What is your own theory as to why/how you have fibro?

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sunkacola

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Vicky, I think that being vegan and not eating gluten would be a lot harder!

I eat as much meat and fish as I can afford, and balance that with veges. I don't even eat potatoes very often, and rarely eat pasta (gluten free pasta of course) and I eat rice a few times a month.

In your case, you already have cut out such huge areas of food that cutting gluten would be almost too much. (On the other hand if it made a difference, it would be worth doing.) I wouldn't expect you in your circumstances to go gluten-free unless you were tested and shown to have celiac or something of the kind.

I don't think that I have celiac, although I have not been medically tested for that, and many people who benefit from going gluten free don't. I am, however, "gluten-intolerant". I guess like anything else there are degrees.

Also, I am very fortunate that I don't have things as bad as you do with the fibro. For instance, cutting veges up is no big deal to me unless I am unusually tired that day.
I am so sorry, Vicky, that things are so hard for you.
 

VanGogh

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So Much for my " 40 Winks "! I just realized that I never followed up with this thread not because I don't have a theory but because I got side tracked with tests and worry about " masses " and " malignancies "

The piece I just wrote I cut and pasted it into a word doc mostly because I think I could have been treading on thin ice with the total " theory ". Let me try just a small part of it and see what others think.

FEAR ='s False Experiences Appearing REAL When fear gets the best of me I realize that I am very vulnerable. Being vulnerable opens the door to illness.

Maybe this is too far out but I see it happens to me.

The rest of the theory is rather radical so I'm keeping it for another time if the opportunity presents itself.
 

Mahmurphy

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Hi I just joined the group, so thankful already!

Ok... first, I would like to say, that I have had depression, anxiety, panic attacks since about 5 years old. My mother had schizophrenia and was also bi-polar, so early emotional, and physical trauma (abuse) led to PTSD, digestive problems, migraines (age 10), sleep disorders, addiction(s), anger issues, core issues,etc etc etc...were the starting points of my fibro. Now add in back pain, head trauma from a car accident, injury from giving birth (40 yrs ago), work related injuries seems to be the recipe for fibromyalgia. I have had many failed attempts at finding a partner and have been living alone for almost 25 years. I also don't make friends easily. So... I too believe it is an accumulation of life events that have led to the diagnosis of fibromyalgia. Sending out peace to all.
 

links56

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I think there is some evidence to support some link with Lyme diesease, also stress is a major factor. I've also noticed a correlation with a car accident or traumatic experience to where your neck was whip lashed or injured. It seems that the symptoms of a atlas Subluxation are very similar to many fibro symptoms. I have the chiropractor pull on my head\neck and it separates my upper vertabre and un-pinches nerves and blood vessels that are responsible for so much pain and suffering. My neck will pop and instantly I feel quite a bit better. I think after some of the car crashes I have been in, my atlas which is the vertabre under your skull has been misaligned and is pinching nerves and causing decreased blood flow to the brain. This in turn causes fibro fog and extremely painful pulled muscles, etc. The symptoms of Atlas subluxation are:

Signs and Symptoms of Atlas Subluxation Complex
​Here is a list of some of the most common signs and symptoms of Atlas Subluxation Complex. Please note that the average case we see in the office will have at least 3 of the following signs and symptoms.

