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Posted 11/24/2014 7:08 AM (GMT 0)
When diagnosed with fibro by a neurologist and a rheumatologist I was told by both of them that they believe that Fibro is pretty much a chemical imbalance in the brain that triggers pain to the nerve endings. I was also told that eating better, staying hydrated and exercising I could probably go into remission. I was then told to pace myself and not over do it. I'm confused because logic would tell me that exercising and eating better being a cure all would suggest that fibro would be a simple disease and not have anything to do with the brain or nerve endings. Also, if it is just a disease of the nerve endings why would we have to watch it to not over do it? I mean if it is just a nerve ending issue wouldn't we only have pain and thats it. Seems to me that Fibro is so much more than just that. We have a flu like sick feeling all the time, pain all over, headaches, joint pain, muscle pain, fatigue, low vitamin D levels, low sugar levels, stomach and bladder problems, the list goes on and on for most of us and not to mention we do get worn out and over do things way easier than before Fibro. How can you physically get worn out if it is just your brain sending the wrong signal to your nerve endings? To ME it is almost impossible to be just a nerve ending issue. Does anyone have any thoughts?
Posted 11/24/2014 12:29 PM (GMT 0)
I agree. The fact is No One knows for sure what's going on. A few yrs back the thought was nerve endings. And if you listen to a Lyrica (spelled wrong? ) commercial that's what they say. They make me so mad bc they paint fibro as if it's just aches and pains and they never use a man. (Sorry rant over).

I tend to believe it's more of a signal problem. Where wrong signals are being sent out then the tendons, ligaments and muscles are going what? Then they respond with Oh we must have something wrong with us. We need to respond back to Mr. Brain that we are hurt. Let's respond back ten times louder than usual! !!

These chemical messengers control lots of functions as well, such as sleep, body temp, skin sensitivity and so on and so forth.

Is Just a big old jumbled up mess. That's just my theory. But man I hope someone cracks the code.

Michael
Posted 11/24/2014 4:02 PM (GMT 0)
I hope they crack the code someday too. It would be nice to know for sure what is exactly going on in my body. Our bodies. A big old jumbled up mess is a good way to describe us all. Lol
I just feel like there is way more to it than anyone knows.
Posted 11/24/2014 4:24 PM (GMT 0)
Didn't i read somewhere that our cellular Atp, is deficient? Thats the energy maker in our cells...thats why the alternative drs.. Recommend ribose to increase atp...all i know is when i use the ribose ..i have a lot more energy to work than if i do not take it..

I also use therapy modalities that increase APT ...i think it was described as the energy mitrochondia in the cells..all these help me..

Now this is not the cause of fibro but a by product of the disease...

I sure will never go a day without taking it..
Posted 11/24/2014 4:32 PM (GMT 0)
Where do you get Ribose?
Posted 11/24/2014 9:31 PM (GMT 0)
Hi, Lily's Grandma, and welcome! Well, from what I've read, Diets don't seem to affect fibro. It's always good to eat healthy but that won't cause a remission. I've been eating healthy for years and I still have fibro. Fibro waxes and wanes.

Doctors studying this illness think it's a neurological problem.

Have you had a chance to read Fibro 101...the first thread on the forum? There are links to good info about fibro and you will learn a lot there. When you first open Fibro 101 there is a link to an interview by Dr. Daniel Clauw. He is one of the top doctors studying this illness. He explains what they think is going on and it really is pretty easy to understand so you should check that out. All of Fibro 101 is good so do read it. I hope this helps you understand this illness better.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 11/25/2014 5:15 AM (GMT 0)
Hi i get ribose from amazon, just bought a brand called Drs Best.


Years ago an alternative Dr. Wrote about this for fatigue with fibro..and it has helped with the fatigue for years. It does not change my pain..i have to work on that as a seperate issue. But over time it helped me be able to do more.

