What us YOUR theory the cause of fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Jul 7, 2008.

  1. Just curious, so many drs. give us pills that don't work and cause side effects and we still suffer. What is YOUR theory on what causes this dd?
  2. joanng

    joanng New Member

    I think I always had it, even when I was little, my earliest recollection of discomfort was restless leg syndrome and my mom would say it was 'growing pains' but then I experienced severe IBS as a child, severe menstrual cramps as a teen, etc. however, it wasn't until after a series of traumatic events in my life that the heavy duty pain and fatigue kicked in. It has been all downhill after that. One thing after another. So I would say I was prone to it. I have three children and knowing what I now know, I'm watching them & would say 2 out of the 3 are prone to this too (unfortunately).
  3. AndrewB

    AndrewB New Member

    ..and all of this leaves us susceptible to a host a viruses/parasites and heavy metals (which complicate things even more) problems.
  4. texangal81

    texangal81 New Member

    I'm not sure where it comes from but I know that I was sick all of the time as a child, had allergieshad headaches for years, never tolerated exercise very well, and had a terrible time getting up in the morning. I feel I've had this DD nearly all my life but it was benign enough that I would simply write-off flares as the flu or a cold/upper respiratory infection. I also think my chonic back pain is part of it.

    I've said before that I believe it really became a problem when I changed jobs, bought a new house, and unofficially ended my unofficial engagement. I HATED the new job that allowed me to afford the house, my finances went into the toilet almost right away, and I mourned the demise of my relationship quite a bit. This is when I first noticed the terrible fatigue. As for the pain? I've hurt for years, I just assumed it was the cost of getting older!
  5. cookie1960

    cookie1960 New Member

    I believe that FM is caused by the right combination of events within your body/brain. I also believe it is different for each of us and that is what it's so difficult to find the root cause.

    I've suffered from migraines for 30 years - so obviously my neurological symptoms are there. I tested positive for the Epstein Barr virus (although I don't remember having mono). I'm thyroid is underactive and I have a B12 deficiency. So for me...all of these thrown together could cause FM.

    Some believe that autism in children is caused by a combination of factors. Vaccines, illness, genetics, etc.
    Everything happens at just the right time or in just the right order to cause the condition.

    At this point - after 5 years - I don't even care where it came from. Just help me get rid of it!

  6. AndrewB

    AndrewB New Member

    getting the protein, minerals and vitamins back in the body IS the cure..... But you have to know which ones to take.

    It's really simple when you think about it.
  7. Pansygirl

    Pansygirl New Member

    but I do think after some thinking about my life up to now that I have it alot longer than just 2 1/2 months. As a kid I too had trouble with exercise , and then in my 20's my headaches started and soon after that I started having migraines. I've had my share of sinus infections and I also see a trend of having alot of fatigue when I have been in stressful situations. I too also had restless leg. I also had stomach issues for years that were never officially treated but would come and go.
    So for some reason unknown yet to me as of April 2008 this dd showed up in full force and I'm more than ready to have it go away.
    A couple positives for my family is we are starting to eat more healthy and I'm learning to enjoy the simple things and learning to say no . Although I still get frustrated when I can't do everything I want to do.

    [This Message was Edited on 07/07/2008]
  8. margo60

    margo60 New Member

    It's interesting to read the replies and verify how complex this condition is.

    I was a pretty healthy child with good immune but never enough physical stamina .. as a young woman struggled with PMS and headaches (not migraine), very painful periods and had the hardest time of getting pregnant.
    But not other health problems.

    Then I had a very stressful 10yr period where I held 2-3 jobs at the same time and burning the candles at both ends.
    I always had a strong nervous system (or so I thought)but going from my regular job to an evening and weekend job, then come home and take care of family, and work some more late night took a huge toll on me ... never any rest and only 5-6 hrs of sleep.

    Sounds pretty nuts I know, but I had to do it for financial reasons.
    All this time I felt that the rubber band of my nervous system was stretched to the max and even my best friend said to watch it because it's not going to end well.

    During this time I came down with Mono, bad case of Type A flu, had a very bad reaction to Biaxin that put me in the ER ... but when I felt half way decent, just kept on working at the same pace ....

    As they say... the rest is history, my system started to re bell against all the attacks.

    Best wishes to all,
  9. justlooking

    justlooking New Member

    I'm convinced that FM and CFS do exist but that the symptoms are so similar to other illnesses that many of them get lumped together as one illness.

    I think everyone has an illness that must be identified and treated. I don't think that the illness is necessarily the same for every person.

    I think based on everything I have read by fellow sufferers, the medical industry, researchers, etc is what is obvious is, what works for one doesn't always work for another. To me that makes me theorize that there are multiple illnesses at play. The problem for each person is finding what the cause for them is.

    I believe we should all use FM and CFS as a starting point and work through every cause (which Victoria has started an excellent post to give every person a list of all illnesses to rule in and rule out). Some will find they have lupus, MS, RA, Lyme, celiacs, nutritional defiency, viruses, etc. Some will remain with the diagnosis of FM or CFS..Which I do believe exists!

