FIBROMYALGIA AND PTSD (Is there healing?) © 2003 Theresa Lorraine Experts in the field of Fibromyalgia syndrome (FMS) and Chronic Fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS. There is also a growing body of research linking Fibromyalgia and PTSD. While the cause of Fibromyalgia remains unknown, the condition often occurs following physical trauma -- such as an illness or injury -- which may act as a trigger. Peter Roy-Byrne, MD, Chief of psychiatry at Seattle's Harborview Medical Center believes that patients with Fibromyalgia should be evaluated for PTSD and PTSD patients should also be evaluated for chronic pain. "Even though the pharmacological treatment of these conditions may be similar, the behavioral and cognitive approaches to treatment may differ in patients with both," he says. I woke up this morning with symptoms that would indicate a diagnosis of flu. My right shoulder is aching clear down into my back and rib cage, my right knee aches into the center of my soul. My lower back pops and cracks as I rise to a sitting position. That would be hard enough but I also feel "foggy"; there seems to be a layer of confusion between me and my reason and every muscle burns, objecting to the very act of climbing out of the bed. No, I'm not hung over, I don't have the flu and this is not the first time I've gotten up feeling this way. This is my morning norm. Some mornings it's worse. Today is a good day. I have Fibromyalgia and Ehlers-Danlos syndrome and I'm also 52, so there is quite a lot of arthritis showing up on my bone scan. In addition to the "physical" diagnosis I carry, I also struggle with PTSD. I feel overwhelmed most of the time; afraid to leave my house without one of my kids or my husband. Decisions and choices are becoming more and more difficult to sort through and the fact that I'm divided into "systems" and see a different doctor for each system, keeps me busy sitting in waiting rooms and telling my story over and over and over again, thus making everything seem bigger and bigger and bigger. I stumble to the bathroom, then on to the kitchen where I make up a cup of coffee. Exhausted from the effort, I'm now sitting at my computer trying to put together the basics of a chapter on "Fibromyalgia; It's Causes and Treatments" . According to the National Fibromyalgia Association, Fibromyalgia is a "chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances". (http://www.fmaware.org/fminfo/brochure.htm) The underlying cause of Fibromyalgia (FM) is still a mystery but there is plenty of research going on in many areas in relationship to this disorder. Many researchers agree that FMS is a disorder of central processing with neuroendocrine /neurotransmitter dysregulation. In other words Fibromyalgia is a pain amplification syndrome. There are many studies to suggest that FMS patients have MANY physiological abnormalities: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function. Fibromyalgia is seen in medical literature as far back at the early 17th century (early 1600's for those of you having a foggy day) and there are still physicians out there who don't believe in it preferring to send patients presenting with these vague, multiple symptoms to counselors and psychiatrists for their "hypochondria". This is particularly cruel to those who believe the referring doctor and spend years in therapy trying to cure a physical disorder with mental gymnastics only to find it can't be done. I've often thought, lately, how much kinder it would have been to have a counselor say to me, "Yes, your experiences in this life have broken you in ways we don't understand yet, and therefore can't fix BUT, there are ways for you to cope. Let's work on that". The trouble is, they all believed in the therapy they were prescribing and the doctors who sent me there didn't have any physical evidence with which to support a physical diagnosis. They were, as I was, doing the best they could with the information they had at the time. The word Fibromyalgia was first coined in 1976, derived from the Latin roots "fibro" "my" "al" "gia". "fibro" means fibrous tissue, "my" means muscles, "al" means pain and "gia" means condition of, so we have "the condition of muscle and fibrous tissue pain". Recent research takes this disorder out of the muscles, however and puts it into the region of the brain and nervous system where there have been found endocrine, metabolic, immunoloregulatory irregularities thus bringing us to the conclusion that Fibromyalgia is a central processing disorder rather than a muscle disorder. It was only in in 1987 that the American Medical Association (AMA) acknowledged fibromyalgia as a true illness and a potential cause of disability. In researching for this paper it seems the phrase "there is some evidence" was the most prevalent among them all. There is no definitive cause for Fibromyalgia as yet supported by medical research. Because there is no definitive cause, there is also no definitive treatment. It seems to be up to each one of us to try everything and find something that makes life bearable. Unless it's from a physical trauma one can remember and site as the "beginning of all this", chronic pain creeps up on a