My theory of FM

Discussion in 'Fibromyalgia Main Forum' started by liberty143, Jun 12, 2008.

  1. liberty143

    liberty143 New Member

    I sold my restaurant last Sept. and have been working on feeling/getting better ever since. I have had Fibro since 1985. I went back to work part time in a very easy/non physical nursing job in Jan.
    Many days I am at 70% of my old self (I was at about 30% before selling.)
    The stress in my life has dropped dramatically. Constant worry and emotional drama hurts!
    I am on Guaifenesin therapy. My MD says it helps about 80% of folks who take it. Many of my 'painful spots/nodules' have decreased in size and ache much less. The aching seems proportional to the size of the lump. Worse spots-buttocks, tops of thighs, upper & outer calves, neck, shoulders, forearm and just above the inside of these sound familiar? They are definitely getting smaller.
    I walk on the farm and treadmill (12 minutes at 3 mph and 1% incline right now). Sometimes I just can't, but when I can, I take it slow and it does seem to help.
    I have massage from a great MT every other week. He breaks me a deal because I am a regular.
    I do a 30 min. stretching routine each day. Some of it just involves bending in a way that stretches those muscles that those nodules are in and some stretches at my joints. Over the last 6 months, I can now almost "adjust" myself like a chiropractor would with slow, specific stretches.

    BUT, I was still VERY FRUSTRATED about having unexpected(and undeserved) times of severe aching, headache, debilitating fatigue and mental fog.
    I began to watch. It was happening mostly after eating certain foods. I then dusted off my 2004 report from Dr. Dantini in Daytona Beach about my food allergies. I had sent him a whole blood sample and they did some different type of testing on it looking for immune responses from the white blood cells. I then stopped eating them...wheat, corn, sugar, cows milk, beef, turkey and apples. AND, that's when I began to have days of better than 70% of the old me.
    SO HERE IS MY FM THEORY (much of this is also based on ideas I have read on this site.
    Maybe the predisposition to have certain events (injuries, viruses, PSTD) lead to Fibromyalgia is genetic, that is to say, some folks could have the same series of events and some would develop FM and some would not. And, perhaps, that predisposition runs in families but here is what I think happens...

    An event or series of events occur in a person's life that activates the adrenal/immune responses of the body. It could be an emotional stressor (a period of relentless intense stress) or the introduction of Lyme or Epstein Barr into the body or a hormonal imbalance or a physical assault on the body like a car accident.
    All of these would put the body into high alert. The immune system, the pain regulatory systems, the adrenal systems would all be fired up to heal the body. Now everything is on overdrive. But, these problems don't occur singularly. Pain from a car accident or life (money/relationships) stressors make it hard to sleep and get the benefits of deep sleep and creates anxiety and panic attacks. Less sleep leads to an increased demand on the immune system to try and keep the stressed body well or to actually launch an attack on any virus or other microorganisms (protozoa, yeast) harming the body. Loss of sleep, chronic pain, anxiety and loss of the ability to perform daily activities causes depression. Depression and pain leads to decreased energy, less physical activity, less flexibility and then to disability. We ache so we guard our body. We do less and lose muscle mass and become weaker. Chronic inability to reduce stress increases as your fear of "what is wrong with me?" increases and the usual totally inadequate if not critical response from doctors makes you feel crazy or hopeless.