    For me I think I have a combination of things. First I have always had health issues to some degree. I got sick frequently as a child with practically every cold and flu that went around. I also had Mononucleosis as a pre-teen and Meningitis as a teen. I have suffered from headaches (migraine and tension) since I was a young child. I believe I was succeptible due to my immune system being somewhat disfunctional, though it was never caught by Drs as I was growing up. I believe my current symptoms (pain, fatigue, cognitive problems,etc) are most likely due to either a genetic disease, long term effects from the damage done to my brain from the meningitis or a recurrent unidentified virus. ****The genetic disease I believe is one that causes some sort of immune deficiency which allows family members to be succeptible to different illnesses. I have several family members that have had some rare illnesses and (long term) symptoms but none that are exactly the same as my symptoms or illnesses.

    That is my theory for me.

  10. MamaDove

    MamaDove New Member

    My story reads like a friggin' horror movie, most of what happened in my life is in my bio, I don't dare rewrite it :)

    My theory is this; The human body receives a 'trauma' of some kind...a virus, a bacteria, a physical blow, a psychological blow, vaccines or other toxins ingested or even just exposure...You get the idea...

    For some of us, many of us, we have had them all...

    A body can only take so much...A brain can only take so much...The 'core' can only take so much and then it retaliates and shuts down...The gut resides in that core!

    Retaliation IS painful and deadly to a human being...It's the basis for the saying 'if you are planning revenge, dig two graves'

    Autoimmune is common among many of us and my lab tests prove it for me...While experts don't agree, I believe inflammation plays a major role in many of these illnesses and my lab tests prove that too...I have yet to meet anyone who understands why we get these dd's, what actually causes them and how to fix them, so I have gone on my own mission to fix my own problems...

    Autoimmune and Inflammation...

    Applied nutritional methods for the inflammation and immune system and LDN to enhance the immune system, not supress it like the experts suggest...I believe with all the vaccines, drugs, anesthesia, infections, abx and multiple traumas, my poor immune system was overloaded, toxic and needed help to get back on track, it had been 'suppressed' long enough...

    A chirocracktor recently joined here and mentioned that his colleagues are now classifying these dd's as some kind of 'sensitivity' illness (not even close to exact words, just read it too, short term memory issue :)) I don't like that word 'sensitive', it makes it seem as if we are whimps and I for one am not a whimp...I have been a ballplayer, gymnast (loved the rings)and done things that boys didn't have the ba**s to do, so that label doesn't fit me but if I look at it in a different way (everything is about perspective) the human body becomes sensitive due to the battering it takes, again can be physical OR psychological. He even mentions about sexual abuse, something we are likely to never get over/ through...I agree with that analogy...I think that is what seperates us from 'normals'. I know people who lose a loved one and life continues on as normal for them the next day...Not me...

    I have begun my fight back ALONE...I have left any and all connections to conventional medicine and have gone full throttle 'alternative' and am healing for once in my life (40 years) It literally is saving my life although my new docs say they have done nothing but do what I have asked of them...It works for me...You need to find your trigger (the cause) and find your own cure...I believe my case is 50/50, physical and psychological...Grief seems to be the worst trauma of all for me and something I cannot just 'get over'.

    That's my story and I'm sticking to it...

    Good thread, can't wait to read more replies...

  11. marti_zavala

    marti_zavala Member

    ME/CFIDS/FMS is a syndrome when the body has triggered into a dysfunctional mode - regardless of the trigger.

    The trigger could be viral or bacterial - Lyme and the related spirochete bacteria, EBV, HSV1, HSV2, HHV6a, CMV, Hep A, B or C, ciguatera isotope, bartonella, Rocky Mountain Spotted Fever, any of the mycoplasmas, strep, chalmydia pneu, mold, organophosphate poisoning, staph, pesticides, heavy metals, toxic minerals from groundwater, electromagnetic fields, surgery, traumatic childbearing, car accident.

    But there may be an associated set of genetic polymorphisms that would make us trigger than normals do not have so they don't trigger over. That is the current focus of most research (where before, they were trying to find one cause).

    If you catch it early, BEFORE you have triggered over, then you could take antivirals or antibiotics, etc and get PAST the infection. Then you are cured of that infection. It may take a long time. If this happens, then it never was ME/CFIDS/FMS, it was CMV or Lyme or whatever the infection was. This happens everyday to lots of people. THIS IS A GOOD THING - And a cause to celebrate.

    If you have triggered over and you are not well even though you have taken all the medication that is prescribed for the infection, then the condition is called ME/CFS/FMS with active co-infections (whether the co-infections were primary or secondary). Now the triggering infection or trauma is not as important because if you get rid of Lyme or CMV for example, you could still be sick. Then it is no longer just Lyme or just CMV, it is ME/CFS/FMS, an immune dysfunction with neurological and metabolic issues.