person. It's usually not something you wake up with and say to yourself, "My gosh I hurt, I'd better see a doctor". In my own case, I began waking up with leg aches at night when I was four. My mother did take me to a doctor who diagnosed flat feet and growing pains. The pain did abate, although the orthopedic shoes I was required to wear may just have scarred me for life. Pain became a way of life for me gradually. There was always a reason for the intense pain although sometimes that reason given to me was hypochondria, and so I went from episode to episode thinking I was a bit neurotic, maybe a little delicate and had a low threshold for pain. The exhaustion crept up on me too. There was no morning I woke up exhausted and found it was all that different from the life I'd been leading. It came in cycles causing many of my numerous counselors to toy with the idea of Bi-polar disorder (manic-depressive disease in those days) only to toss it out when they found I had no manic episodes in my past. Sometimes I was just too tired to: pay the bills, go to school, meet my committee obligations, do the dishes. I honestly thought I had a lazy streak and found I unconsciously became a person who did as much as I could to prepare for the "hard times". I never put off 'til tomorrow what could be done today, in case "tomorrow it would be too hard". I kept my homes as clean as I could, leading some to diagnose me as obsessive compulsive, but can you imagine if the house would be dirty at the beginning of a period of bone wearying exhaustion? It would be too filthy to live in by the time I finally felt better. When I was 25, I finally told a counselor about the sexual abuse I'd experienced over a long period of time in my youth. He told me that explained the periods of exhaustion and told me I could fully recover and be a "normal" person if I would just participate in some very intense therapy. So I did. The periods of exhaustion didn't go away, in fact they got more frequent and the pain periods followed the same pattern. I truly thought, I must be very broken that I was doing all I was asked to do and more and still was not healing. It began to feel as if instead of being a "survivor", I was being victimized for a second time and as a matter of fact I'm beginning to see that I was. To be fair to the therapists I worked with though, they were doing the best they could with the information they had at the time. I began therapy for my yet as unnamed PTSD in 1976, the year the word Fibromyalgia was born and back in a time when only war veterans were thought to experience PTSD and it was called shell shock. The link between the two was years in the future. And the link between the severity of both and genetic predisposition is just now beginning to be explored. PTSD is a relatively new diagnostic category in the history of psychology. It first appeared in 1980 in the internationally accepted authority on PTSD, the DSM (Diagnostic and Statistical Manual of the American Psychological Association), 3rd Edition (APA 1980). At that time the DSM had a limited view of what could cause PTSD, defining it as developing from an experience that anyone would find traumatic, leaving no room for individual perception or experience of an event. This definition was expanded when the DSM III was revised in 1987, and the DSM IV (APA 1994) provides even broader criteria. The currently accepted definition as presented in the DSM IV accepts that PTSD develops in response to events that are threatening to life or bodily integrity, witnessing threatening or deadly events, and hearing of violence to or the unexpected or violent death of close associates. Events that could qualify as traumatic, according to the DSM IV, include: combat, sexual and physical assault, being held hostage or imprisoned, terrorism, torture, natural and man made disasters, accidents, and receiving a diagnosis of a life threatening illness. PTSD can also develop in children who have experienced sexual molestation, even if this is not violent or life-threatening. The DSM IV adds, "The disorder may be especially severe or long lasting when the stressor is of human design (e.g. torture, rape)." (APA 1994) A research team led by Jens Gaab, Ph.D., of the Center for Psychobiological and Psychosomatic Research at the University of Trier in Trier, Germany; and the Institute of Psychology at the University of Zürich in Switzerland are proposing that chronic fatigue syndrome may be the result of subtle alterations of a hormonal stress response system called the HPA axis. A smoothly functioning hypothalamus-pituitary-adrenal, or HPA, axis helps the body remain stable under physiological and psychological stress through the actions of three hormones. First, the brain portion called the hypothalamus secretes a hormone that stimulates the pituitary gland to secrete a second hormone. This second hormone causes the adrenal glands to create cortisol. In a different study, Boston researchers discovered that the HPA axis in women with fibromyalgia was damaged. As a result, it does not properly regulate production of cortisol, a hormone with widespread effects throughout the body. Impairment of these neuroendocrine systems