    As the immune system revs up we begin to experience symptoms that are associated with 'inflammatory' responses. Food and chemical items that use to not bother us at all now give us diarrhea, nasal congestion, painful intercourse, bladder issues, brain fogginess and pain. An inflammatory war is occuring in our own tissues. It takes a person a while to grasp that because of the heightened inflammatory/immune response going on inside us, foods/chemicals that used to be tolerated just fine are now perpetuating the symptoms.
    So, with an already weakened but over alert system we continue to eat foods that perpetuate the cycle. These alleric resposes are battles fought in 2 places in the body...mucous membranes (nasal congestion, bowel problems, painful intercourse and bladder problems...all organs with major mucous membrane surfaces. The other place is in the cells of the large muscles them selves. It is no wonder that we develop 'tender points' and 'nodules' that are extremely painful with pressure. These are the 'battlefields' of the constant histamine responses to the constant intake of allergens. The body allows fluid to collect in these areas in an attempt to soothe and protect the 'injured" area. This fluid causes swelling and thus 'fibronodules' are now formed. These cells lose their ability to create energy on the cellular level and our muscle strength decreases. We become fatigued from ATP starvation.
    As allergens are eaten and stress continues, these areas in the flesh ache more and more. And, if you are like me, you keep eating food to soothe yourself. Unfortunately, my comfort foods are my allergy foods.
    Some now talk about abnormalities that are seen in the pain substance 'P' in FM patients. I am no biochemist, but I believe that the amount of pain I have (not perceive) but have must really skew my body's response to it. Used up quantities of pain related substances or fried responder sites would not surprise me at all.
    So now I have added the dietary restrictions to my arsonnel of FM 'Ghostbuster' gear.
    It is really hard. I struggle to get myself to bed on time (I am a "doer" as I imagine most of you are), relax, not sweat the small stuff, rest without guilt, stretch, give up on plans sometimes, ask for help, take quiet time, EAT RIGHT (why live?), be selective on how much of myself I ive away to others, and have faith.
    Any comments on the theory?
    thanks, liberty

    [This Message was Edited on 06/14/2008]
  2. Suze

    Suze New Member

    Hi Liberty -

    Just a couple of random thoughts on food....... One, I woke up feeling somewhat better this morning, but after one cup of tea with soymilk I feel the energy draining out of me. I really, really hope it's not the soymilk. I'm running out of things to eat!

    A few years ago I had nine teeth extracted. No chewing for a while. I forget what I ate/drank, but it wasn't much. Dramatic decrease in FM pain during that week.

  3. liberty143

    liberty143 New Member

  4. ulala

    ulala New Member

    also believe that we can put this disease into remission by restricting our diets and not eating foods that we are allergic to and sensitive to. It's not easy and not popular because most are looking for a "magic bullet." Of course restricting our diets isn't a cure, but you can get your life back.

    Please read MATN's posts. If you do a search for her user name you'll find her posts. After being sick for 20 years she has put herself into remission for many years. She said she has gone from being bedridden to playing tennis for four hours a day. She rarely posts here anymore as she is busy living life.

    I think if someone has some type of bacteria, and/or viruses they need to be treated. I'm having some luck with Xifaxan for Small Iintestinal Bacteria Overgrowth (SIBO).

    All the best and thanks for sharing your theory!
    [This Message was Edited on 06/13/2008]
  5. Heald

    Heald New Member

    I like your theory. Can you tell me if any of you have had problems with soy? I too have IBS, and must eat fiber so that I do not become constipated. Since regular milk was giving me the blues, I switched to Silk soy milk. I'm started to wonder if the soy milk is causing problems.

  6. ulala

    ulala New Member

    I don't drink it because it makes me feel poorly. Also there is a lot of bad things written about soy, especially if it's not organic.
  7. joeb7th

    joeb7th New Member

    My whatever-this-is started with a flu and fainting and horrible crushing of my face and then getting Levaquin for 5 days that put me into nightmarish symptoms that I have described many times. That was 2 and 1/2 years ago. I was 54 at the time.

    In 5 major areas of my body I was devastated. GI tract was so inflamed I was going into shock trying to eat. Lost 40 pounds in 2 and 1/2 months from eating nothing but potatoes, soda crackers and gator aid. My tendons were in so much pain , my rotator cuff tore in the first two weeks. To this day I hurt all over and am so weak I can't do a push up. If I work any part of my body the pain for days is unbelievable.
    My heart rate dropped down into the high thirties. Brady Cardia they called it. At one point 3 months into this I had a 3 and 1/2 second pause in my heart beat after fainting in an untended hospital wheel chair.

