Fibromyalgia and the Chronic Confusion over Cause

“I’m not confused, I’m just well mixed”, Robert Frost 

How sad it is that this invisible dis-ease that affects primarily women (although many more men and children are reported to be experiencing FMS than before) has led to so much continued confusion about causation. The theories about the cause of fibromyalgia have preoccupied researchers for the past several decades, partcularly as the numbers of reported cases have risen dramatically.

I will admit to my own theoretical belief up front by stating that I write as though it is an accepted fact that it s a central nervous system disorder, caused by a hyper-aroused nervous system of a highly sensitive person and is NOT a disease (See the article by Sue Cartledge, May 26, 2008 , However, there are others who are as firm as I, who maintain another perspective. My theory is speculative and perhaps even un-testable which is even more problematic. However, the perceived causes are so diverse than one can be left in a state of perpetual confusion. Let me list a few, then briefly outline my own position. For the interested I have dedicated an entire chapter on  differing perspectives in my book, but for now a brief summary of just a few more popular ones will suffice, to add to a previous blog about this same issue. However, I could not begin to list here all the possible speculated  about causes of this challenging condition.

There are many who believe that fibromyalgia is caused by hypermobility  (HMS)of joints. This view is usually supported by a mode of history taking whereby the person is asked about her life long sports and mobility history or injuries, along with any sign of ‘double jointedness’ and other kinds of unusual joint movement. While this is only a brief overview of the hypermobility theory, it is more usually common among some physical therapists and a few orthopedic type professionals. However, unlike many other perspectives, this approach does not suggest medications as a treatment modality. The physical therapist I saw in Tucson was rather adamant that this was indeed the cause of FMS.

There are others who maintain that FMS is caused by bacteria overgrowth in the small intestines (SIBO). While I have tried to find the precise claim that the drug Xifaxin used primarily for Irritable Bowel Syndrome (IBS) actually can cure FMS, as some suggest, nonetheless I have not found that proof. Not all FMS sufferers have irritable bowel syndrome. The above mentioned drug has been used for ‘traveller’s diarrhea’ and IBS, but the linkage to FMS has not, to my knowledge, been proven, nor greatly accepted by the scientific community, even though there are those who do believe in the bacteria causation. Furthermore, someone does believe that taking this specific medication can cure FMS, as suggested to me recently.

In the 1990s it was somewhat popular to suggest that Biophysical Semeiotics could find the answer to the FMS cause. While I am not a math expert, I am married to a retired math professor and we have had several discussions about ‘chaos theory’. I must admit that it is somewhat beyond me to fully understand the ways in which a physician can utilize this approach to allow him/her to recognize clinically the cause of FMS. However, it is a concept proposed by a few as a means of employing chaos to show physiological processes and, it has been suggested that this would show the cause of FMS. This approach does not seem to have been very successful among many researchers.

Endocrinology/Bio-identical Hormone Replacement Therapy/ Auto Immune Disease categories seem to fit together. The thyroid gland produces a hormone, and a disorder of the thyroid gland (as an auto immune disease), shows that the body is attacking itself. The idea that FMS is an auto immune disease related to the thyroid gland has been around for quite some time. However, years of research has shown that FMS is not an auto immune disease like arthritis, multiple sclerosis or lupus. I have interviewed very many people with FMS and none have said they have a thyroid disorder (I have been the exception). I believe that since FMS is more common among middle-aged women after menopause that there has been a dubious relationship sought by many to link the thyroid with fibromyalgia.

Ah! Now there are the virus theorists. They are of the ilk that FMS/CFS are caused by viruses. Their primary view is that many developed FMS/CFS after a bout of flu or some other virus. But, many came to fibromyalgia after an accident, surgery, a traumatic life event or after prolonged stress just as frequently as those who had just been exposed to a virus. We are still waiting for this virus to be named.

Let me see now… how about the Alkalyzing and balancing theory that suggests we need to increase our oxygen intake so that we can better absorb minerals, or the Ayurvedic view of pathogens that need to be sucked out of the body, or the yeast (candidiasis) problem, or parasites, or hypothalamitis ? Need I go on? The list is never ending. We are still left confused and waiting for that accepted cause that all can agree upon and can be scientifically ‘proven’.

