

How are your family members with mitochondrial myopathy being treated? Is there any treatment? If DNA is damaged, what can we honestly do about it? I wonder if it would be worth trying these treatments on people with fibromyalgia.
ATP is produced in the mitochondria so any kind of mitochondrial distortion would likely cause problems with ATP production. In fact, the mitochondria is considered the 'powerhouse' of the cell because it is the main site of energy production. Essentially the mitochondria is where glucose (sugar) molecules are broken down into pyruvate. This process (known as glycolysis) creates some ATP in the process but without using oxygen to do so which is why this is referred to anaerobic respiration - a byproduct of this process is lactic acid which builds up in the muscles and is what causes muscle cramps when you exercise. The pyruvate (a substance made from glycolysis) is then taken to another part of the mitochondria where aerobic respiration takes place and where more ATP (the majority in fact) is produced. I hope this provides some context! :)
 

katydid

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Awesome thanks for adding all that bewitchedfencer!
 

alexisfinch24

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Great information. Thankyou for sharing. It really helps when we work together and, share information we find. I am still pretty new but, I am still just so glad I joined this forum.
 

bewitchedfencer

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No problem! I actually told a friend of mine about this study and she is talking to her doctor about mitochondrial myopathy. It turns out that she (also diagnosed with fibromyalgia) was taking many of the supplements listed in this study a few years ago and it was the best she ever felt. She is going to talk to her doctor about taking them again. I don't know if it will pan out, but it's worth looking into.

And I agree, I am also glad I joined this forum! :)
 

Allison

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I am so sorry to hear about your aunt. Most if not all autoimmune diseases are known to travel within a family. Sometimes it may skip a generation. My family has a history of Lupus, Diabetes, Thyroid conditions, and others.
 
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