    My nervous system seemed so overly sensitive and charged and haywire really. To this day I feel cold and heat so intensly and it feels as if an electrical wire is plugged in and zapping me. I feel everything 2 to 3X more intensly. I tremor too.

    IBS almost makes me pass out. I eat certain foods and the cramping almost makes me pass out. The other day I was stuck with another person who likes fast food and I ate a Junior Whopper burger and stopped and drank a Kerns mango drink that was 50+ grams of carbohydrate. It tasted like pure sugar juice. In two hours I was in severe crisis with cramps and diarrhea. It was like I was vomiting...only out the wrong end. When I have stomach distress it seems to trigger all my other symptoms worse too.

    I have reactions to meds I never had before. Some pain meds make my head feel like it's going to blow off like morphine and delauded. Like my nerve system is on such highly sensitive alert it overreacts.

    And I get so sick. Sick in my stomach also.

    This has happened with certain ADs as well. Vitamins and supplements can do this to me as well. Tried taking Viatmin D recently as well as new gel capsand got so sick and pained in GI tract. Get muscl cramps in feet. Have sore spots right under arm pits and in shoulders, arms, hips, thighs, ankles and well...just all over.

    My emotional state has become devastated. Anxieties and tremors and depression so bad hard to describe. I have tinnitus in left ear . Never had this before.

    And within less than one year of first getting sick I started complaining of feeling different in my lungs. I would breath and feel really cold air and it hurt to breath. First primary care doctor became so frustrated and upset with me when I reported this latest lung symptom he said " most of your symptoms are psychological in nature...and I am not going to keep referring you out to check on these anymore."

    I left him immediately and went to a pulmonary doc on my own who immediately diganosed bronchial asthma. I would have not found this out if I had stayed with the doctor who refused to refer me out to check on this. This condition has worsened to where I feel it every day and it feels worse.

    I was always did I get bronchial asthma at the age of 54 without ever feeling anything like this in my life?

    Nobody seems to be able to answer that question. But in my mind it all started with as you say extreme trauma and in my case that 6 day dose of the super powerful antbiotic Levaquin ( which has been called the big gun.)

    But this asthma thing is driving me crazy. Must go back now and see how bad it's gotten even though I can't afford anymore $40 co-pays. I only get $800 a month social security and rent alone is $1,500. Deeper in debt every month. Debts up to $80,000 now.

    But I agree with your theory regarding inflammation out of control. An inflamnattion war. And certain foods make it worse. I have lived all my life on wheat and I know this hurts now as well as sugar and dairy products. But changing your diet is so hard and expensive.

    We are hurting so bad financially that it is actually homeless type living...and we can't afford two seperate shopping styles and bills. But at least agreeing with you. Something has sent our infalmmatory responses into crazy mode. My B-12 and testosternone was also so low one doc said she had never seen a B-12 reading that low. Mine was 120 I believe.
  8. kel78

    kel78 Member

    I agree. I've been saying for years that my immune system seems to be hyperactive, but my doctor just laughed in my face when I told him that. Didn't offer to investigate that possibility or anything; just dropped it completely.

    I suffered severe emotional trauma when I was 11 years old and my 4-year old brother died accidentally, so I suppose that could've been my trigger.

    While I do have to avoid certain substances that cause intolerable reactions (cow's milk dairy, broccoli, peas, peanuts, and just about every drug in existence and many herbs as well), I don't think this is the answer. We have to get to the bottom of why our immune systems are haywire and, if possible, get them back to normal.

    Are there any doctors/researchers out there who are hard at work on this???

  9. liberty143

    liberty143 New Member

    Thanks for your response!