may explain the [underlying body-system malfunctions] of fibromyalgia as well as the overlap in signs and symptoms between fibromyalgia and related disorders," write Gail K. Adler, MD, PhD, and fellow Harvard Medical School researchers. The study was conducted at Brigham & Women's Hospital, affiliated with Harvard, and published in a recent issue of the American Journal of Medicine. According to Kathleen Brady, MD, PhD of the Medical University of South Carolina, Charleston, in individuals with PTSD, the HPA axis response is dysregulated. Individuals with PTSD have low circulating levels of cortisol. In one study of motor vehicle accident victims, low cortisol levels immediately after the accident were associated with the development of PTSD and high cortisol levels were associated with the development of depression. Martin Teicher, M.D., Ph.D. Teicher is a developmental neuropsychiatrist and director of the Developmental Biopsychiatry Research Program at McLean Hospital in Belmont, Mass. and his colleagues have held the hypothesis for some time that the psychological trauma resulting from childhood physical abuse induces a cascade of physiological effects, including changes in hormones and neurotransmitters that mediate development in vulnerable brain regions. What’s more, they have conducted a number of studies that support the hypothesis. Dr. Teicher tells us if childhood maltreatment exerts enduring negative effects on the developing brain, fundamentally altering one’s mental capacity and personality, it may be possible to compensate for these abnormalities—to succeed in spite of them—but it is doubtful that they can actually be reversed in adulthood." (http://psych.org/pnews/01-03-02/abuse.html : March 02, 2001Clinical & Research News Psychological Abuse May Cause Changes in Brain) Alright then, we have a link between chronic fatigue syndrome, fibromyalgia and post traumatic stress syndrome. Why then does not everyone who has a traumatic experience or even a traumatic series of events develop PTSD and CFS/FMS? According to Jon-Kar Zubieta and his team at the University of Michigan and The National Institute of Alcohol and Alcoholism, Rocksville, Maryland there is a genetic predisposition for the way we experience pain. The COMT gene exists in two forms which make copies differing by a single amino acid only either valine or methionine. People with a particularly active form of COMT were hardier, whereas people with a less active form of COMT felt pain more acutely. Those with both forms of the gene, one from each parent, experienced intermediate pain. According to Karaston C. Koenen PhD of the National Center for PTSD and Boston University Medical Center, twin studies provide the strongest evidence thus far for genetic influences on risk for both trauma exposure and the development of PTSD. In her A Brief Introduction to Genetic Research in PTSD Dr. Koenen sites Randent et. al. (2001) who proposes that genes involved in the endophenotypes of HPA axis dysregulation, physiology of hyperarousal and acoustic startle response might influence the development of PTSD. Roy Lubit, MD, PhD, Assistant Professor, Department of Psychiatry, Saint Vincent's Hospital of Manhattan tell us the studies of adults who were sexually or physically abused as children demonstrate significantly higher rates of PTSD (72-100%) than studies of children who were abused (21-55%). From these statistics he postulates the full impact of abuse may not be experienced until a child reaches adulthood, engages in adult relationships and responsibilities, and develops more sophisticated cognitive capabilities. I believe fibromyalgia/chronic fatigue syndrome DOES have an identifiable cause. I believe it's the outward or physical manifestation of PTSD and that the medical community in concert with the psychological community had been inadvertently made it worse for most of us. I believe that the promise of vibrant health if we will just relive all that trauma actually made us worse. I agree with Dr. Teicher, Dr. Teicher tells us if childhood maltreatment exerts enduring negative effects on the developing brain, fundamentally altering one’s mental capacity and personality, it may be possible to compensate for these abnormalities—to succeed in spite of them—but it is doubtful that they can actually be reversed in adulthood. " I think the re-victimization of the victim by the health system engenders a more intense experience of PTSD and therefore CFS/FMS. There are many ways in which the health system re-victimizes, even today. The first is the doctors who label one's disorders psychosomatic or hypochondria because there are no laboratory findings. I can remember the doctor looking meaningfully at my mother while he was saying, "You just need more sleep". The headaches I was having weren't because I wasn't getting enough sleep and they weren't a bid for attention. They were real and disabling and asking for help to get rid of them only got me a bit of humiliation and no help at all. This went on for years (about 45 years as a matter of fact) and is still happening with some doctors I have presently. My gastro recently indicated that he didn't believe Fibromyalgia was a "real