1. Neck Pain, Stiffness, Muscle Ache
2. Headaches that frequently involve the base of the skull and radiate usually to one side of the head.
3. Migraine's that not only produce a throbbing pain but may cause visual disturbance, nausea, or vomiting.
4. Vertigo, Dizziness, Faintness, ringing in the ears (tinnitus) and some types of hearing loss.
5. Facial Pain or Palsy (Trigeminal Neuralgia, Bells Palsy)
6. Grating or crackling sounds at the base of the skull when turning your head.
7. Inability to fully turn or lean your head to one side or the other (loss of range of motion).
8. Shoulder pain that is commonly between the shoulder blades but can occur between the neck and shoulder area as well.
9. Jaw pain that is typically behind the jaw or close to the ear.
10. Postural Distortion:
a. Head Tilt
b. Shoulder Tilt
c. Pelvic Tilt
d. Short Leg
e. Please note that head, shoulder, rib cage, and pelvic rotation can also occur.
11. Chest or Rib ache, discomfort, or pain From Postural Distortion.
12. Nerve root irritation can occur at the resulting stress points along the spine.
13. Radiating arm pain, shoulder pain and leg pain (sciatica) can develop through nerve root tension and irritation.
14. Low back pain and spinal disc damage occur over time due to Postural Distortion.
15. Hip, knee, or ankle pain and dysfunction typically on the side of the short leg.
16. Brain congestion due to mechanical blockage of blood flow, particularly venous drainage and cerebrospinal fluid circulation. (Current research is pointing to neurodegenerative disorders developing over time due to long term brain congestion).
17. High Blood Pressure (neurologically based)
18. Vagus nerve disruption can present as heart, lung, stomach, digestive, and bowl disorders.
19. Dysautonomia due to imbalance between sympathetic (fight or flight system) and parasympathetic (rest and digest system) nervous system which most commonly results in over-activity of the fight or flight response leading to a chronic stress state.
20. Difficulty sleeping, insomnia and some cases grind their teeth at night (bruxism).

This is a excerpt from the upper cervical center website. Since this site refuses to let you post links to sites that might help people with Fibro I refrain from posting the link, but as you can see alot of these symptoms overlap the many of the fibro symptoms.
Once again this is just one of my theories. Basically no one knows what fibro is caused by but I feel this could be a major part of it for me anyway. Regardless of what causes it, it is a miserable syndrome that is responsible for so much pain and suffering and loss of family and friends. We need to find out what things we all have in common and then we will hopefully someday determine what is going on. Hang in there. Links56
 

Marvis

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Interesting, Links56. I'm not sure if it's a cause or an effect, but I certainly have all of the above. I have an awesome PT right now who spends a lot of time gently massagine my neck and shoulders and then pulling/maneuvring my neck. Now I know what he's doing. Whatever - it feels great and I'm finally able to move my head a little bit. So nice to get more than - do these exercises and I'll stick a TeNS machine on you while you're here.
 

diamond

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Quote from Sagey

I also have been an over sensitive person and overachieving.Never liked when somebody didn't put their whole effort into things.That was always my personality.I always cared for others and was compassionate since I can remember.People and animals.

This is me too!
 

links56

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When I went to Mayo clinic for Fibro they said that the majority of people with fibro are care givers. I too am over sensitive in the aspect that I care what people think of me, I have the utmost respect for my elders and go out of my way to help anyone I can. This often runs me down to where my own care is sacrificed for others. Now in a whole different "over sensitive" meaning, since I got fibro, I feel I have some form of SPD(sensory processing disorder) where I am extremely "over sensitive" to all my senses, Noise is probably the worst where I just get so overwhelmed when I'm around noise. Its like my brain cant process it and then my body tenses up and I find myself clenching my teeth, its gets painful. same thing with touch and smell and sight. The way our brain perceives what our senses are telling us gets crossed with our pain receptors or something.
 

Marvis

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Yup links56. sounds like me. I can't have the radio on and have people talking at the same time. Makes me crazy. In my youth, I'd always find myself hiding in the bathroom or going for walks at parties because the noise made me overwhelmed. It's a creepy, skin-crawling sensation to have mutliple sounds that I have to sort through to make sense of the information I'm receiving. And yes to always worrying about people. Exhausting.
 

Pegleg84

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Yeah, overstimulation in general, especially when I'm not feeling 100% (ok, when I'm not feeling 80%, cause doing better than that is rare) can make pain and discomfort even worse. Something too loud of bright, or someone trying to talk to me while I'm listening to something else, etc etc=anxiety and increased pain. I managed to get to a show last night, which was great and SUPER LOUD (as it should be) which was fine, except for when my partner tried talking to me at the same time. Too much info at once=overload=ahhh!
How that adds to the "why" theory, I'm not sure, but I know I've never been able to handle a lot coming at me at once, and will often go into panic mode rather than face it head on.
 

VanGogh

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Don't know if what I think about based on what I experience and or observe has anything at all to do with Fibro. That said my mind races when I experience things that I am not sure if others experience at all.
I've really been struggling of late with the changes in the health care system and I wonder why observations are so difficult to input into the system.