Well, I don’t think it is coming. I believe we are going to remain uncertain for quite some time. So, my theory takes another quite different approach than the medical model of disease. I believe that it is a condition of people who are highly sensitive, canaries in a coal mine (to coin author Elaine Aron, The Highly Sensitive Person), who develop an overwhelming empathy with others, who are high energy, highly intuitive, and who have withstood great emotional stresses in their lives. We (they) are now living with chronic anxiety.

Why is this condition reaching such great proportions of late? Watch the news! One either can become immune to the fear and anxiety that pervades our everyday lives or succumb to it. The result of these characteristics of the highly sensitive person ? An ultra aroused nervous system… a ‘dis-ease’, so to speak.  Furthermore, I believe that it is a societal cause and problem, particularly as it seems to affect primarily women, or it it that women report the characteristics of this syndrome more frequently? But… I give away too much. My book defends this position more fully than I can do here. While I cannot ‘prove’ such a theory, I am not willing to give up on this speculative cause; my 40+ years of living with and researching fibromyalgia gives me that right.

9 thoughts on “Fibromyalgia and the Chronic Confusion over Cause

  1. Tammy Elaine McPherson

    Great! You were reading my mind…was considering writing a similiar article after reading your theory, no lie! I’ll just refer my visitors to you and let you do it because you are doing an excellent job!

    You go girl!

    Thank you for visiting my little site. I am honored.

    Wishing you the best,
    Tammy Elaine
    The Ultimate Fibromyalgia Resource Center

  2. Pastor Adrienne Lawton

    I believe we cannot be separated by our parts from our whole. While it is true that certain individual functions can be detected such as a hormone sending a signal or a protein setting up a certain process in the body etc., we are still connected to our selves; within ourselves; mind, body and spirit. I believe there are a constellation of issues, always, that cause an occurrance of “dis-ease”. I absolutely agree with the neurological and bacterial, as well as outside abuse factors, for this disease. I’ve been fighting breast cancer for two years. Due to the fact that my left arm cannot be used because of the surgical removal of lymphnodes, my right arm got worn out; viens collapsed; hardened, etc. through chemo-therapy, it became necessary to insert an irrigation device in my chest for a CT Scan. It was removed the same day, however, I felt an itching and bacterial response in my neck that moved into my lymphnodes and inflamed them severely. My situation fell through the cracks because I had no Primary Care Physician. The feeling of a bacterial infection dispursed throughout my body from the 12th of Mar. to the 17th of Mar., 2007. I found myself unable to use my hands or any part of my body as I had in the past. If I leaned on my elbows, my bones felt as though they had no support from my muscles, whatsoever and were going to fly through my flesh at the shoulders; brushing my hands against anything caused excruciating pain; there is a burning in my muscles, includiing my eye muscles that feels like someone is standing on them and slowly squashing them, without the Hydrocodone in my system, which doesn’t last long. I waited four months to see a Primary Care Physician; she gave me preliminary blood tests that showed no signs of arthritis or muscle disease, and no signs of infection. I sweat from the acetamenophen in the Hydrocodone, as if I have an infection. I’ve been referred to the Stanford Pain Center for evaluation; Morphine patches have been mentioned. From the investigations that I’ve done, I’ve been able to identify and describe a syndrome of pain that has a fybromyalgia/arthritic feel, but has not been identified medically as such. I don’t want to take medicine for the rest of my life. I’m an advocate for the poor and homeless in downtown San Jose, CA. I want someone to tell me what’s wrong so it can be cured. You may think that’s asking too much but you seem to be a fighter too. I claim your healing with mine; and power for your dedicated work to continue for the benefit of others.