disease" and said right out loud, "Well, you didn't really have a work up for Fibromyalgia did you?". The next round of victimization came from the counselors I saw. I went to each counselor determined to be healthy and happy and a poster child for incest survivor recovery. I did the homework. I read the books. I practiced the new skills in my daily life. I meditated, I engaged in controlled rage relief, I talk about the abuse itself; I relived it and I wrote it all down. I didn't get well. Now I had proof there was something terribly broken inside me. "They" kept telling me one could get "well". "They" insisted it was only a matter of time and effort But I didn't. In fact, as time went on, I felt worse; less in control of my life, less healthy. I had more "imaginary" illness that no one could explain and no one could fix. I got sent to "shrinks" more often. I looked harder and harder for the "answer". The harder, I looked the worse I felt about me and about life in general. Add to that I revictimized myself when I married a man who is more into power than he is into love and you have the perfect paradigm for PTSD complex with fibromyalgia. It's time for the approach to complex PTSD to change from one of "You can get well and be well for life", to "I am truly sorry you have been through this. You've been changed. You can't go back to who you were but you can go on to be who you are with some tools and coping skills." I had a counselor like that. I found her the year I was 49. That means for 41 years I struggled to be someone there was no way on earth I could be. Corinne helped me restructure my life so I didn't wear myself out trying to be "perfect" or at least appear that way anymore. She helped me find coping strategies for the pain and exhaustion I felt no matter how careful I was with my schedule. She reminded me weekly, that what I thought and felt was valid and that I had control over my choices. It seems silly that one would have to be reminded that thoughts and feelings were valid or that one must take care of oneself, but I was raised to believe my needs came last after everyone else's, that I wasn't very smart and that my physical anomalies were just hysteria. I'm learning to do the validation for myself. I learning to remind myself on a regular basis that I'm a real person, and that it's ok to be who I am now; that it's not necessary to be the person someone else wants me to be, even if that someone else is a therapist. I try to keep my schedule flexible enough to accommodate whatever physical needs come up and I try to be patient with my body making my choices for me. I would give the world if the medical and psychiatric world would join me in this effort. I would give the world if my doctors would just recognize that the pain and the exhaustion is real and that as a general rule medications don't make it better. Medications only make it harder to cope. I envy the paraplegic. He is damaged and no one tries to talk him out of it. No one tells him that if he'll just meditate, think positively, write out the experience that made him a paraplegic and participate in group therapy, he'll eventually walk again. All HIS therapy is focused on helping him cope with something irreversible. He's given tools (wheelchair, disabled sticker, medical help) in order to function. Those of us with fibromyalgia are told to walk and get rest and "oh by the way" try this new med. Those of us with PTSD are told that if we just relive the trauma often enough we'll be desensitized. And there are very few in the world who will even discuss the possibility that fibromyalgia and PTSD are so closely related as to be one and the same thing; one the physical manifestation and one the emotional. The paraplegic doesn't cope with social stigma. He can talk about his life as one wheelchair bound. Who among us can talk about being disabled by PTSD? My experience is being told that it's time for me to get over it. It's old news. Research is only just beginning in the neurobiology of PTSD and FMS/CFS. Some day there may be a cure for us. Someday there may be a cure for paraplegia. Until there is a cure for PTSD/CFS/FMS I would like to be treated with the same dignity and respect the paraplegic receives. I, too, would like to be treated like a good person to whom something bad happened. I would like to be cheered on for my progress even though it doesn't meet the standards set for "normal" people in the world. I would like to be recognized for the steps forward I've taken and even just for the very fact that I've survived. I would no longer wish to be told that "If I just..............., I could be well" and since I'm not, I must not want to be. I would not ever like to be asked again what "payoff" I receive for being "sick". No one would ever ask a paraplegic that and yet, I'm just as disabled. .......... it's just that it's invisible. An overview of the findings by Teicher and his colleagues, as well as of the implications of these findings for psychiatry, was published in the fall 2000 issue of Cerebrum. In this overview, Teicher wrote: "I hope that new understanding of childhood abuse’s impact on the brain will lead to new ideas for treatment." Actually, it has!