As an artist I often look at life as a series of metaphors. Try to explain that to just about anyone . Most people seem to have no idea what I'm talking about especially if I present a theory based on a TV show or popular movie or book. The looks say it all.

One of my favorite metaphors has to do with the popular series The Walking Dead and what is referred to in the show and in the group of followers as The Zombie Apocalypse. As far as I know few characters in the show think much about why it exists in a dormant like stage in everyone. Viewers also seem to care little about that mystery even in fan forums. If it is known where it comes from maybe something can be done. It can be argued that focusing on that aspect of the disease would be boring so why waste time creating story line.

Maybe real life is like the show in that many people are not interested in the findings of people who do their own research and try desperately to be heard. I think that if someone is onto something and posts it here but no one picks up on it or seems to be disinterested in the findings then the show is a microcosm of social norms.

And for me going to see traditional doctors is a similar experience: I sit down with my PCP doc, I have a note book or figures, statistics, times and time spans, information about medications, food, drugs, alcohol, etc. She allows me to speak, asks me to take my shirt off, listens to my heart and has me take a few deep breaths, then says: " Okay the. We'll see you in 6 months " I think to my self WHAT???? what about all of this data. She seem disinterested. So now I'm in the process of asking for a new PCP which in a way means going back to the starting line. What a waste of time!
 

links56

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I feel the same way and My mind never shuts down, I am constantly running every scenario and possibility through my head, I am very in tune to how I feel or how I think I should feel. I've been to so many doctors and brought the notepad filled with info and etc. but I too get the same response. See you in 6 months. after all there's no way you could know anything if you haven't been to medical school, right?:roll:
 

VanGogh

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I feel the same way and My mind never shuts down, I am constantly running every scenario and possibility through my head, I am very in tune to how I feel or how I think I should feel. I've been to so many doctors and brought the notepad filled with info and etc. but I too get the same response. See you in 6 months. after all there's no way you could know anything if you haven't been to medical school, right?:roll:
I think of my self as the new Dr NO!
 

Tipnatee N

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I hesitated to post my reply to this post ever since the started, cause I kept seeing two side conflicting one another as one being diagnosed as an adult and one as a child who haven't yet experienced what adults had.

Before fibromyalgia I was not very sensitive toward my self and more towards other like it was my second nature I didn't even need to think nor tried , I was proudly believed that I had high stress resistance brain. But after fibromyalgia It completely switched me around and now I'm the axactly opposite as I once was. I was overwhelmingly sensitive toward myself and having a hard time understanding others. I can't recall a simply common sense without having other explaining to me why, or I'll have to going through the loop trying to understand it my self which can cause my continuingly anxiety attack and worsen depression . Is this what it feels like being Benjamin Button? ( from the movie " The Curious Case Of Benjamin Button" )

I can't recall how a baby feels like when I was one, but I would imagine it would be very similar to fibromyalgia while the brain still too new and still learning all the new sensations and new senses . As we know now that it's scientific proven , we don't only have just 5 senses anymore but rather more than 20 senses. With several neurologists also already proven that in many of fibromyalgia brains had proven to be somehow stop producing dopamine when we normally need it.

So my theory is that fibromyalgia is like a constant hit of the reset button on all of our senses. Regardless of other setback or troubles we have been facing up to now. While other brain memories still remember who we are our body can't tell who we were and how the body used to distinguish between what is good, bad, cold, hot, hunger, sad, fear, balances, rest , uncertainty, etc. I can't say which started it , mentally or physically like a choice between which came first chicken or the egg. I would love to say both all at the same time but that would still leave too many big question like still how or what about other people who fit all the descriptions ( including hypersensitive or other possibly mental sensitive problems) yet live all their life never experiencing fibromyalgia or any chronic pains? I guess that's all the theory I have for now. I hope it's doesn't sound too sci-fi .
 

links56

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Before Fibro I still worried about others and cared for others and I too considered myself "well functioning in high stress situations". Now its like I'm one needle of stress away from breaking the camels back at all times.
 

diamond

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Same here links56...identical!
 
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