I did get into trouble this year with my vitamin d getting too low.but as that comes up , i am able to do more again.
Posted 11/26/2014 3:32 AM (GMT 0)
I will have to try it. My vitamin D is low too. I tool 8 weeks worth of a high dose of vitamin D and now for a couple weeks of taking the over the counter 2000 u I feel like it might be going back down again. So I will probably have to go back on the prescription stuff.
The ribose sounds like it would help a lot though. Definitely sounds worth trying.
Thank you for the info. Take care.
Posted 11/26/2014 5:28 AM (GMT 0)

Lily'sGma said...
When diagnosed with fibro by a neurologist and a rheumatologist I was told by both of them that they believe that Fibro is pretty much a chemical imbalance in the brain that triggers pain to the nerve endings. I was also told that eating better, staying hydrated and exercising I could probably go into remission. I was then told to pace myself and not over do it. I'm confused because logic would tell me that exercising and eating better being a cure all would suggest that fibro would be a simple disease and not have anything to do with the brain or nerve endings. Also, if it is just a disease of the nerve endings why would we have to watch it to not over do it? I mean if it is just a nerve ending issue wouldn't we only have pain and thats it. Seems to me that Fibro is so much more than just that. We have a flu like sick feeling all the time, pain all over, headaches, joint pain, muscle pain, fatigue, low vitamin D levels, low sugar levels, stomach and bladder problems, the list goes on and on for most of us and not to mention we do get worn out and over do things way easier than before Fibro. How can you physically get worn out if it is just your brain sending the wrong signal to your nerve endings? To ME it is almost impossible to be just a nerve ending issue. Does anyone have any thoughts?

Eating better can help. I developed sensitivities to chocolate, ice cream and I am sure a few more things, that I didn't have before fibro and if I eat them now I get real sick. Also, exercising puts me back in bed as I have post exercise malaise.

I was able to get out of a huge flare by changing my diet, but I am in no means in remission. I have to watch my diet, stress, activity level and so forth every day to function at a 50% level from before fibro (physically and mentally).

I think that the brain is misfiring, but I don't think it is the cause, I think it is another symptom. My fibro came on the heals of West Nile, so I am inclined to think it is a virus of some sort that causes the immune system to turn on itself - but, that is just my opinion.
Posted 11/28/2014 6:05 PM (GMT 0)
If you think about it, fatigue does make sense in a neurological issue like FM. One of the key problems after a traumatic brain injury is severe fatigue, and it can last years, if not indefinitely. I think of FM as an internal brain injury of an unknown (and hard to track!) origin (likely different cuases in different people, physical and/or psychological trauma, even both). The malfunctioning nervous system would indeed cause potentially debilitating fatigue. That's the part I find most difficult to live with. I can sometimes work through the pain. I can't work through the fatigue without getting seriously sicker.
Posted 11/28/2014 7:32 PM (GMT 0)
Two days ago I had one of my rare days where the pain was not so bad. It happened to be quite calm outside. I decided to bring up some Christmas decorations from the basement. When I do stuff like this I always do too much. The extra stair climbing helped lose a pound. Need to climb a lot more stairs.

I already yesterday felt that I likely did too much the day before. At the moment, I am much worse. It is always my head that is the blunt of my pain. Sometimes I feel like my head is going to crack. Sometimes I feel like my jaw going to break.

I have known for a long time that I have sensitive nerves and I can feel the nerves buzzing sometimes.
I have had many weird sensations over the years.

I, too, would like to hear a true medical reason for what is happening inside. The Osteoarthritis is visible. I was always frustrated when tests do not show much, if anything, I felt that they were going to find something really wrong and be able to help me more. Still waiting.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 11/28/2014 12:35:24 PM (GMT-7)

Posted Today 5:47 AM (GMT 0)
The do too much thing is sooo frustrating. It gets to the point where you dont know what you can do cause it seems the limit changes day to day. So what is too much one day is not too much another. Its hard to manage but I have been trying to pay attention to what is my first trigger of a flare so I can rest and eat well take some aleve to try to get ahead of the game but sometimes it just all comes all at once with no warning. It seems like my headaches might be the first sign of a flare for me, or at least today it is.
Posted Today 2:16 PM (GMT 0)
Having to limit myself is definitely one of the hardest parts of this, having to completely give up things I like to do is the absolute hardest. It is frustrating to always have to be thinking "I can do this, but not that" type of thing.

Loring, we sympathize and completely understand your overdoing it for going up a few stairs. It is frustrating. Hope you feel better soon......
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