What's Your THEORY?.....Please respond :)

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Jun 27, 2006.

  1. Hope4Sofia

    Hope4Sofia New Member

    Hi everyone,

    I don't know if we have this tread already or not. I thought it might help some of us if we could collaborate our theories on what causes our illness.

    Here's my preliminary idea:

    I've had Hypoglycemia since childhood so I decided to start with that as my first symptom.

    I don't believe Hypo starts by itself so I'm guessing it has some failure of the endocrine system behind it but not sure what it is yet.

    Hypoglycemia can cause seizures when it's bad. I believe the seizures can be stealth - in the form of confusion, blurred vision, shakiness, etc as opposed to a full blown loss of control.

    My theory is that if left unchecked over many years those seizures can cause damage to the central nervous system resulting in the phenomenons of FMS and CFS.

    I also believe the prolonged roller coaster of Hypoglycemia can cause damage to the organs as well as the immune system.

    It would make sense that so many of us are dramatically affected by our diet.

    I know it's a simplistic explanation - but worth considering maybe.

    I'd love to hear all of you thoughts and theories. Maybe we can help each other find some answers.
  2. serenety

    serenety New Member

    Hiya i have hypoglicemia as well as Fibro, it took me years for Dr`s to listen to me all i got was " you can`t have hypoglycemia without diabetes" BULL ...., then finally a Dr believed me & sent me into hospital to do a 72hr fasting test & hey presto they beleived me.
    Fortunatly i do know what caused it to happen, i was 8 mths pregnant with my eldest. I do know how to prevent it..sometimes.
    But i still don`t know why the hell i still get it.

    Serenety.
  3. Hope4Sofia

    Hope4Sofia New Member

    I think that's a strong possiblity.

    I also inherited my condition. Everyone on my father's side has symptoms if not a diagnosis.

    I started questioning my own condition when my brother started having my symptoms.

    I also became much worse during my last pregancy 6 years ago. I think pregnancy can push things along.

    I was only diagnosed 4 months ago.

    Keep them coming! I want to hear more!
  4. Empower

    Empower New Member

    See my recent post on Allergies, Kinesilogist and Hypo
  5. Hope4Sofia

    Hope4Sofia New Member

  6. Cromwell

    Cromwell New Member

    Gosh I don't have any particular theory, but I am enjoying reading everyone elses. I tend to err on the side of endocrine disorder triggered by........?

    As I sit here sort of losing my balance with that awful weird head thing, I do see a lot of us may have something like hypoglycemia too.

    Love Anne Cromwell
  7. romanshopper

    romanshopper New Member

    I have this weird theory.

    OK, one night my foot was hurting terribly and the pain medication was NOT working.

    I thought to myself - SO THIS is what PAIN really feels like.

    And I learned it. I mean, it was crazy - I felt that pain down into the core of my being and it was like something changed....right then.

    Now when anything hurts, my BRAIN remembers how pain is supposed to feel and does that. It has this all or nothing response. Nothing ever hurts JUST A BIT anymore. If something hurts, WHAM - there it is!

    It is some dopamine brain function thing.

    Its not like it pyschological though - its like there's been some change in my CNS.

    When I had my child, I had a c-section and I took extra strength tylenol and handled it. I had a HIGH tolerance for pain.

    I think that doctors need to treat pain better so this stuff doesn't form, if that makes sense. My pain was terrible and basically untreated for 2 years until finally a doctor did an MRI and nerve studies on me.

    Docs kept saying, Oh, but you could not possibly hurt in your little toe. The nerve doesn't go that way.

    WELL, KNOW IT ALLS, it was ALL 3 of my nerves in my foot that were messed up - and one of them DOES go to my little toe.

    Only after all that did they give me pain meds and a car hang tag for parking.
    [This Message was Edited on 06/27/2006]
    [This Message was Edited on 06/27/2006]
    [This Message was Edited on 06/27/2006]
  8. claudiaw

    claudiaw New Member

    an Endocronologist and Neurologist's NOT Rhuemy's.

    I totally believe it has to do with our endo system, hence thyroid, blood sugar,immune problems.

    I also think a Neurologist should know way more about CFS/FM with nerve impulse disturbance involement.

    I am still on a quest to find an Endo who is researching CFS/FM, I truly think our treatment or cure lies there.:)

    just my opinion.

    Claudia
  9. romanshopper

    romanshopper New Member

    I know mine seems very nerve related. Otherwise why would the neurontin be of such a huge help?