    God bless you and yours,
    Sister Adrienne

  3. Barbara Keddy Post author

    Dear Sister Adrienne:
    I am honored that you have visited my site. Your activism and involvement in the movement for social justice are awe inspiring. I am so sorry that after you have given so much to so many that you are suffering as you are. I feel particular sorrow over your struggle with breast cancer as I have lost so many dear friends to that dreaded disease. But, I also have friends who are survivors and I hope you are among them. The after effects you have suffered in your arms are horrific.
    I want to point out that I am not a medical doctor and cannot, nor do I ever, diagnose or recommend treatment. In the past I have only spoken with or formally interviewed those who already have a diagnosis of fibomyalgia or chronic fatigue. Therefore, I can speak to what I have learned, experienced and researched over many years about these conditions, but cannot make any suggestions regarding personal health dilemmas or medical decisions.
    My theory about the highly sensitive person and the impact this has had on the nervous system is just that…a theory. As you know theories are made to be tested and challenged. While I am personally wedded to this perspective of the over stimulated nervous system, there are many who will disagree, but many who already do concur. However, I do believe that rather than the soley bio-medical view of FMS/CFS, the one I put forward is worthy of serious consideration. My approach is one in which I integrate the biological/psychological/social/political issues that are involved in FMS/CFS, since they are complex syndromes (not diseases).
    I regret that I am unable to comment on your difficulty in waiting so long to see a Primary Care Physician. Given that our Canadian health care system differs so dramatically from yours in the US, I can only hope that you will soon receive some answers.
    I do have one suggestion however, and that is that you ask a medical expert directly to give you an examination based upon the ‘trigger points’ involved in fibromyalgia. Perhaps if you had a more clear cut diagnosis some of your frustrations might be resolved.
    Still, if you do have fibromyalgia I should warn you that in spite of some claims that there is a cure for fibromyalgia, this just is not accurate. The medications for fibromyalgia, Neurontin and Lyrica seem to help many with pain and having taken Neurontin I can attest to that fact as it has helped me, but not ‘cured’ me of fibromyalgia!
    Also it is noteworthy that people often develop fibromyalgia and chronic fatigue after a period of prolonged stress, surgery, an accident or an infection. It would appear that you have had three of the mentioned crises of late.
    May you find answers soon, receive relief from pain, and continue in the struggle for those who are disadvantaged.
    With respect and in solidarity,

  4. Linda Breschini

    I will be 65 on June 26, 2008. I have suffered with fibromyalgia for the past 32 years, and I KNOW when it began, without a single doubt at all. But let’s back up for a moment…..

    When I was 18 years old, I graduated from high school and began my first job as a secretary for a law firm in Cleveland, Ohio. Within a few months of starting that position, I developed a very severe and debilitating case of mononucleosis. I became so ill that I was in bed around the clock and my mother even had to help me up to get to the bathroom. I eventually had to quit my job after being out for two straight months.

    When I was 22, I went through an extremely traumatic experience which caused me untold stress and grief. However, I was determined to move on with my life and not let what had happened to me hamper me from living a life with some amount of joy in the future.

    I got married at the age of 25 to the love of my life (and by the way, we just celebrated our 40th wedding anniversary on May 18, 2008 and we are more in love than ever!) and we began to build a wonderful life together. We had our first child, Andrew, in 1971, and when Andy was 3 months old, I discovered that I was pregnant again. Our daughter, Jenny was born in 1972, just five days before Andy was to turn one. We were a marvelously happy family. My husband was in the Coast Guard and we lived in Gulfport, Mississippi. I became pregnant again and had Matthew in 1976. This is where the story REALLY begins. We lived 26 miles from the Air Force Base where Matt was to be delivered, and due to a series of events that caused us to be sent home because “I wasn’t going to deliver that night” according to one of the higher ranking doctors, we ended up at home when I went into hard labor. By the time we raced to get back to the hospital, instead of having me deliver Matthew naturally, they gave me a spinal just minutes before he was born. I followed all of their directions about laying flat for a long time, but many hours later when the surgeon came to my room to see how I was doing, I was laying in my bed crying. He thought I was sad because of the birth, but no . . . my left hip was throbbing in such terrible pain that I almost couldn’t stand it! He said, “Well, maybe you were bumped when they transferred you from the labor table to the delivery table” but I knew that wasn’t it! Matthew was born on July 29, 1976, and I have never been out of pain from that day until this! My hips are both so bad that I can’t even sleep on a bed but had to have my husband fix up an old couch so that I could try to sleep without having any pressure on my hips.

    Then, 16 years ago, I was diagnosed with breast cancer. I had a lumpectomy and went through chemo and radiation, and Praise the Lord….I am still here, and have lived long enough to see seven beautiful grandchildren born! And oh yes….after Matthew, I had one more baby….Paul was born in 1983.

    Last year, my 92-year-old mother died of ovarian cancer. However, I was able to obtain a reverse mortgage on our family home and Mom died there in peace in the family room, looking out over the back yard that she loved so well.

    Three years ago, I was diagnosed with a thyroid so low that it came back .032 when tested, which is barely even recognizable as having any thyroid output at all! Then, I was sent to a rheumatologist who had my entire body x-rayed and it came back showing that I have osteoarthritis in every single area of my body that it’s possible to have it. I also have osteopenia and multiple chemical sensitivity.