    Soy could very well be an allergy that you have. I am not 'across the board' inditing my specific allergy foods. I think we each have our own and need to figure them out. I would never had expected to be allergic to apples or beef but I realized I always 'wheeze' after applesauce and can't even digest a hamburger.
    I use a lot of soy right is something I can handle but Dr. Dantini warned me to rotate my foods so I don't create more food sensitivities...that's hard!
    The type of testing he does was about $500.??? (but is fairly quick and easy) but there are ways of figuring out what you are allergic to. I have read articles about keeping a chart and eat. Record how you feel after the meal. Try to keep those meals "uncomplicated" ie. one vegetable, one type of meat, no complicated sauces that contain all different types of ingredients...
    of just eat only one of the most common allergy foods for a meal and se how you feel. Then, you figure out the suspicious foods and go off of all of them for 6 weeks. Do this well. See how you feel. The diarrhea, asthma, aching, fog,fatigue, other symptoms may/should get better. If you eat something that you think is OK and feel like hell afterwards, eliminate it. This is really hard. It has taken me 4 years of many false starts to try this seriously but it had gotten to the point that I couldn't function anymore.
    I have read that after 6 weeks of an 'immaculate' eating time, if you are feeling better and think that food allergies are truly a component of your symptoms, you can add one "allergy"food back in and see if it causes the symptoms to return. The, YOU get to decide if and how much you can tolerate re-adding and at what cost. Once in a blue moon, I will have a bagel because I just crave it and know I won't feel great for the next 3 - 4 hours but it felt worth it.
    And, I have also ruled out lots of other stuff...Lyme, MS, diabetes, hypothyroidism. I am going to get worked up for sleep apnea to be sure this is not causing/adding to my fatigue and fog.
    I also can't overemphasize eliminating emotional stress and drama from my life. I have sold my cafe and finally went to a easier 25 hour a week job. I have to work at keeping negative/drama folks out of my life. I am trying to do better at taking myself and claiming time for rest.
    And, the Guaifenesin and massage have slowly decreased this aching 'lumps' in my big muscles and neck and ribs. I increased the Guaifenesin the other day (per the protocol) and ache more. But, I know that this is because it is working to help break them down and make them get smaller.
    If I ate a candy bar right now, each spot would throb with aches...I not only can feel them as firm balls between my ribs and in my neck and large firm areas in my arm and leg muscles but they make them selves known after sugar.
    There are many great articles on the web about elimination diets regarding food allergies. It is really hard but worth it.
    Good Luck!!!!
  10. ulala

    ulala New Member

    What kind of allergy testing does Dr. Dantini do? Is it the RAST blood test? I'm allergic and/or sensitive to so many foods it's hard to know what to eat! Thanks!
  11. Nanie46

    Nanie46 Moderator


    I too had the delayed food allergy testing through Dr Dantini and I also had viral testing. Last year, after 10 days on the antiviral med (Famvir) and the elimination diet, I started improving dramatically.

    I improved 50-70% in about 3 months.

    I have been having a flare up of neck and shoulder pain causing headaches, ever since sitting in a tense position doing tax forms for my kids in Feb, so I just went back on antiviral medication, as Dr Dantini says is necessary when the pain increases.

    Out of my 22 sensitive foods, I found out through the elimination diet that I must avoid sugar and corn syrup since they cause pain, stiffness and soreness. I found that I can eat the other 20 foods as long as I take digestive enzymes.

    I really think his theory of viruses and food sensitivities is correct.

  12. bunnyfluff

    bunnyfluff Member

    How have you "ruled out" Lyme with your positive test results???

    I am very concerned that you have not seen someone that knows how to correctly read the test results you had.

    My food allergies were a DIRECT result of unDx'd Lyme. Now that I am in treatment, I have no problems w/ wheat at all.

  13. EricaCFIDS

    EricaCFIDS New Member

    I bumped up your old post to see what happened. I hope you gave us an update! Thanks!
  14. cookie1960

    cookie1960 New Member


    We all seem to have our theories for FM.'s mine:

    I believe it to be a combination of factors. I think some of us have a pre-disposition to FM (perhaps genetic)? and if certain events happen in just the right way - this triggers the FM. But each of us are individuals - so what caused my FM, may have no bearing on what caused your FM.

    Perhaps it's a head injury or some type of trauma combined with a virus or a reaction to what we eat or what drugs we take. I think of FM as a monster ready and waiting to be unleashed. Once that monster escapes - there's really no way to put it back - we just have to treat our symptoms.