    I KNOW what nerve pain feels like. And that is the way my fibro feels, but it is in places where the nerves are technically 'ok'
  10. Astarte

    Astarte New Member

    I fell in a hole last September, and it ruptured my C6 disc, and after it was repleced in Jan. 2006, is when my symptoms started. The pain after and before the surgery was just assumed to be from my injuries.
    However, I was diagnosed with hypoglyecimia about 20 years ago too. No diabetes and thankful to have had a smart doctor to realize that hypoglycemia and diabetes are seperate illnesses.
    Now, does everyone have problems with weight gain? No matter how hard you diet? Since January I cannot lose weight easily. Not that any weight is "easy" to lose, but usually I can succeed easily when following correct eating habits.
    It's impossible to exercise with this too. So on my good days I have found exercising does help in weight gain. Which draws another problem, it's not consistant at all so starting from square one is a constant.

    Star
  11. jake123

    jake123 New Member

    Exposed to mercury at 10 yrs. of age (rubbed it on all the dimes in my bank)

    Tonsillitis 4 or 5 times a year when I was in elementary school - lots of shots of pencillin except one time when the doctor gave me a large bottle of extremely foul smelling and tasting medicine.

    Growing pains in my legs and pain in my back - didn't know I had scoliosis.

    Hypoglycemia to be sure starting in high school along with more strep throat. Really bad, bad cramps every month.

    In college, a rank case of strep throat that lasted about two weeks and then the flu, headache, throwing up and diarrhea.

    Headaches began to be noticeable.

    First car accident.

    Married at 23. Baby at 27. Trouble with my back and neck, see a therapist.

    Another baby at 30. (A big baby) More trouble with my back and neck.

    Second car accident, rear ended.

    Nearly killed in rape. beating attack in my home by a felon who was out on parole. I told him my husband would be home in minutes (but I expected my girlfriend). She showed up right on time and rang the doorbell several times and the felon got scared and left. I grabbed my girlfried and we called the police. The police came and that was another trauma.

    I went back to college. A car hit me - t-boned me by running a stop sign, the woman was from Mexico and had no drivers license and no insurance. The next day the people at her address said that she went back to Mexico.

    That's about it. I've been kicked around a little but I'm a survivor. I don't know which factor has given me the aches and pains that I endure but it hurts.
    [This Message was Edited on 06/29/2006]
  12. Hope4Sofia

    Hope4Sofia New Member

    Thank you all for your thoughts. I really enjoy reading everyone's theories on what this is.

    Any more ideas?

    Sofi
  13. victoria

    victoria New Member


    Whether bacteria and/or viral and/or fungal that can evade the immune system in various devious ways. And probably more than one because they are opportunistic as well.

    It's already known that pathogens like mycoplasma, lyme, babeosis, etc., can hide out by changing their forms, and it is known that we have virii like the different herpes types that don't go away...



  14. sydneysider

    sydneysider Member

    After finally (at the age of 45) finding out that I have compressed disks in my neck, I now believe that I had an injury while very young. I think that this was worsened in my late teens. I think this injury is somehow the cause.

    Diet and toxins do not appear to play a part in my illness.

    I don't believe that CFS and FM are the same disease.



  15. bpmwriter

    bpmwriter New Member


    my belief currently rests in the cheney camp of mitochodrial dysfunction. it's like there's a finite amount of energy available at a cellular level and if you step over the line, you flare. my flares are very consistent in the way they play out. i bounce an energy check by dancing or some other physical activity or stress and it's like the engine of my body throws a piston and stalls. i stop eliminating correctly (constipation), histamine flares due to under-methylation by the liver, fatigue, as the sewer (gut) backs up i get foggy and maybe a headache. if i rest for several days and do nothing, i gradually emerge. the cherry on top is a mouth sore that appears and fades as i start to feel better.

    the mouth sore is the one thing that seems viral-related to me. it's hard to understand how a virus could cause the other symptoms, but i suppose it's possible there's an unknown virus out there with a specific mechanism of action, perhaps one that's active in our nervous and endocrine systems? it's all so very strange to me.
  16. LittleBluestem

    LittleBluestem New Member

    the viral infection or the disregulated immune system? Some people think we get the infection because we already have a compromised immune system, which we don’t ‘notice’ until we are exposed to some pathogen. If that is so, what caused the immune system problem?

    Long before I had any idea that I had CFS, I knew that my poor health traced to a severe “flu” from which I never really recovered. Due to the lack of both physical and mental energy, I had decided I must have some kind of mitochondrial dysfunction. Thinking back, there were also symptoms of autonomic nervous system problems fairly early.