    I know it sounds like I am a walking mess, but I love life so much and am still serving the Lord with all of the abilities that He has given to me, and although I hurt from the moment I get up until I close my eyes at night, I STILL LOVE LIFE TO THE FULLEST and am just thrilled to be alive and enjoying every day with my family, my grandchildren, and my God.

    I have been taking acetaminophen with codeine (Tylenol 3) for at least 12 years now. I started out just taking two a day, and over a period of time, have had to increase my dosage to 3 pills 3 times a day. However, it does really help me to get through my day without any side effects, but still lowers my pain to a tolerable state.

    I know this is a very long “Reply” but I have always been interested in doing research that would lead to some kind of knowledge of where fibro really comes from. I have been in fibro groups and have learned that MANY, MANY fibro sufferers have very low thyroid numbers, and also, many of them had mono at some time in their life. I am convinced that the spinal that I was given for Matthew’s delivery was the deciding moment in my life that triggered my fibromyalgia. Just like the chicken pox virus can lie dormant in a person’s body and either NEVER be a problem in their life, OR….at some point, can emerge as shingles later on in life. I believe that there is always a catalyst that triggers the fibro pain response in the nervous system, and whether it stems from a “fender bender” in which a person should have gotten better but never did, or from a terrible stressful event that caused the person to feel like they were going through a bad case of the old-time “flu” but it just got worse and worse and never went away….or a spinal given in the delivery room that somehow “went wrong” and triggered my nervous system to suffer a complete blitz….whatever it is, it MOST CERTAINLY is not in our head. What kind of person would get up every morning and say to themselves, “You know….I think I’m just going to feel really bad today and hurt all over!” That’s the most insane idea I’ve ever heard of!!!

    I have accepted the fact that I will have fibromyalgia for the rest of my life….but….IT WILL NOT HAVE ME!!! I get down on the floor and play with my grandchildren, even when I know that I will pay for it later when I go home or they go home!!! I refuse to live like a sad, sore old lady when I can determine that life is mine, and I am going to live it until I go to the mansion that God has prepared for me in Heaven!

    Thanks for taking the time to read my story. Each of ours is different, but each is important, because when you put enough stories together….you just may learn the answer!


    Linda Breschini

  5. Barbara Keddy Post author

    Dear Linda:
    Thank you for sharing your story with us. I am equally as grateful to the women who shared their stories which are found in my book. Our experiences are not as different as we might think. You are a brave woman… and most 60+ women are wonderful too 🙂
    It is true that many post menopausal women have hypothyroidism. But, whether or not there is a connection to fibromyalgia remains to be seen as millions of pre and post menopausal women and many men have thyroid problems and do not have fibromyalgia. More questions than answers once again!
    Enjoy those grandchildren!
    Best wishes,

  6. katrice

    I have suffered from fibromyalgia since I was a teenager. I am now 34 and was diagnosed about four years ago. I developed pericarditis about three years ago, which has reoccurred two-three times a year. The cause of pericarditis is also not known, but it is suspected that it can be caused by diseases of the connective tissue. Have you found any links between the two conditions?

  7. Barbara Keddy Post author

    Hi Katrice: I have not heard of a relationship between the two! Maybe some of the readers have and could let us know if they have any information about this. I often wonder if all of these conditions like thyroid problems or in your case pericarditis are just coincidental, or the after effects of prolonged neurological overload? We have to keep on exploring!
    Take good care of that heart,

  8. Ursula

    It’s interesting as I have just found this article having searched for a possible link between Fibromyalgia and Thyroid Disorder.

    (Let’s face it, almost all of my medical symptoms are Fibromyalgia symptoms, so I have grown accustomed to searching for a possible link before my specialist appointments ?).

    I am partly pleased reading that there is a good chance of it not being connected, and partly anxious now, of the specialist appointment.

    I have a visible goitre.

    The last thing I want is another diagnosis of something like an autoimmune disease on top of everything else. ?

    But… fingers crossed it might be nothing much to worry about.

  9. Barbara Keddy Post author

    Dear Ursula: I have been reviewing comments made over the years and feel as though I know you personally! I have had hypothyroid for over 30 years and interestingly enough keep requiring less of a dosage as I age. Many with fibro find that several systems begin to become less resilient as we age with fibromyalgia. I don’t think it is a cause as much as a result.
    Please let me know what the specialist says about all this. If it is hypothyroid you have well that is relatively easy taking a small thyroid pill every day.
    Best wishes,

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