    Some health professionals believe that this type of combination of events could also be the cause for autism in children. Maybe a vaccine combined with an illness and some kind of trauma. Like a door with many locks, if you turn all the keys at the right time, the door will eventually open.

    I'm no professional - this is just my humble opinion.

    Good post!


    [This Message was Edited on 06/14/2008]
  15. liberty143

    liberty143 New Member

    I agree Cookie. I think some of us have a predisposition to be affected by any one of different 'events' that trigger FM. This could be familial...that why so many cases seem to run in the same family. 25 years ago, 6 women who lived in the same 6 block neighborhood developed MS within 6 months. The local university investigated but found nothing. Then, my partner and I were caring for my friend and within 2 years she developed the same type of MS. I didn't. Too coincidental.
    It seems like everyone's immune systems are flailing. Friends, co-workers and patients of mine have odd rashes, more shingles, more sinusitis, more diarrhea, more fatigue.
    I think many different things set off FM...anything that relentlessly pummels the immune/adrenal system.
    Thanks for those who asked about the Lyme. The ID doc put me on 2 weeks of Doxy. I had a lumbar puncture (neg. PCR for Lyme/one point higher than normal protein), a brain MRI which was normal and a slew of labs (all neg). My local lab test for Lyme was, of course, negative. He felt it wasn't Lyme.
    So, now I am at a crossroads. There are no LLMDs close to here...certainly no one who would order what munch and some of you are treated with. I am feeling better on the diet restrictions for now/I am feeling MUCH BETTER. I guess I am going to see how far what I am doing will improve me. I just don't know if I have Lyme or not. My Igenex labs were not overwhelmingly positive... My cardiac status is stable (no change in ejection fraction for 4 years.
    Finally, soy seems to be fine with me. But, I can give myself a mini asthma attack with an apple cobbler a la mode.
  16. liberty143

    liberty143 New Member

    I would LOVE to be able to eat a little of a few of the allergy foods (interesting that they are the ones I most 'abused' my whole life).
    What digestive enzymes do you take and when?
  17. liberty143

    liberty143 New Member

    Yes, that is what I had. I mailed a tube of whole blood drawn at a local lab to Dr. Dantini. You also have to talk with him on the phone (and are charged for this time) BUT, what he had to tell me really helped.
    I, too, have had major financial problems these last few years but have been blessed/lucky to have family help.
    One of the reasons I don't go out of state to a LLMD is due to $.
    But, Joe, if you have a kitchen? and time, it is possible to eliminate the worst offender foods. Best to shop around the outside of the grocery store where the less processed foods are (plain meats, veggies, beans, fruits etc). My worse enemy is my sugar/bread addiction. I battle t=it constantly.
    Good luck to you and your family!
  18. Heald

    Heald New Member

    Thanks for your reply.

    I take percocet and the side affect is constipation for me. So, I eat cherrios mixed with another fiber cereal using silk soy milk. I've just been wondering if soy has a negative affect on me. I notice that sometimes I get real smeally gas. Have you also excluded wheat from your diet?

    I have to have a lot of fiber or else I will not have a movement. Then, I'll have another problem since I have IBS. I'm really starting to see the effects of sugar. I notice if I eat cake and ice cream or cobbler, I feel like someone is sitting on me afterwards.

    I'm really glad I found you guys! I hate fibro!!!!!!!!

  19. liberty143

    liberty143 New Member

    When I finally started to pay attention to how I felt after I ate (and was willing to KNOW that information) I was amazed how 15 -30 minutes after something with cane sugar of any form made my fibro nodules just ACHE..
    I love sweets of all kins do this has been tough. I can have limited honey and real maple sugar. I use stevia as my as my Faux Sugar since I found out how awful Aspartame is for FM patients (and everybody).
  20. andreake

    andreake New Member

    I had the allergy blood test as well....seemed I was more allergic to soy than I was to milk.

    But in the end, it ended up the only two things I wasn't reactive to was plain yogurt and chocolate.