    I have had hypoglycemia all/most of my life. I had quite a few bouts of tonsillitis over a couple of years in grade school. I don’t know it either of these thing have anything to do with my current state of health.

    What is at the root of it? I don’t know. I am focusing on mitochondria, nervous system, and endocrine system right now. I do think that as more people are diagnosed early in their illness, it will become more clear what the base problem(s) is/are.
  17. LittleBluestem

    LittleBluestem New Member

    No, I haven’t read From Fatigued to Fantastic. With so little time & energy for reading, I am adding books to my reading list much faster than I am taking them off. Thanks for letting me know that this would be a good one to get to soon.

    I am going to do an adrenal stress test, so was reading up on cortisol. I was amazed at how many of the things that trouble us are influenced by cortisol, including gene transcription. But I think I have read that the adrenal gland is influenced by the hypothalamus. Are there any test for the hypothalamus?
  18. rosemarie

    rosemarie Member

    As a child I had the worse leg aches and was told my the "FAMILY DCOTOR that I ccoud get rhumatic Fever because of the leg aches, I never got it but was always told that I was border line to having rhemutic Fever. With the leg aches as a child I was given asprin and vitaman C for it and it really did not help me much.

    I went through my teens with female problems , cramps , cysts, strange bleeding, heavy periods. YOu name in and I had it. I also developed hard dry hacking non productive dcough. I sound like some one who has smoked for years and now has a smokers cough along with a bot of croup too.

    I had surgeries for my female problems and with my 1st daugther I hemoraged so badly that my hemocrit was 17 Normal is 40 and they had pulled my IV's So I didn't get any blood that time.

    I had to have my tonsils out and got antibitoic induced colitis and once more my crit was so low around 19 that I was given 4 units of blood this was when I was 20 and I am 50 now. That was a long time ago and long before the testing we do for blood now.

    I had blood once again when I had to have some more female surgery as I had retrograde menstaration and bleed in to my abdomen and I was given 1 unit one day and 2 the next and still my hemocrit was in the low 20's.

    I gave birth to 3 girls and each pregnancy was different and I would get so nausous that I didn't want to eat the first four months but after that I gained weight like no other.

    I ahve been through several very tramatic sisutations durning my life, I lost my father at 12, ( days before I turned 13, the next year it was my grandma that died a year and 4 motnhs after my Dad did. I married and in time lost my husands grandparents and my FIL and three years ago my MIL and last year mY BIL.

    I have watched my mother become some one who almost died from blood clots in her lungs and I was the one who had control over her medical situation. She is better now but she has changed so much. I have been with her every time she has been in the hosptial in the past 4 years the last time being a month ago when she had celluitis.

    I have a sister who claims that she was abandoned after my dad died because my mom went to work. But I got my brother and sister up every morning and made sure that they had breakfast and went to school. I thought I had lost my mind as every time I had my Xanax filled half of the bottle was gone the next day and it was my sister who was taking them from me.She went on to take my pain meds also till I Locked them up and she could no longer get in to them

    I have struggled with much in my life and I don't know if the times I had mono and other illness such as mumps , chicken pox. And strept throat. Tonsilitis also.

    Did all these start me on the way to fibro and MPS Yes I think it did but I don't really know for sure.
    But I had several oppertunites that could have put me in a situation that would lower my immune system.

    So I wonder if all the things I went through all the emotional things as well as the phycial things made me ill now. I can't say but I don't think that it stopped it.

    Rosemarie
  19. LittleBluestem

    LittleBluestem New Member

    Thanks for the additional information. I am cautiously taking salt. I took Licorice before, but quite because I was adding so much other stuff and wasn’t sure it was doing me any good. It sound like I may be starting it again.

    I am SLOWLY working toward an earlier bedtime. I saw on their web site that the company that is doing my adrenal stress test also does a melatonin test. I am going to ask my physician if she thinks that would be a good idea for me.

    You have probably heard that no good deed goes unpunished ... so, can you tell me what really normal, healthy cortisol level would be?
  20. shootingstar

    shootingstar New Member

    from a variety of causes such as injury, trauma, infection. I don't know. A lot of people here seem to have had spinal or neck injuries. A lot seem to have a history of infection from a variety of viruses or mycoplasm etc. Some know exactly when they seem to have gotten ill, others don't.

    I'm wondering if all these diverse things (injury, infection etc.) might put varying degrees of pressure on some part of the brain or brainstem so that, although the initial cause might be different, the end result is a similar syndrome.


    [This Message was Edited on 07/15/2006]