    Once you have triggered over, your immune system is not functioning, so you catch everything under the sun. Where it was first just viral or bacterial or recovery from surgery, now you could have myco, chalmydia pneu., etc. as secondary co-infections.

    It really doesn't matter whether they are primary or secondary, they are still huge issues as they are now chronic infections. As is the now dysfunctional immune system, thyroid, adrenal, detoxification system, Kreb's cycle,, methylation cycle, glutathione pathway, cell-mediated immunity, gut dysbiosis, mineral deficiencies, hypoglycemia, etc.

    This doesn't mean that you don't keep looking for all the possible co-infections. And it doesn't mean that if you don't have Lyme or CMV or whatever today, you may not have it next year depending on your exposures to large groups of people. We have to be very active advocates for our health.

    These variations in triggers has stumped researchers for years and we lost 10-15 years. Now that they are realizing it is an immune dysfunction, we are starting to make progress. I see answers on the horizon. There is hope.

    Just my two cents,
    RadioFM likes this.
  12. JaneSmith

    JaneSmith New Member

    I'm 56 - My first memory is being 7 years old with stomach aches, leg aches, couldn't fall asleep and it just got worse at puberty - I never felt good and still don't. I'm not as bad right now since I gave up gluten. I'm waiting to take a blood test to make sure I have or don't have a gluten intolerance. I'll let you know.
  13. wld285

    wld285 New Member

    Marti...Do you realize you mentioned Lyme 5 TIMES on this board? Shame on you.
  14. dredre10

    dredre10 New Member

    I so identify with what you're saying. I've done everything that has been recommended to me...including working out at the gym 4 days a week. Unfortunately, whenever stress builds (eventhough I think I'm handling things well) the bomb hits and I am down for the count.
  15. Jana1

    Jana1 New Member

    Just think about it.

  16. kriket

    kriket New Member

    I think severe depression and prolonged emotional unstableness can cause fibro. I also believe the severe emotional trauma resulting from divorce,death,sexual abuse,and physical trauma cause fibro. I believe that an overload of senses from all of these things combined finally start turning the body against itself, in result causing the fibro. to start.

  17. PVLady

    PVLady New Member

    I have a very high level of Epstein Barr Virus - the normal on the test is below 90 and my level is over 8,000.

    I have considered taking anti-virals but according to what I have read, it only helps maybe 50% of the people and has alot of side effects.

    What helps me most is helping my body fight the virus by getting enough rest, good nutrition, low stress, etc.

    That helps me to feel better.

  18. Asatrump

    Asatrump New Member

    At 64 I find my flares and other problems are brought on by my own emotional stress. Two weeks ago I started bladder spasms again, immediately following a big problem in my life. Urologist did all tests and said fms was causing the trouble and he could give me relief via meds but no solutions.

    I was an only child until age 9. My aunt tells me my mother was always a shrew with me, I was to be a perfect extension of her: not a child. She told me about the ballet recital at age 3 when she sat in the front row and yelled in front of the audience that I wasn't placing my leg correctly.

    My grand children were not even potty trained at 3. I was expected to perform. By grade 4 was taking musical instrument lessons on three different instruments and expected to practice all three daily. Also had me involved in scouting, church school and some lessons for swim, sailing and horseback. If I sat to read, mother thought it was a waste of my time and I was go go practice more. It was too much tension for a child. Talking or fidgeting in church age 3 on was good for an hour of screaming from both parents, told what a bad child. Yeah, I am sure along lifes way I could have used a shrink.

    Also had tonsils and infections.

    All the childhood tensions I believe caused severe stiff necks and a total of 5 grand mal. The family chiro said they were because of my cervical spine being crowded and narrow.

    Each decade of my life I had different sets of emotional "situations" that piled up.

    Only been since the late 1980's I had fms diagnosis, before that everything was blamed on tension headaches and emotions. The emotion part still triggers flares, pains and whatever muscle the fms monster chooses to kick into gear.
  19. Honora88

    Honora88 Member

    If you believe in Chinese medicine, try tong ren.

    They believe it is blockages on C1, C2, T1, T2, T3.

    There are three practitioners who are completely cured from cfid by unblocking these areas and as a result volunteer their services.

    Accupuncture is not as effective as tong ren but I have heard of people being cured from acupunture.

  20. marti_zavala

    marti_zavala Member

    "I have a very high level of Epstein Barr Virus - the normal on the test is below 90 and my level is over 8,000.

    I have considered taking anti-virals but according to what I have read, it only helps maybe 50% of the people and has alot of side effects. "

    There are other antivirals than just the heavy duty ones. Valcyte, Ampligen.

    I am on an old antiviral, acyclovir and I have had NO side effects, only good things. I started at a high dose too. It took about a week to feel better but I never felt horrible. Only good things. And my brain is back.

    Your viral titres are outrageously high. I hope that you will consider some of the older antivirals to help bring your levels down and give your body a better fighting chance.

    Also, it is generic so my script costs me $20 at Walmart. $4 per 200mg per day and I am at 1000mg per day)
    [This Message was Edited on 07/08/2008]